Thursday, August 02, 2012

Update on Alex

Thought I would post an update on Alex.

Several things that I have learned have made me grateful that Alex is joining our family as #7.  It’s little things that make me realize how grateful I am that we have been prepared for this sweet little man. 

For example, I swaddle my babies.  I learned to do that as the girls were in the NICU.  Guess what?  When little ones with CVI are tired, they do repetitive movements – often hitting themselves in the head.  They are searching for their boundaries and they are tired.  Guess what you do for that?  Swaddle them!  Awesome.  I have been doing that for months naturally.  I have only seen Alex do the repetitive movements like hitting himself in the head a couple of times because by the time he’s that tired, he’s usually swaddled, binked, and in bed.  love it!

Sweet Alex is getting this bottle holding thing down! 

“Can you feel the love tonight?”  Sweet Bella loves her little brother so much!

august 2 001august 2 015

Another thing that we do now is talk to Alex about everything!  We warn him before we touch him.  We talk through diapering and changing clothes.  We identify sounds and things he is touching.  He has always been a happy little boy, but now that we understand how he is perceiving his world, he is even happier!

august 2 043I have been told that the reason he isn’t holding his head up is because he is severally visually impaired – there’s no reason to hold up his head, there’s nothing to see.  So we have to do lots of different positioning for him to learn his place in space.  Laying, sitting, and upright.  Since he doesn’t have the trunk or head control for these position, that is a lot of equipment to use.  Guess who already has all the equipment?  We have the little room for laying down(we made that one), the special tomato chair for upright sitting, we have the stander for standing (albeit very, very pink – still struggling with that one.  Becca says we should have august 2 046gone for the yellow stander.  Oh well.  Real men love pink, right?) (oh, and he loves the stander – the chest strap is at just the right height for teething!)


And introducing braille.  We don’t know if he’ll be able to use braille.  We’ll have to wait and see how his CP complicates things.  And to be totally honest, we have to wait and see how his cognitive function is going to be.  Will he be able to understand braille or will he have to use a specially equipped dynavox?  The answer will come in time.  But I am grateful I already know about dynavoxes and how they can be specially adapted for the visually impaired. 

august 2 050But if he can use braille, they say to start young, to train the fingers to feel things.  How fun this was to read a book to Alex and move his fingers over the dots.  In this particular book the pictures are also raised.  At first he fought me, but he stopped when he started noticing the shapes beneath his fingers.  I was impressed by that!

Another thing that I am grateful for is that there are already excellent PT, OT and STs in our house.  We didn’t skip a beat when he was diagnosed.  His intense individual therapies haven’t started yet because we are still waiting for funding, but they are already in the house and giving us books and advice.  Alex doesn’t have to wait for months for intakes and scheduling; he gets the benefit from these ladies now when we need it most.  I am grateful.

One thing I naturally do with my babies is to give them a mini-massage as I rub lotion into them after their baths.  Massage is wonderful for Alex.  With his tight muscles, I now include stretches to help his limited range of motion.

And I am grateful that we are already in the therapy mode – with Joy and Bella, I have thirteen therapies a week.  We sleep, eat, and breathe therapy.  It’s already how our minds are geared.  The girls are already used to helping, therapy, and being selfless.  I am grateful.

Alex ear points (orients his head by turning his ears towards sound).  He loves the silly sounds that his Daddy makes.  He loves music.  He is such a sweet little boy.  We all love him dearly!

1 comment:

asiaelizabeth said...

Such a beautiful happy boy! That grin could not be any bigger! My fav. picture is him eating the pink chair. Also, he doesn't care its pink we assign what color is okay for a certain gender but he cant see it so it doesn't matter. ( Eagan is constantly wrapped in pink flowered blankets thanks to Aurora so I tell this to Ben all the time :))From what hes doing and how much he perceives I personally don't think he will have cognitive problems but I'm not a Dr. So which instrument has Becca decided he will play? You don't have to read sheet music to play beautifully, he will actually be able to hear the nuances better. Ben says there are plenty of phenomenal blind pianists that actually play better because of it(Stevie Wonder etc.). There is a TV special we watched about it, he says he will find it for you and send you a link.He is intrigued and I'm sure you will get much more information than you want. ;)

Aurora and Gideon went for a diagnostic with therapists yesterday for speech. We were told they are both incredibly smart, perfectionist but both have speech problems (different ones) which makes them very frustrated. So the first week of September ( Germany shuts down in August) they start therapy twice a week. They think Aurora has moderate to severe hearing loss/damage ( she speaks like a hearing impaired or deaf person ) so after we get back from Italy we are going to some specialist for extensive tests for both of them. I feel horrible that I had no idea. I'm excited for the coming months though and finally getting answers and help for their problems. Thank you for sharing so much, instead of this being stressful for me I'm just excited for them to get the help they need to be the best they can be.