Monday, 27 August 2012

It's all good...

Okay, so it's been 1 month since my last post...that's better than 2 months right? The scary thing is that it feels like just yesterday when I posted last. I think we can all appreciate and agree that time and life is whizzing by way too fast!

So what is new and what has changed...well actually it’s been going pretty great lately! I fear saying that out loud but there...I've done it!

Ryan got a new (loaner) gait trainer - here he is with Quin and her tractor:

On July 17th, Ryan's endocrinologist called to let me know he would like to increase Ryan's thyroid meds (FINALLY - I have asked and requested this a few times but was always given the same answer - "he's in the normal range so let's just leave him for a bit"). Sure he's been in the normal range but it's been in the very low/normal range. There are many symptoms of low thyroid and there may be some of you reading this that already know about them. Below are just some of the symptoms that we've seen in Ryan that could be related to his low/normal levels (some of these could also be related to his other conditions/medications as well):

* Constipation
* Fatigue
* Depression
* Low muscle tone
* Impaired cognitive function
* Inattentiveness
* Irritability
* Mood instability

Since the increase and more so in the last week or so (along with reintroducing B6 back into his med/supplement regime) he has been on cloud 9! Not only has his mood improved but his cognition has also picked up. He's been actively reaching for his toys (hand/eye co-ordination has improved greatly). He's playing more. His strength and willingness to work has been so encouraging to see (on July 25th he started butt scooting a tiny tiny bit). Mostly though and yup, here come the tears...he seems to really know who I am. He's been much more responsive to me. Almost reaching up for me in a way when I ask him if he wants his bottle etc... The other day I went to get him from his nap...his back was to me against his crib. As I started talking to him he tilted his head back to look at me then reached up and back with his right arm/hand to find me! Oh what sweet sweet feelings and chills that gave me!

Let's see what else has happened since mid July?

Quin is potty trained!!! Wow she was as tough cookie with that one!

Also our little potty goer's soccer season came to a close - something I think she was happy about. Each week we’d hear the same thing “I want to go home” or “I don’t like soccer”. Most weeks it was really hot and boy does she ever pink up and not do well in the heat! Here she is actually posing for her official soccer photo:
On the bright side she met a couple of little girls who will be attending the same nursery school as her (same mornings)! It’s hard to say for sure just yet if she has been cursed with my shyness. We’ve had her in a couple of things now to socialize her a bit and give her her own little “life” outside of what she has to deal with at home, I just hope it’s been enough to prepare her for school life. I feel sick even saying that! Like any Mom I’m dreading being away from her…it’s only twice a week for 2.5 hours at a time (and occasionally I will be with her as a duty parent). But ugh, how my heart breaks and stomach drops at the thought of walking out of that building without her and leaving her to fend for herself and be with strangers. I know they won’t be strangers to her or me for long but still…. It’s going to be awful but good (for her) at the same time. Let’s change the subject!!! *sniff*

The results of Ryan’s hip and shoulder x-rays both came back clear! Phew! There is still some clicking and popping so I’m hoping its “normal” and nothing comes of it…perhaps as he grows it will lessen.

He had his 4th ERG while on Vigabatrin performed on July 27th. I’ve emailed the ophthalmologist and we are now just anxiously awaiting the results of the exam which will tell us how his retina’s are doing while on his anti-convulsant meds.

One day near the end of July, I got the mail and there was a letter and cheque from the government regarding the disability funds Ryan is entitled to. The next thing I knew I was sitting in the van in front of the mailboxes crying…good lord! I think it was just the fact that it was official that the government says Ryan is disabled (hate that term) and they are saying here you go…you’re going to need this. I guess they are kind of right. Ryan has a $195 therapy jumper hanging from the ceiling (he’s way too big for his infant jumper – but loves to jump so we needed something) and he also has a pair of semi-orthopedic shoes coming from the Netherlands soon that require final payment. These should help his ankles from collapsing when standing and fingers crossed help get him up and walking. He’s doing well with regular physiotherapy but these shoes will give him just a touch of support where he needs it most.

On the 31st of July he had his check up with the developmental pediatrician. She was pleased to see how much stronger his core had become since she last saw him in December 2011. His head control was also something she was happy with. She does however, put him at about the level of a 6 – 8 month old baby (he is currently 22 months old). This didn’t come to a shock to either Jeff or I but it’s still hard to hear. I was hoping for more of a 6 – 10 month old range and at times he does seem a bit older than just 8 months old so I’m going with what I see and not what one doctor says after spending less than 1 hour with him.

Jeff has had a couple of things done recently. One is some very special 'art work' on his left arm...the kids names in script and braille:

Then in early August, he went in for the old “snip snip”. A year ago (July 17, 2011 specifically) I finally came to terms with the fact that we would have to stop at 2 babies. I had been going back and forth since the appointment when we learned about Ryan’s vision. Our plan was always to have 3 (heck if I was younger and we were richer I’d love to have gone for 4) – which is why Quin and Ryan are so close in age…we wanted them all as close in age as possible. If things had gone as planned #3 would have been born last month. After Ryan’s Infantile Spasms diagnosis Jeff too admitted that having a 3rd would be unfair to not only that baby but to both Quin and Ryan. As time went on it became apparent just how much time both our little ones need given all that has happened and changed since "that phone call" on January 19, 2011 and that we wanted to give them anything and everything we could to make life as easy as we can for them. We did however give it another year just to be certain. The night before he went in he was working a late shift. I put Ryan to bed first as usual and gave him extra hugs and cuddles soaking in the bit of baby-ness that remains in him. Next was Quin…we did our usual routine but spent a little more time rocking in the chair together before I tucked her in. Before I knew it she was fast asleep in my arms and I was a sobbing disaster trying so hard not to wake her. The last time she fell asleep in my arms she was 9 months and 9 days old (it was the very last night she was breastfed). The fact that it happened the night before her Momma was to be cut off (no pun intended haha) from future babies didn’t go unnoticed.

Feeling a little sappy and got to looking at some old photo' are my little ones as babies.

Quin at 3 weeks old:

Ryan at 3 weeks old:

Quin - almost 2 months old:

Ryan - just over 2 months old (it was when I was taking these pictures that I started to REALLY wonder about Ryan's vision as he would not look at me at all and it was also when I started admitting that his eyes seemed a little off):

On August 17th, Ryan finally had his allergist appointment. He’s a little bit irritated by cats it seems but clear on a lot of other stuff so that was good to get done and out of the way. It was definitely one of his better doctor appointments!

Last week was his check up with the endocrinologist to go over his latest blood work and overall check up. His thyroid levels are up at a more comfortable range. The endo though still says even though he was a little low before he was still in the normal range. Okay that’s fine and all but we all (myself, Jeff, the whole family – I’m sure even Quin) have noticed how much happier and “with it” he has been since the upped dose. I told him as much but got the typical ‘cover their butt’ response. I swear most of these doctors really don’t know what they are doing half the time and just try this or that till they get a good result! Dr. “V” did say that Ryan was an impressive looking specimen. Ummmm thanks? Haha… Which he followed up with "he really is quite gorgeous"….THANKS! I mean look at this face:

These were taken on the 1 year anniversary we got the call confirming he had Infantile Spasms (he really doesn't seem to care - haha):

Most recently (this past weekend) we went up to visit my sister, her family and their brand new pool! Neither of them had been in a real pool before so we were really excited to get them in it! Quin loved it! Ryan was a little preoccupied with the ear cover I made him wear to keep water out of his ears (tubes). I cut him some slack and took it off and he came alive! For one it wasn't there to drive him nuts and for another he could hear. It's a pretty heavy duty fabric and no doubt cut him off from the world just a bit!

Going forward the month of September brings a lot of stress - another eye appointment with the ophthamologist, Quin starting nursery school, the video EEG and trying to keep and make time for all of Ryan's appointments mixed in with getting Quin to and from nursery school... Oh it's going to be a tricky road in these next few weeks! Right now though all I'm concerned with is that Ryan has been comfortable and happy for a good 3 maybe even 4 weeks now.

It's been awesome!