Sam's Update

For about 1.5 years Sam has seemed to have issues with vertigo off & on.  We've had everything tested-traveled to NY for his eyes, seen the neurologist had Cat scan and MRI (in which he quit breathing...) Yesterday we finally got in to see a neurologist who specializes in vertigo/inner ear issues.  Unfortunately he feels Sam has  neurological deterioration based on everything.  I was so shocked at getting a basically terminal diagnosis I was pretty much speechless.  I wasn't crying or anything just shocked to my core.  The appointment was very long and the doctor did clean out a foot of ear wax out of Sam's ears.  When we finally got out to the car I was able to think and called our regular neurologist.  Thankfully he got right back to me and he doesn't agree with his colleague.  

There are more things going on than just vertigo and one thing that is concerning is nothing seems to be enjoyable to Sam except rocking in his chair and taking a car ride.  He quit playing with toys last year, he's not interested in music or tv  He doesn't want to even go outside.  When he directly interacts with us he is his normal self as far as how he acts emotionally towards us. He is not upset & has not been biting his hands thank God.  At one point he wasn't even wanting to eat or drink so we had a zillion tests ran on him but everything was perfectly normal then he started back eating and drinking normally.  

 

It makes us sad to feel like Sam is slipping away from us-that's exactly what it feels like most of the time.  But Sam is so complicated -this could be a stage he is going through.  One of his chromosomal disorders lists seasonal depression as one of it's components.  Interestingly enough Sam always has issues January-April every single year!  Usually they are medical but seem to have an emotional part to them.  Looking at FB memories today I have a post from 4 years ago that was about Sam and how he is acting more like himself after weeks of depression.  That encouraged me too.  We are hoping this is just something else besides what the specialist diagnosed it  as being.  At this point it's just a wait and see situation.  There is really nothing else to test or anything that can be done if it is neurological deterioration.  We have tested him up on side and down the other this past 1.5 years.  He's seen every specialist.  The dizziness comes and goes with him  unfortunately the disinterest is pretty constant.  However after the doctor appointment he has seemed a little more engaging.  Of course that makes us wonder about the whole ear wax thing!  He has been eating better the last week or so.  That was really worrisome when he was not interested in eating or drinking.  Sam generally loves to eat.  So keep our boy in your prayers.  

In other news everything is going good.  We are planning Sarah's "Children's Dream" vacation for August.  We picked out swimming with the dolphins in the Keys for her.  We wanted to do dolphin therapy but where we went with Sam is not open anymore.  But I know this will be great for her.  Actually the whole family is going to swim with the dolphins.  Last time I declined as I'm not a fan of animals way bigger than me in 16 feet of water!  But I think I'm going to do it this time.  Our older sons are not going to be able to go with us but our caregiver will be going and it'll be fun.  

In the next few weeks we have a SSI hearing for the little kids.  We have been fighting for them to get benefits for years.  It's insane!  This will be our 3rd hearing.  Sam is already 18 so his should be no issue but somehow it still is. People assume that we get all kinds of benefits for our 3 handicapped kids....just for the record they get nothing but med wavier!  Med Wavier is a blessing and usually people with special needs do not have Med Wavier until they are 21 years old in Florida.  But a few years ago a very sympathic worker put us on it due to the kids severity of needs.  It covers respite care and diapers which is a big help. And it has helped with Selah's charges for her group home.  But Sam and Sarah also will have another hearing regarding their respite care.  Somehow the state decided they didn't need it.  We are contesting it and trying to work around the situation.  Hopefully things will work out in our favor in both situations.