tag:blogger.com,1999:blog-12231933815793810752024-03-13T07:33:18.244-07:00Understanding LuOur family's journey in living with Rett Syndrome.
Anonymoushttp://www.blogger.com/profile/09668216042641622048noreply@blogger.comBlogger186125tag:blogger.com,1999:blog-1223193381579381075.post-76537971044760200792016-05-02T06:13:00.001-07:002016-05-04T13:01:33.053-07:00What You Don't SeeLast week Lu and I went to Lowes to buy some perrenial flowers for a little space we are creating in the yard to attract tiny critters. The day we went to Lowes was not an incredibly sunny day, so a little overcast, and the temperature was mild, probably not 70. A perfect day for outside plant shopping. But, in spite of those comfortable conditions, Lu gradually wilted over the half hour of time that we spent browsing around the garden section. When I say "wilt", I mean she gets sleepy looking, her head droops, her face gets pink. She just isn't very engaged in what's going on around her. So we went to check out and the cashier made a comment about how cool her "iPad" was. I politely told her it wasn't an iPad, but a communication device that enables Lu to talk with us. The cashier then very respectfully looked at Lu and asked her name. Lu didn't answer because she was wilting, and frankly because she isn't quite to the level yet where she easily or quickly responds to a direct question like that, and definitely not if it's being asked by a stranger. And so when she didn't answer, and I answered for her, from that point on, the cashier spoke no more to her. We checked out, and she helped us out to the car with our bags, which was nice.<div><br></div><div>Then, when I turned to Lu to unbuckle her from her wheelchair and put her in her car seat, I suddenly saw what that cashier saw: a severely disabled little girl who couldn't even tell her her name. She saw a little girl drooling on her bib, struggling to hold her head up, flushed from the mild spring temperature, and half asleep...and suddenly I laughed! I was so surprised by my reaction that I had to stop and think for a moment as to why I found that assessment so funny. It's really not funny. It's not funny to be aware that sometimes when people look at my daughter, they think they see an empty vessel. I had this same feeling a few months ago while I was feeding Lu her lunch at Valley Dairy, and I could feel eyes on us at times. However, I thought to myself how ironic it is that people might just see me feeding her and think she is helpless, when they are not aware that she had ordered her meal all by herself with her Tobii, when the waitress asked her what she wanted. And, actually, we were at Valley Dairy because she had asked if we could go there. </div><div><br></div><div>But back to the laughter. It is not funny that in split seconds Lucy, and other people who may have similar physical characteristics, are sometimes disregarded, based simply on their outside appearance. It isn't funny, but I guess maybe I was having a realization that made me feel so proud; an understanding that we know how much, much more is inside of Lucy than just what people see on the outside. And because we know that, and because we work to learn more and more each day, and we never stop helping Lu learn how to express herself, I know without a doubt that as she grows, she will learn how to let the world know what she's all about. She will make sure that even if she has saliva running down her chin, or her mom is feeding her, or her body is misbehaving, that people will know she is in there, and that she is not to be overlooked. It just takes a lot of work on everybody's part to make continuous progress in her communication abilities so she can let he world know who she is.</div><div><br></div><div>And here's two great stories to illustrate her current level of progress:</div><div><br></div><div>Last weekend we were having lunch with my in-laws and Lu said with her Tobii: "Can I please, straw?" Then, "I, straw". She hasn't used a straw in a long time, so we immediately began working again on her using one. We rigged up a straw with a one-way valve that we had from a few years ago and put a soft silicone straw from a sippy cup on it so it wouldn't hurt her mouth:</div><div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-5zkK6xXtQTA/VypVGCJxwjI/AAAAAAAAEOs/jshxAHBqIyM/s640/blogger-image-1433956259.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-5zkK6xXtQTA/VypVGCJxwjI/AAAAAAAAEOs/jshxAHBqIyM/s640/blogger-image-1433956259.jpg"></a></div><br></div><div><br></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">The next day, at supper, we were eating taco salads, and Lu ate about a quarter of her puréed salad, and then started making a face like something was wrong. I was trying to gather to tell me if she didn't like it, and she wasn't really responding, but kept looking distressed. So as Chad and I were discussing what we should do next, and if she had eaten enough, or if she needed some chocolate milk, I suddenly heard her say "Feet!" with her Tobii. We immediately looked down at her feet to discover that her right foot was stuck behind her footrest! We fixed it, and she happily finished her supper! The way Lucy uses her PODD on her Tobii is she has to select the word she wants to use, it doesn't speak it right away, it just goes up into her message bar, and then she has to choose the "speak message" button to say it out loud. She went through that whole process to tell us her foot was stuck. I don't know if it was her discomfort, or the possibility of not getting to finish her supper, or a combination of both, but she was able to get her point across right when she needed to. It was fabulous! </span></div><div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-w35i78ZDyxE/VypVClvJHYI/AAAAAAAAEOo/bQKNdTzUpFs/s640/blogger-image--1728084636.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-w35i78ZDyxE/VypVClvJHYI/AAAAAAAAEOo/bQKNdTzUpFs/s640/blogger-image--1728084636.jpg"></a></div><div class="separator" style="clear: both;">I've said this before, and I'll say it again, and again, and again: I don't believe Lucy is an anomaly. I believe all girls with Rett, and all nonverbal people in general, can learn some form of communication. The key is how it is presented to them, and the beliefs of the people who are responsible for supporting them and their efforts. If their support system does not believe they have something to say, then they might believe that too. I know Lucy always has something to say. I know her head is full of thoughts, and hopes, and dreams, and probably a complaint or a gripe here and there. I want to hear them all! I get so upset when I hear another parent comment that they wish they new what their nonverbal child was thinking...teach them how to tell you! It is their right as human beings to be taught an alternative means of communication! </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">We are so proud of Lucy all of the time for her endless patience with herself and others. I don't think she worries about how the world views her when they only see what's on the outside, because she knows her Daddy and I don't give a damn what they think either. We know what she is made of and we know she will let the world know too, by and by, as she can. </div><br></div><div><br></div><div><br><div><br></div></div>Anonymoushttp://www.blogger.com/profile/09668216042641622048noreply@blogger.com2tag:blogger.com,1999:blog-1223193381579381075.post-90393759160750929372016-03-28T06:00:00.001-07:002016-03-28T06:40:29.235-07:00The moving targetDr. Sasha always reminds us that Rett Syndrome is a moving target, meaning it changes all of the time, without warning. For example one day Lucy did not have seizures, and then the next day, without warning, she did. Once upon a time she had floppy muscle tone, and then one day it started getting tighter and her body started arching backward all...the...time. One day she could turn the pages of books, and then she couldn't. Unfortunately, the changes that occur always seem to be taking from her...until recently!<div><br></div><div>The other day I was folding clothes behind Lu while she had a feed and watched a movie. On her lap I had sat her singing Elsa doll and suddenly, it was singing! Lucy had managed to position her hands so she could press the button on the front of Elsa to make her sing! And then when she realized what she was doing, she did it over and over again and was so clearly excited and tickled with herself! I don't honestly know how long it has been since she was able to activate a toy like that all by herself.</div><div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-s5e4MHmk0H8/Vvk0RV9NcMI/AAAAAAAAENs/CZ5N18vyOUA/s640/blogger-image-1665196213.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-s5e4MHmk0H8/Vvk0RV9NcMI/AAAAAAAAENs/CZ5N18vyOUA/s640/blogger-image-1665196213.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">When I mentioned above that Lucy's body started arching back, this pretty drastically effected her ability to sit unassisted. That was almost three years ago and in that time she has only been able to sit up on her own for seconds at a time, because her body just wouldn't allow it. But then a few weeks ago she was sitting for her PT, and doing a really excellent job! So, her super rad Dad started a sitting practice session each day while they wait for supper to be ready. And now, after three years of hardly any unassisted sitting, Lucy May has been sitting for minutes at a time, all by herself! </div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-llzP65ooAxQ/Vvk0MFTk_DI/AAAAAAAAENg/E5yh-gPDBRY/s640/blogger-image-522712343.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-llzP65ooAxQ/Vvk0MFTk_DI/AAAAAAAAENg/E5yh-gPDBRY/s640/blogger-image-522712343.jpg"></a></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-a_PPfQo7MqI/Vvk0P2-wibI/AAAAAAAAENo/Qaxnfte8ukU/s640/blogger-image--681566545.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-a_PPfQo7MqI/Vvk0P2-wibI/AAAAAAAAENo/Qaxnfte8ukU/s640/blogger-image--681566545.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">And a couple of months ago Lu started being able to sometimes stand up from sitting, with little to no assistance, just holding onto our hands! This is super hard work for her and her body. Again, it was Daddy who first got this out of her. I think he is the best PT she will ever have, and he's not even a PT! </div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-LDK0kDeE21Q/Vvk0OFzoqVI/AAAAAAAAENk/X2xg6SrBmn0/s640/blogger-image-1522903668.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-LDK0kDeE21Q/Vvk0OFzoqVI/AAAAAAAAENk/X2xg6SrBmn0/s640/blogger-image-1522903668.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-ZjX3CTKsvjo/Vvk0S2GfDaI/AAAAAAAAENw/SN3ZDVJudsE/s640/blogger-image--1499754316.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-ZjX3CTKsvjo/Vvk0S2GfDaI/AAAAAAAAENw/SN3ZDVJudsE/s640/blogger-image--1499754316.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">The only downside to all of these wonderful new/old skills that Lu has acquired is the "moving target" part. For the past few years a lot of symptoms have either presented themselves for the first time, or have taken skills away from Lu, and our biggest consolation, our hopeful mantra is that "Rett is a moving target. It's always changing." And so we are often waiting for something that is making Lu's life harder to change, or go away, because eventually, it might. Not all things of course, and we know that. But now here we are with some changes in her body, and how Rett is presenting itself, that are wonderful! She seems stronger, and like she has gained a little control of her body back, and now instead of waiting anxiously for something to change so she will feel better, I am anxiously hoping that if anything does change it will only continue to be more positive changes. Unfortunately, upon being introduced to Rett Syndrome, it quickly establishes itself as cruel, relentless, and not something that tends to get easier to live with as time goes on. So, I guess I want to feel optimistic about these changes, but at the same time I know how quickly Rett can take from Lu, and that is so hard to swallow. HOWEVER, while I feel anxious, we will still keep working hard on what she has been excelling at, and looking for new things that her body might be capable of doing that she hasn't been able to do for awhile. Day by day is how we live here, and the days lately have been treating us pretty well.</div><div class="separator" style="clear: both;"><br></div><br></div><br></div><br></div></div></div><br></div><br></div><br></div><div><br></div>Anonymoushttp://www.blogger.com/profile/09668216042641622048noreply@blogger.com4tag:blogger.com,1999:blog-1223193381579381075.post-29238990173803781792016-03-03T06:26:00.001-08:002016-03-03T11:09:54.069-08:00Four Years Gone<div class="separator" style="clear: both;">
<a href="https://lh3.googleusercontent.com/-AJsLCbe77qI/VthJf8gafiI/AAAAAAAAEM8/G_vGVdXhcAI/s640/blogger-image-1000231377.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-AJsLCbe77qI/VthJf8gafiI/AAAAAAAAEM8/G_vGVdXhcAI/s640/blogger-image-1000231377.jpg" /></a></div>
<div class="separator" style="clear: both;">
This was taken right around the day we received the phone call that Lu had Rett Syndrome. The anniversary of the date of the call just passed, it was February 27th. And this was the first year since we received the diagnosis that the day we met with Dr. Coffman has existed, because it was February 29th. These days were more prominent to me in the first year or two. The 29th will always be a day where I bristle with a combination of rage and pride; rage at what Dr. Coffman told us Lucy was NOT going to do, and pride at all that she has learned to do so far, instead. This was the first year that I really had a talk with her about Dr. Coffman and how wrong he was, and how wrong many people are not only about children with Rett, but people with complex diagnoses in general. </div>
<div class="separator" style="clear: both;">
<br /></div>
<div class="separator" style="clear: both;">
And then last night I dreamt that Lu was talking, with her mouth, and everything was just coming out like she had always been able to. In the dream it was just like, "oh, ok Lucy can talk now! Of course she can!" I wonder if in the dream we were so nonchalant about it either because she already does talk to us all day, just not with her mouth, and/or because I believe it is a given that someday she will be able to speak, when there is a treatment or a cure. </div>
<div class="separator" style="clear: both;">
<br /></div>
<div class="separator" style="clear: both;">
The thing is, when I am awake and not dreaming, I spend very little time thinking about treatments and cures, and I've talked about why before. However, every single day I hope for Lucy to stay healthy, to get stronger, to learn new things, for her spine to not curve more, and on and on. Chad and I don't live in the shadow of the possibility of a cure because that hasn't happened yet. And while there are so many exciting things going on in the scientific world in regard to treatments and a cure, there is no guarantee that it is going to happen, so we just focus on how to keep Lucy as healthy, and happy as possible, and how to prepare her for life and the world, even if she always has Rett Syndrome. </div>
<div class="separator" style="clear: both;">
<br /></div>
<div class="separator" style="clear: both;">
We believe this:</div>
<div class="separator" style="clear: both;">
</div>
<div class="separator" style="clear: both;">
</div>
<div class="separator" style="clear: both;">
<a href="https://lh3.googleusercontent.com/-c-uJav-y3i8/VthTMkQToEI/AAAAAAAAENQ/jf8hrmd1ODs/s640/blogger-image--1591752237.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-c-uJav-y3i8/VthTMkQToEI/AAAAAAAAENQ/jf8hrmd1ODs/s640/blogger-image--1591752237.jpg" /></a>-Dr. Seuss</div>
<div class="separator" style="clear: both;">
<br /></div>
<div class="separator" style="clear: both;">
And this:</div>
<div class="separator" style="clear: both;">
</div>
<div class="separator" style="clear: both;">
<a href="https://lh3.googleusercontent.com/-WRmLsSO0dGY/VthTJsFOWII/AAAAAAAAENM/XYPzzXx8a84/s640/blogger-image--978214444.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-WRmLsSO0dGY/VthTJsFOWII/AAAAAAAAENM/XYPzzXx8a84/s640/blogger-image--978214444.jpg" /></a></div>
<div class="separator" style="clear: both;">
<br /></div>
<div class="separator" style="clear: both;">
She is who she is and we worship her just how she is. We would take away all of her difficulties in a white hot instant, immediately, without a second thought, if that option was ever presented to us. But, Chad and I just naturally focus on who she is, not who we thought she was going to be. Lately, more people than usual have asked me if there are any new developments in the trials for treatments and medications. I know with 100% certainty that these are well-meaning inquiries. I know that our family and friends just want Lucy's life to be easier for her. They want to see her "get better", and get to live a more "normal" life. I know they just love her, and us. But...I instantly, and I suppose irrationally, become defensive inside. I answer politely with what they want to know, but on the inside my heart says, " Why? Isn't she good enough for you the way she is?" And I know full well that's not what they are saying, but it's just my gut reaction. </div>
<div class="separator" style="clear: both;">
<br /></div>
<div class="separator" style="clear: both;">
In regard to Rett Syndrome, the Shaffers have been kicking it's ass and taking its name since 2012. I hate it, I fear it, and I wish we had never had to learn what it was. But, in the event that Lucy never receives any reprieve from it, we are prepared to keep up the fight and help her to become the person that she wants to be, in spite of Rett Syndrome. </div>
<br />
<br />
<br />
<div class="separator" style="clear: both;">
<br /></div>
<div class="separator" style="clear: both;">
<br /></div>
Anonymoushttp://www.blogger.com/profile/09668216042641622048noreply@blogger.com5tag:blogger.com,1999:blog-1223193381579381075.post-45706082320079526982016-01-28T06:27:00.001-08:002016-01-28T06:27:02.425-08:00"I want to watch..."<div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-0Z1ymgObYGs/VqolG9sG2gI/AAAAAAAAEMU/7mIEGjtxzJo/s640/blogger-image--1061409336.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-0Z1ymgObYGs/VqolG9sG2gI/AAAAAAAAEMU/7mIEGjtxzJo/s640/blogger-image--1061409336.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">This is what Lu looked like yesterday after she told me with her Tobii that she wanted to watch Despicable Me 2. She was so tickled to be watching the movie of her choice. I have been modeling in her Tobii the sentence, "I want to watch..." And then she fills in the blank. Because I know that eventually she will create that sentence on her own, instead of just essentially shouting out the names of movies and tv shows that she wants to watch. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">The other day she told me that what was happening (which was that she was waiting for me to give her a snack and was watching Peter Rabbit) was "boring". Being bored must be a feeling she is exploring lately because she also told Chad a month or so ago that she was "bored" when he was reading to her one night before supper. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">A week or two ago Lu and I were planning a small shopping trip. I read the list of things I needed and then I asked her if there was anything she wanted me to add. This is what she said:</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-ajsCfvmaxt0/VqolJW9HOTI/AAAAAAAAEMc/Y1lW4QzDeaA/s640/blogger-image-1495102356.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-ajsCfvmaxt0/VqolJW9HOTI/AAAAAAAAEMc/Y1lW4QzDeaA/s640/blogger-image-1495102356.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">That night for supper I made grilled cheese sandwiches with salami in them, and she was in love! We had blueberry pancakes the following Sunday, and we haven't had sloppy joes or lasagna yet, but we will.</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Lucy's buddies Miles, Chase, and Isaac stopped by for a quick surprise visit after Christmas to meet Olive, her new kitty. She loves those boys, but look what she said when they left:</div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-6c07PJnAm2g/VqolMboEANI/AAAAAAAAEMk/BO9SaY00mrY/s640/blogger-image--338408482.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-6c07PJnAm2g/VqolMboEANI/AAAAAAAAEMk/BO9SaY00mrY/s640/blogger-image--338408482.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">She often asks where her Dad is during the day when he's at work or makes this suggestion:</div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-kpuEVFebo18/VqolEDpwt7I/AAAAAAAAEMM/Xl9c7bKcpA8/s640/blogger-image--567120270.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-kpuEVFebo18/VqolEDpwt7I/AAAAAAAAEMM/Xl9c7bKcpA8/s640/blogger-image--567120270.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">I asked her if she missed him and she nodded "yes". She followed up in her book by saying, "not see him". </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">And during speech the other day, she and her therapist, Roxann, we're making a story about a picture of Lucy dressed up for Halloween. They had started the story the day before, so Roxann brought a picture of herself dressed up like Tinkerbell a few years ago to show it to Lu and talk a little bit about it too. In Lucy's picture she is with her dad and her Poppa, so as part of the story Roxann asked her what her Poppa thought about her costume, and Lucy said, "everyone, silly, yours" obviously referring to Roxann dressed like Tink, since she was a grown up! It was very funny!</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Just like any other five year old, Lucy makes requests, shares her feelings, makes observations, expresses her opinions, and likes to watch the same movie over and over again, and can tell me she wants to do so. I have a pretty strong belief that because she can do these things, and has control over it, is why she is generally a happy little girl. She certainly can have bad days as we all do, and sometimes we go through periods where certain parts of the day incite an inexplicable unhappiness in her, but in general, I feel like in spite of all of the parts of her life that she has no control over, and in spite of her physical limitations, she is content, happy, and thriving.</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">I'm just so grateful for the technology of eye gaze, and the creation of the PODD. I know this isn't new information, and that I'm like a broken record about it. But I often wonder how different Lucy would be without her ever-increasing ability to communicate with us. Fortunately, we will never know. </div><div class="separator" style="clear: both;"><br></div></div></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div><br></div>Anonymoushttp://www.blogger.com/profile/09668216042641622048noreply@blogger.com2tag:blogger.com,1999:blog-1223193381579381075.post-55271206161258569112016-01-02T07:15:00.001-08:002016-01-03T06:37:34.084-08:00SmilesI'm not a big fan of Christmas, as I have mentioned before. I am a little Grinchey, mainly because of the materialistic aspect, which I try to minimize as much as possible by making gifts and just trying to not focus so much on all the "stuff". We don't do Santa either. That's not to say I don't love to give people gifts, because I do. But I love to give gifts that really make a person happy and that brings a genuine smile to their face, not just a gift to fill the "amount of stuff you give someone" quota. And really, the smiles that matter most to both Chad and I obviously belong to Lu. <div><br></div><div>Lucy May isn't a gal that shows joy for just any old toy. I don't mean that there aren't many things that she likes and enjoys, but I really want to make her face light up with something that she is really going to have fun with. She also can't just play with any old toy that comes her way since she can't use her hands on her own, so it's a very tricky process thinking up things that she will love, and be able to enjoy. I have read a lot of parents' posts on Facebook and in blogs expressing very sad feelings about choosing gifts for their daughters because of the trickiness, but I seldom feel sad about it. I know what Lucy loves, and I don't mind the challenge of figuring out how she can use things. So, I wanted to share her smiles over the past few weeks that are a direct result of Chad and I always thinking outside the box and figuring out what will make joy shine out of her eyes.</div><div><br></div><div>I had been planning gifts for quite some time when Chad realized one day that we had not actually asked Lu what she wanted as a Christmas gift! I was mortified with ourselves! We ask her dozens of things everyday, but we had not asked her this question which certainly is mega important to any five year old. The next day as we talked about what she might want, she said on her Tobii, after I started her out with the first three words:<div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-E6XKKOtYxuk/VofpgAh2UmI/AAAAAAAAEKs/-usEhMLRKO8/s640/blogger-image--276884118.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-E6XKKOtYxuk/VofpgAh2UmI/AAAAAAAAEKs/-usEhMLRKO8/s640/blogger-image--276884118.jpg"></a></div></div><div><br></div><div><br></div><div> Well, I said we wouldn't be doing any construction to build a fireplace, and Chad was adamant that we are currently done with fish, and she didn't want to elaborate on what she meant by "eye doctor", so I decided to work on the cat request. This was not a new request, and we had a sweetie of an outside cat who had mostly lived inside with us, but had spent the past couple of years outside, not for any reason other than she was afraid of one of our past dogs. But...she loves Finn and Finn loves her, so I just had to convince Chad. It took a few days, but he eventually relented. We got the kitty, Olive, all cleaned up at the groomer's, and she joined us inside:</div><div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-s2XLCF8Npx8/VofpVdgHBPI/AAAAAAAAEKU/c3vw58aJSdw/s640/blogger-image-220152620.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-s2XLCF8Npx8/VofpVdgHBPI/AAAAAAAAEKU/c3vw58aJSdw/s640/blogger-image-220152620.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-cjPvNIHl9Yk/VofpPPOgg4I/AAAAAAAAEKE/QpYcCG1WxZg/s640/blogger-image--982496073.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-cjPvNIHl9Yk/VofpPPOgg4I/AAAAAAAAEKE/QpYcCG1WxZg/s640/blogger-image--982496073.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">This smile was from a race car track that just needs a push on a lever to make it go:</div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-5ynki9-gkdI/VofpSk-ea6I/AAAAAAAAEKM/QufqMGHYseI/s640/blogger-image--1762580525.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-5ynki9-gkdI/VofpSk-ea6I/AAAAAAAAEKM/QufqMGHYseI/s640/blogger-image--1762580525.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-2EsML8jZvRw/VofpZnmPLHI/AAAAAAAAEKc/o-7AZvYokQo/s640/blogger-image-407900222.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-2EsML8jZvRw/VofpZnmPLHI/AAAAAAAAEKc/o-7AZvYokQo/s640/blogger-image-407900222.jpg"></a></div><div class="separator" style="clear: both;">She had a lot of fun enjoying it with her cousins on New Year's Day. I would say that the race track produced the biggest smiles, besides the little "Digibirds" that you can see hanging on her Tobii stand. I showed them to her MeeMee and Poppa after seeing them in the store, and they got her two and she loves them. I am going to make a button on her Tobii that will whistle when she activates it, and then she can make the birds sing on her own. This is how she felt when she first saw them:</div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-_x7asLMe8ag/VofpiiiXDPI/AAAAAAAAEK0/Vo2VEg73w2U/s640/blogger-image--1806914803.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-_x7asLMe8ag/VofpiiiXDPI/AAAAAAAAEK0/Vo2VEg73w2U/s640/blogger-image--1806914803.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">She just smiled a lot in general over the weeks of hustle and bustle, and visiting, and eating, and I am glad she enjoyed herself so much. In preparation for the holiday, Lu used these fabulous, amazing new hand grippies her OT bought for her to try out to bake some chocolate cinnamon bread that we gave away as gifts:</div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-Mo7Yzi5sosg/VofpdyEv4fI/AAAAAAAAEKk/a4wIoZfUYsk/s640/blogger-image--1860203056.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-Mo7Yzi5sosg/VofpdyEv4fI/AAAAAAAAEKk/a4wIoZfUYsk/s640/blogger-image--1860203056.jpg"></a> They are called "EaZyhold" and can be bought on their website. They can be used to hold so many, many different things! Like a spoon for stirring:</div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-kphFkoibZ_A/Vohrc8Bw5hI/AAAAAAAAELE/dzJZyMU4Ry0/s640/blogger-image--684201932.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-kphFkoibZ_A/Vohrc8Bw5hI/AAAAAAAAELE/dzJZyMU4Ry0/s640/blogger-image--684201932.jpg"></a></div><div class="separator" style="clear: both;">Look at that concentration!</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Or holding different sized markers to color! Lu colored this which I then shrunk and made copies of to put on the front of our homemade cards, that I am still trying to get in the mail!</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-kgTDzVYBxrQ/VohrgQ52QXI/AAAAAAAAELM/Sr2GnmpG4Nw/s640/blogger-image--1303549855.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-kgTDzVYBxrQ/VohrgQ52QXI/AAAAAAAAELM/Sr2GnmpG4Nw/s640/blogger-image--1303549855.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">I think people make the holidays as stressful or not stressful as they want them to be. Each year I wrack my brain making a plan for how to eliminate more and more stress from all of the festivities. But with all of the going places we are always worrying about accessibility, and times things are happening in relation to Lucy's rigid daily schedule. Plus, just sometimes places and activities can be too much for her and she gets overwhelmed which can present itself in different ways. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">But, we do our best to pick and choose what is worth the effort, and what just isn't. This year one thing that I knew would be absolutely worth the effort was going to see Lucy's buddies, Miles, Chase, and Isaac in their Christmas show at their school. And I was right, she smiled the whole time, even though we were past her lunch time. After the show we had lunch at Burger King with Erin, the boys' mom and my old friend, and Lu enthusiastically ate almost an entire [pureed] cheeseburger. It was a great day. Full of smiles, and while it was exhausting, it was so totally worth it!</div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-mu3XPj2_0W8/VokxYWX4CjI/AAAAAAAAELc/tkpK5Val8Q8/s640/blogger-image-521747098.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-mu3XPj2_0W8/VokxYWX4CjI/AAAAAAAAELc/tkpK5Val8Q8/s640/blogger-image-521747098.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">So anyway, I hope everyone had a very happy holiday season, whatever holiday you may celebrate. I've already started planning ways to continue my goal of simplifying the holidays for next year: minimal stress, maximum smiles on Lucy's face, that's my goal! I hope everyone also has a healthy and happy New Year! </div><br></div><div class="separator" style="clear: both;"><br></div><br></div><div class="separator" style="clear: both;"><br></div><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div><br></div><br></div><br></div><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div><br></div><br></div><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div><br></div><br></div>Anonymoushttp://www.blogger.com/profile/09668216042641622048noreply@blogger.com1tag:blogger.com,1999:blog-1223193381579381075.post-1269474976645323542015-11-26T05:59:00.001-08:002015-11-26T06:17:30.902-08:00Girl ScoutsSome years I like to talk about all of the things I am thankful for in life, but this year, there is one new thing in our life, and in Lucy's life specifically that I am especially thankful for. She became a Girl Scout this fall. She is technically a "Daisy", but in our small rural town, all ages are in the same troop, and it is a small little troop. <div><br></div><div>Lucy's older cousin, Emmie is in the troop, and her best friend Hannah, and that was a big help in Lucy being instantly welcomed and accepted. And I can tell when we are there at the meetings, of which of course I need to attend with her, she feels at ease. One of my favorite examples of knowing she feels comfortable was when the girls were talking about movies and they asked Lu what her favorite movie is. Lucy went to her "About Me" section in her PODD on her Tobii and found the button that says, "my favorite movie is Mulan". Plus, she participates in the crafts and activities by using her Tobii and any adaptive equipment I have brought along that day with no anxiety. </div><div><br></div><div>We are lucky to have joined a troop led by two women who not only welcome Lu, but think about her needs when choosing snacks, crafts, and other activities. And we are so thankful to have been lucky enough to join a group of such kind, and patient girls. They ask questions, but not constantly, and always politely. And they don't make a big deal about all of the things Lu does differently. They don't stare at her when I am feeding her or wiping the saliva from her chin. When I pulled out Lu's adaptive scissors one day when there was cutting to do, the girl across from Lu said, "I am very interested to see how Lucy is going to use those scissors." It was just right. And that's why Lu is comfortable, because she is certainly aware of all of the things she does differently and this group of girls just accept those things and have welcomed her into their group. They treat her like a real friend.</div><div><br></div><div>For the meeting before Thanksgiving, the girls had a talent show and Emmie and two of her friends asked Lu if she would like to play her bongo drums while they played some of their band music. Lu's OT bought these silicone grips after I showed them to her and Lu has been using them for a variety of activities, including holding her drumstick during the talent show:</div><div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-2WMAN92hIdE/VlcUduj0ltI/AAAAAAAAEJo/MnH0vP5eqoI/s640/blogger-image--818116192.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-2WMAN92hIdE/VlcUduj0ltI/AAAAAAAAEJo/MnH0vP5eqoI/s640/blogger-image--818116192.jpg"></a></div><div class="separator" style="clear: both;">They are called "EaZyhold" silicone grips and they are wonderful. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-cge9l6j5XVA/VlcUXntwx6I/AAAAAAAAEJY/hN9iKg4AQCM/s640/blogger-image--869140800.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-cge9l6j5XVA/VlcUXntwx6I/AAAAAAAAEJY/hN9iKg4AQCM/s640/blogger-image--869140800.jpg"></a></div><div class="separator" style="clear: both;">So Lucy was able to play with the girls by me just helping to support her elbow and keep her hand over her drum.</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Then later the girls took Lu out to the floor to play tag with them...without me! Such a minute thing, but that has literally never happened in Lucy's life. I helped sort candy that the girls had sold while Lu played with her friends. Just to reiterate: she played without me... WITHOUT...ME. It was one of the most beautiful things I have ever seen in my whole entire life. The girls took turns pushing her and tagging her, and letting her tag them, and all the while a giant smile was spread across her face. </div><div class="separator" style="clear: both;">They just include her as a matter of course.</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-L5Fys6zH6YY/VlcUbEeJH8I/AAAAAAAAEJg/nTdO8wluct4/s640/blogger-image--883732993.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-L5Fys6zH6YY/VlcUbEeJH8I/AAAAAAAAEJg/nTdO8wluct4/s640/blogger-image--883732993.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">This is just what I was hoping Girl Scouts would be: a valuable social group for Lucy. It is mostly quiet, low-key, slow moving, and low pressure. Just our kind of scene, and that's one of the things I am so very thankful for this year. Thank you Maria and Kristy for leading the troop and doing all that you do!</div><br></div><div class="separator" style="clear: both;"><br></div><br></div><br></div>Anonymoushttp://www.blogger.com/profile/09668216042641622048noreply@blogger.com1tag:blogger.com,1999:blog-1223193381579381075.post-15019683897349838072015-11-25T07:20:00.001-08:002015-11-25T07:20:56.832-08:00The past few weeks...We've kind of had a time of it the past few weeks:<br><div><br></div><div>A few Monday's ago: </div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"> I took Lu to just a regular eye doctor for an exam. In the past we have taken Lu to a pediatric ophthalmologist in Danville, but when we saw him last January, I felt like his attitude was not what I am looking for in a doctor. He found a very slight near-sightedness in her left eye and said it wasn't bad enough yet for a prescription (which I thought was fine), but then he also said for us to come back in two years...two years to check on a pair of eyes that work so hard every day to use her Tobii and her PODD book, and that already are showing some near-sightedness? No, I didn't think we would wait two years. So when I was at my eye doctor, Dr. Danielle Trego, I asked if she would be willing to give Lu an exam when the time came and she was more than happy to. Fast forward a few more months and one night Lucy said with her paper PODD book, "not, see, me". I asked if she was having trouble seeing and she said yes. Since the doctor had noted the near-sightedness, Chad and I have talked with her often about letting us know if she starts having any trouble seeing, or if things begin to get blurry. I checked in with her a few days after she said she was having trouble seeing and asked her again, and she still said yes, so I made her an appointment and low and behold, she has some astigmatism. Since she had made a complaint about it, we decided to give some glasses a try and she has been so happy with them since the moment we put them on her face!</span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-52ocEITp4PU/VlXRvsdBhNI/AAAAAAAAEI4/jxOCfC6_HQ4/s640/blogger-image-170388123.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-52ocEITp4PU/VlXRvsdBhNI/AAAAAAAAEI4/jxOCfC6_HQ4/s640/blogger-image-170388123.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">In other news, Lucille May has lost her first two teeth also! </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">So then, the day after the eye exam she woke up and the cold she had been trying to get over seemed to be trying to make a comeback, so I took her to the doctor, just to be sure her lungs were clear. Everything looked and sounded great, but they were having trouble getting a high enough pulse ox reading (the level of oxygen present in her blood) and the doctor decided to do a chest x-ray just to be sure. The next morning I got a message in my email that her x-ray results were available on the online system through her medical center. Much to my relief, it stated her lungs were clear. As I read the entire report, however, I noticed this sentence:</div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-xiIm3e8ZRrw/VlXR0-q9ZHI/AAAAAAAAEJI/lTbo-gkAfQg/s640/blogger-image-345926443.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-xiIm3e8ZRrw/VlXR0-q9ZHI/AAAAAAAAEJI/lTbo-gkAfQg/s640/blogger-image-345926443.jpg"></a></div><div class="separator" style="clear: both;"> </div><div class="separator" style="clear: both;">"There is dextroscoliosis of the mid thoracic spine." It was like that sentence leapt off the screen and just socked me right in the heart, because this was news to me. I messaged the office to point this out and say her orthopedic doctor should look at the x-rays. Not long after, the nurse called to tell me that Lu's lungs were clear. She had not read my message about the scoliosis yet, and made no mention of those "findings". Nobody noticed but me that this was new. By the end of the day, I made sure Lucy had an appointment to address this, and luckily it was within the next week. </div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-9FGNMLZWlf4/VlXRsrO3GyI/AAAAAAAAEIw/FbZv-E4-Ggk/s640/blogger-image--1538803806.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-9FGNMLZWlf4/VlXRsrO3GyI/AAAAAAAAEIw/FbZv-E4-Ggk/s640/blogger-image--1538803806.jpg"></a></div><div class="separator" style="clear: both;">The x-ray was taken while Lu sat in her wheelchair, so it is obvious in the picture that she was sitting a little crooked, but the doctor said she also had a very mild curve beginning. He said that he wanted to see her in Danville in 6 months to do more in-depth x-rays and to determine the degree of the curve. Lucy's tone in her arms and legs has been increasing over the past year and he said the tightness of her legs is tilting her pelvis and pulling on her spine. Scoliosis can have a variety of causes, and with Rett Syndrome it is a neuromuscular problem. This means that just like the rest of her body, her brain does not send her muscles the correct signals and they pull on her spine. It's why she had low tone all her life, until the tone started increasing and now she has high tone, because her brain just can't tell her muscles to have regular tone like everybody else's. The doctor gave us two pages of leg stretches to do throughout the day, and I have seen a difference already in her ability to straighten out her legs more easily.</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">As I mentioned, Lucy's arms are also becoming a little tight and her wrists have started doing this:</div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-_jSMcWoKqn8/VlXRyXeSjfI/AAAAAAAAEJA/_YNhAmRBhMc/s640/blogger-image-1503492753.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-_jSMcWoKqn8/VlXRyXeSjfI/AAAAAAAAEJA/_YNhAmRBhMc/s640/blogger-image-1503492753.jpg"></a></div><div class="separator" style="clear: both;">They are constantly curled over like that, so her OT has also taught me arm stretches to help maintain her range of motion and we are in the process of ordering some wrist splints for while she sleeps to help prevent contractures from occurring. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">So basically, I feel like Rett Syndrome is crushing us, more than usual. The astigmatism is not likely related to Rett, as Chad has it too, but the high tone, scoliosis, and fight against contractures is all Rett. In the beginning, when we first learned about the diagnosis, I made a mental list of the biggest problems that could occur from the condition and I went over that list over and over in order to learn as much as we could to try to stop any of them from ever happening. Unfortunately, it seems like there is just so much out of our control, no matter how hard we work to defend Lu. </div><div class="separator" style="clear: both;">Here's the list:</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Feeding troubles resulting in feeding tube: defeated us December 2013</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Seizures: first attacked in September of 2014. After more than a year, we finally seem to have a combination of medications that are keeping them under control.</div><br></div><div class="separator" style="clear: both;">Scoliosis: reared its miserable head November 2015, in spite of three years of agonizing over proper seating, standing, walking, and exercising to prevent it</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Pneumonia: We are still holding this bugger at bay. When Lucy gets a cold, it tends to hang on FOREVER with never-ending mucous and coughing, but it has only once required an antibiotic, which was last Christmas. Pneumonia can become very serious, very quickly for girls with Rett who already have irregular breathing patterns, as Lucy does, and especially because she is not ambulatory. I am terrified of this one.</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Long qt syndrome: This one has also left Lucy alone so far. This is a condition that causes An irregular heart beat and if left untreated can cause sudden cardiac arrest and death. She gets checked for this annually. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Contractures: These are new to the list because Lucy has always had such low muscle tone. She is not experiencing any of these as of yet, and we can do our best to make sure she doesn't. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">The scoliosis doctor said that we have been doing everything right and to keep up the good work. In a sudden gush of frustration and sadness, I tearfully pointed out that even though we did our best to prevent this from happening, it still happened. He said he had another way for us to look at it, and that was that if we hadn't done everything we have done so far, it would be so much worse at this point. I instantly felt better when he said that. But, it is still so hard to know that so many important things that could drastically effect Lu's life are out of my control. It is agonizing at times because all I want to do is protect her and make her life good, and happy, and comfortable. </div><br></div><div class="separator" style="clear: both;">That damn curve could progress over time to a degree that will require surgery to fix it and to keep Lucy's organs from being effected by it, or it could only get a little worse. There is no knowing what it will do, and there is very little to do to change its progression. We just need to keep her as straight as we can, and keep her stretched out, and walking and standing as much as she is able to, and hope for the best. Chad and I, as usual, are on duty and wielding our big sticks. Just sometimes Rett Syndrome has a much bigger stick than us. </div><br></div><br></div><br></span></div>Anonymoushttp://www.blogger.com/profile/09668216042641622048noreply@blogger.com0tag:blogger.com,1999:blog-1223193381579381075.post-47699432695128256652015-10-25T06:10:00.000-07:002015-10-26T08:40:38.342-07:00Not Just for Some<a href="http://www.janefarrall.com/aac-dont-demand-prerequisite-skills/" target="_blank">http://www.janefarrall.com/aac-dont-demand-prerequisite-skills/</a><div><br></div><div>I just finished reading this article by Jane Farrall, an AAC professional that provides a great deal of very helpful information on her website not just about AAC and communicators with complex communication needs, but also about education and literacy. She incorporates how to use the PODD or whatever communication system a learner uses into lessons, and provides a point of view that is very close to my heart. The point of view that every person has the right as a human to communicate, and to communicate fully using a robust communication system, not simply pressing a button, or answering yes and no questions all day long.</div><div><br></div><div>I'd like to preface my thoughts today with a few facts that I know are true. </div><div><br></div><div>I know when our children are sick, nothing else matters but getting them well. I know that some children are sick often, and that maybe implementing a robust communication system might not seem like it should be a priority when you are in the hospital, or maybe just trying to keep yourself going after nights and nights of being up caring for you loved one. </div><div><br></div><div>I know many people don't always have team members or speech therapists that possess forward thinking views, or ones that will presume our children are competent. I know it is hard to convince the system to believe you that your child deserves to be able to communicate, learn, and socialize. </div><div><br></div><div>I know there are millions of different life circumstances that can make obtaining a Tobii, or a PODD book, or any type of communication system a difficult task. My intention is not to place judgement or blame on anyone for what they can or cannot do. I want to talk about our views as parents in regard to the importance of overcoming any obstacles that are in the way of letting our children communicate. </div><div><br></div><div>Here's something that not only makes my blood boil, but also breaks my heart: in the past three years of attending conferences, parent gatherings, strollathons, and awareness events, I have seen one other girl, one time, with a means of communication available to her right then at the event. I have met many girls. I have met girls who I know had Tobiis and PODD books at home, but they weren't there with them. To me, this sends a message that they can only communicate at certain times. Not only that there are only certain times that they are allowed to communicate, but that there are evidently times when nobody cares if they have something to say. That may sound harsh, but what other message could it be sending? In the groups on Facebook for parents with Rett Syndrome, and even communication groups, I have heard people comment that the Tobii is too bulky to bring along, the book is too big, there's already so much to bring with them, they can't remember it, etc., etc. Whatever the excuse may be, all the AAC user sees and hears is that it's not important. </div><div><br></div><div>In addition to the occurrence of making excuses for not always having a means of communication present for AAC users, I feel that many people still believe, or are told by professionals and then taught to believe, that their child actually is "too something" like Jane's article discusses. Too physically impaired, too cognitively impaired, too behaviorally challenging, too old, too young, the list could go on and on. I was actually surprised when I read this article that the idea of nobody being too anything to communicate has been in practice for so long, because I consistently hear other parents talking about how their therapists and/or teachers have decided their child is "too something" after all. Often times, I think when a professional says something, then a parent believes it. That "professional" might be more educated, so why shouldn't we believe them? </div><div><br></div><div>However, if there is one thing I have learned since beginning this journey as Lu's mother it is that professionals are not always right, and if I don't think they are right, it is my job to make them see why they are wrong. This can be intimidating because they are the "professionals", and I'm just the parent. I have heard umpteen times that I am the expert on my child, but on very few occasions have I actually felt that the person making that statement really believed it. But I believe it, with every fiber of my being, and because of that, I calmly, patiently, but relentlessly make that fact known to anyone who needs to know it. As the expert on my child, I don't let people second guess what I know to be true: that Lucy is brilliant, strong, funny, kind, and capable. She experiences many things all day that could probably be considered as severe impediments to her ability to communicate, but I have never let anyone say that any of those things were too anything for her to be able to talk to us. She has very little control over her body, but has learned to use her head to indicate yes and no. She holds her breath and grinds her teeth constantly, she knows we will wait until she is breathing again so she can continue with what she was saying. She can't use her hands to sign or point to what she wants to say, so she uses eye gaze and partner-assisted scanning. There are ways to work through anything. </div><div><br></div><div>When I see and hear so many reasons why people do not have a way to communicate, I feel frustrated with the adults who should be advocating and problem-solving for them. However, mostly my heart breaks for these children and adults who have so much to say, and are not being provided with a way to say it. Seriously, can you imagine having the brain you have, and all of the thoughts and feelings you have, but not being able to express yourself? Now, if you can imagine that, imagine that nobody around you believes that you have anything to say, so they don't try to figure out how to help you communicate. Or imagine that you have a magical machine that can let you talk just by using your eyes and choosing what you want to say, but it's only available to you once in awhile. Or imagine there is a book full of symbols that you understand and could communicate with, but nobody ever seems to bring it along. Imagine what it would be like if people discounted your abilities based solely on your disabilities. </div><div><br></div><div>Parents need to believe in their child's ability to communicate, and professionals need to presume competence ALWAYS, so that they at least can help parents change their view points if necessary. It needs to become a more widely spread belief that nobody is too anything to communicate. Every person should simply be seen as too human to not be allowed to have their thoughts heard. </div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-Wmm_xdDZy3g/ViuQKb_yzyI/AAAAAAAAEII/smUDc5OYj1A/s640/blogger-image--2004684146.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-Wmm_xdDZy3g/ViuQKb_yzyI/AAAAAAAAEII/smUDc5OYj1A/s640/blogger-image--2004684146.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-KDDmFFmnnH0/ViuQUuTuUGI/AAAAAAAAEIg/9Yko3uGd5aE/s640/blogger-image-358051003.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-KDDmFFmnnH0/ViuQUuTuUGI/AAAAAAAAEIg/9Yko3uGd5aE/s640/blogger-image-358051003.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-N4fRH6JFqnU/ViuQQY2DYRI/AAAAAAAAEIY/U-mD9wosPYw/s640/blogger-image-2127043876.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-N4fRH6JFqnU/ViuQQY2DYRI/AAAAAAAAEIY/U-mD9wosPYw/s640/blogger-image-2127043876.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-NgIK_fySB-I/ViuQNDAFIyI/AAAAAAAAEIQ/qbXakBNN4nw/s640/blogger-image-1236664673.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-NgIK_fySB-I/ViuQNDAFIyI/AAAAAAAAEIQ/qbXakBNN4nw/s640/blogger-image-1236664673.jpg"></a></div><div class="separator" style="clear: both;"><br></div><br></div><br></div><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div><br></div><div><br></div><div><br></div>Anonymoushttp://www.blogger.com/profile/09668216042641622048noreply@blogger.com2tag:blogger.com,1999:blog-1223193381579381075.post-79656325912224716382015-09-09T14:07:00.001-07:002015-09-10T06:23:13.010-07:00"Clever" LuBack in July we had the opportunity to spend the whole day with the one and only Linda Burkhart! It was so much fun, and so helpful! Linda had many great ideas for how to help Lu obtain more stability for communicating more effectively and for many other tasks throughout the day. It has made a huge difference. One of the most surprising and helpful ideas Linda showed us was a grab-bar being placed on the tray to Lucy's wheelchair for her to hold onto...and she does! I couldn't believe it! It greatly improves her ability to use her head more efficiently for indicating yes and no when using her PODD books, but it has also made great improvements for when she is eating. Lucy doesn't really hold onto anything consistently so I was extremely skeptical when Linda put the bar on her tray, but I didn't say anything and within minutes Lucy was grabbing onto it! Having her arm braces on is the key to her being able to hold the bar and then that all helps her be more stable.<div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-Rxsf2qNCkVs/VfGEBAd2hsI/AAAAAAAAEFY/C062WMogyCg/s640/blogger-image--896739750.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-Rxsf2qNCkVs/VfGEBAd2hsI/AAAAAAAAEFY/C062WMogyCg/s640/blogger-image--896739750.jpg"></a></div><br><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">So increased stability has made a huge difference in Lucy's life! But another suggestion Linda made has also drastically changed how Lucy communicates. For the past year and a half that Lu has had her Tobii and used the Grid2 software for her PODD, each word that she chooses goes up into her "message window" and is spoken out loud. Right beside the message window is a button for Lucy to speak her entire message all at once when she is ready, but in the meantime we have always heard every single word she chose. Linda said Lucy was ready for the settings to be changed so that each word was no longer spoken when she chooses it, and we only hear what she wants to say when she has completed a message and chooses to speak it. Lucy's speech therapist and I immediately agreed that Lu was ready for that, but I knew it was going to be hard for me to not hear every single thing she says all day...and I was right! </span></div><div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">The idea is that Lucy will form her own thoughts and edit as she goes by deleting words or clearing whole messages without speaking them, and when she is ready for a message to be heard she will speak it out loud. This way we know for sure she intended for it to be heard. Luckily, Lu has been using the speak message button all along so she did not have to learn about how or when to use that, but it did take some time for her to learn this new process. I did my best to remain calm on the outside, but honestly I was so anxious and un-Zen on the inside! It was hard to not just shout, "Speak your message! I need to hear you! I need to know you understand this new way!" But I didn't shout any of those things. Admittedly, I said, "Don't forget to speak your message when you're ready" an excessive amount of times in the beginning, and I still say it now, but just as a reminder, not over and over. However, she started to get it, and she has been continuing to get better and better at speaking her messages that she really wants us to hear, and clearing long strings of words that are just exploring because she knows that those are not clear messages and she doesn't care if we hear them. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">One of the first clear messages that Lucy created and then spoke out loud to us was this one:</div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-oHXBxnrmLGk/VfCfeswDCBI/AAAAAAAAEE4/furH2Qyw5lM/s640/blogger-image-859580478.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-oHXBxnrmLGk/VfCfeswDCBI/AAAAAAAAEE4/furH2Qyw5lM/s640/blogger-image-859580478.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Chad was already home from work that day, so naturally he stopped and got Lu a strawberry milkshake on his way home the next day. She was thrilled! </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">A few days later Lu spoke this message while at lunch: "grumpy, hospital, constipation" I reminded her that she had been very regular recently and I didn't think she was constipated. We finished lunch and went over to have a drink on the couch. She started tooting and so I took her back to the potty where she proceeded to have a very healthy movement! I thanked her for telling me she had to go, and apologized for not taking her right away. We talked about how to say "I have to poop" instead of using "constipation", and then we talked about when we do and do not need to go to the hospital. I asked her if she really thought she needed to go to the hospital because she had to poop and she said "yes" and then started giggling! </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">While we were eating lunch at the Carnegie Science Center this weekend, the day before the Strollathon, Lucy spoke this message to Chad and I: "why, where, what's happening, tell me yes or no, doctor, hospital, cut?" We had been telling Lu about the Strollathon and this little trip for at least a month, but she is so used to long car rides to cities ending in at least a doctor's appointment, if not some unpleasant procedure that she was asking if that was going to happen. We assured her that no this trip was just for fun, no doctors, hospitals, or cuts. She cleared her message and responded to our assurances by saying this:</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-bICzXmFCgtQ/VfGEHxCrWeI/AAAAAAAAEFg/cCuZsbmZA30/s640/blogger-image--863930577.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-bICzXmFCgtQ/VfGEHxCrWeI/AAAAAAAAEFg/cCuZsbmZA30/s640/blogger-image--863930577.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Chad and I were so glad that she was able to share those worries with us, and that we could then help her to feel better. It makes me sad that she was worried of course, but so proud of her for not only creating such an important message, but also speaking it even though we were in a noisy room with lots of other people around. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">The final message I want to share happened a few nights ago at supper. Lu was very vocally expressing that she was upset about something, (meaning she was shouting and whining loudly). I asked Lucy to use her Tobii and her words to tell us what was wrong. I scaffolded to "something's wrong" and Lu said, "bad". She then navigated back to the beginning of her PODD but then did not say anything else for several minutes. Since she was still clearly very upset, I scaffolded to "I want" and asked her to tell her dad and I what she wants, what would make her feel better. First she said, "Barbies" and then she said, "chew". We have started giving Lu a lot of purées again because her mouth was just not chewing well for her anymore and she has been gobbling them down with relief written all over her face. She was also having a purée at this meal. I then used a new technique that Linda taught me where I could help Lucy decide if her message needed editing. I wrote out her whole message and then asked her if each word was an "oops" and this was the result:</div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-oVbgX0h2RRs/VfGD7MXDcNI/AAAAAAAAEFQ/U44O7-OHQIs/s640/blogger-image-1149368591.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-oVbgX0h2RRs/VfGD7MXDcNI/AAAAAAAAEFQ/U44O7-OHQIs/s640/blogger-image-1149368591.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">I got her some softer cheese out of the fridge and she ate it all up...she just wanted to chew. Chad and I talked to her about why we have been giving her purées lately, and of course she understands. It's her mouth after all that is not working, she knows it better than anyone. We talked about how frustrated she must feel sometimes and that when she would rather chew she could let us know, like she just did, and that we will always keep trying to help her keep chewing. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">So this new way for Lu to use her Tobii is different, and she is improving a little bit at a time, but it gives her so much wonderful control and power. She doesn't have to listen to people babbling on about each and every word she says, and she can choose what she wants to say, when she's ready to say it. It's a great step forward in her communication journey and we are so grateful to Linda for showing us it was time to take that step. </div><br></div><br></div><br></div><br></div><br></div></div>Anonymoushttp://www.blogger.com/profile/09668216042641622048noreply@blogger.com1tag:blogger.com,1999:blog-1223193381579381075.post-21209660257553107282015-09-06T06:09:00.001-07:002015-09-06T06:27:08.444-07:00Thank you!Yesterday was the Strollathon. Somehow it was near 90 degrees for the second year in a row, and Lu does not love that type of heat, but she did okay. The total amount raised so far is at $12,345.00! That's so awesome! And yesterday as people arrived we all handed in cash and checks from people who did not donate online, so the total will increase as those donations are processed. <div><br></div><div>Chad and I just wanted to thank everyone who kindly and generously donated. It means so much to us to know that so many people care so much for our sweet Lu and truly believe in the possibility of a cure. Team Lucy itself raised $1,575.00! Here's the team, minus my Dad who was waiting back at the pavilion for us:</div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-jjeT67M41Og/Vew-_GS_zBI/AAAAAAAAEEY/-4-MEAlvZew/s640/blogger-image--1951113532.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-jjeT67M41Og/Vew-_GS_zBI/AAAAAAAAEEY/-4-MEAlvZew/s640/blogger-image--1951113532.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">And we of course want to thank all of these people above who drove several hours to be with us and walk with us, and show their support. Just their presence means the world to us too! It was a long, hot day and by the end all the Shaffers wanted to do was be back in out own home. Here's a cute shot of Chad cuddling Lu while she tries to keep it together as we all finished lunch:</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-V6jukMiM6MY/Vew_EvctEcI/AAAAAAAAEEg/_n-t5BoEg90/s640/blogger-image-1533812275.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-V6jukMiM6MY/Vew_EvctEcI/AAAAAAAAEEg/_n-t5BoEg90/s640/blogger-image-1533812275.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Thank you all again! It means the world to us and to Lu and all of the other children living with Rett Syndrome all over the world. </div><br></div><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div><br></div>Anonymoushttp://www.blogger.com/profile/09668216042641622048noreply@blogger.com0tag:blogger.com,1999:blog-1223193381579381075.post-84869443175981827762015-08-12T06:09:00.000-07:002015-08-13T07:51:57.114-07:00Why We Stroll<div>
The annual Pennsylvania Strollathon is coming up on September 5th this year! It's being held in Pittsburgh again at the nice park we strolled in last year, while enjoying views of the river. The 2014 event raised over $10,000! I think it would be amazing to do even better this year, but not merely to beat last year's total. You see, in the past year, some extremely exciting announcements have been made regarding progress in treatments for Rett Syndrome. I wanted to share some brief articles explaining the significance of a few of the most promising treatments. There are others. There are people all over the world trying many different things, these three are most recent and provide a lot of hope for the Rett Syndrome community:</div>
<a href="https://www.blogger.com/"></a><div><a href="http://www.reuters.com/article/2015/07/14/nj-newron-pharma-idUSnBw145335a+100+BSW20150714" target="_blank" style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">Newron and breathing drug</a></div>
<a href="https://www.rettsyndrome.org/new-discovery-x-chromosome" target="_blank">New discovery about the X Chromosome</a><br>
<a href="http://www.rettsyndrome.org/blog/neuren-orphan-drug-status" target="_blank">Neuren and Orphan Drug Status</a><br>
<div>
<br></div>
<div>
I wanted to share some specifics treatments and advancements so our friends and family, and other supporters could read about how their generous donations are truly being used to someday (soon hopefully) improve Lucy's quality of life. I know for those of you who are not constantly on the edge of your seats, waiting with bated breath, and still trying to not get your hopes up too high, that you may not have much information on the progress toward actual treatments and possibly a cure someday. I hope these articles can give a little insight into what is actually happening, right now within Lucy's lifetime. For all of this amazing research to continue to move forward, funds need to keep coming in to support it. That's just a fact, a bummer, but a fact nonetheless. </div><div><br></div><div>When we first met Dr. Sasha she said that she believes there will be a cure by the time Lu is 10. As much as it scares me to let my hopes get too high, I have made it a rule to always believe Dr. Sasha. So, while most of the time I focus on today, sometimes I let myself imagine what Lu's life could be like without Rett Syndrome dragging her down all the time. </div><div><br></div><div>What if she could pick her own tomatoes, all by herself?</div><div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-3_SNGaWNyCc/VcyT4BO_wrI/AAAAAAAAEDM/2cBD2YjnJ4E/s640/blogger-image--523618894.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-3_SNGaWNyCc/VcyT4BO_wrI/AAAAAAAAEDM/2cBD2YjnJ4E/s640/blogger-image--523618894.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Or walk without anyone's help?</div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-55SgqG4mdxg/VcyUB9Cg81I/AAAAAAAAEDk/A4Xj6C2UiZU/s640/blogger-image--1417720042.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-55SgqG4mdxg/VcyUB9Cg81I/AAAAAAAAEDk/A4Xj6C2UiZU/s640/blogger-image--1417720042.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Or what if she could talk with her own beautiful voice? Without special computers or communication books?</div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-e7Wqc0VEk1I/VcyT7n6beLI/AAAAAAAAEDU/sBBuJRCuTtQ/s640/blogger-image-1436882875.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-e7Wqc0VEk1I/VcyT7n6beLI/AAAAAAAAEDU/sBBuJRCuTtQ/s640/blogger-image-1436882875.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-DjVHrAl-sgI/VcyT-7-8jsI/AAAAAAAAEDc/2T9sExI7seU/s640/blogger-image-882143933.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-DjVHrAl-sgI/VcyT-7-8jsI/AAAAAAAAEDc/2T9sExI7seU/s640/blogger-image-882143933.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">With the hopes of those "what-ifs" and a million more that go through my head daily, I find the courage to ask our friends and family to spare any bit they can to help further all of this amazing research. Whether a true cure ever comes, or just treatments that can make a huge difference, I do believe that Lucy will receive some relief from the monster that is Rett Syndrome within her lifetime, and likely within the near future. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">If interested, please click on the link below to support the PA Strollathon and to help give hope to the possibility of Lucy's freedom from Rett Syndrome! And thank you to everyone, we are forever grateful!</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><a href="http://www.strollathon.org/SupportLucy" target="_blank" style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">http://www.strollathon.org/SupportLucy</a></div></div></div></div></div>
Anonymoushttp://www.blogger.com/profile/09668216042641622048noreply@blogger.com0tag:blogger.com,1999:blog-1223193381579381075.post-15021658256028312512015-07-29T06:09:00.001-07:002015-07-29T14:06:45.350-07:00But on the other hand...This is a sequel to my last post, "The Hunch". The fear of the unknown can sometimes be so overwhelming, and long-lasting that it really gets the better of me, and I hate that! I hate it! I am the boss of me, not fear. So after posting that drag of a post, I then suddenly thought, "But what about all of the GREAT things that have happened in the past three years?" Yes, things have been taken from Lu, but we can't let all of that overshadow the good in her life and that she has accomplished, learned, and experienced.<div><br></div><div>As I've mentioned many times, Lucy can communicate with us! This is huge considering the symptoms of Rett Syndrome and how hard it tries to trap her in her body. So even on bad days full of seizures and anxiety, she can still talk to us. She has learned work-arounds for her own body and all that it tries to throw at her so she can still be heard. Here's a couple of awesome things she has said recently:</div><div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-wyyQqwgjdFo/VbjTpaZce2I/AAAAAAAAEBQ/nBcUfheOTy8/s640/blogger-image--292469437.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-wyyQqwgjdFo/VbjTpaZce2I/AAAAAAAAEBQ/nBcUfheOTy8/s640/blogger-image--292469437.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">And then one day she said this which was beyond awesome:</div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-crjoQBm9Hus/VbjThf-9LxI/AAAAAAAAEBA/R-o_vAH3MeY/s640/blogger-image--1371396167.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-crjoQBm9Hus/VbjThf-9LxI/AAAAAAAAEBA/R-o_vAH3MeY/s640/blogger-image--1371396167.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">And she's made great friends over the past three years. Just this past Friday her buddies Miles, Isaac, and Chase came over for lunch and swimming and Lu asked me this at breakfast before they came:</div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-FAEmvGyg5MU/VbjTln6eI-I/AAAAAAAAEBI/7UlK0VH5u6s/s640/blogger-image--139606946.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-FAEmvGyg5MU/VbjTln6eI-I/AAAAAAAAEBI/7UlK0VH5u6s/s640/blogger-image--139606946.jpg"></a></div><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">This summer she's been doing a lot of swimming with more independence than she's ever had and she loves it! And I love it for her!</div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-UUFN5fyhnNw/VbjTec6BKkI/AAAAAAAAEA4/-hwnTtyV8rk/s640/blogger-image-2113269975.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-UUFN5fyhnNw/VbjTec6BKkI/AAAAAAAAEA4/-hwnTtyV8rk/s640/blogger-image-2113269975.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Yesterday, after watering her garden and swinging on her swing set she walked this far, from her swing to her wheelchair. She still needs quite a bit of support, but her legs are taking amazing steps forward as we practice and practice each day:</div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-EprXB0NRHyA/VbjXzxVTAyI/AAAAAAAAEBk/LiCZC3f0c6Q/s640/blogger-image--871076199.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-EprXB0NRHyA/VbjXzxVTAyI/AAAAAAAAEBk/LiCZC3f0c6Q/s640/blogger-image--871076199.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Lu and I work on reading and literacy every day also. She knows all of the things that kindergarteners should know, for the most part. She loves to learn and we do our best to fill her brain with whatever interests her. Right now she and her daddy are reading the children's book series by Stephen and Lucy Hawking about outer space and she loves it! Her and I are working on a collage of birds we've seen at the feeders and she's been in charge of using her special scissors to cut out the pictures. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Her love of art continues:</div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-KyySlmAM_8Q/VbjX6gFs9AI/AAAAAAAAEB0/PBQZ-0mEnDY/s640/blogger-image-714672020.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-KyySlmAM_8Q/VbjX6gFs9AI/AAAAAAAAEB0/PBQZ-0mEnDY/s640/blogger-image-714672020.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">She got to be a flower girl in her Aunt Ashlee's wedding:</div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-FY-lR-Vx-DQ/VbjX3bcBkSI/AAAAAAAAEBs/MYL78C7xNJY/s640/blogger-image--685607242.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-FY-lR-Vx-DQ/VbjX3bcBkSI/AAAAAAAAEBs/MYL78C7xNJY/s640/blogger-image--685607242.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">And we are surrounded by family and friends that love and care for us. It can be hard waiting to see what Rett Syndrome will throw at Lu next, but I need to remind myself to always be on the lookout for what amazing things might also happen next. Who might Lu meet? What might she learn, or say, or do? How might her life, and ours, keep getting better, in spite of Rett Syndrome's persistent efforts to ruin it? I guess we'll see!</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><br></div><br></div><br></div><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div><br></div><br></div><br></div><div class="separator" style="clear: both;"><br></div><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div><br></div><br></div><br></div>Anonymoushttp://www.blogger.com/profile/09668216042641622048noreply@blogger.com0tag:blogger.com,1999:blog-1223193381579381075.post-19769823308332553532015-07-24T06:44:00.001-07:002015-07-25T05:31:20.375-07:00The HunchThree years ago my body went from experiencing a normal amount of occasional stress to seeming to be in a constant state of "preparedness". By that I mean, I feel like I am in a constant state of waiting for whatever's going to happen next. Throughout the day, I often remind myself to stand up straight as I feel most of the time like I am always hunched over, bracing myself. Imagine a wrestler getting ready to begin a match, but I know my stance is probably barely noticeable to anyone but me. When I remind myself to push my shoulders back and relax, I am not actually crouched down preparing for battle, but I instantly recognize that feeling within myself, and I try to relax a bit. <div><br></div><div>I don't believe this feeling of waiting, watching, and <span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">worrying about what dreaded thing will happen next is exclusive to parents of children who have received a diagnosis such as Lu's. I imagine people can wind up feeling this way for jillions of reasons: a terrifying car accident, the sudden death of a loved one, being in remission from cancer, a home invasion...the list could go on and on. And maybe there are only certain personality types that would react to traumas in their life this way, I don't know. But, as is the nature of Rett Syndrome,it never stays the same; Dr. Sasha calls it "a moving target". It is always changing and so how can I not constantly be on my guard for what it is going to throw at Lu next? How?!</span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">Since the time of her diagnosis, she has lost the rest of her functional hand use. One day I had to admit that she couldn't turn the pages of her board books anymore, which was something she used to love to do. She had little bins of them and she would pull them out and flip through them and look at them so intently:</span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-HGxslAwhBsI/VbJBIHHmh9I/AAAAAAAAD-I/FbsHS0p8VX0/s640/blogger-image-1136379426.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-HGxslAwhBsI/VbJBIHHmh9I/AAAAAAAAD-I/FbsHS0p8VX0/s640/blogger-image-1136379426.jpg"></a></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-Qp3S7v3REO0/VbJBLYr8ceI/AAAAAAAAD-Q/s3Rbqz0VLKM/s640/blogger-image--1510184802.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-Qp3S7v3REO0/VbJBLYr8ceI/AAAAAAAAD-Q/s3Rbqz0VLKM/s640/blogger-image--1510184802.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Back when these pictures were taken we had no idea that within two years this simple act would be an impossibility for her. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Here is a picture from the summer where she began losing her ability to sit up on her own:</div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-K1gptcQzfoQ/VbJBTGoeqoI/AAAAAAAAD-g/FyryqqrFPXY/s640/blogger-image-173885371.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-K1gptcQzfoQ/VbJBTGoeqoI/AAAAAAAAD-g/FyryqqrFPXY/s640/blogger-image-173885371.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">And before she lost the ability to scoot all over the floor, which she could do for a very brief time:</div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-jctj1aZarAs/VbJBEy2aiYI/AAAAAAAAD-A/UNjqJTCj9RU/s640/blogger-image--2104940218.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-jctj1aZarAs/VbJBEy2aiYI/AAAAAAAAD-A/UNjqJTCj9RU/s640/blogger-image--2104940218.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Of course there was her mouth losing the ability to eat enough to maintain a healthy weight and the placement of her feeding tube:</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-gJ0wrf9AfPM/VbJBPpscsiI/AAAAAAAAD-Y/xwaqsIE-rzM/s640/blogger-image--1555885734.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-gJ0wrf9AfPM/VbJBPpscsiI/AAAAAAAAD-Y/xwaqsIE-rzM/s640/blogger-image--1555885734.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">And now seizures that leave her exhausted afterward, and even recently made her lose consciousness before the seizure had ended because she was not breathing:</div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-AaTk8IwPXmg/VbJBBAc5jPI/AAAAAAAAD94/licOss-7heE/s640/blogger-image--901222182.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-AaTk8IwPXmg/VbJBBAc5jPI/AAAAAAAAD94/licOss-7heE/s640/blogger-image--901222182.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Tooth grinding, hyperventilation, breath holding, constipation, changes in muscle tone...it just never ends, and never stays the same, and never stops terrifying me. I guess the old cliche "waiting for the other shoe to drop" is fitting, but in this case I am waiting for her spine to start curving, or waiting for her first case of pneumonia, or for her heart beat to become irregular, or any other number of things that can go wrong, and may or may not. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">So, while it would be beneficial for my body and mind to be able to relax a little bit and "un-hunch", I just can't. Lucy's life and health, and well-being are in Chad and I's hands, all day, everyday. It is every parents' job to keep their child alive and safe, but when extra health concerns are thrown in, I am literally, day in and day out working to keep her healthy enough to live. Not only JUST healthy enough to live, but to live AND have a quality of life that helps her to make friends, have new experiences, become educated, and happy. Not worrying about these things is not an option, we must be ever-vigilant, always standing guard and trying to keep Rett Syndrome at bay the best we can.</div></div></div><br></div><br></div><br></div><br></div><br></div><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div><br></span></div>Anonymoushttp://www.blogger.com/profile/09668216042641622048noreply@blogger.com0tag:blogger.com,1999:blog-1223193381579381075.post-27473459646485474562015-06-16T06:13:00.000-07:002015-06-16T06:58:15.737-07:00With a little help from her friendsChad is my very best friend. There is no one I'd rather be on this journey with day in and day out besides him. We drive each other bonkers sometimes, but even then, I just always prefer to be with him. I have a few other very good, close friends that I cherish. I have many lovely acquaintances through real-life and through the Internet. People I knew long ago and haven't seen in many years, and people I have never met at all, but who understand the life I now live as Lucy's mom. I don't put a lot of stock in the number of friends that I have, or the frequency with which I get to spend time with them, but with the strength of the relationships I have, and the quality of the time we spend together.<br>
<div>
<br></div>
<div>
People who interact with Lucy in her life run through a whole spectrum of quality, caring, closeness, and understanding. There are people who treat her like a baby, or like she doesn't understand them, even if I have told them she does. Some people treat her just like any other five year old. Many, many people love and admire her. She is lucky to have many cousins close by, ranging in age from younger than her to much older than her, who love her and include her as much as they can when they are together. And, she has some actual, good friends that we see when everyone's schedules permit for it. </div>
<div>
<br></div>
<div>
One such group of friends I have mentioned before in my blog, the Weber brothers, Miles, Chase, and Isaac, have become a very important part of Lucy's life over the few short years they have known each other. Back in early the spring we went on a little outing with them, and I wrote about it here:<a href="http://teachinglu.blogspot.com/2015/04/quality.html" target="_blank">"Quality"</a>.</div><div>A few Saturday's ago we went out with them again to lunch at Eat N Park, and then to the Arboretum at Penn State and it was a truly wonderful time. </div><div><br></div><div>At lunch, Miles, the oldest, asked Lu what her favorite color is. I helped her navigate to the colors page and then let her take her time to choose. Several minutes passed and we kept on with other conversations as we waited for Lu to choose. I looked over at Miles who would glance at Lu, and then back to everyone else, and I said she just needs to take her time sometimes, but she'll answer him when she's ready/able. He just nodded his head patiently and was simply more calm, and more accepting of these anomalies in communicating with Lu than even most adults ever are. I have noticed that the majority of people feel the need to fill the silence that comes from waiting for her with chatter that often is more distracting and makes her feel more pressure than just waiting patiently. The frequent refrain is, "What are you going to say Lucy? Tell us something!" This drives me crazy mainly because this is not how you would interact with a person who can speak with their mouth, so it's not appropriate for talking to Lucy either. Miles seems to understand this, even though he is only 8, and never talks to Lucy like this. While waiting, Chad suggested that Miles tell Lucy his favorite color and he said purple. Lucy eventually said her favorite color is also purple! </div><div><br></div><div>We then went to the Arboretum which also has a nice children's garden and the kids clearly enjoyed themselves. There were little huts to go in to:</div><div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-8zJBmVAMNFo/VYArH0kRcWI/AAAAAAAAD4A/fzrodC4w6Yg/s640/blogger-image--2005424070.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-8zJBmVAMNFo/VYArH0kRcWI/AAAAAAAAD4A/fzrodC4w6Yg/s640/blogger-image--2005424070.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">A stream for wading that Lu and I, and the boys took full advantage of:</div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-RbyKGAUojQM/VYArW7fnvPI/AAAAAAAAD4o/Z1lTF8LeLrI/s640/blogger-image--1877929049.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-RbyKGAUojQM/VYArW7fnvPI/AAAAAAAAD4o/Z1lTF8LeLrI/s640/blogger-image--1877929049.jpg"></a> <div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-uBJd-Qaeds8/VYArE-_g4wI/AAAAAAAAD34/uvCEtwggmYo/s640/blogger-image--1410140359.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-uBJd-Qaeds8/VYArE-_g4wI/AAAAAAAAD34/uvCEtwggmYo/s640/blogger-image--1410140359.jpg"></a></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-NGHbxd9YQ1Y/VYArREUmNII/AAAAAAAAD4Y/VN-kd9zT1sE/s640/blogger-image--1904189335.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-NGHbxd9YQ1Y/VYArREUmNII/AAAAAAAAD4Y/VN-kd9zT1sE/s640/blogger-image--1904189335.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">A cave:</div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-rFkaToPP_io/VYArKypa1FI/AAAAAAAAD4I/4LPQ0D2vKHg/s640/blogger-image-770628007.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-rFkaToPP_io/VYArKypa1FI/AAAAAAAAD4I/4LPQ0D2vKHg/s640/blogger-image-770628007.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Some musical instruments:</div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-nRDmXxn2cjk/VYArZsCdhLI/AAAAAAAAD4w/srLPt-fEAzA/s640/blogger-image--1475257384.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-nRDmXxn2cjk/VYArZsCdhLI/AAAAAAAAD4w/srLPt-fEAzA/s640/blogger-image--1475257384.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">A gigantic caterpillar:</div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-z6vOediZDPU/VYArOJzO5jI/AAAAAAAAD4Q/49fsP9L-Mt8/s640/blogger-image-595826079.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-z6vOediZDPU/VYArOJzO5jI/AAAAAAAAD4Q/49fsP9L-Mt8/s640/blogger-image-595826079.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">And an amazing fountain at the end:</div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-x0SrN8Q4jsA/VYArchpzKTI/AAAAAAAAD44/lXJoO13kRAE/s640/blogger-image--1793715498.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-x0SrN8Q4jsA/VYArchpzKTI/AAAAAAAAD44/lXJoO13kRAE/s640/blogger-image--1793715498.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Unfortunately, between the caterpillar and the fountain Lu had a pretty big seizure and was half asleep for the rest of the time. The two younger boys, being younger, ran around having a blast most of the time. Miles (with the brown hair) would join them for awhile, and then come back to spend time with Lucy. The other boys love her too, but I can see clearly that Miles has a very special spot in his heart for Lucy. It seems to just be in his nature to slow down and try to understand what it means to really be her friend. For this I am so very grateful. I have known Erin, the boys' mom, since we were little. We have been friends for a very long time, and it really is not surprising that she and her husband have created such caring and tender children. Erin is kind, thoughtful, and loving, just like her boys. Chad, Lu, and I are looking forward to many more lovely days spent together. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">From the fountain to the car, which was quite a distance, this is what melted my heart with every step:</div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-3a6UrkJ-lQQ/VYArT7GlhQI/AAAAAAAAD4g/90_6fH10b-8/s640/blogger-image-128253660.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-3a6UrkJ-lQQ/VYArT7GlhQI/AAAAAAAAD4g/90_6fH10b-8/s640/blogger-image-128253660.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Just a true friend...</div><br></div><div class="separator" style="clear: both;"><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"> </span></div><br></div><br></div><br></div><br></div><br></div><div class="separator" style="clear: both;"><br></div></div><br></div><br></div>
Anonymoushttp://www.blogger.com/profile/09668216042641622048noreply@blogger.com2tag:blogger.com,1999:blog-1223193381579381075.post-42286934567045158002015-06-05T05:49:00.001-07:002015-06-05T07:05:10.302-07:00Ups and DownsAs the title suggests, we have had a lot of ups and downs lately. I have felt a little more down than up and didn't want to write a big downer post, but there have definitely been some bright spots in our days, so I'll share it all. <div><br></div><div>Lu got a UTI. We have to cath her at the doctor's office to check for this. I have tried for several years to get successful samples here at home, but they are always contaminated and can take weeks to get. Just like all other motor activities, if I request that Lu try to pee, her body just seems to freeze up and she doesn't go until I take her off the potty and put her diaper back on. The doctor and nurse were terrified the first time they cathed her stating it might be very traumatic. I said, "Listen ladies, Lucy had four seizures yesterday. She has had a surgery to put a tube in her stomach. She's had three extended eegs, in addition to all she deals with daily...I think she'll be okay. She's tough. And it has to be done." And she is tough about it. She fusses a little, but it's not like a totoal freak out or anything. </div><div><br></div><div>So, it was positive for a UTI, we did a round of antibiotics, and when she was retested after we knew the antibiotic would be done doing its work, she either still had it, or had it again. We started a stronger antibiotic and this past Monday we did a renal ultrasound to check her bladder and kidneys. Everything looked fine, except a tiny, insignificant amount of pee left in her bladder after voiding. So we don't know why it's not clearing up, but hopefully the antibiotic will work this time. </div><div><br></div><div>We also saw Dr. Sasha a few Friday's ago. She said Lu is a star! (We know!) But, she also said that she is getting too heavy now and the heavier she is, the harder it will be for her body to manage itself. Dr. Loizides, the GI doctor we see in New York had already decreased her caloric intake by a whole can in the appointment we had before Dr. Sasha's so hopefully that will help. I knew they were going to say that. Dr. Sasha also urged us to maximize Lucy's use of her stander to help keep her heels stretched out, which I guiltily knew I had been slacking on. What is hard, and I imagine this is true for any parent, not just a special needs parent, is that there's always something you are missing. There is always something that isn't getting the amount of attention it needs. But then when you also add in all of the medical and physical needs that go with Rett Syndrome, it just can be so overwhelming sometimes. Lu totally rocks at communication! We practice walking every day. We work on reading, and art projects, and gardening, and whatever else we find time for, and then I realize I'm totally neglecting her need to use her stander. So...</div><div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-dIzY59bU7yQ/VXGgWNwhI8I/AAAAAAAAD2A/km2u_tEZGVc/s640/blogger-image--1447885173.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-dIzY59bU7yQ/VXGgWNwhI8I/AAAAAAAAD2A/km2u_tEZGVc/s640/blogger-image--1447885173.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">And...</div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-9gS4PsKlqIw/VXGgTWppm8I/AAAAAAAAD14/f7CaAOUDLR0/s640/blogger-image--1835205360.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-9gS4PsKlqIw/VXGgTWppm8I/AAAAAAAAD14/f7CaAOUDLR0/s640/blogger-image--1835205360.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Also, because she has grown so much Dr. Sasha increased some of her meds. We are also trying to adjust her Depakote to try and not have any of the big seizures that put her to sleep afterward and recently she has had an increase in these kinds. She had two just this past Tuesday and then another on Wednesday. In addition to those, Lucy's body has just been in constant vibration mode all week. Unless she's asleep, her body has been so, so shaky and so much more out of control than usual. She has been emotional, and loud, and agitated. Two nights ago she woke up at 3:00am and could not fall back asleep until 8:00am. It is breaking my heart. I don't know what's causing it all, maybe the antibiotic, maybe discomfort from the UTI, maybe the med increases? I just don't know. I'm just doing my best to comfort her and keep her body as calm as we can. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">On the bright side though, Lu and I took a special trip to Barnes and Noble last Friday. It was Lucy's first time at an actual bookstore (the majority of Lucy's books are used from Goodwill, Kid to Kid, yard sales, and online). We went to a bookstore after Lucy said with her Tobii, "Let's go, shopping, home, leave" and when I asked her what she wanted to shop for she said, "book, story". When I asked her what she wanted a story about she said, "Viking, Abby Cadabby, traffic, bike, bus, accident" it's always best to have a plan when we go somewhere for shopping because Lu seems to get overwhelmed with all the choices, so I looked on the Barnes and Noble website for books about her chosen topics that it looked like they would have in the store. I then made her a page on her Tobii to look at the books and choose which ones she thought she might like to buy. So this way we made a shopping list for our trip. The good parts of the trip was Lu had a toasted ham and Brie sandwich that she was in love with from the Starbucks that's in the store, and of course it was great that she got to visit a new place. Some not so great parts of the trip were that we didn't find any of the books on our list, and Lu stated most of the time we were shopping that she was "impatient, impatient, frustrated, angry, anxious, impatient, impatient" etc. She even said "embarrassed" once which was perhaps because she was having a very loud day. Anyway, we found some good books even thought they weren't on her list and had a fun day out of the house. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Lucy also got to fly a kite for the first time ever:</div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-KLBydKJtpBg/VXGkYInbPCI/AAAAAAAAD2M/ToOc93jfw9c/s640/blogger-image--110313524.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-KLBydKJtpBg/VXGkYInbPCI/AAAAAAAAD2M/ToOc93jfw9c/s640/blogger-image--110313524.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">We went to a local greenhouse and chose flowers for her garden:</div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-JWtDRcbDudY/VXGkbXkDNyI/AAAAAAAAD2U/o4eDWiPEVdg/s640/blogger-image-2122524701.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-JWtDRcbDudY/VXGkbXkDNyI/AAAAAAAAD2U/o4eDWiPEVdg/s640/blogger-image-2122524701.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Together we chose Lobelia, Snapdragons, Portulaca, Petunias, and Salvia.</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-QDzsbNbTk50/VXGkeCjoxXI/AAAAAAAAD2c/rFUH-nSZQAU/s640/blogger-image-218377989.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-QDzsbNbTk50/VXGkeCjoxXI/AAAAAAAAD2c/rFUH-nSZQAU/s640/blogger-image-218377989.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">And look at her beautiful tomatoes! I'm not sure if I mentioned before but these plants are grown from seeds that I saved from two different heirloom tomatoes two summers ago. The bigger ones on the right are called "Mortgage lifter" and the smaller ones are "Black Zebra". </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-H4nm2bYfpxg/VXGo0n5jNwI/AAAAAAAAD2o/lnG2RgbukOI/s640/blogger-image--1463628475.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-H4nm2bYfpxg/VXGo0n5jNwI/AAAAAAAAD2o/lnG2RgbukOI/s640/blogger-image--1463628475.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">We got a new wicker love seat so we can sit out on the front porch with Lu:</div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-xM8gb2d8wRM/VXGsg3RP0zI/AAAAAAAAD3M/TGCv-ch4mkk/s640/blogger-image--1044858811.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-xM8gb2d8wRM/VXGsg3RP0zI/AAAAAAAAD3M/TGCv-ch4mkk/s640/blogger-image--1044858811.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">We started working on polite ways for Lucy to let people they need to talk to her like she is a big girl and not a baby, because sometimes that happens:</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-x_7cBSo6x-s/VXGseX9Ao-I/AAAAAAAAD3E/GHwucgoeNjU/s640/blogger-image-80642301.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-x_7cBSo6x-s/VXGseX9Ao-I/AAAAAAAAD3E/GHwucgoeNjU/s640/blogger-image-80642301.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">And Lu tried out a little chair we added to her garden area:</div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-RLYwOHoIpTA/VXGsbAuNCpI/AAAAAAAAD28/P7flcMZ872s/s640/blogger-image--1826940420.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-RLYwOHoIpTA/VXGsbAuNCpI/AAAAAAAAD28/P7flcMZ872s/s640/blogger-image--1826940420.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">So, things have been good and bad around here. Or hard and easy? Or happy and sad? All of the above I guess. But through it all, we persevere, for this kid, because she is so tough and brave, wise, amazing, and patient, even though she says all the time that feels "impatient". She really sets the standard around here for how to just hang in there.</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Tuesday morning after a huge seizure:</div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-_HLmIv-uGPc/VXGskPfM4FI/AAAAAAAAD3U/sYTojjAaa_0/s640/blogger-image-1788597411.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-_HLmIv-uGPc/VXGskPfM4FI/AAAAAAAAD3U/sYTojjAaa_0/s640/blogger-image-1788597411.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Tuesday afternoon when I asked her to smile for Daddy so he knew she was feeling better:</div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-k748aN5aPRE/VXGsYb0I9vI/AAAAAAAAD20/FNEpI_DFoEc/s640/blogger-image--1409794189.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-k748aN5aPRE/VXGsYb0I9vI/AAAAAAAAD20/FNEpI_DFoEc/s640/blogger-image--1409794189.jpg"></a></div><br></div><div class="separator" style="clear: both;">I used this quote once before, also in reference to Lucy, but I think I'd like to use it again. It's from the book The Road by Cormac McCarthy:</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;">“What's the bravest thing you ever did?</div><div class="separator" style="clear: both;">He spat in the road a bloody phlegm. Getting up this morning, he said.” </div></div><br></div><br></div><br></div><div class="separator" style="clear: both;"> </div><div class="separator" style="clear: both;"><br></div><br></div><div class="separator" style="clear: both;"><br></div><br></div><br></div><br></div><br></div><br></div>Anonymoushttp://www.blogger.com/profile/09668216042641622048noreply@blogger.com0tag:blogger.com,1999:blog-1223193381579381075.post-25017203035394273012015-05-19T06:07:00.001-07:002015-05-20T06:05:34.032-07:00For the birthday girlToday marks five years of life for Lucille May Shaffer. I can't even believe it! Chad has been saying all year that he can't believe she is going to be five and now she is. I often wish I could relive the moment I first saw her face. Since I had to have a c-section I was paralyzed from like the chest down or whatever, my arms were strapped down, and of course I was exhausted after 14 hours of fruitless laboring. But I remember looking over my left shoulder to see my sweet baby girl for the very first time. I very clearly remember a nurse announcing that she was a girl, because we didn't know yet. <div><br></div><div>I also remember being extremely pregnant, so this was not long before Lu made her appearance, and Chad and I were driving home from shopping and eating somewhere. I pointed out how in a very short time the baby would be here and we would have all kinds of extra stuff to lug around with us. He was just kind of like it was no big deal, babies don't need much...little did we know just how much "stuff" this little lady would eventually need to go anywhere. And as she gets older, it seems like she just keeps needing more, instead of less. But I am thankful that the things she needs exist at all because they are instrumental in improving her health and quality of life.</div><div><br></div><div>The second half of this year has been especially hard (on my heart) since Lucy started having seizures. They are pretty well controlled with Depakote, and even when she does have a "big" one it is very small compared to how severe they could be. They last usually no more than a minute and are assumed to be causing no damage to her brain. However, when she started having them, I let a fear in that I had pretty much ignored up until that point. A fact that I had tried to not let control me is that a small percentage of children with Rett that die suddenly. Rettsyndrome.org states:</div><div><br></div><div>"<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0); font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">The factors most strongly associated with an increased risk of sudden unexplained death in RTT are uncontrolled seizures, swallowing difficulties and lack of mobility. Physical, occupational therapy, nutritional status or living arrangements made no difference in the incidence of sudden unexplained death. Other deaths have resulted from pneumonia."</span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0); font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0); font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">And even though her seizures are controlled, I just began worrying anyway because Lucy also has difficulty swallowing and limited mobility. Both of these things are struggles we deal with constantly. I would by no means say the fear consumes me on a regular basis, but it definitely crosses my mind daily. And then sometimes it does take over and I am incapacitated by it for a very brief time, like an hour or two, and then I pull myself back together. But this is what seizures have brought to me. And so this year as we celebrated Lucy's birthday with a big party on Saturday and today with other special surprises and treats, I can't help but feel that every ounce of me celebrates especially that she has lived another year. Really, not a one of us is promised tomorrow and I realize that. I may not wake up in the morning. However, when a person also has a life-threatening condition, this just compounds the fear of what tomorrow may bring. </span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0); font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0); font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">Lucy and I have been gardening for some time now, usually in containers. And she asks to garden all the time, so for her birthday I had a vision of a raised garden bed that she could wheel up to in her wheelchair and have her very own garden. Chad and his dad built what I had in mind and we prepared it to be ready to show Lu on the day of her party. Lucy and I have been growing Brussels sprouts and two kinds of heirloom tomatoes from seed for a few months now and she finally got to plant them in her own garden!</span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0); font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-5Zk5N2iZLtI/VVyAe2iliwI/AAAAAAAADzw/Fv0coD0E048/s640/blogger-image-1628214491.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-5Zk5N2iZLtI/VVyAe2iliwI/AAAAAAAADzw/Fv0coD0E048/s640/blogger-image-1628214491.jpg"></a></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-urQjiul74NM/VVyAs1U4RrI/AAAAAAAAD0A/Al0jTAYiCLY/s640/blogger-image--139810344.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-urQjiul74NM/VVyAs1U4RrI/AAAAAAAAD0A/Al0jTAYiCLY/s640/blogger-image--139810344.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-l36eG4xhtig/VVyAp_CdJTI/AAAAAAAADz4/esFxrSrcuZ0/s640/blogger-image-687329955.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-l36eG4xhtig/VVyAp_CdJTI/AAAAAAAADz4/esFxrSrcuZ0/s640/blogger-image-687329955.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">She was so happy! We put her tomatoes in big pots on the ground and then we took a trip to the greenhouse yesterday to buy some flowers for her garden also. Her birthday party was also loosely garden "themed":</div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-OYTSc1BFdi4/VVyCRjb251I/AAAAAAAAD0k/CyREsdBlCEs/s640/blogger-image--1812734933.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-OYTSc1BFdi4/VVyCRjb251I/AAAAAAAAD0k/CyREsdBlCEs/s640/blogger-image--1812734933.jpg"></a></div><div class="separator" style="clear: both;">All of the kids got to plant a marigold and take it with them. Here is a picture of the party girl:</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-zvjD7yJ-M2M/VVyCDZHsQAI/AAAAAAAAD0M/Lxp4wJSSfFE/s640/blogger-image-1666472152.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-zvjD7yJ-M2M/VVyCDZHsQAI/AAAAAAAAD0M/Lxp4wJSSfFE/s640/blogger-image-1666472152.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">And here she is surrounded by some of her best buds:</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-u5cxp7Qmlxg/VVyCIQ3AnpI/AAAAAAAAD0U/XTona7-k-xo/s640/blogger-image--969069505.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-u5cxp7Qmlxg/VVyCIQ3AnpI/AAAAAAAAD0U/XTona7-k-xo/s640/blogger-image--969069505.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">And finally being sung to:</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-z5a6dZk5lvE/VVyCOtPOO8I/AAAAAAAAD0c/tfbzXXu8ptA/s640/blogger-image-939668544.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-z5a6dZk5lvE/VVyCOtPOO8I/AAAAAAAAD0c/tfbzXXu8ptA/s640/blogger-image-939668544.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">It was wonderful to have so many people come to celebrate Lucy with us! We are always grateful that we have so many friends and family that care for us and love us. Before the party Lu and I made some homemade seed paper to give to her guests as a thank you for coming and then I asked her if she could tell me a message she wanted to give to her guests. I specifically did not say to thank them, to see what she would say and here is the finished product of Lucy's message and seed paper gift:</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/--giO0DYuuv4/VVyGLRL5q0I/AAAAAAAAD0w/jN01WmFh4LY/s640/blogger-image--1800042309.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/--giO0DYuuv4/VVyGLRL5q0I/AAAAAAAAD0w/jN01WmFh4LY/s640/blogger-image--1800042309.jpg"></a></div><div class="separator" style="clear: both;">Chad and I are so proud that she not only could create a message, but that she said thank you on her own with no prompting from me. We talk a lot about good manners and I am glad it's sinking in!</div><br></div><div class="separator" style="clear: both;"><span style="background-color: rgba(255, 255, 255, 0);">And since today is Lucy's actual birthday I asked her what she might want special for supper and this is what she said:</span></div><div class="separator" style="clear: both;"><span style="background-color: rgba(255, 255, 255, 0);"><br></span></div><div class="separator" style="clear: both;"><span style="background-color: rgba(255, 255, 255, 0);"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-HDnhHPedJh4/VVyGPKSTN3I/AAAAAAAAD04/Kfsozekop8g/s640/blogger-image-1773138315.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-HDnhHPedJh4/VVyGPKSTN3I/AAAAAAAAD04/Kfsozekop8g/s640/blogger-image-1773138315.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">So that is what we will have of course! </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Even though I worry, and each day has its own struggles, I am always grateful for every day we have together. I am grateful that Chad can support us so I can stay home and always be with Lu. I can't believe that five years have passed already. Each day Lucy continues to grow and amaze us with her persistence and grace at tackling this life that is hers for better or for worse. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Happy birthday big girl! </div><div class="separator" style="clear: both;"><img src="webkit-fake-url://b051c608-0e8c-4d5b-b0fd-73695caf6324/imagejpeg"></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div><br></span></div><br></div><div class="separator" style="clear: both;"><br></div><br></div><br></div><br></div><br></div><div class="separator" style="clear: both;"><br></div><br></div><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0); font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0); font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0); font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0); font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div>Anonymoushttp://www.blogger.com/profile/09668216042641622048noreply@blogger.com0tag:blogger.com,1999:blog-1223193381579381075.post-80490101693349866122015-04-19T06:50:00.001-07:002015-04-19T06:50:55.340-07:00#icandomorethanrequestA hash tag has been created for sharing pictures and stories on Facebook of AAC users doing more than just making requests. I posted a picture of Lucy earlier this week and it was the first time I've ever even used a hash tag. I'm not even sure if that is supposed to be all one word or two, but I'm going to type it as two. The idea is that while it is undeniably valuable and amazing for Lucy to be able to make requests, there is more to her and her abilities in using her Tobii and PODD than to just ask for "more". Admittedly, I LOVE it when she says, "I want Tinkerbell doll" or when she asks for a specific snack or to play with her Barbies or My Little Ponies. It makes my heart soar to know what she wants and likes to play with. But she is capable of so much more! She makes statements, asks questions, makes demands, tells us (most of the time) when something is wrong, and can answer questions. She tells people she loves them and greets them and tells them goodbye. And makes requests, all in one day!<div><br></div><div>Before starting this post I looked back through pictures to see what pictures I had of things Lucy has said recently and look what I found:</div><div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-77D0yHGLVXA/VTOyqTE3hlI/AAAAAAAADzI/8_ZN75BUchc/s640/blogger-image--1323559581.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-77D0yHGLVXA/VTOyqTE3hlI/AAAAAAAADzI/8_ZN75BUchc/s640/blogger-image--1323559581.jpg"></a></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;">She asked this while her great-grandparents were on vacation for a few weeks. We usually see them at least once a week and she wondered when we were going to see them next.</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-F84SyBxKG6w/VTOybeMKeFI/AAAAAAAADyo/T2vSbVO3BB8/s640/blogger-image-746137322.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-F84SyBxKG6w/VTOybeMKeFI/AAAAAAAADyo/T2vSbVO3BB8/s640/blogger-image-746137322.jpg"></a></div><div class="separator" style="clear: both;">This was at supper. She is always ready for bed at supper.</div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-cOxyY103tPo/VTOyulTt0KI/AAAAAAAADzQ/vFFT5ozWO3g/s640/blogger-image-1289371227.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-cOxyY103tPo/VTOyulTt0KI/AAAAAAAADzQ/vFFT5ozWO3g/s640/blogger-image-1289371227.jpg"></a></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-iDvL7vA78tQ/VTOynW7C_8I/AAAAAAAADzA/CUk0H4bME2A/s640/blogger-image--1884489851.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-iDvL7vA78tQ/VTOynW7C_8I/AAAAAAAADzA/CUk0H4bME2A/s640/blogger-image--1884489851.jpg"></a></div><div class="separator" style="clear: both;">This was about a painting she had just finished!</div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-diQ3if5fe04/VTOygB0NJuI/AAAAAAAADyw/vjKSwTNFWiM/s640/blogger-image-330501232.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-diQ3if5fe04/VTOygB0NJuI/AAAAAAAADyw/vjKSwTNFWiM/s640/blogger-image-330501232.jpg"></a></div><div class="separator" style="clear: both;">And this was from yesterday after we talked about Chad getting her bike out of the basement for her first bike ride of the year! I asked if she was talking about her bike and she confirmed yes with a head nod. Dad had not forgotten:</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-W0Cc0wIPtyE/VTOyi_Bz5XI/AAAAAAAADy4/-ILK45V7_is/s640/blogger-image--1891482709.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-W0Cc0wIPtyE/VTOyi_Bz5XI/AAAAAAAADy4/-ILK45V7_is/s640/blogger-image--1891482709.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">I am always racking my brain to think of things she might want to say, and what other kids her age might want to talk about. Her and I are always reading a Disney Fairy chapter book and the way the fairies greet each other is to say, "Fly with you" instead of hello. So just this week I added that to a page of greetings I have made for her in her PODD on her Tobii, in addition to what was already there, and she was tickled. She even greeted me with it when I sat down to feed her lunch one day. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">I love the idea of showing the world everything people who use alternative means of communication are capable of. These devices and books, and everything else people use are not just a means for relaying their basic needs and wants. It is the key to letting their true selves out for everyone to see and know. It is a slow, delicate process, requiring a lot of patience, consistency, persistence, and belief in the AAC user. But as time goes on and you see just what your child, loved one, student, or patient are capable of, it makes every ounce of effort worth it! </div><div class="separator" style="clear: both;"><br></div><br></div><br></div><br></div><br></div><br></div><br></div><br></div>Anonymoushttp://www.blogger.com/profile/09668216042641622048noreply@blogger.com0tag:blogger.com,1999:blog-1223193381579381075.post-56911446474926218472015-03-24T06:25:00.001-07:002015-03-24T06:25:42.364-07:00The Pity Smile<div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-Tuege8mW6P0/VRFlz6fa0zI/AAAAAAAADw0/-92DSCQvAvs/s640/blogger-image-2105123458.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-Tuege8mW6P0/VRFlz6fa0zI/AAAAAAAADw0/-92DSCQvAvs/s640/blogger-image-2105123458.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">When we head out into the world, there is no missing us. I understand that. Not only is Lu in a wheelchair, but she has to have a chest harness in addition to the regular lap belt, or she would fall out. She needs to have her feet buckled in to keep them still, and safe. Then we add the big metal bar holding up a device that most people (oddly) assume is some sort of entertainment apparatus. Her PODD book generally hangs from the handle, and sometimes her feeding pump is clipped to the handle as well. And then don't forget her constantly flapping arms, the noises she makes as she holds her breath, and her sometimes very loud vocalizations. I get it. We are not going to go unnoticed when we venture out into public. What I wish could be different about our society in general, however, is the reactions other humans have to seeing a person with a disability.</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">I call it the "pity smile". I also completely understand that this type of reaction is 100% preferable to maybe a look of disgust, or annoyance, or hatefulness. I know. But what I wish others would understand is that WE (the entire community of people living with or caring for people with disabilities) do not want your pity. I have, for the most part, just quit even looking at people as we walk through crowded places, but then occasionally I accidentally do, like this past weekend. We had just finished a very nice lunch out with Chad's mom, and as Chad pushed Lu through the crowded restaurant to get to the exit, we could've been suffocated with the pity smiles. This is what I feel that those smiles say:</div><div class="separator" style="clear: both;">"Oh how sad." "Look at that poor little girl." "Look at that poor family. I wonder why that happened." And so on, and so forth. To people who have never experienced this type of reaction from others, you may think that I am being overly sensitive, making assumptions, or just being silly. But I promise you, I have seen these looks enough times throughout Lu's short life to recognize them for what they are.</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Meanwhile, lunch was a success, Lu ate well, and we are all smiling and happy, so why feel sad for us? Believe me, no one, NO ONE, knows the sadness that comes with a disability as well as the people affected by it. But, what I wish would change about our society is that others could shift their thinking to view the successes, and strength, and possibilities of people with disabilities, instead of just feeling pity for them. I don't want Lu to realize at some point, if she hasn't already, that people often look sad when they look at her, people that don't know her especially. Not everybody delivers the pity smile of course, but sometimes it can just be very overwhelming and frustrating. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">In general, the societal view of people with disabilities is that they are "less than." One of the biggest reasons that I write this blog is to share how Lu defies that view everyday, in every way we can manage. I write to present an alternative view of what life with a disability, or multiple disabilities can be, and that no one needs to feel sad for her or us. I would challenge our society to instead of focusing on the things they see that make them feel sad, to try and look past all of that to find the positives. Like, that even though it is clearly quite an endeavor, we are still out eating in a restaurant, or shopping for a new dolly, or going to the zoo. It is just what I wish for, and as long as we keep proving society's view wrong, maybe someday more people will look at us differently.</div>Anonymoushttp://www.blogger.com/profile/09668216042641622048noreply@blogger.com1tag:blogger.com,1999:blog-1223193381579381075.post-2114138904769463922015-03-22T05:31:00.001-07:002015-03-22T06:06:12.138-07:00Anxiety in Rett Syndrome<div>When you look up Rett Syndrome online, or anywhere else, you will find "anxiety" in amongst the many severe symptoms of the condition. In the past three years I have let that float through my mind as a very vague issue that I didn't really feel we had encountered yet and I wasn't really able to think specifically about what Lucy might become anxious about. In general, I thought she might get anxious in perhaps social situations where she feels like she sticks out due to her differences. Maybe she might feel anxious about going new places, or making friends-the typical things kids and people in general are nervous about. I guess I just thought it might be worse because of everything else that comes with Rett Syndrome. However, over the past month or two, Lucy has clearly told us and shown us two very specific things that have started to make her feel a great deal of anxiety.</div><div><br></div><div>First, since her seizures have started, and she has started taking Depakote, her tremulousness has at least doubled, if not tripled in intensity and frequency. Her body shakes, twitches, jerks, and trembles. At times I need to swaddle her like a baby in a big blanket to help her body calm down. Most times though just a small weighted lap pad put over her arms and chest and tummy, or over her legs, and the use of soft arm braces can help her body to be still for a bit. A squeeze and a hug just isn't cutting it most of the time anymore. We tried adjusting one of her other meds to see if it helped decrease the movement, but it didn't, so it's just what she has to live with now. </div><div><br></div><div>This has had a negative effect on both Lucy's ability to eat safely, and her stability during walking practice. When it comes to eating, sometimes I can barely get the food in her mouth, even though I am constantly stabilizing her chin gently with my hand. And when her mouth does manage to open, and she is still enough to let the food in, her mouth has seemed to resort back to not always knowing what to do with that food. Sometimes it just sits in there. But, what is most scary is that all of the excess movement also includes her tongue movements, and that, combined with breath holding has been making Lucy choke much more frequently on her food. When I say "choke" I don't mean we have had to give her the Heimlich yet, but she just coughs, and panics, and turns red. I have to get in there and scoop food out pretty regularly which is a risky endeavor for my fingers. But one night at supper after having such a choking episode, Lucy said with her Tobii: "understand, nervous" and we asked if she meant did we understand that she was nervous about eating and she said nodded "yes". </div><div><br></div><div>A few days later at breakfast after she had choked again Lucy said: </div><div><br></div><div>"Hate, nervous, cry, hate, eat"</div><div><br></div><div>So I scaffolded to her food pages and asked her to tell me what foods are easy for her to eat, what foods do not make her nervous, and here is the list she created:</div><div><div class="separator" style="clear: both;"><a href="https://lh6.googleusercontent.com/-b36Jk_NnwJE/VQ6-PTX2WoI/AAAAAAAADwg/3dqtSCcbIyw/s640/blogger-image-1851079749.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh6.googleusercontent.com/-b36Jk_NnwJE/VQ6-PTX2WoI/AAAAAAAADwg/3dqtSCcbIyw/s640/blogger-image-1851079749.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">A few notes on her list:</span></div><div class="separator" style="clear: both;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">1.) All of those things are her favorites, and foods she tends to be most successful with, except maybe popcorn shrimp. She does love it, but it is not consistently "easy" for her to eat.</span></div><div class="separator" style="clear: both;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">2.) "Candy" primarily refers to Reese cups. She LOVES them. </span></div><div class="separator" style="clear: both;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">3.) When she said, "everything, hot" I just kind of acknowledged what she said and we moved on, but then when she said, "I need some help, food, cold" I knew that what she meant was that foods that are warm or hot are easier for her to eat than things that are too cold. She has never liked things that are too cold. No Popsicles, only ice cream with a hot sauce on it, even yogurt from the fridge is too cold sometimes. So she was stating that cold foods give her trouble, and that has always been 100% true.</span></div><div class="separator" style="clear: both;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">4.) I know all her favorite foods and what is easiest for her, and even the "easy" foods are giving her trouble lately, but I wanted her to be able to have some control over the situation by helping to decide what she feels most comfortable eating. </span></div><div class="separator" style="clear: both;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div class="separator" style="clear: both;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">I like Lucy to try new things and she knows that, but I also told her that I will try even hard [than I already do] to just give her the foods that are easiest for her. So, the vagueness of Rett Syndrome-related anxiety has lessened in that now we know, in no uncertain terms because she told us, that Lucy is nervous about eating. Eating causes daily anxiety for her. </span></div><div class="separator" style="clear: both;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div class="separator" style="clear: both;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">She hasn't said yet that walking makes her nervous, but it is obvious that it has started to be very difficult for her, due to the tremulousness. Her stability has greatly decreased, as has her enthusiasm for working on walking. She has never been fussy or resistant to practicing standing and walking before, but lately there have been some tears, and a lot of protests on her part. However, on a few occasions she has actually requested to practice walking saying, "I'm telling you something, it's about now, choosing, walking" so we walk. But her anxiety is still present, she is just choosing to try and work through it. I can tell she is afraid she's going to fall, even though I am holding onto her, and the shaking makes the already arduous task of putting one foot in front of another just that much more harrowing. </span></div><div class="separator" style="clear: both;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div class="separator" style="clear: both;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">When I was little I had some pretty bizarre and irrational fears such as we were going to drown when we flushed the toilets, or the car doors, even if they were locked, were going to fly open while we drove down the road. They were just crazy little kid fears that were not really going to happen. But Lucy has to be afraid of EATING and WALKING, things no one should ever have to worry about. Shouldn't we all just be able to eat and walk without a second thought? Of course we should, but she can't. So now I know two very specific causes for anxiety in people with Rett Syndrome. Now I know.</span></div><div><br></div></div><br></div><div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div></div>Anonymoushttp://www.blogger.com/profile/09668216042641622048noreply@blogger.com0tag:blogger.com,1999:blog-1223193381579381075.post-37130187984576978982015-03-12T05:59:00.001-07:002015-03-12T06:14:00.388-07:00Three little words...Lu had a cold again for three weeks and it was miserable. In the middle of the cold was her Daddy's birthday. Throughout the day I modeled for her in her PODD on her Tobii how she could wish him a happy birthday when he came home from work. She slept most of the day and just didn't feel well, so I wasn't sure she would be up to wishing him anything. Well, when we sat down to supper, I reminded her in a whisper what we had practiced. She said with her Tobii that she wanted to use her book- her paper PODD book. As I navigated through the book with her, after each choice she made, she would turn and look directly at her daddy. Her message was, "I love you"! Chad and I both teared up for the obvious reasons, but also because she has very seldomly said this to anyone. We tell her we love her a thousand times a day of course, but I never ask her to tell me that she loves me, or ask her if she loves me. I know she does, and I know she will tell me when she is ready. And here she was ready to give her Daddy the best birthday present in the world! <div><br></div><div>What was also wonderful about the whole exchange was that she didn't do what we had practiced all day- she wished Chad a happy birthday in her own way, and I love that about her so much! Not only that she has the spirit to do things in her own special way, but that she has the knowledge and ability to express herself however she chooses. When we are talking and I am asking her a question about something, I never worry that she is just answering what she thinks I want to hear, because she just doesn't do that. She wants us to know what she thinks and feels- her own genuine opinions.</div><div><br></div><div>So, since Chad's birthday, Lu has been very generous with her "I love you" messages. About a week later she told my mom and I that she loved us while we were at the table feeding her lunch. Then one day when just Chad was home with her she said:</div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://lh5.googleusercontent.com/-eQM7tAoOOgw/VQGNxVFmrzI/AAAAAAAADvk/JznxhfWPFbA/s640/blogger-image-970375033.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh5.googleusercontent.com/-eQM7tAoOOgw/VQGNxVFmrzI/AAAAAAAADvk/JznxhfWPFbA/s640/blogger-image-970375033.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">And then one morning at breakfast she told me she loved me twice within the meal! </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Then at supper a few nights ago she said this to me:</div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh6.googleusercontent.com/-C05iml461Ds/VQGRFMRYqOI/AAAAAAAADvw/Geb3w8_YPAs/s640/blogger-image--1473155730.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh6.googleusercontent.com/-C05iml461Ds/VQGRFMRYqOI/AAAAAAAADvw/Geb3w8_YPAs/s640/blogger-image--1473155730.jpg"></a></div><div class="separator" style="clear: both;">Which is great, because I might tend to be a little silly.</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">So, without asking, with no pressure, Lu has finally started telling us she loves us! With both her book and her Tobii, just whenever she feels like it! It is amazing and I am so grateful that she has the ability to express her love for the people around her. </div><br><div class="separator" style="clear: both;"><br></div></div><br></div>Anonymoushttp://www.blogger.com/profile/09668216042641622048noreply@blogger.com1tag:blogger.com,1999:blog-1223193381579381075.post-24972240630563883932015-02-26T05:25:00.001-08:002015-02-26T17:06:12.276-08:00February 27, 2012Tomorrow will be three years since we found out Lu has Rett Syndrome. When Dr. Coffman called and told me the news, all I said was, "Okay." And he said, "No, it's not okay. You don't have to say that." I feel like I have a weird thing about not being able to react in the way people expect me to in the moment that they expect it, and so what else was I going to say but, "Okay." And although I was floored by what he was saying, and overwhelmed, and devastated, and all of those things, I think I also meant, "Okay...now what? What do we do to help her? What's next?" But that was the difference between us and Dr. Coffman; he didn't believe anything was next. I guess he essentially believed that he had just called me to break the news to me that my life was ruined, and then to invite us out for an appointment where he would provide details on exactly how it was ruined. Screw you Dr. Coffman. Screw you.<div><br></div><div>Now, I firmly believe that if I am going to write a blog about caring for a child with Rett Syndrome it is my absolute duty to share the good, the bad, and the ugly, and I think I do. I have written about many difficulties we face each day. I have written about how hard of a time I have at times just contending with the symptoms of the condition, and all other sorts of not so cheery things, but I do my best to also share the wonderful, amazing, breathtaking aspects of being Lucy's momma...because those things far outweigh the dreary things. What would doomsday Dr. Coffman think about that? We have found more good than bad in the aftermath of receiving this diagnosis. Our life is different, and hard a lot of the time, but most definitely not ruined, not even close. </div><div><br></div><div>This was taken exactly three years ago today, the day before her diagnosis:</div><div><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-T2_LwqNZEZM/VO-XeeTWm-I/AAAAAAAADuI/0jArRW7Kp8o/s640/blogger-image-1236312072.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-T2_LwqNZEZM/VO-XeeTWm-I/AAAAAAAADuI/0jArRW7Kp8o/s640/blogger-image-1236312072.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">And here she is today, a big, beautiful, almost-five-year old girl! </div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh4.googleusercontent.com/-bN9rLrrD0V4/VO_CilMuF4I/AAAAAAAADu4/vTwQWo23NLY/s640/blogger-image--1396445779.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh4.googleusercontent.com/-bN9rLrrD0V4/VO_CilMuF4I/AAAAAAAADu4/vTwQWo23NLY/s640/blogger-image--1396445779.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">And here is a Valentine she made with her OT. She gave it to her Daddy. Oh, and used her Tobii to spell her name herself and tell the OT what order to put the letters in!</div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh4.googleusercontent.com/-0vZNjU1jo7U/VO_CbxnV9VI/AAAAAAAADuw/Yt_BPk8C1f4/s640/blogger-image-799119926.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh4.googleusercontent.com/-0vZNjU1jo7U/VO_CbxnV9VI/AAAAAAAADuw/Yt_BPk8C1f4/s640/blogger-image-799119926.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">And here she is choosing flowers for our garden this summer. Some of her choices include a white Bleeding Heart, a bright orange coneflower, and some "Strawberry Candy" colored day lilies. She used just her yes and no head movements to make those choices. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh4.googleusercontent.com/-gKdwkuUHOjc/VO_CM0WpffI/AAAAAAAADuo/eQUORj_IxMU/s640/blogger-image--1970873156.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh4.googleusercontent.com/-gKdwkuUHOjc/VO_CM0WpffI/AAAAAAAADuo/eQUORj_IxMU/s640/blogger-image--1970873156.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">And just one more: here she is playing her tambourine at the supper table, because she asked to.</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh4.googleusercontent.com/-Xaft2JgJprM/VO_CJaUTKSI/AAAAAAAADug/7R2sRRYrRPo/s640/blogger-image--654694274.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh4.googleusercontent.com/-Xaft2JgJprM/VO_CJaUTKSI/AAAAAAAADug/7R2sRRYrRPo/s640/blogger-image--654694274.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">So, Lucy is spelling, choosing, asking, playing music, and still smiling. I have already said many times before that I will never, ever, ever forgive Dr. Coffman for the out-dated, negative, and hopeless information that he gave to us, and I will certainly never ever forget it. Here we are a mere three years later and Lucy has already surpassed what he indicated we should expect from her life a zillion times over. And again I say, it's only been three years! What will the next three years bring? And the three after that? And after that? All I have to say is, look out world, because here she comes!</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div><br></div><br></div><br></div><div class="separator" style="clear: both;"><br></div><br></div><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><br></div><br></div><br></div>Anonymoushttp://www.blogger.com/profile/09668216042641622048noreply@blogger.com0tag:blogger.com,1999:blog-1223193381579381075.post-82838974357353972232015-02-13T06:15:00.001-08:002015-02-15T05:25:01.146-08:00My Baby Asparagus Patch or "Being Zen"Sometimes people, other parents particularly, will ask me what we have done to assist Lu in continually making progress as a competent alternative communicator. I generally share a summary of these two blog posts that I have written on that exact topic:<div>
<a href="http://understandinglu.blogspot.com/2014/02/just-do-it.html" target="_blank">Just Do It</a><br>
<a href="http://understandinglu.blogspot.com/2014/09/the-hard-way.html" target="_blank">The Hard Way</a></div><div><br></div><div>I often get a feeling though, that my responses are disappointing. Perhaps others think there are some magic phrases we use that make Lu communicate successfully. Like there is some secret ingredient to her success, a silver bullet to just make it happen. But there isn't. We just do our very best to maintain consistency, make sure others do the same, and just do what we were taught. Over and over I say, "It is not work, it is her voice", "no pressure", and of course, "Be Zen". These are not my original ideas as I have made clear many times, this is what we were taught at the PODD training. This is why she succeeds. </div><div><br></div><div>This week I have been thinking especially about the mountainous task of "Being Zen". I truly have no actual idea about what "zen" means in the context of Buddhism or anything like that. I just understand that Linda said Gayle wants people to "Be Zen" in terms of staying calm about the progression of the PODD and not to worry about it ever being a perfect process. That I get. When I was thinking about this earlier in the week, a passage from one of my favorite books popped into my head. From the book, "Animal, Vegetable, Miracle" by Barbara Kingsolver:</div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://lh5.googleusercontent.com/-7wJ0Dy4V5Ks/VN_uQ2vm1iI/AAAAAAAADtI/2qL8HvpymFQ/s640/blogger-image--385351086.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh5.googleusercontent.com/-7wJ0Dy4V5Ks/VN_uQ2vm1iI/AAAAAAAADtI/2qL8HvpymFQ/s640/blogger-image--385351086.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">I included the whole passage for context, but I was mostly thinking of the part that says, "A too-young plant gets discouraged when you whack off its every attempt to send up new shoots in the spring, abuse that will make the plant sink into vegetable despair and die." Bear with me while I make these connections. To be Zen, in reference to using the PODD means not getting worked up when things don't go perfectly. We as the smart-partners are not always going to read the communicator's signals correctly. We are not always going to model eloquently, or at the right level, or in the necessary amount. We need to be gentle with ourselves, this is a new language to us too, after all. But even more important than being gentle with ourselves, we need to be beyond gentle with our children. Not every single thing Lu says with her PODD makes sense. I don't always understand her and even after trying to clarify with her, I still might not understand what she is trying to say, and that's ok. Like a gardener would do with a tender baby asparagus, I let her be. I don't insist that she grow too quickly so that she can become what I think or want her to be. Yes, I want her to be able to fluently communicate right now, or yesterday for that matter. But the secret is to not squash her tender shoots.</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">No matter what Lu is saying, regardless of whether it seems confusing, or whether she is saying the same thing over and over, I just go with it. I comment, ask questions, and generally just validate the fact that she is communicating with me. Just because it might not be how I think she should be communicating, I have never tried to "whack off her attempts at sending up new shoots." Even when she is just exploring, that's essentially what she is doing; putting her feelers out, trying out her linguistic legs, and then, most importantly, waiting to see how the world responds to her. I think she is successful because our response has always been to respond with support, and patience, and to let her language grow without being too hasty to critique it, or trim it.</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Nearly three years ago a doctor basically told us Lucy would never do anything, and so to me each and every word that she says, whether it has a clear intent or not, is amazing. Her body fails her while her mind perseveres. In the midst of seizures, tremors, breath holding, and ceaseless hand flapping, Lu might say, "I want, Barbies" or "I don't like this, crazy" or "Let's go, visit, Bernie, Dr. Sasha, Pappy, Tammy Sue, Dr. Sasha, Dr. Sasha, Dr. Sasha" and it all matters to me. Sometimes she goes to the animals page and says, "pet, baby, cat, Finn, the fish, the fish, the fish, pet bed, etc" and I don't know if that means anything at all, but I keep talking to her about what she's saying. And then other times, like one morning this week, she might say, "I think it's, cool, favorite, something to eat or drink, we, toast, hot,<span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"> crunchy" . She was telling me that the toast I made for her with cream cheese and jelly is her favorite and then described it. And yesterday she said, "I don't like this, silly, angry, angry, pain, on, my, thigh". So I checked her thighs and legs and in the end she said it was actually her shin that was hurting. Also this week she said, "let's go, picinic, kfc" with her Tobii, and with her book she said, "thought, fun, exercise" in reference to playing in the snow. But in the same week, she has probably gone to the health section of the PODD on her Tobii and made a long string of words about appointments, doctors, slings, medicines, etc, with no clear intent, but just to explore. She likes to do the same in the transportation section, and the weather section, but that's how she'll know where words are when she is really looking for them. It's fine. It doesn't mean she is failing. </span></div><div class="separator" style="clear: both;"><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div class="separator" style="clear: both;"><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">I think I've said this before, and I'll say it again now, and I'm sure I'll repeat it in the future, but I don't believe that Lu is an anomaly. I believe all girls with Rett can communicate like she does, it just comes down to how she is taught, the support she receives, and the frame of mind from her support system. The assumption that she CAN do it, in addition to the belief that communication is crucial for children who cannot communicate in the traditional way are both ways of thinking that are indespensible on this journey. It isn't enough for our daughters to have access to communication just sometimes. And it's not going to work if we try to force their progress into a shape that we want instead of letting it just be what it is, all the while modeling proper language that they will inevitably pick up on when they are ready. We just need to try our very best to be patient, and positive, and confident in the process. With that support at their backs, our daughters will talk to us when they are ready. </span></div><div class="separator" style="clear: both;"><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div class="separator" style="clear: both;"><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><div class="separator" style="clear: both;"><a href="https://lh5.googleusercontent.com/-f_y2JV7Uaas/VOCd_fpvsFI/AAAAAAAADtY/HKjJ42GLL5o/s640/blogger-image-933942776.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh5.googleusercontent.com/-f_y2JV7Uaas/VOCd_fpvsFI/AAAAAAAADtY/HKjJ42GLL5o/s640/blogger-image-933942776.jpg"></a></div><br></span></div><br></div><div><br></div><div><br></div>Anonymoushttp://www.blogger.com/profile/09668216042641622048noreply@blogger.com5tag:blogger.com,1999:blog-1223193381579381075.post-86219485031022044002015-02-09T05:56:00.001-08:002015-02-09T05:56:14.598-08:00Sled Riding!Yesterday I ran up to the little local store and the lady who owns it is so sweet and always asks about Lu. Yesterday she said, "What's new?" And wow, was I delighted to say, "Nothing!" Life has been pretty uneventful for the past few weeks and it is a relief! All I had to report was that we had ventured out to try sled riding earlier in the day, for the first time in almost four years and it was fun! It was exhausting, and hilarious, but super fun! We just have a regular sled that Lu could not sit up in on her own, so Chad, much like a sled dog, pulled us around the yard. He was a real Hulk about it too! Lu and I were pretty impressed. And then we made a path down a slight incline and went for some "downhill" rides. Lu and I even crashed once and she seemed to think it was okay and even a little funny! Finn had a fun time also dragging his leash around, unencumbered by me bossing him around. <div><br></div><div>Here's some pictures from the good times:</div><div><div class="separator" style="clear: both;"><a href="https://lh5.googleusercontent.com/-L73RUsqFo3E/VNi8cKUQhII/AAAAAAAADsU/mC3uj6B06UQ/s640/blogger-image--1366590226.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh5.googleusercontent.com/-L73RUsqFo3E/VNi8cKUQhII/AAAAAAAADsU/mC3uj6B06UQ/s640/blogger-image--1366590226.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh5.googleusercontent.com/-s8zQSNwqdfg/VNi8ett6jzI/AAAAAAAADsc/B0640XoX6QA/s640/blogger-image--1622586155.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh5.googleusercontent.com/-s8zQSNwqdfg/VNi8ett6jzI/AAAAAAAADsc/B0640XoX6QA/s640/blogger-image--1622586155.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">But then of course didn't Lu wake up sounding a teeny bit stuffy this morning. Hopefully it's nothing. I am fine with nothing being new around here for awhile longer!</div><br></div><br></div>Anonymoushttp://www.blogger.com/profile/09668216042641622048noreply@blogger.com4tag:blogger.com,1999:blog-1223193381579381075.post-40857823065129757882015-01-19T06:29:00.001-08:002015-01-19T06:47:40.606-08:00What might have beenI let some sadnesses simmer pretty close to the surface, but one sadness that I keep buried deep, deep down is my heartbreak at not having any more babies. I know, it's not like it's a rule that we couldn't, but it's just a feeling in my gut that tells me I might not be able to handle it emotionally. But man, I really wish Lu had a brother or a sister sometimes.<div><br></div><div>A few days ago a Facebook friend of mine whose daughter has Rett posted a picture of her daughter and her daughter's twin brother playing dress up and just looking silly and adorable. That night I dreamt that I was searching for some definitive answer regarding the safe amount of weight a pregnant woman can lift. In my dream I just kept thinking, "Is it 42 pounds? Could it be?" Like that was the very most important thing that would need to be sorted out if we were to have another baby.</div><div><br></div><div>And then yesterday, I started feeling very sad that Lu doesn't have someone to play with all the time...someone more fun than her adult parents I mean. I think that missing out on typical play and pretend is one thing that I have never been able to reconcile with. We do our best to play and be fun, but it simply is not the same as Lu being able to use her hands and manipulate her toys. Or use her voice to make up stories and voices, and exercise her imagination out loud and physically. It's just not the same and there is no piece of equipment or adaptation to make it truly authentic. So, last night, out of nowhere, right before bed I was consumed with regret and grief that we have not created a sibling for Lu. My tears began as sadness for Lu and despair that she might be sad, or bored, or missing out. Now, before any anti-homeschoolers jump in with protests that she could play with kids at school, it just isn't that simple. When children that love her and want to play with her are here, even they don't know what to do and seldom include her. She can't follow after them as they scoot around, and she can't do what they do without me helping her, or showing THEM how to help her. In the end it all feels very awkward and forced, and maybe not a ton of fun for anyone.</div><div><br></div><div>But...if she had had a sibling that knew her and loved her, they would've known how to play with her and just "be" with her, like we do. However, in the almost five years since Lu was born, it has simply never felt like we were emotionally, mentally, or logistically prepared for another child. Nobody's choices are right or wrong. I'm happy for people who have been braver than us and made babies after their child with Rett was born. The obvious reason for not doing it that I think Chad and I agree on is just HOW would it work? How?! I don't know how I would even manage to be pregnant and care for Lucy let alone what would happen after a baby was born. I talk about her needs all of the time, but unless you spend a day caring for her, a person cannot truly understand how all-encompassing her care is. Nothing happens in her day without me (or Chad) doing it for her. How on earth would I also take care of a baby, who would also need me for every single thing that happens to it for at least a few years? </div><div><br></div><div>Awhile back I mentioned to my friend, Ann, that we were contemplating the possibility of another baby someday and she said such a sweet and kind thing. She said, "Well, I'm sure that if it's something you are thinking about then you will find a way to make it happen." Yeah, I probably would. I would figure out how to care for two children. So, like the layers of an onion, I'm peeling back the reasons why I won't ever have anymore babies and here is probably the truest, most critical reason: it terrifies me. The prospect of creating another human, growing it inside of me, giving birth to it, and thinking everything is fine just about sends me into a panic attack. However, at nearly the same time I feel the terror, I long for the opportunity to have the whole experience just one more time. Now, not to sound sexist, but I feel like only other women and mothers can understand what I mean when I say that the description of "longing for" the chance to be pregnant again is a gross understatement. It is so, so much more than a longing. It is more like a heartbreaking, gut wrenching, primal feeling that brings tears to my eyes instantly which can easily turn into sobs if I let them. I guess part of it is logically my "biological clock" and the fact that I am nearly 34, but that's not all of it. </div><div><br></div><div>I just want to create another human as amazingly awesome and perfect as Lu, and in turn a sibling for Lu to love, and who will love her like no other child could. But...when I think of being pregnant, one of my most vivid memories of Lu in my belly is of sitting on the couch of a family my partner Joe and I were working with when I was a Family-based therapist, and everybody in the room could see her moving around in there. As I write this I wonder if it was the day my water broke and that's why I remember it so clearly, but then what I think is how I just might not even be able to contemplate what it would be like to have another baby in there, and watch it move around, but this time be terrified that something is happening in there, unbeknownst to anyone, that will make that baby's life hard too. Chances are very slim, yes I know! I know better than anyone who might make that statement to me, but I also know of families where things did happen twice. Where a second baby also had a random condition caused by a spontaneous mutation in a chromosome. It happens. And when you are a family that thought, just like anyone else, that surely everything would be fine, and then it wasn't, it's a whole hell of a lot harder to believe that it certainly couldn't happen to you again...because it could. And honestly, it's not the prospect of having another child with special needs that terrifies me, we are pretty adept at that part. It's the sorrow, and the grief, and a second set of broken dreams for a child that is going to miss out on so many of the typical things humans get to experience in life that I fear the most. These are heavy things to carry around, and I just don't think I could carry anymore. </div><div><br></div><div>But, the fact of the matter is, in spite of all of this, I still get into a sadness every once in awhile about the baby I wish we had created, or the baby I wish we still were going to create. Chad and I love being parents. Lucy is our world, and the light of our life. I just assume another Baby Shaffer would only make our lives even more full of love and happiness, but the confidence in procreation that people take for granted each day has been stolen from me. Everyday, millions of women find out they are pregnant and they instantly assume everything will be fine. I have lost that faith, and I feel robbed. </div><div><br></div><div>I know this was long, and sad, and gloomy, and I don't even care if nobody reads it, or if anybody cares for it. It just made me feel better to try to express the agonizing conflict I have in my heart about making babies. I'll get past this sadness, like I have in the past, and I'll cram it down deep inside of me, and hold it there firmly, until something else comes along that loosens my grasp on it and let's it float back up to the surface.</div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://lh4.googleusercontent.com/-DZekGi_3Rck/VL0ZB3yrBjI/AAAAAAAADrE/PbnCrqYa1OM/s640/blogger-image-1156240102.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh4.googleusercontent.com/-DZekGi_3Rck/VL0ZB3yrBjI/AAAAAAAADrE/PbnCrqYa1OM/s640/blogger-image-1156240102.jpg"></a></div><br></div>Anonymoushttp://www.blogger.com/profile/09668216042641622048noreply@blogger.com1tag:blogger.com,1999:blog-1223193381579381075.post-57195662717829633112015-01-11T14:06:00.001-08:002015-01-12T14:01:03.182-08:00Still recovering!So, Lucy is still not 100% better. She's working hard on it though. Last Sunday she woke up with her cough worse again and a fever of 102.7. When she went to bed the night before she had had a great day and we thought for sure it would all be over when she woke up, but it wasn't. So, we took her back to the doctor on Sunday afternoon, and he said it was time for an antibiotic. Lu had only had two other antibiotics in her life so far, one for the beginnings of an ear infection, and one for and infected toe nail and she has never had any trouble with taking them. Well this time, on Augmentin, she developed severe, nearly constant diarrhea. It started Tuesday morning, and just yesterday started to subside. I quit giving it to her Thursday morning, before the doctor said to quit because I just couldn't bring myself to make her take it anymore. Her bum was so, so red and sore, but after 24 hours of no diarrhea it is finally starting to look a little better. She still is just a tiny bit stuffy, and has a little cough, but I think she is hopefully almost well. <div><br></div><div>Neither Chad or I managed to get her sickness in all of this time, until Friday. My throat started hurting, and I just have a little cold, and have been trying to rest and get lots of vitamin C, so I'll be fine. Lu even went up to visit Grammy and Pappy for a couple of hours Sunday afternoon while I napped and Chad tried to get some work done. So, Lu has been sick since Christmas Eve morning, and she is finally, really, hopefully on the mend. Hopefully!</div><div><br></div><div>At supper on Saturday night Lu said, "I want, Sesame Street figures", so I obliged her since she was actually feeling better enough to request toys. And then this is what she said, </div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://lh6.googleusercontent.com/-bPf8Djt6fj0/VLREGG1JQWI/AAAAAAAADqI/caNDNSJxX5I/s640/blogger-image--585495291.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh6.googleusercontent.com/-bPf8Djt6fj0/VLREGG1JQWI/AAAAAAAADqI/caNDNSJxX5I/s640/blogger-image--585495291.jpg"></a></div><div class="separator" style="clear: both;">In case it's too hard to see, she said, "I think it's, fun" and then added "see you later" to the end for some reason.</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Here is also a picture of her from last night showing off her kitty cat socks to her Daddy and feeling pretty good:</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh3.googleusercontent.com/-XRNnZKR631E/VLRECK2G1MI/AAAAAAAADqA/96RQO0khEgg/s640/blogger-image-834626784.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh3.googleusercontent.com/-XRNnZKR631E/VLRECK2G1MI/AAAAAAAADqA/96RQO0khEgg/s640/blogger-image-834626784.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">And then a final bit of good news and evidence that she's feeling a bit better, today at Lunch, Lu said she needed to use the potty and so I took her back and she had a normal poop and even peed! She was pleased with herself and I was so, so, so happy that it wasn't diarrhea. So, hopefully this is coming to an end and she'll be 100% back to herself. </div><br></div><br></div>Anonymoushttp://www.blogger.com/profile/09668216042641622048noreply@blogger.com0