Girl Scouts

Some 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. 

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. 

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.

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:

They are called "EaZyhold" silicone grips and they are wonderful. 

So Lucy was able to play with the girls by me just helping to support her elbow and keep her hand over her drum.

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. 

They just include her as a matter of course.

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!

The past few weeks...

We've kind of had a time of it the past few weeks:

A few Monday's ago: 

 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!

In other news, Lucille May has lost her first two teeth also! 

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:

 

"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. 

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.

As I mentioned, Lucy's arms are also becoming a little tight and her wrists have started doing this:

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. 

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. 

Here's the list:

Feeding troubles resulting in feeding tube: defeated us December 2013

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.

Scoliosis: reared its miserable head November 2015, in spite of three years of agonizing over proper seating, standing, walking, and exercising to prevent it

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.

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. 

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. 

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. 

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. 

Not Just for Some

http://www.janefarrall.com/aac-dont-demand-prerequisite-skills/

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.

I'd like to preface my thoughts today with a few facts that I know are true. 

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. 

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. 

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. 

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. 

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? 

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. 

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. 

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. 

"Clever" Lu

Back 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.

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! 

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. 

One of the first clear messages that Lucy created and then spoke out loud to us was this one:

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! 

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! 

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:

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. 

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:

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. 

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. 

Thank 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. 

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:

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:

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. 

Why We Stroll

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:

Newron and breathing drug

New discovery about the X Chromosome
Neuren and Orphan Drug Status

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. 

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. 

What if she could pick her own tomatoes, all by herself?

Or walk without anyone's help?

Or what if she could talk with her own beautiful voice? Without special computers or communication books?

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. 

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!

http://www.strollathon.org/SupportLucy

But 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.

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:

And then one day she said this which was beyond awesome:

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:

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!

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:

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. 

Her love of art continues:

She got to be a flower girl in her Aunt Ashlee's wedding:

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!

The Hunch

Three 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. 

I don't believe this feeling of waiting, watching, and 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?!

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:

Back when these pictures were taken we had no idea that within two years this simple act would be an impossibility for her. 

Here is a picture from the summer where she began losing her ability to sit up on her own:

And before she lost the ability to scoot all over the floor, which she could do for a very brief time:

Of course there was her mouth losing the ability to eat enough to maintain a healthy weight and the placement of her feeding tube:

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:

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. 

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.

With a little help from her friends

Chad 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.

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. 

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:"Quality".

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. 

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! 

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:

A stream for wading that Lu and I, and the boys took full advantage of:

 

A cave:

Some musical instruments:

A gigantic caterpillar:

And an amazing fountain at the end:

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. 

From the fountain to the car, which was quite a distance, this is what melted my heart with every step:

Just a true friend...

 

Ups and Downs

As 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. 

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. 

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. 

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...

And...

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. 

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. 

Lucy also got to fly a kite for the first time ever:

We went to a local greenhouse and chose flowers for her garden:

Together we chose Lobelia, Snapdragons, Portulaca, Petunias, and Salvia.

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". 

We got a new wicker love seat so we can sit out on the front porch with Lu:

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:

And Lu tried out a little chair we added to her garden area:

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.

Tuesday morning after a huge seizure:

Tuesday afternoon when I asked her to smile for Daddy so he knew she was feeling better:

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:

“What's the bravest thing you ever did?

He spat in the road a bloody phlegm. Getting up this morning, he said.”