9.24.10

Monday, Aimee and I met with the GI Nutritionist to discuss adjusting her diet to three meals of blended food with one of the formula. I have to admit that this is one of my least favorite departments. They seem to assume that you do not understand how to get proper nutrition to your child. The nutritionist was actually surprised to see that Aimee had still been gaining weight since I took over making one of the four meals for her. She was also quite upset that I bought a different type of industrial blender than the one they told me to. Really? If it works fine and doesn't clog the tube....isn't it my choice, especially considering I'm paying for it? Well, she is checking with the doctor on that issue! :)
They have also made it quite complex to add additional meals of blended food. Each meal has to match the exact calorie, protein, carbohydrate, fat, fiber, mineral and vitamin count found in the formula. Not over the course of a day or couple of days, but every single meal. It is like they are trying to make it impossible to do. I spent all day yesterday trying to come up with exact recipes and mostly I just ended up with frustration! I have 8 weeks to figure it out. They will then perform a dietary analysis to determine if I am meeting all of her needs for the three meals out of four. Oh my! Please pray for wisdom for me as I am working through these nutritional equations.

Aimee and I attended a workshop on Thursday to learn more about IEPs (Individual Education Program). It was with a group of parents of special needs children ranging from Aimee's age to 21. Interesting to learn about how the public school system works in regard to special needs and what the current laws are regarding the programs. A bit far into the future for us, but helpful to think through the challenges that parents a few years ahead of me are facing.

Aimee's chiropractic visits are going very well. She does seem to be trying to roll over from her back to her side quite a bit more in the last couple of weeks, although it is hard to say if that is a direct result of the chiropractic adjustments.
Another area of improvement has been in her eyesight. While it is still very difficult to say how much she is able to see, the last week or two she has been focusing for a second or two longer on our faces. She also is able to see light and movement, we think.

Thank you again to everyone who has been sharing our blog and website by email and facebook. Also, a BIG thank you to those who have been praying for us and those who have supported us with gifts and funds. We are VERY blessed by each one of you and overwhelmed by God's goodness to us through you.

9.17.10

Update on this week's appointments:

Naturopathic 18 month well child exam was yesterday. Aimee is 95th+ percentile for height (33 1/2 inches tall) and 70th percentile for weight (26 pounds, 4 ounces). She is clearly growing very well! She is half my height at 18 months old. Crazy! Her head circumference also increased some. Over the last year, her head has actually grown the average amount. It is still well below the 5th percentile though. Interesting. One piece of good news from this appointment is that we no longer have to go in for weekly weight checks. Good timing, as we are now adding the 3 chiropractic visits every week!

Aimee did not have her weekly occupational therapy appointment this week, so we will continue with that next week.

This morning we met with the GI department at Children's. The surgery site has been having increasing issues with growing granular tissue and leaking fluids of all sorts. We were given a couple of prescriptions to control the growth and hopefully reverse it, as well as, to protect the skin underneath.

Next week, we will have chiropractic care, occupational therapy and the GI nutrition department.

Extra! Extra! Aimee's new website!

Just published today-Aimee's new website!
No, she did not create it herself. :) Two of Aimee's aunties designed www.wix.com/devoefamily/aimee so that you can see what current and upcoming needs we have for Aimee. Please feel free to share this blog and the website with anyone who is interested in keeping up with us. Thank you for your support and prayer!

(Copy and paste www.wix.com/devoefamily/aimee in your browser or retype it.)

9.14.10

Aimee's BAER hearing exam was last Friday. Aimee's Nana and I waited together while Aimee was under anesthesia. The test itself was about an hour and forty minutes. The results were almost identical to her March exam. She has mild to moderate hearing impairment. It has only been 6 months since her last exam, but we were intially hoping that 6 months of development might meen some improvement in hearing abilities. She also still has the same time delay between a sound entering her ear and reaching her brain. Given the results and the vast improvement she shows while using the hearing aids, we have decided to order a permanent pair, which we will have programmed in October.

Unfortunately, Aimee decided to stay asleep for about 2 hours longer than she was supposed to, which is always a bit nerve racking. As soon as the anesthesiologist mentioned the possibility of staying over night, she started to wake up. You have to wonder about this girl sometimes!

I received the clinic note from Aimee's most recent Genetics appointment yesterday. The Angelman syndrome test came back normal, as well as the muscle disorder test. We'll see if there are any further ideas that come out of the Genetics convention.

This week we just have the chiropractic visits, 18th month wellness check-up and a GI visit to clean up the surgery site. It seems like, from this point, the visits to Children's Hospital may be backing off to one visit a week on average versus three. Wonderful!

9.9.10

Yesterday Aimee and I were at her prep appointments for tomorrow's hearing exam. During the Otolaryngology appointment (ear/nose/throat) the doctor said she wanted to get my consent to test Aimee for Congenital CMV Disease. I had never heard of it before, but when she started describing it to me, I was very eager to try it out. It will take three months to get test results and even then they are not conclusive. Yet, I feel like this is the closest disorder we have found to date.
CMV (cytomegalovirus) is a very common viral infection, similar to mono, that a high percentage of people get during their lifetime. Most people don't even know that they have it, unless they have immune disorders. The only other time that it causes problems is when a woman contracts it for the first time while pregnant. It passes from her blood stream through the placenta and infects the baby. The most prevalent effect is hearing loss, but others are possible, including visual impairment, newborn jaundice, feeding difficulties, mental disability, microcephaly (small head), developmental delays, muscle tone abnormalities, ect.

I have always made it a rule to not research disorders that Aimee is being tested for unless she tests positive. However, this is the closest one we have found thus far...and it just would make sense if it was positive. I'll have to get back to you with the final word near the end of the year.

9.7.10

We went to Aimee's follow up appointment with the chiropractor today to look over and discuss the results of last week's exam. It is really hard to tell in her case how much benefit there will be from chiropractic care, but we would like to eliminate any potential interferences with her nervous system. For the next two months we will be in his office three times a week for the initial intensive phase of adjustment. During this time we will continually re-exam her to see if progress is being made. Of course, we will also be closely observing her behavior to watch for changes there. He has a few other disabled clients that have had major improvements under his care and we are excited to see any results.

After the initial phase, we will slowly drop down from three a week to two and so on from there. The amazing news is that it will be completely free! A wonderful woman in our church has covered the costs for us. SO thankful, as it would be impossible for us to consider otherwise.

The remainder of this week will be visits preparing for Aimee's hearing exam on Friday at Children's.

9.3.10

Aimee had a chiropractic exam today to determine if there are any nerve issues that can be resolved that way. I will take her back to discuss the results on Tuesday, but she had her first adjustment after the examination. She was very good, a bit concerned about having to put her head straight down. She definitely did not think she could breath that way :). We'll see, but I am definitely willing to try more options at this point.