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!