hello world...we are still alive lol

It's been a really long past few months and thinks have been up, down, up, sideways, and down again. Nicholas has been sick almost constantly since starting school and I do mean constantly! He's been out of school more days than he has gone which is sad because he really loves it there, he has also missed most of the Friday swims, with being sick his asthma doctor does not want him in the pool until he goes two weeks attack free each time he has major attacks and he's had a lot of them! He just got over another bout of pneumonia, second time since October third since September, the one bout he had SEVENTEEN asthma attacks, and severe ones, in three days which meant a lot of in and out of the ER. They also had switched his meds to pediapred from the dexamethasone which was a HUGE disaster! He reacted so bad to the pediapred and I will never complain about the lack of sleep when he's on dex again not to mention a lot of his meds went out the window when he was on it. He was also diagnose with pediatric migraines and was on naproxen for 3 weeks straight to break the cycle, the pediapred was what put him over and made them finally look into controlling his head aches. Within two doses of pediapred he was grabbing his head screaming in tears because it hurt so bad and the head ache lasted until the meds wore off but after that everything triggered them again from the sound of our voices to sun light. The head aches also but him into severe distress, every time he was in pain and screaming his heart rate would shoot very high, he would breath weird, and next thing you would know he would be into another severe asthma attack. we've been told now he can never ever go back on the pediapred again, it's not that far off of what dex is but there is something about it that his body just can't take.

On the upside he FINALLY has AFOs again, they are the hinged ones, but they wont be coming home from the school for a few more days, they want to be certain that they fit right and he is doing well in them (they have already been sent back once). We also had our sit down meeting with the school to go over our gaols and theirs and they are amazed at how well he is doing and how far he has come in the short time he has been there. He can now pull himself up to a stand without any help no matter how high the thing is he is grabbing a hold of, he stood for 5seconds without support before falling and his speech/language and academic skills are very shocking to them. He can now count to 18, knows his colors, says and sings his ABC's without missing a beat, is learning to sign at a very fast rate and has picked up some words in other languages from the other kids there!! They cannot believe how smart he is and how fast he picks everything up, seems like as soon as they show him something new he can do it like he's been doing it since the day he was born.

Now for the bad, even though his eyes have finally stabilized he will be going back in Febuary to have his eyes measured again and his sugery will be booked. There is no way around it his eyes are really really bad now, he will be having them done some time early next year and they are hopeful to restore his vision back to 20/20 after it is done. He will have to get glasses and work with the patch and drops after surgery and we've been told it'll take a while to get everything right again but that it will all be worth it and we and Nicky will be thrilled with the results. We did avoid the urological surgery by a hair, we went in finally for the meeting with the surgeon and for some reason he can't explain everything has healed up properly and even the scar tissue is gone. He said if it wasn't for the reports from his doctor and us he would have never guessed he ever had any problems with his plumbing! So at least we are down to two surgeries instead of the three we were told he would have (one for each eye, they do not do them at the same time). His spasms have also gotten far worse and we have been asked to get our family doctor to fill out the proper requests to send him to the specialist at Bloorview to look into Botox as a last ditched effort before sending him to the orthopedic surgeon to look into surgically releasing his muscles in his legs. It is now to the point that if you even tap the bottom of his feet he goes into horrible spasms that last upwards of 2-3 minutes and they are beyond painful for him. Hopefully he will qualify for the botox and hopefully our insurance will cover at least some of it because we've been warned that OHIP will most likely deny coverage for it. We are already horribly in debt from paying for equipment and his school (therapy) and adding this to it will only put us farther into debt, we will find a way to pay for it but we know it's going to hurt us in the pocket book!

I have started working again, only seasonal part time for now, but at least it's extra money and we can start to pay off our debt with it. We are hoping that the recruiting office gets it butt into gear and starts moving faster with his CT (component transfer) it will mean more money to go around and we'll be able to breath a huge sigh of relief once it goes through. The only down side is Mike will be gone for quite a while before we can all be together again, we aren't sure how long because they keep telling him something different each time he asks but we will be apart at least 8-12months according to them. It will be hard but it will also be well worth it in the end, we will have more money, DH will be finishing his University education, and he will have a job that he enjoys. =) we will also be moving into the Qs and will finally have a bigger place and hopefully room for all of Nicky's fancy equipment lol the only bad part about this is depending on the timing he may miss out on continuing at his school (the closest base he could be posted to is a 1.5hr trip one way). We have been debating, if we can handle a longer separation, us staying here until he enters public school, which we don;t know when that will be because if he's accepted to the schooling program at Bloorview after he's done at his current school he would be there until grade one. I guess we will just have to wait and see about that one, we both want the best of the best for him and if that means spending some additional time living apart I think we are going to go for it, depending where he is posted to! If he is posted within 4hrs of here we are just going to commuted back and forth on weekend to spend time together as a family but if he's posted outside of Ontario we would be trying really hard to find a program just like the one he will be in in that province...hopefully they will have one close by him!

Here are some picture of Nicky since that last time I posted and of Matthew and Joey, they have all grown so much!

-Liz

Nicky "coloring" lol too bad it wasn't on paper!


These are from Halloween =) My little Devil, Vampire, and Monkey lol







Church Parade (Regiments Remembrance Day Ceremony) Nicky's first horse ride =) he had a blast! I'll post more of these ones later Joey and Matthew also got to ride the horses lol They had so much fun it wasn't funny!