We are having a difficult challenge this week in seeing our good friends go through some of the things we have been through. Their new little baby boy (born on Feb 2nd) is down at Children's (I should say trapped, cause that is what happens once your baby is admitted to the hospital) trying to find a suitable solution for his overworking heart.
I can't say how much of a struggle it has been for me as friends come closer and closer to their due dates. I am so nervous to have "normal", "average" babies around. It's okay to just see them in passing, but what about when we watch them grow...and watch them pass up Aimee, even though they are a year younger or more.
On the other hand, I don't want my dear friend to have to go through anything that we have had to. I would much rather have the awkwardness of seeing her little boy grow, than the pain of watching from the sidelines...knowing so much of what is going on in her heart. Wasn't it enough for us to go through it? Did it not spare anyone else from the pain? Unfortunately, it doesn't look like it did.
Please pray for Corbin and his parents. Pray for peace and speedy answers.
1.29.10
Aimee loves clothe diapers as much as we do!
Ed & Aimee ready to root for the JETS!
Quick Update:
We have an occupational therapist coming over every Wednesday to work with Aimee on her activity level, especially her head control. Once a month, we also have a visit from a resource coordinator from the school district. It is amazing how many different state departments there are for disabilities. It seems like every visit she is bringing over a new service to contact.
February 18th:
12 month checkup with Dr Cowan, the naturopathic doctor.
February 22nd:
Appointment with the Genetics team at Children's to reanalyze the testing that has been done to date.
February 24th:
Appointment with Dr Mosca, the orthopedic doctor at Children's, to check the progress of her feet.
February 26th:
Aimee's 1st Birthday! I can't believe it is almost here!
1.8.10
We had several appointments this week...ugh...
Wednesday we had a couple Occupational Therapy visits. Aside from having to look through several special equipment catalogs (how much space do they think we have?), they went well. New exercises to try. Aimee seems to be getting more comfortable with the therapist that comes to our home and we are getting a lot of great ideas.
We also met with the Neurodevelopmental clinic on Wednesday. We had a few more blood tests done for mitochondrial disorders (mitochondria helps to make the energy that runs organs, fuel growth, ect), as well as, a test for retS (a disorder in girls with small heads that is found in the 7th chromosome and blocks proteins). I got both of these tests results back this morning and they were all normal.
Aimee, Grandma Annette and I went yesterday to have eye exams done at Childrens. The first was a brain wave test to analyze how far the information obtained through her eyes is traveling and if it is being processed when it gets there. Despite Aimee's attempts to sleep through this test, we managed to get solid results. The doctor seemed quite surprised to tell us that they were normal. Slightly delayed responses, but normal. The delay is most likely due to the insufficient myelin.
The rest of the testing that was to be done yesterday was an Eye Movement Study, which Aimee successfully blocked out. We were unable to wake her out of her opposum like sleep in order to complete the exams. (Interesting side note: she was hooked up to the machine when she went into her first deep sleep. The doctor said she went immediately into a dream state.)
Essentially, this is what we know:
-Aimee can see and process what she sees with a slight time delay.
-She has tested normal in all areas, aside from the size of her brain/development of the myelin sheaths. This is a really good thing, because if any of the tests had come back with abnormal results it would have meant her brain would not be able to catch up.
-As it stands, we will be meeting with Genetics to be sure that all the information has been looked through and to determine the likelihood of the same challenge happening with future children.
-The critical point for creating myelin is by 3 years old. By this point, she will be permanently caught up, partially behind or stay where she is at currently. At 3, we will do another brain MRI to determine which of the these has happened and from this we can determine what point she will be able to develop physically and mentally.
-There is nothing special we can do to make the myelin get thicker faster.
-We will continue to meet with therapists to stimulate her development and neurodevelopmental doctors to track her changes in every area.
All that to say...we don't know much.
Aimee could catch up and be normal, simply using her own time clock for development.
or Aimee could be a year behind the average kids.
or Aimee could stay under developed.
No matter which of the above happens, the truth is that Aimee is lovely and a rich blessing to our family. We are having fun playing with her as she is becoming more interactive. Please pray that we would learn to completely enjoy her for who God has made her to be and that His purpose would be made perfect in her life.
Wednesday we had a couple Occupational Therapy visits. Aside from having to look through several special equipment catalogs (how much space do they think we have?), they went well. New exercises to try. Aimee seems to be getting more comfortable with the therapist that comes to our home and we are getting a lot of great ideas.
We also met with the Neurodevelopmental clinic on Wednesday. We had a few more blood tests done for mitochondrial disorders (mitochondria helps to make the energy that runs organs, fuel growth, ect), as well as, a test for retS (a disorder in girls with small heads that is found in the 7th chromosome and blocks proteins). I got both of these tests results back this morning and they were all normal.
Aimee, Grandma Annette and I went yesterday to have eye exams done at Childrens. The first was a brain wave test to analyze how far the information obtained through her eyes is traveling and if it is being processed when it gets there. Despite Aimee's attempts to sleep through this test, we managed to get solid results. The doctor seemed quite surprised to tell us that they were normal. Slightly delayed responses, but normal. The delay is most likely due to the insufficient myelin.
The rest of the testing that was to be done yesterday was an Eye Movement Study, which Aimee successfully blocked out. We were unable to wake her out of her opposum like sleep in order to complete the exams. (Interesting side note: she was hooked up to the machine when she went into her first deep sleep. The doctor said she went immediately into a dream state.)
Essentially, this is what we know:
-Aimee can see and process what she sees with a slight time delay.
-She has tested normal in all areas, aside from the size of her brain/development of the myelin sheaths. This is a really good thing, because if any of the tests had come back with abnormal results it would have meant her brain would not be able to catch up.
-As it stands, we will be meeting with Genetics to be sure that all the information has been looked through and to determine the likelihood of the same challenge happening with future children.
-The critical point for creating myelin is by 3 years old. By this point, she will be permanently caught up, partially behind or stay where she is at currently. At 3, we will do another brain MRI to determine which of the these has happened and from this we can determine what point she will be able to develop physically and mentally.
-There is nothing special we can do to make the myelin get thicker faster.
-We will continue to meet with therapists to stimulate her development and neurodevelopmental doctors to track her changes in every area.
All that to say...we don't know much.
Aimee could catch up and be normal, simply using her own time clock for development.
or Aimee could be a year behind the average kids.
or Aimee could stay under developed.
No matter which of the above happens, the truth is that Aimee is lovely and a rich blessing to our family. We are having fun playing with her as she is becoming more interactive. Please pray that we would learn to completely enjoy her for who God has made her to be and that His purpose would be made perfect in her life.
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.
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