12.27.11

Merry Christmas and Happy New Year! 

Meeting Caleb

9 lbs, 5 oz, 21 1/4 in

We are so blessed to announce Caleb Edison's birth on December 11, 2011. What a wonderful experience to be able to give birth in our home again. Such a peaceful environment! Due to this miraculous event, I had postponed all of Aimee's doctors appointments until mid-January. Ed has taken 4 weeks of leave from work to help with Aimee as Caleb and I figure each other out. :) What a blessing! When we realized Ed would need to take this time off, we had no idea how it would work financially, but, as always, God has completely provided for our needs. As an added bonus, Ed will be able to build a wheelchair ramp into the house over this next week. This is going to make daily life SO much easier for me. HOORAY!

They love cuddling together

Aimee and Caleb are very sweet together. I am really excited to see their relationship develop as they become more aware of each other. It will definitely be a special one!

What a different experience this has been for Ed and I! Caleb is very alert and interactive. It is much easier to feel the rewards and positives... even to already feel a bond with him at such an early age. While it is hard to not compare to Aimee and to feel some sadness that he is already surpassing her abilities, we are enjoying this time with him. So much easier to have a "normal" experience thus far and to have "normal" issues to deal with that other parents face. It really has made me understand why the experience with Aimee has been so challenging and to feel less defensive about it. Although we love her dearly, we have always wanted much more for her, much more for our relationship with her. Such a sweet girl trapped in such a disabled body and mind.

Funny boy

Beautiful girl

Daddy and his babies

We look forward to continuing our adventure as a family of 4 in 2012. Thank you for supporting us this past year. We are very thankful for the grace and understanding that many have shown towards us in our challenges. We will never, ever forget the amazing blessings that were showered upon us. We will always be able to look back at this year as a milestone in our lives where we learned more about trusting Father God and about accepting/needing help from our community of family, friends, and even complete strangers.



May you and your families be filled with joy, peace, and great love this coming year!

12.6.11

Aimee's old room is being transformed into a therapy and play room for her and Caleb. So our old spare room (ie storage space), has now become the kid's joint room. We had a lot of fun putting it together for them!

Aimee's corner of the room

The humminbird and flower were made by BS Fab & Repair, Ed's sister and brother-in-law's business. So neat!

Rocking corner

Caleb's corner

Train, plane, and truck also made by BS Steel Fab & Repair.
Ed made the paper airplane mobile for Caleb out of Aimee's old butterfly mobile! :)

Changing station

Some signs I made for their walls. I really like having truth written up on the walls. It is kind of like speaking it over them.

11.29.11

Wow, I am behind on updating! It has been a whole month and so many things have happened for Aimee and for us!

We met with Audiology to get new ear molds and were told that it is getting close to the time for testing Aimee's hearing again with a sedated BAER exam. They are trying to balance between not putting her under anesthesia any more than necessary (audiology's concern, they are fine with testing every 2 years) while at the same time tracking all clues and changes (genetics and neurology's concern, they would prefer to test every 6-12 months). In order to balance between the 2, I am holding off on her testing until March or so, which would be about 18 months. Partly, I am also trying to keep December and January as free from appointments as possible.
With GI Nutrition we were able to decide a point in her eating by mouth that we could cut back on her tube feeding volume. When she eats any more than 60 mls (2 ounces), everything above that amount could be subtracted from her meal. Of course, she seems to hover right around 60 mls and is rarely interested or able to eat more without choking. The nutritionist also ordered a blood draw the day we were there to check on Aimee's vitamin D levels. Apparently one of the seizure medications she is on blocks the body's ability to absorb vitamin D. However, the nutritionist called me a couple days later completely in shock, because her lab results showed perfect levels of vitamin D. I'm not exactly sure what I'm giving her that is filling in so well (maybe omega swirl fish oils?), but I'm going to keep it up! Nice to not add another supplement.
At the end of October our microwave died. I know that seems irrelevant, but it was the start of a really not good week. Halloween evening we went to Costco to buy a new microwave. When we went to leave the parking lot the tahoe wouldn't go in reverse. Uh oh. So new transmission and no transportation for that week. I was kind of happy to call and cancel Aimee's appointments and school for the week. Then Ed found out he had an abscess tooth and they scheduled a root canal for that week and put him on penicillin. All in all, it was not a pretty week.
However, the last day of that week, we received an anonymous email telling us that someone had donated a large sum to Aimee's custodial account. God really likes Aimee I think, because He always provides for her every need. :) What a whirlwind time that was!
I did a couple of hour training with the respiratory therapist and received Aimee's new BiPAP machine. Apparently they don't make them or any of the attachments for children. Up until recently they thought that only adults got sleep apnea apparently. This has made it really challenging to get the face mask to fit her correctly and she still has red marks over the bridge of her nose that are not going away throughout the day.

Putting Aimee to bed for the first time with the new BiPAP machine

She is so patient with us as we adjust and readjust it

First night sleeping in her new big girl bed!

First night sleeping without the orthopedic shoes and bar

 In an appointment with Orthopedics last week, I discussed discontinuing club foot treatment for Aimee. They had told us that she would need to continue in the shoes and bar for 12 hours per day until she reaches age 4, however, I felt that we had to give it up at this point. She has been wearing the bar since she was about 3 months old and thus sleeping on her stomach since that time. However, when we tried working with the BiPAP machine, it just wouldn't stay in place with her sleeping that way. We couldn't just flip her over to her back, because of the possibility of choking on her saliva, so we had to go with side sleeping....but that didn't work with the bar in place.

Learning to sleep on her side

The doctor agreed to let us discontinue treatment as she actually has about 30% more flexibility than she needs in her tendons. We will check back with him in 6 months to make sure we haven't lost too much ground. That appointment was last Monday and since that time we have been working with different pillows to figure out how to keep her on her side throughout the night. My chiropractor gave me a pregnancy pillow to sleep with and this seems to work the best for Aimee. She looks really comfortable with the pillow all snuggled around her, but so far, she is sleeping much much worse. Or at least I think she is. She has hardly been awake this last week. In fact, most days she sleeps all but maybe 2 hours of the day. I can only assume that this is from having to adjust to a new way of sleeping after over 2 years on her belly. In fact, it is currently 2:30pm, she has yet to wake up despite having had therapy appointments and school today!

Working with the new braces and hand mitts

We finally got down to Puyallup for the final fitting of Aimee's new braces too. Hallelujah! So thankful to be done (for now) with that trek. Unfortunately, at least in my mind, they seem to be working really well. They fit her great and she really works hard with them on. I guess that means we will be continuing with them and getting new ones every 6 months. Sigh. 

The last delicious, so cute cupcake from Caleb's shower

A few of my sweet family members threw baby Caleb a shower a few weeks ago. What a blessing that was! We feel so much more prepared to this coming little bundle now. I'll post pics of the nursery soon!

10.28.11 (Extreme Nesting)

Time to take a break from posting about appointments (I'll give an update next week there) and tell you about something a little more fun, our nesting projects! Ed and I have always been a bit extreme in our nesting. When I was pregnant with Aimee, we moved our bedroom into the living room for several months. During that time we drywalled, painted and carpeted the 3 bedrooms. This time around we went after the wood floors!
We felt we needed to make some changes for Aimee's sake. This year, we had insulation put in our floors (and attic while we were at it), because she spends so much time down there playing. We also didn't want anything to discourage her from learning to roll and spin around on her own. Anything like rough floors with splinters. 

Pre-project kitchen floor-Don't worry, we don't really eat cookies. We just make them for looks. :)

Pre-project living room floor

Pre-project living room floor

Pre-project dining room floor (and glimpse of kitchen work)

Ed's parents were so kind in letting us borrow their trailer to live in while we made a mess of the house.

Aimee enjoyed playing in the trailer, especially on the bouncy air mattress!

Plus, it is extra fun to play with glow in the dark toys in a trailer, because you can make it very dark.

We spent about 2 weeks working on the floors (and about 3+, so far, cleaning and resettling back into the house). It wouldn't have been as much of a challenging project if we had just decided to sand and finish the living and dining room floors, but we took on the additional project of tearing out the flooring in the kitchen to get to the original hardwood underneath. I was so excited to have wood floors in the kitchen after 5 years with dingy, old flooring. We spent several hours each evening on our hands and knees with hammers and chisels to get out the layers of flooring.

Ed hard at work in the kitchen

Me, not quite as hard of a worker, but trying none the less!

I worked on the kitchen while Ed tackled the sanding project.

First pass in the living room

Mid stride and hard at work again!

Then came the sad, sad day when we had to decide it was all for nothing. We just couldn't get the tar glue off of the wood in the kitchen. We also discovered gaping holes, patches from where old walls used to be and even a section of flooring that ran the opposite direction! Big, sad sigh!

What a mess!!

So, we headed to Home Depot to see what kind of inexpensive floor covering options we could find. We were able to get something fairly reasonable to cover the mess, but oh the sadness of all that wasted work!
Ed did a fabulous job of redoing the living and dining room floors though. I am so pleased with how smooth they are and how much warmer it makes our home feel. What a blessing!

Mid-project living room floor

Final sand living room floor

Shiny!

Getting moved back in. Doesn't it just look cozier?!

New kitchen floor

Our next nesting project that we are working on is switching 2 of the bedrooms around. We decided to have Caleb and Aimee share the bigger of the 2 rooms and turn Aimee's nursery into a therapy/toy room. Aimee's equipment has been slowly (relatively anyways) taking over our living area and it is time for it to have its own space! I'll update you in pictures once we have this next project completed.

Ps. For those who might be interested, I set up a registry at myregistry.com for Caleb (http://www.myregistry.com/public/Rosa-Edward-DeVoe ). I also added a few items for Aimee out of the special needs communication catalog. They are toys, but designed specifically to help her learn about cause and effect, as well as, making choices. Just in case you would like to get her something for Christmas or her birthday that would help benefit her in a fun way.

10.19.11

Last week Aimee and I met with the feeding therapist in Seattle. Reintroducing foods to Aimee has been challenging and the success of our attempts varies greatly depending on other stresses in her life. We have been working on teaching her to use a communication switch/button while doing feedings as well, so that adds an additional complication. When she has a particularly busy day, when other people are around, when there are other noises, when it is a different texture...basically any unusual variable causes it to be too stressful and she either chokes very quickly or simply goes to sleep. However, for all of that, she is doing so well under completely normal circumstances. She is eating about 60 ml or 2 ounces during good feedings, which is a major improvement! The feeding therapist was very pleased with my report and has given me the go ahead to give Aimee as much as she can tolerate or is willing to eat. This of course brings me to a new issue... at what point do I give her less blended food. I am meeting with the GI Nutritionist next week and am hoping to come up with a plan for this. If she takes a significant amount in... I don't want to overload her little tummy by just pumping her full afterwards. I am considering changing her feeding schedule from 3 meals a day to 3 'meal' boluses and 2 'snack' boluses.

Aimee's preschool had an open house last Thursday. Aimee and I took Ed along to show him her artwork and meet the other parents. They made us a little book with pictures of Aimee in class and some of her paintings. Actually, at the last class, I left Aimee in the class by herself for 20 minutes. I am working my way out and kind of forcing the teacher and nurse in the classroom to learn how to care for her. They still seem a bit nervous, but I am hoping to just increase my absences. Aimee will do great I'm sure. Funny how that is what I was worried about before. Now it is the poor teachers I'm concerned about!

Monday we had a baby appointment with the midwife, which are every other week now. Everything is going well, however, the midwife had a serious discussion with me about after baby Caleb is born. She had asked me who would be caring for Aimee in the 4 weeks after he comes. I honestly had thought that Ed and I would care for her and then when he went back to work... well it would be me caring for her. It never crossed my mind that I wouldn't be allowed to lift her. Hmm... apparently I still have a few items to sort out!

Yesterday, Aimee and I drove down to Puyallup again. And, of course, it wasn't the last time. We have to go back in 2 more weeks for the FINAL fitting of her hand mitts and elbow braces. I am almost hoping at this point that they don't work, so I don't have to make another 4 trips down there in 6 months.

This morning we had the follow up appointment to the sleep study performed in September with Pulmonary in Bellevue. I wasn't sure what to expect going into the results appointment, since Ed had done a sleep study recently with a significant lack of helpful findings. However, there were findings in this one. They determined based on her test results that she has both obstructive sleep apnea and hypoventilation. There were several different issues during her study, decreased oxygen levels, pauses in breathing, high CO2 levels, ect. She slept for 404 minutes during the study (which I can't even believe it was that much considering all those wires!) and had 45 arousals during that time. They did put her on oxygen during the study, which improved her sleep efficiency some. They showed me graphs of her sleep cycles and she didn't have any resulting in dream sleep until they put her on the oxygen.
So we headed on over to another building for an x-ray of her adenoids, as well as some blood work to check her CO2 levels. Her adenoids were mildly large, but not obstructing her breathing. Her CO2 levels were high, which confirmed what they saw during the study.
The doctor said that given Aimee's underlying condition, especially her low muscle tone, it is not surprising that she is unable to breathe normally. They decided to put her on a BiPAP machine with back up oxygen. It is basically the same as a CPAP (mask with air pressure to keep the airways open), but instead of continuous pressure, this one will have a higher rate of pressure for breathing in and a lower rate for breathing out so that her airway stays open, but that she has the ability with her muscle tone to breathe against the machine. They will also have a oxygen back up in the machine so that if she has a pause in breathing for longer than 10 seconds it will automatically give her oxygen as well. The machine that we will be getting will have a mask that covers just her nose, because she has so much saliva they are worried about forcing it down her throat. So we'll have to strap her mouth shut at night to make her breathe through her nose, but hopefully still allow her to drool out any excess fluids. I'm not sure how that is going to work, especially if she has to cough or it she chokes... we'll have to figure that out I guess.
While we were there, they also taught me the basics of doing chest physical therapy to help Aimee clear her lungs when she is congested. Helpful information for sure since she has such difficulty with choking when there is any congestion.

This afternoon we had a speech evaluation. I wasn't sure how Aimee was going to do after a busy day at the hospital, but she actually was able to stay awake through about half of it. We are working on communication devices and teaching Aimee cause and effect, with the ultimate goal of making choices and independence. It is a slow, slow road, but one where I am very excited to be seeing little steps of improvement. Amazingly enough, Aimee also managed to have a bit of energy left after speech therapy for her occupational therapy appointment. All these different appointments and she is still smiles at the end of the day. It is hard to know sometimes when to say 'enough' and when to be thankful for any little thing that might benefit her.

Apparently it was time for a new challenge. I'm a little nervous to figure out the process with the BiPAP machine, but I am hopeful that this will help Aimee to get quality sleep and cause her to have more energy during the day. It may even help in her development if she is able to get real sleep! My head is spinning a bit from a day full of information, but one more piece of the Aimee puzzle has been discovered.

10.3.11

This last Wednesday Aimee and I headed down to Puyallup again to have her elbow braces and hand mitts made. Sadly, we found out that we have to go back 2 more times!!! Ugh. It is hard to imagine this being worth 4 days with 5 hours of traveling each every 6 months just for these braces. Especially once it means Aimee, baby and I traveling down together. :/

Thursday we began meeting with the TVI (Teacher of the Visually Impaired) again. It wasn't a very productive time as she came right after class was over, however, the TVI was really impressed with the progress that Aimee has made over the summer. It is amazing how many areas her lack of vision impacts, so every tiny improvement is a big deal for Aimee.

Friday I took Aimee in to see her pediatrician, because she has had several dry, scabbing/flaky, and irritated patches of skin that weren't going away after a few weeks time. We knew that she had sensitive skin, but found out that she actually has eczema. Kind of nice to know, as it give me some concrete steps to take for prevention and treatment. Poor girl has been dealing with these itchy patches her whole life and I never knew that they were actually something. Oh the never ending discoveries! If you know of any good tips for dealing with eczema, please pass them on to me as I am just learning about it.

We were finally able to sit down and have a nursing plan meeting at the school to document what needs to be done for Aimee in case of emergency. This is the first step towards me being able to leave her by herself at school. At this point, they are having a hard to time getting involved in her care while I am there, even though I walk away from her and play with the other kids. I know they are nervous to do it wrong in front of me, but I don't want to leave her if they don't even know how to get her out of her chair by themselves. Definitely going to have to address that very soon!

Hopefully next week I can update you on our extreme home nesting that has been taking up most of our time and energy this past 2 weeks, but for now, enjoy this little video of Aimee playing and laughing. Always lifts my spirits, hopefully it does the same for you!

ps. We have decided to name our growing little boy Caleb Edison DeVoe, which means 'faithful son of Edward'. We are officially in the every-other-week appointment stage with the midwife, so the timeline is getting shorter!

9.22.11

Aimee started school last Thursday and is currently going 2 days a week for 2 1/2 hours.

Here she is ready to head to school with her new backpack. She was very excited.

And actually she was very excited and happy almost that whole first day.

By the end of class she was wiped out!

She has been doing pretty well in the classes. Only sleeping about 1/4-1/3 of the time. The other kids love her and it is so sweet to see them bring her toys and hold her hand. There is one little girl in class that is especially enamored with her. She even cried this morning when she got to class and Aimee wasn't there yet! :) So, even though she doesn't know it, Aimee has friends already. 

I haven't left her alone there yet, but tomorrow we are going in to meet with the school nurse and teacher to develop a nursing plan for her. If nothing else, once little baby brother comes, I will plan on leaving her at school by herself. 

I am still so shocked at what they feed the kids in class though. I suppose the most shocking part is that the teacher thinks it is healthy. The school provided prune chocolate muffins for breakfast this morning, but the teacher said she didn't think those were any good, so she pulled out leftover pizza and fed that to them instead. Her comment to me when she did it was that so many kids don't get good food at home, so she tries to make sure they eat nutritious things at school. Huh. Interesting. 

Monday Aimee and I went in for an appointment with the Endocrinology clinic. I took my camera along to show you what a day at the hospital is like, but the battery died when we got there. Undeterred, I pulled out my phone and took some pictures of a questionable quality. However, then I managed to smash my phone in the cargo door of our tahoe while putting the wheel chair back. Sigh...if I am able to recover the photos, I will be sure to post and let you have a more visual experience of Aimee's day there. For now, you'll have to imagine it for yourself.

We had this appointment to be sure that she had no additional symptoms of early puberty. After visual examinations, they sent us over to radiology for a bone age x-ray. This is simply an x-ray of her hand to see if her growth plates are appropriate for her age. (Don't worry, baby and I stayed in the hallway when her x-ray was taken) We then got the results back that her bone age is normal (or close enough to normal). However, they cautioned us that most likely Aimee will begin puberty too early and will need to be given hormone shots to stop it. She is at a high risk for this because of her seizures, high palate and other neurological abnormalities. We will just watch out for symptoms and take her back to this department if we notice anything unusual before the age of 8. Which means, one department we don't have to go back to for awhile! Yipee!

Side note: Aimee has been having more seizures over this past week that she was before. She has had about one every day and a few longish ones. I was really hoping to keep her medication the same until getting the sleep study results and am now debating on if we should call Neurology to request an increase.

9.15.11

Aimee's sleep study was last Friday night. We drove down to the Overlake Hospital in Bellevue where Children's has a Sleep Clinic. We bunked down for the night in a cozy little room and got Aimee all set in her pajamas and night time shoes. Then came the wires. And the belts. And the microphones. And the oxygen tube. And the sensors. And the tape. Ect. Ick. Aimee managed to fall asleep fairly quickly when we rolled her onto her stomach. Unfortunately, she was only allowed to sleep that way for the first hour. After that, she was onto her back. I couldn't sleep at all with her like that. She would fall asleep after awhile, but then wake up choking on her saliva. She also just breathes weirder on her back. Either way, she got a few more hours in altogether on her back. All that to say... it was not relaxing. The clinic was really nice though and they definitely try their best to take care of families.

We will get results from the study on October 18th, when we meet with the doctor down in Bellevue. Apparently they do quite an in depth analysis, so it takes some time to put the information together. Now that we have done the test, I'm not expecting any resulting information. It is just so disappointing to go to follow up appointments expecting answers and walking away with nothing. We'll see if not expecting answers does any better. :)

We've been using Aimee's bath chair as a place for her to sit lately (even though it specifically says to only use it in the bath, no idea why). It definitely isn't the best for support and positioning, but I just can't get the wheelchair in very easily by myself until we get a ramp into the house. Hoping that this is going to happen very soon though! (Isn't it cute how she sits with her feet up on the chair)

Today was Aimee's first day of school. I have so much to say about it, but I'll have to save it for my next post.

9.9.11

Last Monday Aimee and I met with the GI and GI Nutrition departments. At GI we discussed the problems Aimee has been having with constipation and the dietary changes that I had attempted to use to correct it. Everything I tried (doubling water intake, increasing fiber, adding prune juice, ect) worked for a few days, but she would just end up right back where we started, which was having a solid waste diaper every 2 weeks. The GI doctor feels that it is not a dietary issue for her, but rather her low muscle tone is not allowing her to push out normal waste. They gave us a prescription for a laxative, which would soften it to the point that her body could handle it. After 1 week on the prescription, she has not only become regular but has been able to expel well over 4 pounds in excess waste (so far, she just had another 1 pounder this afternoon, so we'll see when it ends!). Eek. I knew she was backed up, because her abdomen was hard and full of major lumps, but I didn't realize how far back. Very thankful that we have decided to go this route. Poor girl!

They also caterized her excess granular tissue (around the g-tube) with silver nitrate. We have been using steroid creams to try to keep it under control, but her body is working too hard at it and we have to keep burning off the excess.

We then met with the Nutritionist. Before the loss in weight due to expelling waste, she had already lost a couple of pounds. It looked really bad on her charts, because she has grown so tall over the last few months that her BMI percentile dropped from 50 down to 15. I am hoping by increasing her daily calorie intake from 650 to about 850 we will see her increase back to average. The Nutritionist recommended adding heavy cream to her blended diet, but I decided to go with peanut butter. I am trying to keep her diet to items that she would actually eat. I don't think I would normally be giving her a cup of heavy cream to drink! :)

We have been working on increasing her oral intake of purees over the last couple of weeks. SO challenging. While she still does enjoy tasting food, she isn't really interested in eating more than an ounce at a time and even that she will only eat under ideal circumstances. She gets too distracted by a difference environment, other people around, not being held in the exact ideal position. Basically, if we are not at home, I can't get her to eat much. Not really helping with my 2 month goal of increasing her intake up to 3 oz 3x a day (just over 1/3 of a cup).

Last Thursday Aimee and I met with her preschool teacher and other school therapists and helpers to figure out how class is going to work for Aimee. Her first day is next Thursday and it seems like even the school staff is concerned about how this will work. There is thankfully only 5 kids in her class, but she didn't even make it awake through the meeting of adults in the classroom. They gave me a class supply list and insisted that we bring her with a backpack to class. We went over the classroom routine and activities. I was pretty shocked to learn that they feed the kids pizza for breakfast. Very thankful that Aimee will be on her healthy little diet and won't be touching that! The oddest part of it was that the teacher was excited about the great food the kids get. Hmm. Something is wrong with that picture to me!

Yesterday we met with Neurology to discuss her seizure medications. We have the frequency of her episodes down to about 2 times a week and they are only lasting for 20ish seconds. The Neurologist wanted to increase her medications again to see if we can see further improvement, however, I asked to wait. We are having an overnight sleep study done tonight at Overlake Hospital. If we get any kind of results from this test that have us change sleep habits, I would like to see if this changes the seizure activity before resorting to more medications.

8.28.11

This last Monday, Ed and I took Aimee in for her anticipated swallow study. Ed had to come since it is an x-ray procedure and I wasn't allowed to (and didn't want to) stay in the room for it. They basically just get an x-ray video of her eating and see at what point she fatigues, if she aspirates (breathes in fluid/food) and what consistency is appropriate for her abilities. Aimee did really well in the study! She didn't aspirate at all. It only took her 3-4 swallows to get one bite down (compared to 8ish last time). She did still have food pooling in her throat, but she did well with it and was able to clear it.
After the study was over we met with the feeding therapist to come up with a plan for increasing the amount of food she takes by mouth. Over the next two months our goal is to have her eating puree consistency foods 3x a day up to 3 ounces in a sitting (90 mls or just over 1/3 cup). We are very excited to be able to work towards this goal. It will be a challenge though, a good one, but difficult for sure. At this point, Aimee loves to taste yummy things, but definitely does not associate tasting food with satisfying hunger any more (she has been tube fed for 14 months). We are not sure how far this will go, her main nutrition may be g-tube for a long time yet, or it may always be that way. Either way, I don't care, I get to feed my little girl more bites! Now I just need to expand her palate again beyond yogurt and fruit. :)

8.19.11

Wednesday Aimee and I drove down to Puyallup to meet with the therapists at Good Samaritan Children's Therapy. We were to have elbow braces and hand mits made. They had told me over the phone that since I was coming so far they would be able to schedule all the appointments into the same day. Sadly when we got there, they said that we would have to come back at least one more time. Bummer. They took all her measurements and let me pick out colors, which seemed a little silly to drive 2 1/2 hours for honestly!
The splints and mits are for use during therapy exercises. We have been putting her in a simulated crawl position to build up strength in her shoulders, elbows and wrists. She is getting so big now though that, without some supports or multiple people, there is no way do the exercises. Her hand motion is already restricted from lack of use, so I am hoping that by doing more weight bearing exercises we will be able to keep the motion she has. The other option is putting braces on her hands and arms throughout the day. It's hard to know how much she'll use her hands for moving around... is it worth it to put her through more for motions she may never use?

This morning Aimee and I met with the Pulmonary clinic in Seattle for a sleep consultation. We discussed Aimee's breathing patterns and her sleep habits. They were concerned enough to get us a priority sleep study (or Polysomnography :) fun words). Apparently they are booking out in February right now, but were concerned enough about Aimee to get us a study scheduled for 3 weeks out. Should be interesting to see what comes of it. Since she has such low muscle tone, she is in a high risk category for breathing problems. If she is getting poor sleep quality due to lack of oxygen and if we are able to fix the problem, it could even decrease some of the other issues she is having. As they were explaining to me, if your brain and heart don't get to completely recoup then they wear out faster, which can cause seizures, high blood pressure, poor development, ect.

It's all very interesting!

8.12.11

We had our ultrasound for baby DeVoe on Wednesday evening and Aimee officially announced that she has a baby brother! :)


I've attached a short (5 second) video of him flexing his bicep for the camera, as well as, pictures of his cute little feet and profile. They estimated him to weigh 1 pound 2 ounces with a due date in mid December. He is a very active little guy and we are excited to get to know him more!

8.5.11

Aimee has gotten a few new pieces this last week. Yesterday we picked up her new orthotics. They are pink and called 'bunny' shoes. I find medical equipment more fun in cute colors and with cute names. :) The idea behind these shoe inserts is to help her with practicing standing. She will wear them in the stander itself and when we do therapy exercises. They are supposed to give her more stability and some sensory feedback. The only problem is that they are also meant to go inside of shoes, as the bottom of them is really slick...but they don't fit! I will have to do some shopping for a pair of wide shoes for her.




Monday we were also able to get the final piece designed to go with her wheelchair. (FINALLY!) What a mess getting this little piece! They kept having to give me disclaimers and have me sign paperwork about if our insurance wouldn't cover, ect. Funny thing that by the time we were done getting through all that process we had met our stop loss limit on insurance for Aimee...so insurance will be covering it all anyways. This neck support will be used while she is in the chair so that she sit fully upright and be completely supported when we are giving her visual stimulation and working with certain therapies.

One of the therapist that Aimee has been meeting with through the summer is the Speech Therapist. She encouraged us to use a communication button with Aimee when giving her tastes of food or doing an activity. I recorded the word 'more' on the button so that, once Aimee understands the concept, she can tell us she would like to have or do more of something. We started working with it about a month ago. So far she really likes to hit the button, but I don't think she gets that it means anything.

Yesterday Aimee and I met with the school district again and officially committed to starting school in September (EEK!). We are going to try it out for 3 months and see if she is able to adjust to the environment. The good news is that if it doesn't work at all, they will have the teacher and therapists come to our home, at least for this school year. Nice to know there is a back up plan, since Aimee is a bit unpredictable.

Making a little shirt for Aimee to
announce the gender of her little sibling.
Hopefully it will be completed next Wednesday night! :)