Saturday, December 12, 2015

Random of Nate

Today is Saturday and thought I should at least post something despite my laziness.  I did a few errands today.  We all went to a performance tonight at the church.  It was wonderful.  Alex and Nik went with our neighbor Jimmy today.  He took them fishing and out for burgers.  They had the best time.  Nik was SO happy and could not contain himself.  He was telling me all about how fast the boat went and all that stuff.  Was great.  We have such good neighbors and friends here.  Truly, we do.  So, low key day for us. 

Thought I'd share a few pics of Nate from the other night.  Nothing special, just random pictures.

Irina feeding Nate ravioli.  He starts feeding therapy Monday.  He refuses to eat in the high chair and frankly is getting too heavy to hold.

He loves that ravioli of his.

Squeeze from one of his sisters.

All the poor dog. Nate has discovered the dog....and her tail.  He just wants to pull her hair out.  Thankfully, a very tolerant dog.

Alaska is so good to him.  She has spot where he can't get to her though just in case.

We tell everyone he is not spoiled, just overly loved.  Can you tell?

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. 

Wednesday, December 9, 2015

Irina's Ear Issues

Not sure how many on here know.  On August 30th, Irina accidentally poured super glue in her ear.  She's had surgery, been to the doctors many times, had multiple infections, been on antibiotics 4 or 5 times and been in severe pain on and off.  She finally got to the specialist at Duke today.  Irina's ear canal was SO swollen, they could not see inside to the ear drum w/ the super glue on it.  She also now has a polyp.  They gave her special medicine that is in powder form for the ear.  She uses this for a week and goes back next Wednesday.  If the swelling hasn't gone down, surgery for sure.  If it has, then they determine from there if they need surgery for the ear drum as well to get remaining glue off.  As of today, she has conductive hearing loss at a moderate level. So, we are at a stand still once again.  It is not looking good for her ear nor the hearing at this point.  Time will tell. 

Kids had AWANAS tonight.  Sofie was made to stay home for being bad last week at church.  I mean super bad.  I was appalled.  She got the message loud and clear and kept apologizing.  Sofie is going through a phase lately and we're trying to nip it in the bud so to speak. 

Tomorrow, we have a homeschoolers park day.  Hoping to meet some folks.  Plus, weather is going to be gorgeous.  Can't wait. 

More posts forthcoming.  Just been a super duper hectic week is all.