Thursday, February 3, 2011

Too see or not to see, that is the question

Nik & Alyona had their specialist appointment today.  Warren took off work so he was with me all day which was great.  Also, only had 2 "littles" with me today so that made the room a little bigger.  Not much.  We'll start w/ Nik.  He is now petrified of the chair.  Ever since his visit to the dentist, he's petrified of the chair.  He's been to this place & doc before, no issues ever & then today cries even after us telling him it won't hurt.  Even after he saw Alyona do stuff.  Got to work on the fear.  Also, work on what they did to him at the dentist office b/c w/ this much fear, there is something fishy at play.  Anyhow, back to the appointment.  Once no fear & he relaxed, he was fine.  Nik's vision is SO much better than when he first came home from Russia.  The change is amazing.  Love it!  His script changed a tad this time but not much.  Even better news is we don't have to go to a specialist for him but every 2 years now.  Got the script & he was done.  No big or new issues w/ him.  Fantastic.

Alyona is a different story all together.  I will start w/ a little old knowledge.  Alyona has strabismus and ONH.  ONH is optic nerve hypoplasia.  Essentially, she has really small optic nerves.  Makes sense w/ her microcephaly and FAS small features as well.  Her strabismus was never corrected in Russia obviously and we adopted her at age 7.  No patching helped & I was not going to torture her w/ the drops.  The drops you blur the ONLY good eye she has and try to get the other eye to move a bit.  So, no drops here or she literally would not have been able to see.  She got new glasses when she came home from Russia but the script was not much different than what she had.  Seemed to be doing okay & we do go every year to get their eyes checked.  Well, lately, she can't even read.  Nothing.  She couldn't read her grades that were in her hands.  Couldn't read them to me yesterday.  Sad to watch.  But I smiled anyway.  She can't see the board. The teachers have said she can't see the papers/worksheets that they give her.  They started giving her large print worksheets which seemed to help a little.  But, very little.  Now, b/c of the severe strabismus in the one eye, it is blind.  Useless.  Period.  No correcting it.  Well, I think the corrected bit was 20/200 maybe.  She took her glasses off & could not read not one bloody thing w/ the left eye.  That's her bad eye.  Wasn't worried.  Then the right eye.  Saw the strain on her face.  And then, "can you see it?"  No.  Can you see it now?  No.  Can you see it now?"  No.  You get the picture.  Hard to watch.  Asked the tech how much did her vision change. She said it is much weaker.  Long story short, doc examined her after being dilated.  Yes, Alyona's vision has dramatically changed.  She can not see in front of her.  I don't know what her corrected vision is now.  Maybe 20/80?  Not sure.  Have to re-ask that one.  Good news is that the glasses should help quite a bit.  Also, he thinks the drastic change is from her eyes growing.  However, with ONH, we have always been told it is NOT a progressive disorder & her vision should remain stable & steady through the years.  It has not. Ophthalmologist doesn't seemed worried though.  So, Alyona has one good eye that isn't so good.  But, at least she can see.  Sort of.  For her, it is like looking through grains of sand.  She will of course go again next year.

We left and went to lunch.  Unwind a bit.  Not sure unwinding is the word I'd use w/ 4 little kids.  They did well though.  Paid a bill, & ordered sheets.  Why do we have to order?  B/c they were not in stock.  We have a mattress from the Original Mattress Factory which we LOVE.  However, found only sheets from them are the ones that work.  For 5 years we've had the same sheets.  Ripped beyond repair.  We have one set of sheets.  After an accident from the kids & puppies, & sleeping on the mattress w/ out sheets that night, we decided it was high time we had 2 sets of sheets.  Went to TJMaxx (love that store) and picked up a few things.  Mainly, 2 gifts for b-day parties Alyona & Nik have to go to this weekend.  I really can't afford to spend a bunch on gifts for parties.  So finding deals is key & we usually have a gift closet in my room I keep deals in.  It's dwindled.  So, was able to get 2 $30 each toys for $7.  Not bad at all.  We came home & unloaded groceries b/c we had also gone to Walmart to get the new glasses for the kids.  Yikes!  They are plastic, not titanium.  Oy!  Oh well has to be done.  Kids need to see.  LOL.  What killed me more was at the doc's office.  Specialist co-pays actually doubled!  I really wasn't expecting it.  I've been paying $20 a visit for years & we've handled it.  Not only did our premiums go up but the copays are now $40.  Keep in mind how many kids we have that see specialists...all of them.  URGHH!!!  I won't get into a political debate on here as I said I'd keep out of that stuff.  But this new health care change will literally break us.  not sure about anyone else but 10 kids, all special needs, and well, you can imagine.  I used to love my insurance.  It is private through our company.  Great insurance.  Now, I see major changes that came about this January.  Trying to re-budget for it all & calculate how much more I'll need.  Still, we are fortunate to have insurance so I'd better keep quiet.

All in all, not a bad day.  Still worried about Alyona and what the future may bring for her.  We'll see.  Haven't heard from USCIS yet.  If you haven't heard of the towel fundraiser yet, please do look below.  Some wonderful towels for sale that are just fantastic gift ideas.  Unique and one of a kind.  Help spread the word. Time is running out!  Only till next Monday can you place an order.

Week has flown by.  Too fast for me.  Alyona brings me home a paper on Tuesday.  It was for a concert for her that Tuesday evening.  Lovely.  Missed it of course.  A recorder concert.  Oh well.  Told her next time can you please show mommy all the papers.  My kids do this to me all the time.  Drives me insane b/c then I look like this non-caring mother that can't keep the dates of stuff straight or when things are due.  Umm, no.  Dog gone kids just either 1) don't give me the papers or 2) give them to me the day before or the day of something due.  Got to love it.  Hope no one else's kids do that.  Alex has a project due Feb. 18th.  I refuse to remind him again.  His project.  Be more than happy to help w/ it but NOT the day before it is due.  How much you want to make a bet he tries to weasel help out of us Feb. 17th?  I know I was a procrastinator but really am trying to teach the kids better.   Got to go.  More tomorrow.  Just been a super busy and super long week. 

2 comments:

  1. So much I could comment on...but I'll stick to what is causing me great grief right now. Tessa is throwing away her school papers...including permission slips. We have been over this, then over it again- don't do this. I feel like I must look like a total fool. No wonder the teacher hated me last year...I have since learned the word for what Tessa did to me last year with the teacher..."triangulate". I bet you can tell I'm studying RAD stuff. Luckily this year's teacher knows me and gives me the benefit of the doubt..but still, she knows I'm overwhelmed and probably just thought "I bet she's so overwhelmed again so I won't bother her about this issue". I was going to ask you how you stop them from doing these behaviors and use the example of not showing me school papers so that I look like I "have too many kids to handle so what business do I have to bring more home then". I guess you don't know the answer then from your post (lol). Well...at least you understand my grief.

    Blessings, Jennifer

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  2. All kids forget to bring home papers. Special needs kids, Aspie's, ADD's, Average kids, and even Smart kids. I was considered a smart kid and I'd forget too. In kindergarden, the teachers would pin papers to our coats (I went to a private Christian school for kindergaden.) After that, regular school, I'd forget.

    MG

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