12.22
I found out yesterday that our financial aid application was approved. We haven't gotten too many details yet, but we at least know that the brain MRI was covered. Thank you Jesus!
12.18
Lauren, Aimee and I spent 3 2/1 hours at the Ophthalmology dept yesterday. 3 different doctors took a look at her eyes, trying all kinds of techniques. After the examinations, we were told that her eyes, optic nerve, blood vessels, ect all appear to be functioning normally. It seems that her eyes are taking in information and bringing to the brain, but it isn't being processed there. This seems to be directly related to the delayed myelination. The doctor said there are 10 current patients of childrens with the same symptoms, same development issues.
January 6th we will be discussing these results with the neurodevelopmental doctor. I also plan on asking him about setting up a support group with these other parents.
January 7th we will be taking her back to Ophthalmology to have a few tests performed which will measure her brain wave responses to visual imagery.
January 6th we will be discussing these results with the neurodevelopmental doctor. I also plan on asking him about setting up a support group with these other parents.
January 7th we will be taking her back to Ophthalmology to have a few tests performed which will measure her brain wave responses to visual imagery.
12.15
So...Ed just got off the phone with Dr Walker, the Neurodevelopmental specialist at Seattle Children's. All of our test results came back normal. We had already heard the results of the tests for cholesterol levels and a specific disorder a couple weeks ago, but these results were for protein tests and chromosome/genetic tests.
Not to sure what to think about this. It is a good thing, but also leaves us back with no leads and no answers. We will be meeting with the Opthamologist on Thursday to have her nervous system checked through eye exams. This may give us some answers or may be normal. We will be back in Dr Walker's office on January 6th to discuss where she is at currently and if there is anymore testing that should be done.
In the mean time we are continuing to work with the state and school district therapists to help Aimee meet the goals of grasping objects, sitting up and moving about the house.
Thank you for your continued prayers for our family!
Not to sure what to think about this. It is a good thing, but also leaves us back with no leads and no answers. We will be meeting with the Opthamologist on Thursday to have her nervous system checked through eye exams. This may give us some answers or may be normal. We will be back in Dr Walker's office on January 6th to discuss where she is at currently and if there is anymore testing that should be done.
In the mean time we are continuing to work with the state and school district therapists to help Aimee meet the goals of grasping objects, sitting up and moving about the house.
Thank you for your continued prayers for our family!
12.3
Yesterday we had 2 therapists and a resource coordinator come to visit. They will be coming over about 3 times a month to work with Aimee. They were all very helpful and full of good ideas to help stimulate her. That was the good part. The bad part was that they made me sit down and make goals. It doesn't sound that bad, but I had to think about where I am hoping Aimee will be in 6 months and in a year.
We set 3 main goals for Aimee to be able to do in the next year:
-bring items to her mouth by herself (this is probably a 6 month goal)
-sit up unassisted
-explore the house
I actually asked for crawling, but they said that may not be an option. We will just work toward her being able to move about in some fashion. We then set tiny little goals to work towards these larger goals. It was the most emotionally challenging appointment I have done yet. I've been avoiding asking myself the question of where she will be at in a year. Will she be able to sit up by her 1st birthday? Will she be able to walk by her 2nd? If we take things day by day it seems very good. Aimee is making progress in little areas. As Ed and I discussed it last night...we finally have to face the fact that things are going to be different for us in major ways...maybe for her whole life...
Please pray for us to know the right ways to love and encourage Aimee towards reaching the small goals. Also, please pray for God's provision. We are in the process of applying for financial aid through the hospital for the medical bills and will also be applying for SSI to help pay for special equipment.
Thank you for your support and love to us during this last few months. We have been so blessed by our lovely family and friends.
We set 3 main goals for Aimee to be able to do in the next year:
-bring items to her mouth by herself (this is probably a 6 month goal)
-sit up unassisted
-explore the house
I actually asked for crawling, but they said that may not be an option. We will just work toward her being able to move about in some fashion. We then set tiny little goals to work towards these larger goals. It was the most emotionally challenging appointment I have done yet. I've been avoiding asking myself the question of where she will be at in a year. Will she be able to sit up by her 1st birthday? Will she be able to walk by her 2nd? If we take things day by day it seems very good. Aimee is making progress in little areas. As Ed and I discussed it last night...we finally have to face the fact that things are going to be different for us in major ways...maybe for her whole life...
Please pray for us to know the right ways to love and encourage Aimee towards reaching the small goals. Also, please pray for God's provision. We are in the process of applying for financial aid through the hospital for the medical bills and will also be applying for SSI to help pay for special equipment.
Thank you for your support and love to us during this last few months. We have been so blessed by our lovely family and friends.
Subscribe to:
Posts (Atom)