Alrighty, so it's been 2 months since Ryan's Vigabatrin wean was started. I apologize for the extreme delay in updating this blog - there have been lots of ups and downs and sick little ones ... Ryan is working on his 2nd cold in 1 month, Quin has an ear infection, I am at the tail end of a cold that started 2 weeks ago and Jeff woke this morning with a sore throat - the beginnings of the dreaded "man cold" - LOL! So it's been hard to get some computer time in! Let me give you the low down on how the first 24 hours of Ryan's wean went...
The night before I slept like horribly...I mean I sleep like "bleep" normally anyway (a trait my Mom passed down to me - lol) but this night in particular was extra crummy. I got up that morning and had some breakfast and a coffee then went to get Ryan. As soon as I looked down at him in the crib I started falling apart...when I picked him up I held him extra tight, looked up and said a little pray - down came the tears. I'll be honest, when I pray I really have no idea who I'm praying to and I don't know who you all pray to either...could be that guy they call God, a Buddha, the tooth fairy or Santa - whoever it is just keep it up - PLEASE! :o) So Ryan and I went downstairs...Jeff took one look at my face and just shook his head. I asked, "Do we have to start today?". His response was a quick "YES". I swear it took everything I had not to suck Ryan's usual morning dose up into the syringe...but I did it and this boy seems to be taking off! Here's a little run down on his accomplishments in the last couple of months.
So the wean started on March 3rd. On March 14th I was changing Ryan when I saw him looking at me. I don't mean he was just looking in my direction and seeing me...he was REALLY looking at me. I can't explain in words what exactly it felt like but I saw something different in him that made my heart skip a beat and produced instant tears. I would say it was this day when I first noticed the Vigabatrin "fog" lifting.
On March 23rd, Ryan pulled to stand against "his" wall (see below - picture was taken a split second after it happened) - very impressive because he did this with nothing to grab onto! On this same day he first cruised along the couch a little bit. Just a couple of steps but holy smokes was it ever neat!
March 27th, was Ryan's 6th sedated ERG in 1.5 years...ick! I hate that he has been sedated so many times but it's necessary to check for retinal toxicity. Here he is the morning I woke him at 5:00am to give him his meds:
On March 31st, while at my sisters place for Easter dinner my Dad was sitting on the couch with Ryan when my Mom called for me to come into the room. First thing that came to my mind was, "Please don't tell me he's having head bobs (spasms)!!!". Thankfully what I saw was something much MUCH better! My Dad was tapping on a pillow with his hand and Ryan was copying him!!! Not only that but he was taking turns! This was HUGE!!! Here's a little video for proof! :o)
On April 1st, I put Ryan in the bath fully expecting him to do his usual facing an end, corner or opposite wall of the tub. Instead of doing his usual "ignore Mommy" thing he turned himself around and faced me the entire time he was in there!!! I couldn't believe it...it really was the strangest experience ever! The next night I brought my phone into the bathroom with me so I could take pictures just in case he did it again...he did and here he is:
The "inch"stones that happened on March 31 and April 1 say to me that he's ready and trying to communicate in his own way...this is VERY big for Ryan and all of us!
Now for the big news!!! On April 4th, at the end of Ryan's PT session his therapist walked him over to me (he does assisted walking with the therapists (or my) hands on knees/thighs and sometimes as low as his ankles). For his very last step his PT completely let go of him and he took that last step all by himself right into my arms!!! Now as I mentioned at the beginning of this post I'm a pretty crummy sleeper...I was also battling a terrible headache on this day so while I saw him take that last step on his own I did need verification. I sent a quick note off to his PT asking if he really did it and bless her for getting right back to me and assuring me that she did let go and it was all him!!!
Here is a super short video of Ryan cruising along our back window (his favourite place to hang out):
On April 5th, Ryan came down with a cold that hit him pretty hard. His cough started the day after and while this may make me sound like a horrible person I loved listening to him cough! Normally when he coughs its a weak little half cough. He's never been able to give it all he's got which I think is part of the reason his colds always settle in his chest. This time around though holy smokes he's been coughing a real big boy cough...full on hard getting all the junk out cough! Vigabatrin also causes decreased muscle tone so maybe just maybe he's getting a bit stronger too during this wean! What's crazy is that we're seeing all these changes and progress and his dose has only been lowered very minimally. Could his development lately be just him getting older and maturing or is the wean really making that big of a difference? Definitely a bit of both I'd say but I have no doubt that the lowered meds are for sure having a big impact on his beautiful brain! Unfortunately, the cold developed into bronchitis so he went back on antibiotics. :o( Since he had just recovered from pneumonia (in January) his doctor put him back on the heavy duty antibiotics and yikes he really didn't do too well on them this time. He got a funny tummy, lost his appetite and started having some noticeable (what I felt) seizure like activity. He had lots of body jerks and shuddering, twitching, sharp abrupt eye and head turns. At times he was really out of it - dazed, zoned out. When he would go through all of this he would whimper and also seem to get really tired and worn out. I took some video and sent off a few e-mails to his neurologist each one was met with the same answer - "I don't see anything concerning". Ugh... I put in a request to him for an EEG making the point that I felt Ryan should be monitored a little closely mid wean (and of course he'll get another EEG post wean). He agreed (or he just wants to shut me up) and will be putting in a requisition for a non-urgent EEG.
On April 11th, Ryan sucked out of a straw during his speech therapy session!!! He didn't just do it once - he did it a bunch of times!!! It was SO neat!
On April 21st, my sweet, sensitive and oh so feisty Quin turned 4 years old!!! The picture of her eating her cereal I took at exactly 7:49am - the time she offically graced this crazy world with her beautiful presence!
This girl I tell you is really something. I'm sure I've said before how its difficult of course to explain to her what is going on with Ryan and really there's no need to bombard her with things to think and worry about... She definitely is becoming much more understanding of what Ryan is able and not able to do. As you can see in the below video she loves being his little helper. There are times too when she'll rush over to him if/when he falls. Still though in keeping with her childish innocence and desire to have a sibling to play and talk to she does still ask "Is Ryan going to talk today?" or "When can he chase me?"On April 24th, I noticed Ryan was making some very definite "de" and "be" sounds!!!
On April 25th, we flipped Ryan's car seat around so that he is now forward facing - a big step for my hypotonic little one! He is so incredibly long that it was just getting ridiculously uncomfortable for him to remain rear facing!
On April 30th, he took 1.5 solo steps during PT!!!
May 3rd, Jeff and I had an appointment to get Ryan's IBI assessment results - they were as we expected - DENIED. There was a whole huge list of stuff we went over and talked about. Basically what it comes down to (for right now at least) is that they require the child to at least function at the level of a 1 year old (which our little cutie does not - YET). He has been deferred for 1 year and will be reassessed. The good news is that he doesn't lose his spot on the wait list (which is about 3 years long). Where does that leave us now? He is still eligible for the ABA therapy - much less intense but still not something he could cognitively handle at this point. There of course is still a wait list for this but we could go private if we choose to. For now we have decided against additional therapy - at least with regards to the autism diagnosis. We will continue with what we're doing but at more "intense" level (at home - aka. free therapy) and try to bring him along a little more ourselves first. I will however be making some calls next week just to see where about's he is on the wait list for ABA.
Along with the news on this day, Ryan came down with another cold which included another horrible cough and this time a fever. Plus, his appetite is once again disappearing. Ugh... The day before he woke with his full blown cold I had taken him for a chest xray as he was still "purring" a lot - thankfully it came back clear! Hopefully this cold goes away quickly and Ryan can get back to feeling great again.
It's all been a very very exciting couple of months but the terror I was feeling watching him have some possible break through seizures definitely keeps me grounded (aka realistic)!
Thank you so much for following our little journey and again I really apologize for the delay in updates!
Please continue with your good thoughts, prayers and crossed fingers that he remains seizure free (and healthy).
