10.22

Wow. I'm not even sure where to begin. We had our appointment yesterday with the neurodevelopmental clinic. The doctor was very prepared and had read through all the other doctors' notes that had ever seen Aimee, looked at all the test results that were ever done, talked to the genetics dept and researched any link between her different symptoms. He really took ownership of the situation. We were in his office for about 2 hours looking at the MRI, discussing what is known and what we will be doing from here.

We did find out what is happening in her brain that is causing her delayed development. Her brain is a normal shape and stage for a 3 month old baby (she will be 8 months on Monday). All the right components are there. The main issue is that the myelination is underdeveloped. The myelin, as I understand it, is the 'white' matter when you look at a brain. So in her brain, the distinction between the white and grey matter isn't as great as it would normally be at this age, because the myelin is thinner than it should be. The white matter or myelin is actually like a fatty insulation that surrounds the wiring connecting the different parts of the brain. It is essential for the nervous system to function. There are thousands of different potential causes for this lack of development and without knowing the 'why', we can't really answer the 'what to do' or 'what will happen' questions.

From this point, we will have several tests done. The biggest one will be looking really closely at about 1600 different segments of her chromosomes. This one will take about 8 weeks to get results. Because it is a new test, it may not be covered by the insurance company. We will also have her cholesteral levels tested (could be too low and myelin is primarily made of it), her carb levels (don't really know why) and for a few specific metabolic disorders that show similar symptoms. Also, we will be meeting with the Opthamalogist to look at her eyes. We are concerned about her eyesight, but also the eyes are a big indicator of the rest of how the rest of the nervous system is functioning. These tests are just a few to begin with. There are so many possible ones, we just don't want to overwhelm her little body (or our little heads).

I know that this is a lot of info...and it is only what I can remember from our appointment. We really talked about so much more. There was a lot of good news, a lot of possibilities that we can rule out. At least we now have something more specific to pray about. Please do pray for Aimee. God knows the whys of what is and is not happening. Pray for an increase in myelin and an increase of response from her nervous system. Also, please pray for God's provision for us.

If you have any questions about the above, please comment. I'm not sure how clearly I am explaining this right now. Things feel a bit fuzzy, evidenced by me locking the keys in my car this morning =).

10.20

Yesterday was Aimee's brain MRI at children's. We really had no idea what we were getting into when we went, but it did go well. We were there for about 3 hours and she was only under for about 1 hour. It is always sad to see her on IVs/oxygen, but she was very peaceful the whole time. We don't have any results yet, but tomorrow we are meeting with the Neurodevelopmental clinic and will be hearing about their findings. At this point, we are praying that God will make the results very clear and give the doctors a complete understanding of what is happening in her little brain.

Thank you to everyone who is praying. There have been some difficult moments, but we have also been so reminded of God's love for us.

Update 10.16

Alright, so Wednesday the therapist came over to our house to do an analysis. She gave us the choice of working with the therapists from the school district's special ed dept or working through the therapists at the hospital. It sounds like they have the same qualifications, but two different approaches. With the hospital therapist, the focus will be on a cure. With the school therapist, it will be a focus on educating her with her current abilities. Because we are already working with Children's on the causes/effects, we have decided to work with the school district.

Also, we now have a brain MRI scheduled for Monday at 10:15a.

It would be a great time for a miracle...at least according to my clock.

Appt tomorrow (14th) with Therapist

Picture of our little Husky!
We have a therapist from Birth to 3 (state run program thru the school district) coming over to our house tomorrow afternoon. Please pray that the true situation would be evident.

At Gabe & Lauren's wedding September 5th.

Coming Appointments

We have an appointment next Wednesday with the Birth to 3 therapists at our home and an appointment with the Neurodevelopmental Clinic on the 21st at Children's Hospital.

Keep praying for a miracle!

Most recent family photo (courtesy of my cousin)...aren't we beautiful!

CranioFacial Clinic

This morning we had an appointment with the Craniofacial Clinic. Aimee's skull size is very small, however, it is not due to a premature bonding of the sutures of her skull (which is what we were concerned about). However, the reason that her head is so small is because her brain has not been growing at a normal rate. During pregnancy it was developing correctly, but after birth for some reason it changed. The doctor said that this is normally due to some injury, but she hasn't had any. He doesn't think it is a metabolic cause, because she has not been going backwards in development, just very slowly forward. Just in case though, she will still be tested for metabolic causes. It sounds like it is more likely a gene or chromosomal issue. Unfortunately, it doesn't sound like they know much about the development of the brain. He did tell us that it is very likely that she will suffer long term effects, however, it is very unlikely that we will know ahead of time what those will be.
From here we will most likely go in for a brain MRI and blood tests to prepare for our appointment with the Neurodevelopmental Clinic.