Wednesday, 5 June 2013

Ryan's Rage

Oh me...oh boy sure can cry! :o( I hate to start this post off all doom and gloom but it's really been a rough few of weeks for Ryan (and the rest of us).

The day after my last post the poor thing was up in the night crying...slept a wee bit then woke screaming around 6:00am and didn't stop until 8:30am. The reason he stopped? He passed out cold. From then on he would scream and pass out off and on all morning long. It was so sad. If he wasn't being held he would just fall asleep in the middle of the floor. By 11:30am my Mom and I were on the way to the ER with him while Jeff kept Quin company at home. When we got to the hospital I noticed his ears were leaking pinky coloured fluid. :o( Oh the poor thing - it was an ear infection (confirmed by the best ER doc we've had to date)! Since his tummy was still suffering the effects from the Biaxin (antibiotic) from his bronchitis a couple of weeks prior it was decided to just put him on some topical antibiotic ear drops. Thankfully they seemed to do the trick!

In the middle of all of this going on I received the results of his blood work from mid April and was told his iron levels are still quite low...the lowest they had ever been. His pediatrician did up some calculations and found that he is only getting 1/2 the amount of iron supplement he should be - YIKES! That had to be upped which of course means an increase in poop issues as iron supplements cause constipation - ugh as if he doesn't have enough poop troubles due to his hypotonia! Along with the iron increase it was also suggested to start him up on a Vitamin D supplement (in hopes of boosting his seemingly fragile immune system). Well after about a week of the iron increase he started to feel pretty uncomfortable so I backed off his supplement a little bit - seems to be helping.

On the holiday Monday, May 20th I put Ryan down for his afternoon nap when I noticed he was stepping, almost climbing on his bumpers. Hmmmmm....that's not good! Little bugger would just giggle when I said "Ryan, no!". I squished them down as far as I could then went to go tell Jeff what a goof he was being. I then turned on the monitor and saw that Ryan had moved to the other end of his crib and was leaning and wiggling along the edge of the top rail...before I could even THINK of saying "uh oh" he was over the edge and there was a sickening thud that very quickly followed. I quite honestly think my feet grew wings as I flew up the I was running he started screaming (never been so happy to hear him screaming)!!! When I got to him he was flat on his back just wailing. Oh the poor thing he was so scared. He didn't seem hurt although there was a bit of blood in and around his mouth - nothing serious seemed amiss. Unfortunately, since his fall he hasn't been himself.

During that first week after his fall I had Ryan at our family doctor once and the pediatrician 3 or was it 4 times...I can't remember. I had been in touch with the neuro nurse as well and even got in to see the neurologist himself. Everything seemed fine with him physically. Mentally and emotionally though he was an absolute disaster! The first week after the fall he was sad and only wanted to be held and cuddled. The second week and up to present day has been horrific. He has been having some serious serious rage issues! It's like he went to bed Ryan and woke this crazy, angry, out of control child who I've never met! The neuro said it could be behavioural (due to all of his conditions) or it could be an extreme case of the "terrible two's". Even though Ryan functions at an infant level there are parts of his brain that are very much a 2.5 year old. Since he can't verbalize his frustrations he could be acting out the 2's in a bit of a more severe form. It's so hard to say and so hard to experience. Jeff and I are praying it's just a phase - a short one at that because it's been scary and at times dangerous for Ryan and for anyone handling him. Even poor Quin got knocked around a bit by him. :o(

What's frustrating about how he's been feeling (aside from the fact that it's so heartbreaking not being able to fix what is wrong) is that he hasn't been able to make any big developmental gains like he had been doing back in April. He is currently 30% through his Vigabatrin wean but due to feeling so crummy and moody he's just not wanting to do much at all.

Cross your fingers for Ryan and all of us that this is just a phase - if not I may just have to rename this blog "Ryan's Rage"! :o(

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