Friday, 11 January 2013

Bringing in 2013 with a little pneumonia

Yup, that’s right…Ryan has pneumonia. The bright side is you'd never know it! He’s playing and happy and so animated about life – it’s amazing! However, when he started coming down with it he was miserable. Just so sad and weak. For 2 straight days he wanted/needed to be held constantly (not that I'm complaining)…the second I put him down he would fall apart. As most of you know with pneumonia comes a fever. Ryan has never had a fever believe it or not in his whole 2 years until January 3, 2012. He only hit 101.3 but it was enough to send me into a full blown state of panic (fearing a febrile seizure). I’ve never pumped Tylenol into a little one so fast in my life. Thankfully it did come down! Right now he’s on some heavy duty antibiotics to clear everything up. I’m just hoping his little tummy does ok on these meds (got him on some probiotics to help out)!

So that's how we're kicking off the new year...let me update you a bit on how the end of 2012 went!

On November 30, Ryan's endocrinologist upped his thyroid meds a bit. It wasn't long before we again saw an increase in alertness...a better more stable mood and strength. On top of his thyroid increase from his endo, his pediatrician upped his iron dose - this also helped with all of the above. While I'm chatting about it I thought I'd jot down his daily meds as I've had a couple of questions about what he takes and when.

With Breakfast
Prevacid - 5ml (for reflux)
Vigabatrin - 750mg (for seizures)
Polyethelene Glycol - 8mg (for poop)
Iron - 1ml (he has low iron levels)
B6 - 50mg (for mood and overall neuro development)

With Lunch
Iron - 1ml (he has low iron levels)

With Dinner
Levothyroxine - (different amounts on different days)

At Bedtime
Vigabatrin - 750mg (for seizures)
Melatonin - 3mg (to help him fall asleep - but I'm going to start weaning him soon)

Right now he's also taking his antibiotics 2 x's a day as well as a probiotic supplement 2 x's a day. He also has 2 puffers as needed. Not too mention Tylenol and Advil to help him get through the teething (1 last molar to go)!

Here is a summary of all his amazing "inch"stones (and 1 awesome one from Quin) in 2012:

December 23, 2011 (14 months): Lifted his head for 4 seconds while in
semi-crawling position
January 9, 2012 (almost 15 months): Sat unassisted for 4-5 seconds
February 8, 2012 (almost 16 months): Sat unassisted for 42 seconds
March 14, 2012 (almost 17 months): Made a "beh" noise
March 17,2012 (almost 3 years): Quin pee'd on the potty *that's right - it happened on St. Patrick's Day*
March 26, 2012 (17 months): Went from tummy to sitting
April 22, 2012 (18 months): Found Ryan sitting up in his crib
May 17, 2012 (19 months): Put a piece of food (cheese) in his mouth
June 19, 2012 (20 months): Started sitting up in his bouncy seat in the bath
June 20, 2012 (20 months): Fed himself a veggie stick
July 25, 2012 (20 months): Started tiny butt scoots
September 28, 2012 (23 months): Got up into sitting from lying on his back
October 2012 (2 years): Started spinning on his bum to find his toys
October 29, 2012 (2 years): Stood unassisted for 3 seconds
December 15, 2012 (26 months): Held his bottle all by himself
December 24, 2012 (26 months): Butt scooted 4-5 feet
December 25, 2012 (26 months): 3rd molar finally popped through *Merry Christmas*
December 27, 2012 (26 months): Caught Ryan on his video monitor up on his knees batting away at his crib mobile *Happy Birthday to me*
December 31, 2012 (26 months): Butt scooted towards me when I asked if he
wanted his bottle!

The other great thing about 2012 is that Quin has really taken more of an interest in Ryan and even at times he has been curious about her - makes my heart feel so cozy when I see them together!

I thought I would take a look back at Ryan's appointments from 2012 as well and total them all up. His doctor appointments include: family doctor, pediatrician, neurology, endocrinology, ophthamology, GI and ENT. The therapy appointments include: physiotherapy, occupational therapy, music therapy, speech therapy and vision therapy.

Doctor: 54 appointments
Therapy: 163 appointments

So where are we you might ask with regards to weaning him off of Vigabatrin. Well, considering I'm still sitting here typing away it's safe to say it hasn't happened yet. When it does I'll be in a straight jacket and heavily sedated I think. It'll has to but it's still "not time" yet. I have a couple of wean schedules all ready to go in Excel and there they will be...till I'm ready.

I wanted to share this little video with you all (it was taken yesterday on January 10th, 2013)'s not the best as I did end up cutting Ryan's head off but was by myself and had the iPad propped up on Quin's craft table so it's the best I could do.
Yesterday was a good day...probably the best I've had in a long long time with both wee ones. I was a duty Mom in the morning at Quin's school and had so much fun. All the kids are so great to be around...the teachers are just so amazing and the other duty Mom's are such wonderful's just a happy happy place to be and I love it! Jeff and Ryan spent the morning together and had a good time so that made me happy too! Later in the day, Ryan was something else. I really don't even know how to describe it..he was Mr. Personality and Mr. Curious all rolled into one. After seeing him feel so poorly at the beginning of his pneumonia I was on cloud 9 with what I was seeing last night. Between the two of them (Quin who was just super awesome herself) and Ryan my heart felt like it was wrapped up in the coziest blankets was a happy happy night. This might sound a little twisted but I was really happy about with what this video portray's...a genuinely ticked off Ryan. I did a little physio with him throughout the day...this was taken in the evening and oh lordy was he ever mad at me!!! You can see once I finished that one tini tiny little exercise how he was ok with the world again...little bugger. In the background you can see sweet little Quin working away on one of her was just a good good night! Love my little bums so much!

Happy New Year everyone! :o)