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.
11.27
We did get 2 test results back this week from the Neurodevelopmental Clinic. One was to check for a specific disorder that she had similar symptoms of, this test came back negative. The other was to check her Cholesterol levels (the myelin is apparently primarily made of cholesterol), this test came back normal.
More possibilities to check off the list...
11.24
I took Aimee down yesterday for her Orthopedics and Orthotics appointments, as well as, to get more blood drawn for her current testing. The appointments went really well. The Orthopedics doctor said her feet look beautiful. He also rechecked her hips, because there had been concern about hip dysplasia. Her hips seem to be doing great too.
The Orthotics department got her new, bigger shoes and a longer bar. They were very surprised that I didn't want to keep the old ones. Apparently they use the old ones in South America to fix club feet...why would I want them sitting in my closet when they could be used by another baby?
We are starting regular Occupational therapy at our home a week from tomorrow (12.2). I am excited to learn new ways of stimulating Aimee's development. The therapist who is coming has been working with infants that are behind in development in our county for like 30 years...I'm assuming this means that she will be really helpful...I'll let you know!
The Orthotics department got her new, bigger shoes and a longer bar. They were very surprised that I didn't want to keep the old ones. Apparently they use the old ones in South America to fix club feet...why would I want them sitting in my closet when they could be used by another baby?
We are starting regular Occupational therapy at our home a week from tomorrow (12.2). I am excited to learn new ways of stimulating Aimee's development. The therapist who is coming has been working with infants that are behind in development in our county for like 30 years...I'm assuming this means that she will be really helpful...I'll let you know!
11.13
Aimee had h
er 9 month check up at the doctor yesterday. She is 28 inches tall (70th percentile), 17 pounds (25th) and her head has grown 1 centimeter to 40 (not on the percentile chart). The good news about her head is that her growth is following the curve, well below, but growing at a normal rate over the last 3 months. Thank you Jesus!She also ate in her high chair yesterday for the first time (thank you grandma and aunties). She's growing up!
11.9
We took Aimee in on Saturday to have her lab work started. We found out when we got there that the doctor had ordered way too many test to be taken in one day. They ended up taking the maximum amount of blood they could take from someone her size without causing her to need a blood transfusion! Poor baby. Thankfully they were able to get enough to send to UW for genetics testing. I'll have to take her back in to get the blood taken for the other 3 tests that the doctor ordered. She is such a trooper though. Hardly even cried the whole time they were drawing the blood, even when they had to switch arms and were poking around to find a vein. I did have some serious baby teeth marks on my finger though.
11.5
After a long bout with Swine flu, we seem to all be in good health again.
Poor little Aimee though. Her body decided that now would be the perfect time to push out teeth. There was some very sad lower lip crying last night. Her hard work seems to be paying off though-two little teeth are poking their way through!
Upcoming appointments:
Friday November 6th to apply for the early intervention program through the school district
Saturday November 7th-Lab work at Children's Seattle
November 12th-9 month check up with Naturopathic MD
November 23rd-Club feet check up at Children's Seattle
November 25th-Ophthalmologist appt at Children's Bellevue
Poor little Aimee though. Her body decided that now would be the perfect time to push out teeth. There was some very sad lower lip crying last night. Her hard work seems to be paying off though-two little teeth are poking their way through!
Upcoming appointments:
Friday November 6th to apply for the early intervention program through the school district
Saturday November 7th-Lab work at Children's Seattle
November 12th-9 month check up with Naturopathic MD
November 23rd-Club feet check up at Children's Seattle
November 25th-Ophthalmologist appt at Children's Bellevue
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 =).
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.
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.
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.
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!
Keep praying for a miracle!
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.
From here we will most likely go in for a brain MRI and blood tests to prepare for our appointment with the Neurodevelopmental Clinic.
Well appointment #1 with the Occupational Therapist is done. It was...well we didn't walk away from it very enlightened. We were given some exercises that may help Aimee to develop. We should know more after the next appointments. We did however get referred to work with the Birth to 3 therapists of WA, who will actually come out to our house to work with Aimee. At least it is easier than driving to Seattle!
Please pray for us
Isn't it amazing how one question can turn into a thousand so quickly? Please pray for us as we try to take it one question at a time. Aimee is going in this Wednesday for testing in preparation to meet with the Craniofacial Clinic and the Neurodevelopmental Clinic in October. We really have no idea at this time if there is anything to worry about, but we do know that God created Aimee to live during this time. He created her just the way she is and we love her like this, but we are also believing for the very best for her future.
4 months!
Aimee Starla turned 4 months old last week! It is hard to believe, time is going by so fast. She has been the sleepiest baby since she was born, but she is now starting to realize that sleeping isn't the only fun thing to do. Grandma Starla gave her a little cow toy that she likes to talk to and she is enjoying schootching as her daily exercise. She now says mahaaye and aahooo. We're not sure what language she speaks, but clearly she is brilliant.
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