Healthy and happy

I'm not sure if you can tell in her face as much as I want from these two pictures, but Lu has gained over 5 pounds since the top picture was taken. January 1st. If it is not as obvious in her face, take a look at her thighs. In the top picture she is wearing size 4T leggings and in the bottom picture she is wearing a pair of size 6x legging-type pants! I had to find her bin of bigger clothes. She not only has not gone up a size in the past year and a half, but she had actually grown back into 4T clothes. So I was a little emotional when I was getting to look through the bin of bigger clothes. It's such a relief to not have this sinking, dreadful feeling in my stomach when I think about clothes for Lu. Putting on her clothes each morning was one of the biggest alarms for me that she was losing weight as her clothes just kept getting baggier and baggier on her. 

But now she looks so plump and healthy! Everyone who sees her almost immediately comments on how her face is fuller.  I have noticed her hair even looks healthier! In the bottom picture Lu is practicing sitting on her own without falling over (and doing awesome!), AND helping to fold laundry at the same time! We have even started trying to work on scooting on her bum again. All because she has the energy and sustenance to thrive. 

Just Do It

Linda Burkhart, the wonderful woman who has trained us to use the PODD, told me a month or so ago about a version of the PODD that Gayle Porter (the creator of PODD) took a year to create for use on a high tech device, such as Lu's Tobii. It has been created in a different software than what I am used to using on the Tobii. The new software is called Grid2 and I am learning what I need to learn to use it. You can download a 60 day trial version of the things you need to see how it works for you. Visit this link: www.sensorysoftware.com     What you will need to download is: a trial version of the Grid 2 software, a trial version of the PODD grid set you want to use, and a trial version of a license to use Mayer Johnson's PCS symbols (having Boardmaker will not help you).  We have been using the trial version for about a month now and it has been amazing! And, the Intermediate Unit has purchased the software for us to use, we are just waiting for it to arrive, so that's an option to keep in mind.  Here is a link to where we purchased the three pieces of software that we needed in a bundle: http://www.zygo-usa.com/usa/index.php?page=shop.browse&category_id=151&option=com_virtuemart&Itemid=11

Just to clarify, when I say, "new version", it is still the PODD! It is just a little bit different, and way more efficient than the homemade version people might be using of the PODD on the Tobii.

And here are some awesome things Lu has said with the Grid 2 version of the PODD on her Tobii:

Let's go, in the car, visit, pappy"

"I don't want to do it, let's do something else"

"I want, our, garden, yummy"

"Lucy, yours, play, music, loud, yours, loud, song". I asked her if she wanted me to play music on my iPad for her and she said yes. I asked her if she wanted to hear our favorite song, which is "I'm Yours" by Jason Mraz and she said yes with a big smile and squeal!

"Have, pain, my, tummy, tired, I don't like it" she said this at supper last night. I think she was just full, but we vented her and she seemed ok, but wow! That was like a sentence! 

I have a confession to make: over the summer, the paper book and I had a falling out. I have finally come to realize it was not the book's fault, or my fault, or Lu's fault. It was just stupid Rett Syndrome's fault, as usual. I have mentioned that Lucy had a summer with a lot of changes. Her tone increased quite a bit, so she has become more stiff. She developed some dystonia in her mouth, and head, and neck which causes her to move and sit differently. She started hyperventilating, and now it has become breath holding. These are all common symptoms of Rett, I realize now. At the time, we were frantic about what was happening to her, and why was it all happening at one time. It was like she was under attack, and I guess really she was. 

So, we didn't have her Tobii yet and all of these changes were making things very difficult for Lu to move her body in the ways she was used to. I am sure she was also confused and terrified, as we were just watching her, I can't imagine what it felt like to be her. So, we still carried the book everywhere, but Lu used it very little. Occasionally she was able to get something out. One time it was that it was too hard, and she wanted to do something else. Quite honestly, I was just so mad and confused, I didn't really promote the book's use like I have always done in the past. I kind of acted like it was a jerk that had betrayed us, when in reality it was of course Rett Syndrome that was the jerk, because it always is.

So, fast forward 6 months or so. We have the Tobii, it's great, but Lu is most definitely not relaying messages with the ease and fluency that she did with her paper book on the homemade PODD that we have on the Tobii. While talking with Linda about the new Grid 2 software, she suggested that I add a button to Lu's Tobii where she can ask to use her book. And low and behold, Lu wants to use her book! She does still love it just like she always has, but now she can choose between the Tobii or her book and she is doing great! 

A second important thing I have discovered is that she and I have both adjusted to what her body does now, and she can do her yes and no head movements just like before...well, it isn't just like before exactly. It takes longer, her yes needs some practice, but she's doing it and I understand now that while it looks difficult for her, as it did back in the summer, it's just how it is now, and she still loves using the book, and she wants to use it, and tells me so often.  I just forgot to "Be Zen".

Here are some awesome things she has said with her book:

 "I think it's, you, fun, not, school"

"I want, want, hug, it's about now"

"Let's go, in the car, you, me, can't, it's about now, I love you." She said this on a snowy day when we had been planning to go to the library, but it was too bad out!

Earlier this week her slp was finishing up their session and Lu said she wanted to use her book, and she told Roxann, "Goodbye" 

The final thing I want to say goes back to the title of this post, "Just Do It". I see people post often about just not knowing what to do with the PODD, it's not working for them, they need to learn it better, etc... My piece of advice on how to be successful with the PODD is to just do it. Anyone who has been trained in it officially has been trained by Linda, and you just need to do what she says. That is why Lucy succeeds, because I went to the training, listened to what she said to do, and we do it. As I have just confessed, we have had bumps and set backs along the way, but nothing and nobody is perfect. When Dr. Sasha said this would work with Lu, I did not doubt her. I personally believe that if Dr. Sasha says something, then it must be true, so I went to the training with that mindset. And then after being trained by Linda and learning about Gayle Porter, I have come to have the same confidence in them: if Linda and Gayle say it, it must be true. 

The PODD is Lucy's language and it must be with her, and available to her at all times, whether it is in the form of the Tobii or the paper book, or both. She NEEDS to know that she can tell me something and that it is important to us to hear her. She NEEDS to know that we believe she has things to say, and that we believe the PODD is the best way for her to say them. If you don't believe that, and maybe some people don't, then it will not work well for you, just like it wasn't working for us when I lost faith in it. But, Lucy has told us such amazing things using the PODD as her language, that I do believe it is best for her. 

It just makes every day so rewarding for all of us when she can talk to us. Yesterday she asked for mustard on her cheese at snack. At supper, I was giving her some tiramisu for dessert, but was not having any myself because I hadn't eaten anything yet, and she said she wanted to use her book, and said, "we have to share", and then "more, please"! What a sweetie and manners too! So, the PODD has changed our lives and continues to do so, because we just do it. We just do what Linda taught us, and it works. And Lucy can tell anyone she wants, anything she wants, anytime she wants.

Mid-winter Slump

There are several versions of the stages of grief, some versions have more stages.  It is generally used to explain a person's grief when someone dies. The idea of stages of grief can also be applied to diagnoses of chronic conditions...like Rett Syndrome. For myself, I don't know that I ever experienced denial. Shock yes, but denial, no. Anger? Oh yeah; then, now, and I'm sure many more times in the future. "Depression and Detachment", unfortunately, yeah. I don't bargain. And I don't try to find "meaning" in why this has happened to Lucy, because I don't believe there is a reason. It occurs randomly. I would say we started accepting it long ago, however, I yo-yo through these stages all of the time. At the end of the month it will be two years since we received Lucy's diagnosis, so for the most part, I would say I am generally residing in the "Acceptance" stage and we are getting on with life. 

But, sometimes I am still filled with rage. Every once in awhile I am shocked again that this is our life, and that this happened to our daughter. And then sometimes I am just sad. I am having a period of sadness right now that is making me pretty glum. I'm sure that the fact it is the middle of February and Lu and I barely leave the house right now is contributing a great deal also, but I'm just feeling blah. And sometimes my emotions mix a little anger in there just for good measure.

I wanted to share a surprising revelation that I have had in the past month or so. Two different ladies that I see often were reading my blog. Both of them commented on feeling surprised when I talk about how hard of a time I have sometimes with just existing in the this world of Rett Syndrome and dealing with all that comes with it. They both said that I always seem to be handling everything so well, and they never would've guessed how I struggle at times. I guess it is good that I present myself in that way, and I guess I do manage fine most of the time. The thing is, when Lucy is awake, the only I option I see is to be brave and strong and "with it" for her. She does not need to see me (or anyone else) cry about her. That is not functional, or helpful. She deserves better. But, the other night, after she went to bed, I cried and cried. Just because I have been feeling sad. 

I read an article a few weeks ago, or maybe a blog post, by a mother whose daughter had died suddenly, weeks after birth. Her article was about how eventually the people in her world seemed to think it was time for her to "get over it". They were tired of her being such a downer, basically. I have never felt that vibe from any person in our life, and for that I am so grateful. But the fact of the matter is, I will never "get over" this. That poor mother will have her daughter's absence as a constant and painful reminder of what happened to her, so how could she ever get over it? I have Lucy's presence, thankfully, as a constant reminder that Rett Syndrome exists. Chad and I always say, at least she is here with us. Maybe because death is final, people can move through the stages of grief and hopefully remain in the acceptance stage in the end. The diagnosis of a chronic condition is not final, it is continuous and I think that is why I slide in and out of the stages. 

Dr. Sasha calls Rett Syndrome a moving target. So, when we think we are getting a handle on one symptom, something else pops up that we need to adjust and adapt to, and we do, but it just sucks. I have thought maybe this is why I have been feeling down in the dumps. Because of her feeding tube, Lucy now weighs 33.4 pounds! That's almost five pounds she has gained so far and that is wonderful and amazing, and a relief, and makes us so incredibly happy! But...then I think how will I carry her when she gets too big, how will we do things that we do now because I can just carry her? Because even as things change, even if it's for the better, what will be likely to not change is her ability to walk independently. I guess that is probably a fact at this point. 

I have been wanting to write a post, but I didn't want it to be whiny, and all I have been feeling is whiny. But as I write this, I am thinking it maybe helped me to understand why I have been feeling so sad. Because there is no end to the difficulties Lucy will face. There is no end to the struggles Chad and I will have as her parents. It will always be one thing after another because that is how Rett Syndrome is and I am just letting that fact get the best of me right now. I don't usually let that happen. Rett Syndrome does what it wants with Lucy, but the Shaffers don't generally let it get us down or boss us around. I'll bounce back.

So, I guess I also want to say thank you to all of the people in our life who stick with us, and support us, and always care about us. Thank you for letting me feel sad, when I'm sad, and for celebrating every little accomplishment, no matter how tiny. Thank you for not insisting I "get over it" and understanding this isn't something that will ever hurt less. Thank you for just being with us, and not trying to push us or pull us into what you think we should be, or how you think we should feel, or how you think we should be behave. Thank you.

Getting Back on Track

 Well, today begins Lucy's fourth vomit-free day. She did not have a day for about a week and a half where she didn't throw up at least one feed, but she has kept everything down for the past three days, and is doing well so far this morning. It was completely exhausting for all of us. Her especially because not only is it exhausting to throw up, but she was not getting anywhere near the number of calories that she needs, so she had decreased energy again.

On Tuesday, she really started perking up and I wanted to share the things that she said to me throughout the day. I added a button to her Tobii for her to say she wants to use her paper book, which she hasn't used in quite awhile. Much to my surprise, she requests it often. But really, I guess I shouldn't be too surprised; when she was more able to use it before, she loved it very much. So anyway, on Tuesday morning she said she wanted to use her book, and she was a little upset, and she said, "I want (do an activity), want, hug, it's about now." Translation, if needed: she wanted a hug right now!

Later, we were playing baby dolls, and here are the things she said on her Tobii, with the PODD version she has on there:

"I, dress, put on, doll, brush hair."  "Beautiful"

"Bed, hugs and kisses, teddy bear, sing/song, crib, goodnight"

And here she is giving hugs and kisses to the dollie she chose to play with, thirty year old Loraine Loren who was mine when I was litte. 

I have pictures of all of her doll babies on her Tobii so she can choose who to play with and then through the PODD she first said she wanted to change her diaper, and then dress her, and then put her to bed. She also chose that night gown that Loraine is wearing. 

Later in the day we were sharing a snack of mini Oreos which Lu has discovered she loves, and she said with her Tobii: "we, our, like, favorite, good". 

We also have a great set of books by Eric Carle for learning to match words with pictures and we have started working on just two words a day.  The book pages are split in the middle so we can match the words with the picture:

After practicing them a few times, we have been making some kind of little picture or poster to reinforce the word. After we had done four words I made a little "game" on her Tobii with the actual pictures that she made and gave her two word choices below the picture so she could practice matching the correct word to the picture on her own, and she has matched all four correctly at one time or another! Here is a picture of one of the game pages:

One night at supper, after showing her Daddy how she can read words, she said she wanted to use her book, and she proceeded to say, "I think it's, you, fun, not school"! I asked her if she meant that she likes doing school things at home with me better than going to school and she emphatically nodded yes! (Music to my ears!) And then yesterday during speech, she told her therapist, Roxann, that she wanted to use her book, and she said, "Use the bathroom, sit, pee" and I took her in to the potty and she peed! 

I'll tell you what...I hate that feeding tube, the actual physical presence of it, I mean. It makes me nervous, and the hole into her belly totally freaks me out. It is healing fine, but still really grosses me out as it is kind of gunky and you know, just a hole directly into her belly! We had to already put silver nitrate on a piece of granulation tissue to cauterize it, and that was a little terrifying. A few weekends ago we packed up all of the supplies for a day of visiting our family in DuBois, and I cried half the way there because it is just so much stuff, on top of all of the stuff we already were used to bringing along with us. And it makes me nervous to be away from home with her because we have a routine here at home and everything we need is here. And last weekend, Lu had a feeding at Mom's while I had lunch with a friend and Chad just had some down time at home, and after I dropped everything off at Mom's, I cried again.  BUT, even though I hate it, I really do also love it because it is making Lu's life amazingly better, and anything that does that will have an uncontested spot in our lives. 

Waving the White Flag

The Germ

A mighty creature is the germ,

Though smaller than a pachyderm.

His customary dwelling place

Is deep within the human race.

His childish pride he often pleases

By giving people strange diseases.

Do you, my poppet, feel infirm?

You probably contain a germ.

       -Ogden Nash

Lu went back to school last week for the first time since Christmas break. Inevitably she got a little tiny cold that produced an indescribable amount of snot that has been making her throw her feeds up off and on since Sunday. She has no other symptoms, seems fine, but is so congested that it seems her belly is fully of mucous and makes her throw up when we put milk on top of it. I took the above picture on Monday. Her hair is all pulled back to avoid it getting soaked in puke, and in the picture you can see one of the two towels I had her swaddled in. She looks a little paler than she has been looking on her new diet of sufficient calories and nutrition. We have not left the house all week because A.) It's freezing outside, but B.) it is taking over two hours for each feed so she doesn't throw up and then time afterward to let her belly settle. 

Lucy has been sick more in the past 5 months than she has been in her whole life total.  It has felt like we spend most of the time just trying to get her well again from whatever germ she picked up at school. I know that kids get sick a lot when they first start school, but I believe since Lu has not been able to get all of the calories she needs, it has made her even more susceptible to every single stinking germ that comes her way. So, after much discussion and weighing of the pros and cons, Chad and I are throwing in the towel on school. We are waving the white flag, laying down our arms, and admitting defeat.  The germs have won. Our hope is that by gaining some weight, and having months of proper nutrition under her belt, Lu might be able to combat at least some of the germs she would encounter at school, and we can make another go of it in the fall.

When Lucy started throwing up last weekend, Chad commented it was obviously because she went to school that week and got a bug. I told him I was basically waiting for him to give the word that it was time to give up on school because honestly, I had decided in my heart, long ago, what I felt about school at this point. However, most of my reasons are far from the most logical. The main one being, I just like Lu to be home with me. I also wasn't 100% sure that she was ready for school, once we actually started. Other than the constant illness, my reasons for wanting her to stop going were more emotional, and not necessarily the most reasonable. So, as is often the case, I was just waiting for Chad to make a logical decision, because I would know that it really was time if he said so. Lu loved her friends at school and the kids loved Lu, and I hate to take that away from her. However, she is only three. She has her whole life to make friends and "socialize".  I'd rather she miss her friends and not get pneumonia than the other way around. 

So, on the heels of one big decision, the feeding tube, now we have made another one; no more school for Lu right now. It was hard. Her team of therapists and teachers have worked so diligently to try and make school work for her and we appreciate it so much. But, I am looking forward to keeping Lucy healthy, and happy, and whole, right here at home.

The Forest and the Trees

I have discovered over the past few months, a method for coping with how overwhelming Rett Syndrome can be, that seems to be working. I really have to think my Mom and Chad for helping me to develop the method. Sometimes it seems like maybe a daughter marries a man like her father, or a son marries a woman like his mom, but I married a man that is very much like my mom. Chad and Mom are generally in a hurry...I am almost never in a hurry. Mom and Chad like to be able to be in control of things most of the time. I can't speak for Mom because we haven't discussed it much, but Chad and I have talked a lot about how he really likes to know exactly how everything in life is going to go, so he can be prepared. That, however, seldom works out for him. So, I have noticed that often Chad and Mom tend to focus on any small thing that they can fix so at least they might have control over that one thing. Don't get me wrong, I am not saying it is a bad way or wrong way to be. It helps them to cope and that's what matters.

However, one day Chad was worrying about some thing that wasn't especially crucial to getting through our day, and I did a little impersonation (that he enjoyed) of him letting all of the passing trees smack him in the face instead of keeping his eye on the forest. He did laugh and agreed that he lets that happen sometimes, but I also understand that is how he tries to deal. Not many days later my Mom came in the house and exclaimed that she couldn't understand how I could leave kitchen cupboards hanging open. It drives her crazy if her cupboards are open. I replayed the forest and trees impersonation for her also. But, I understand that when life in general might seem out of her control, at least Mom can make sure her cupboards are shut properly, and that helps her.

These two interactions have helped me develop a new way of sorting out what I need to worry about in a day. Some examples of TREES might include: laundry, dishes, cleaning, worrying about my appearance too much, making sure the kitchen cupboards are closed, making sure the house is immaculate (which it never is), etc. 

And here is the FOREST:

And here:

And here:

Chad and I have been working on improving our health. In June my insulin level was 76.6. It should be between 3 and 17. I started exercising, list some weight, and we have been eating better, for the most part, and I just had it retested and it is 11.9 now! Chad has lost at least 21 pounds in the past year. Being healthy is part of the forest because we absolutely need to be able to do a lot of hard work to continue taking care of Lu. We also make sure we get a date together at least once a month for some time alone and to regroup. Maintaining our sanity is part of the Forest.

 The Forest is just all that is involved in making sure Lu is at her healthiest and happiest. If something does not directly contribute to that, then it is just a tree, and we can get to it later, if at all. I would never begrudge Mom and Chad their coping skills, but what I have found is that if I can sort things out between Trees and the Forest, then I can remain more calm, and get less overwhelmed throughout the day. If something is a tree, I just categorize it as such and move on. It has been liberating!

Mothering articles

Below are links to other blog posts I have had the pleasure of being invited to contribute to the online community of Mothering. This site used to also be an actual magazine that I received in the mail, and then it became an online only resource and community.  One day they were asking for bloggers to join their team and I expressed interest and they invited me to join, which was pretty flattering to me. I have a link on the side of my blog to the Mothering website, but it occurred to me that it was probably a pain to find the ones by me, so here they are:

http://www.mothering.com/community/a/all-of-our-free-time

http://www.mothering.com/community/a/making-the-grade

http://www.mothering.com/community/a/being-a-kid-living-with-rett-syndrome

http://www.mothering.com/community/a/our-best-laid-plans-living-with-rett-syndrome

http://www.mothering.com/community/a/cows-and-preschool-homeschooling