We finally made it to Wisconsin! This was supposed to be in April but insurance needed to be approved. Aaliyahs Neurologist read her MRI/MRA in February that had been done in October as a follow up from the year prior when she got a new diagnosis of Moyamoya disease. We were told this was an urgent appointment but the insurance is slow to get approvals done. We got there that's what counts!
Well after we checked in I was informed it would be 4 hours not 2 afterwards....oh boy! Dan said kids are good play it by ear. Well....after the four hours...little miss was throwing up and we ended up staying an extra 3 hours. She suddenly said give me my clothes and let's go! Dan said the kids were great! The little play room provided a nice place for Andres and get this...He said "I had a blast" lol. We were there from 6:30-6:30. IPad & iPods went dead, movie players were dead so Dan would charge one for about half an hour and give it to NeVaeh to watch, ran out of pullups about 3:30 so poor kid was soaked. But they were all happy!
The next Day we say Dr Lew a neurosurgeon who read the angiogram. He told us her right side of her brain did have a total blockage years ago that collateral circulation has compensated for and she has good blood flow to the right side of her brain.
The left side of her brain has very poor blood flow. He said the blood eventually gets there with the little collateral arteries but it's very slow. He recommends a surgery L Pial Synangiosis. They will take an artery from on top of her skull and place it under her skull on top of her brain it is supposed to encourage more artery growth and improve blood flow. This will be a week in the ICU as the surgery itself increases the risk of stroke. However without it she is at risk of stroke :( .
She also saw Dermatologist Dr Seigel. Her hemageomas are still active which was revealed with her angiogram. Usually they become inactive at age 2 but Aaliyah will be 7 in September. Because of her Moyamoya diagnosis she is not a candidate for any medication for the hemageomas so we will let them run its course. She did say maybe a couple more laser treatments might help lighten it up yet. (She's already had 5). Interestingly Dr Seigel saw her in Oregon and diagnosed her with PHACE Syndrome as an infant ...What a small world!!
When ever insurance approves this we will again be going back. We will also have two more follow ups after that. So I may have to buck up and get over my fear of flying...8 hours is a long time to drive. Travel may prove to be quite an expense.
Irony of this all...I bought newer car so we wouldn't break down...my car overheated right when we made it to the motel. We made it to all the appointments ok but afterwards it overheated again. Lol...I think this is God's way of keeping our mind on something else.it never broke down just kept concentrating on the heat gauge. Not sure why a fan motor on a three year old car should go out but such is life lol.
With NeVaeh a month ago she had her sedated ABR. She did well with her sedation for this but her waking up she is a fighter till the medications finally wear off....She is very strong! The results were good and bad news. Good news her hearing in her right ear is fairly good. She can hear up to 30 decibels. Bad is she can not hear anything in her left. The audiologist said there is a device that could help called a BAHA. It would consist of an implanted thing behind her ear that the actual
device attaches to. Im not sure if we will go there or not. They said they could trial it with a head band first.
Adventures of children with special needs are never dull or lacking of stress to say the least!
The next Day we say Dr Lew a neurosurgeon who read the angiogram. He told us her right side of her brain did have a total blockage years ago that collateral circulation has compensated for and she has good blood flow to the right side of her brain.
The left side of her brain has very poor blood flow. He said the blood eventually gets there with the little collateral arteries but it's very slow. He recommends a surgery L Pial Synangiosis. They will take an artery from on top of her skull and place it under her skull on top of her brain it is supposed to encourage more artery growth and improve blood flow. This will be a week in the ICU as the surgery itself increases the risk of stroke. However without it she is at risk of stroke :( .
She also saw Dermatologist Dr Seigel. Her hemageomas are still active which was revealed with her angiogram. Usually they become inactive at age 2 but Aaliyah will be 7 in September. Because of her Moyamoya diagnosis she is not a candidate for any medication for the hemageomas so we will let them run its course. She did say maybe a couple more laser treatments might help lighten it up yet. (She's already had 5). Interestingly Dr Seigel saw her in Oregon and diagnosed her with PHACE Syndrome as an infant ...What a small world!!
When ever insurance approves this we will again be going back. We will also have two more follow ups after that. So I may have to buck up and get over my fear of flying...8 hours is a long time to drive. Travel may prove to be quite an expense.
Irony of this all...I bought newer car so we wouldn't break down...my car overheated right when we made it to the motel. We made it to all the appointments ok but afterwards it overheated again. Lol...I think this is God's way of keeping our mind on something else.it never broke down just kept concentrating on the heat gauge. Not sure why a fan motor on a three year old car should go out but such is life lol.
With NeVaeh a month ago she had her sedated ABR. She did well with her sedation for this but her waking up she is a fighter till the medications finally wear off....She is very strong! The results were good and bad news. Good news her hearing in her right ear is fairly good. She can hear up to 30 decibels. Bad is she can not hear anything in her left. The audiologist said there is a device that could help called a BAHA. It would consist of an implanted thing behind her ear that the actual
device attaches to. Im not sure if we will go there or not. They said they could trial it with a head band first.
Adventures of children with special needs are never dull or lacking of stress to say the least!
