Thursday, 29 March 2012

What a week!!!

Well actually it's more like what a COUPLE of weeks! Poor Ryan had been in a world of hurt for quite a few days. I chalked it up to severe teething pains as his upper right molar was trying to bust through the gums. Then someone mentioned a possible 18 month growth spurt since he's right around that age. Made total sense to me as Ryan always seems to hit his spurts early. So I looked it up and and found that those with brain abnormalities have a much more intense reaction to this particular growth spurt. There is apparently a massive brain development at this time making things very uncomfortable and stressful for Ryan. Slap on that nasty old molar and his 4 canine's also rearing their ugly heads and welllllll...things were horrifically awful for my poor babe. He would scream, sob and squirm constantly throughout the day. Tears would stream down his cheeks.

I couldn't handle seeing him hurting so badly so I took him to the ER this past weekend. They took some x-rays and ultrasound of his lungs, liver, pancreas, kidneys, gall bladder, bladder, bowels etc...basically everything! It all looked fine (so good to hear that everything internal is working for him). They did however discover a tiny bit of poop back up and prescribed him a little something to help. Well it does seem to be helping him, however his clothes, diapers and blankets are suffering the is my washing machine!!! He's also getting Advil for his teeth as Tylenol just wasn't cutting it. He's also still getting his iron, thyroid and antiepileptic meds. Given everything he's taking I decided to wean him off his melatonin and he's doing pretty ok without it. He's never been a great sleeper (since his been on Vigabatrin) and I know melatonin doesn't KEEP you asleep it just helps you FALL asleep which has never really been an issue (knock on wood!). It would be great to get him off the iron too as it's turned his teeth into an awful grey colour which you can sort of see in the above pictures. But obviously the supplement is essential to his health so who cares about a few stained teeth (well...ALL his stained teeth)! He'll be going for his routine thyroid blood work in another month or so so I'll have the pediatrician include an iron check as well.

So for the last few days I'd say Ryan's discomfort has improved...hard to say if it's the Advil, the fact that his molar finally popped through a bit or because he's pooping more! Right now I don't care about the reason I'm just happy that he's feeling a bit better!
Now we just have to hope that he stays healthy as next week he goes for his ear tube surgery at Mac. We're so anxious to see if the tubes will improve his hearing and if it does, will he begin to babble?!?! How we crave hearing his sweet little voice make new noises. I do think he's been trying to make new sounds and I can only hope that the tubes will allow him to build on that!

Now for the GOOD, GREAT and MIND BLOWING fantastic news!!! On Monday, March 26th around 4:00pm, Ryan got himself up into a sitting position from the floor!!! It was a HUGE feat for him physically and cognitively! My Mom was just about to leave after watching Quin for me while I had Ryan at the dentist (to check his swollen gums and teeth stains)...I was watching him from the kitchen doing his rocking back and forth in his semi-crawling position. All of a sudden he sat back on his heels a bit, started to twist his body and wiggle his legs around...then in the slowest of all motions he kept twisting and getting higher and higher!!! All I remember saying is, "oh my god, oh my god" as I rushed over to give him the tiniest bit of support so he didn't topple over on his face but he did ALL the work himself! It was by far one of these most amazing and surreal things I have ever witnessed!!! I'm so glad my Mom was there to experience it with me! We cried and laughed and cried some more! Poor guy though I was so excited and proud that I scooped him up a little too quick as I was squealing and therefore gave him quite a scare...his little lip came out and he sniffled a bit but was ok after some extreme lovin'! My goodness even just typing about it makes me get goosebumps all over again! He's our little fighter for sure and is seeking revenge on those that say "he will never..."!!!

Friday, 16 March 2012

Finally an update!

To those following this tiny little blog I'm so sorry for not posting anything in over a month. Between therapy, doctor and hospital appointments...illness's, little one's not sleeping well (at night and naptime) and seizure worries...I'm just plain tired and stressed out. Basically I get up do my insane running around and dealing with the daily events and then fall into bed Googling this or that that relates to Ryan stuff (which ultimately results in a fairly crappy sleep)!

Since my last post, Ryan has been to the ENT at MacMaster. At this appointment he had an extreme amount of wax vacuumed out of his tiny little ear (just his right one). He actually clogged the vacuum twice...I know gross eh? not too mention probably very uncomfortable for Ryan! The doctor then told me that Ryan still has fluid in his ears. It's been an on going problem but usually only when he gets sick. This time he was healthy and the fluid is still there. Based on the fluid and some tests the had been run in the past by a different doctor it has been determined that Ryan has mild to moderate hearing loss. Given that he is already low vision you can imagine how he must be feeling and functioning (amongst other issues). The doctor feels that once the fluid is drained with tubes his hearing and possibly his speech SHOULD pick up (at this point - 17 months of age - Ryan does not babble). I was told that there is a 6 month wait list for ear tube surgery. I basically looked at the doctor like he was crazy and told him that is not acceptable given the circumstances to which he agreed and said he'd try to bump him up the list.

Along with being told Ryan has mild to moderate hearing loss we also learned that his vision has also taken a blow. We knew that by choosing the drug Vigabatrin to control and treat his Infantile Spasms we would run the risk of damaging his retina's. It's one of the main and more serious side effects of the anti-convulsant. When he had his ERG done at Sick Kids we were told that his retina's had remained stable. What a relief we felt! However, in mid February we received a letter telling us something completely different. It seems Ryan has suffered some damage but we don't know exactly how much or what it means. He has an appointment with his regular ophthamologist on March 20th at Mac so we will be discussing this further. One thing we are still sticking to is the obvious...saving his brain is more important than saving his eyes so keeping him on Vigabatrin will more than likely continue until he is about 2 years old.

A few weeks later Ryan's "emergency" EEG appointment had finally arrived. Oh my, the stress leading up to this test really can't be described in words. It was a sleep deprived EEG so you'd think Ryan would fall asleep as soon as he was given the, not this fella. He's not big into sleep anyway (thanks to Vigabatrin) but put him in a strange room in a physically uncomfortable situation and it's even worse. He did eventually sleep for 30 minutes in my arms but that wasn't without a whole lot of swaying, bouncing, rocking and patting...all of which I wasn't even allowed to do! The technician told me to keep myself and him as still as possible during the test...REALLY!?!?! She realized she had no choice but to let me do my thing, so as I'm giving Ryan some of my best tricks to get him to relax she had to type in everything I did on the computer so it would match up with what she was seeing on her computer screen. Finally he slept. So there we sat, me with my arms and back burning with fire (we've all been there eh?), Jeff sitting off to the side watching and wishing he could make this all just go away and the tech quietly chatting away with me while once again I sat there with my eyes burning a whole in the monitor watching Ryan's brain waves either staying nice and constant or suddenly spiking in mountainous waves. Jeff kept giving me the eye trying to get me to stop "reading" the monitor but those who have been through something like this know that it's impossible to tear your eyes away from it!

The next day the neurologist's nurse called (after I left a slightly frantic message to call me asap), she had great news! His EEG wasn't showing any new activity and the activity at the back of his brain from his September EEG has actually improved! We don't know how much or what that means because God forbid we should be given more information than that but the good news is that this EEG looked better than the last one. I don't like being wrong...ever...haha...but in this case holy smokes was I ever happy to be wrong! I' m still not entirely convinced that there isn't anything going on but at least we have some small comfort that there is no new activity creeping up on him!

When the EEG was completed the day before we popped into his eye doctor on the same floor to see if they had yet received his ERG report from Sick Kids...they had not. His neurologist apparently does have a copy so I'm hoping that through some more phone calls they will be given the report by the time our appointment arrives. After popping in there we headed down one floor to the ENT clinic to see if they had any news about Ryan's tube surgery. They had nothing to tell me other than he had not been put on their "urgent" list...WHAT!?!?!? Are you kidding me! I gave them a brief breakdown on Ryan and my conversation with the doctor. They assured me they would speak with the doctor and get back to me. The very next day we got the call that Ryan's surgery date had been book and will be happening just a few weeks from now!!! Dang I love when things go well!