Thursday, December 10, 2015

Nate's Needs/ Issues

Nate, Nate, Nate.  Oh so much to say about our son.  But, this will strictly remain a medical type post so not as exciting knowing what he can do.  That's for another day.  Nate has had tons of medical testing done including genetics.  I'll cut to the chase.  Genetics found nothing though one more blood test to be run. They are pretty positive he has Angelmnan's Syndrome.  We'll see.  Nate is very delayed but we think he's smart.  Medically, not doing too bad.  His ears give him a rough time so this past Monday we went to an ENT to see about tubes.  Doc said wait and see.  Nate gets ear infections a lot.  I only take him in for the major ones.  I told doc fine, I will take him in for the minor ones too that I'm used to treating at home.   So, next infection I'm supposed to go in so that it can go on record.  Gee whiz.  Trust me, we don't willingly ask for surgeries.  It is the last thing by far we want to do.  Surgery is no fun for anyone.  But, sometimes, it makes things better.  And I truly feel tubes would help Nate.  He claws his face up when his ear hurts.  For now, all we can do is wait and see.  Doc is reluctant.

His ortho ordered smo's for his ankles.  We don't use them.  At all.  Bojan's prosthetic team and us watched his gait, watched his feet and all of us agreed he didn't need them. Honestly, we weren't really sure why doc ordered them.  Prosthetist made them but he does fine without.  Originally, it was supposed to be for support.  But they were ordered when he was just learning how to walk.  We'll follow up with ortho when we go in with Alyona.  But, he is doing awesome with walking and starting to try to run.

Biggest issue the team has with Nate is his weight. They feel he is not gaining enough.  They are pressing for a g-tube. We are adamantly against it.  His therapy team and us feel he'll just rip it out.  Plus, he IS growing.  GI says he is growing up but not out enough.  Remember though, he is failure to thrive.  So was Alyona.  His history may be that he is just from a skinny family.  who knows.  So many factors.  He wore a 9 to 12 month top, 18 month bottoms last year.  Now, in 3T's.  He IS growing.  Our social worker yesterday didn't think he was overly skinny either.  So, we wait four months and take it from there.  I know the GI will still push for the tube but I just don't feel it would work for Nate.  He's a tough case. 

Lack of sleep.  This is by far his biggest issue and ours. It is hard to run on zero to two hours of sleep some days.  Really, really hard.  We're doing it but doesn't mean it's a cake walk.  See, Nate has severe PTSD.  Severe.  There are certain triggers.  Electrical cords, base noises, hair clippers, etc.  Nate will get 'stuck' sometimes in what we call an episode.   Just this week, he woke up.  Screamed three hours straight.  Literally screamed.  Looked terrified of something but nothing I did helped him.  IT's hard to see your child in such distress and not be able to help them.  Just try your best to soothe them during the screaming and not wake up all the other kids.  Nate does not nap.  Ever.   Nate's sleeping is not the best either.  And yes, we've tried just about everything you can throw at us for a remedy including meds.  Remember, t his is a child that the Duke sedation team was ready to give up on b/c they could not get him to sedate.  Every night Nate will fall asleep on the couch with Warren and I and then we move him upstairs.  He never likes to be alone.  And will never willingly go to sleep on his own in the crib.  We've learned little tricks to help.  Footy pajamas do help.  Majority of the time though, at some point in the middle of the night, we have to go get him and come put him in our bed.  Yes, we have a king sized bed but with Nate, that is definitely not enough room.  And he kicks!  Makes for very unrestful sleep.  For everyone.  Combo that with Max who leaves for work at 2:30 am and well, we are tired.  So, working on this issue the most.  It has gotten better I will admit.  However, still needs some help. 

I think those are the highlighted medical items.  He no longer head bangs.  But, he will claw at his face.  We have no more seizures with him so that is good as well.  Nate's made a lot of progress but we still have quite a ways to go.  We'll get there day by day. 

1 comment:

  1. Hectic. I hope you get the sleep you need so you don't all lose your minds.