Sunday, March 07, 2010

Equipment Help ~Pretty Please~

LOL No really I am not trying to make up for almost 7months of neglect in one night, just not going to annoy you all with mounds of photos via e-mail. Nicky is getting fitted for his AFOs this week and while they are at it his OT and PT are ordering the equipment we'll need when he starts JK in September (lets hope they don't take as long to come in as the Kid Kart or we still wont see them until the end of this year/beginning of next year).

Anyway, I'm looking for input from my fellow CP mommy's as to which is the best wheelchair and walker, from everyone else feel free to say which ones you like best too. If you have better suggestions, please tell me what equipment you use, we though we did an awesome job when we picked out the Kid Kart but it turned into nothing but a big head ache. Keep in mind that the wheelchair have to have the transit option as he will be bused to school next year and can not be bused without the transit option. He also wants to be able to move it himself, he doesn't have the strength yet to use a walker full time. (sorry I lost my bookmarks lol I did have a few more wheelchairs in mind but I'm sure my CP mommy's wont let us down and will make sure we know which the better ones are!)

TIA
-Liz


Super Kid




TiLite



Kaye Walker




Crocodile



Gator

Last few months in one post.

LOL I will try to make it as short as possible without missing anything.

End Aug - Beginning Sept. = Matthew's blueness was again caused by pneumonia, he will looking fine when we brought him in (no fever etc.) but they did an x-ray to check for enlargement of the heart and found pneumonia. Got Nick and Joe ready for school to start and all of that fanciness, Joey's school is on a planet of their own (get into that later). Joey's school intends to push for the specialized school stating they can not handle his case, IPRC set for Nov.

End Sept - End Oct. = Nicky starts with nightly breathing issues, starts off as just a PITA, increased all meds to try to correct and started oral steroids to combat inflammation. Seen by the Complex Respiratory Care Clinic and Chest Clinic (same dang thing only Complex most of the kids have machines) given temp diagnosis of sleeping disorder caused by obstruction and ataxia and his chest x-ray clearly showed lower airway inflammatory lung disease.

Nov-Dec = Nov. 3rd, Nicky is playing with friends and turns blue from head to toe. Since he has just finished eating we assume he has refluxed and aspirated and needs to be checked out. We arrive at Sick Kids and they rule out pneumonia based on the fact his x-ray looked better compared to previous one in which he had pneumonia (we argued this because he had a CLEAN ONE a week and a half before) they did an ECG to rule out and issue with his heart and after 3hrs got the doctor to actually look at it. We seen it and we could clearly see problems with it but we were told it was "perfectly normal", the following day we phoned the Complex Respiratory Care Clinic and they reviewed the info they had and made a diagnosis of "possible H1N1" and started antivirals (Within days we are all assumed to have it). Two weeks later the head of emerg phones, I think to myself "wow never had a follow up call before" and was happy for a moment that someone cared a little more then usual.

I was in my own world thinking that because after him asking how he was doing and if he's had any more symptoms he brings our world down upon us yet again. "Nicky's heart is too fast, he needs to be seen by a Cardiologist asap" thank goodness I had the car pulled over or I might have hit something! He was referred off to Cardiology at Sick Kids (to Dr. Dipchand, head of the transplant team, THAT caused a heart attack for us) since that is where most of his doctor are but his ASAP appointment ended up being Dec 15 & 16th, he was suppose to get an ECG, holter, and that little hand held heart recorder (it has a technical term LOL just can't remember it at the moment).

Dec 15th ECG=Tachycardia (still, but it looks worse) instead of meeting with the doctor on the 16th like planned (after the holter was returned) they decided to wait until the holter readings were back and we had transmitted a few reading from the hand held device before she seen him. His appointment was rescheduled for Jan 15th, if enough data was collected. Holters are a fun experience LOL Matthew pulled the wires twice and Nicky pulled them once, he also spilled juice down himself and one of the things was "no getting wet"....very very fun night!

Joey's school informs me IPRC went "excellent" and they are modifying his program until he switched schools. (I could not be there since we still weren't clear of H1N1)

Jan. - Feb= We meet with Cardiology and get some pretty good news, though Nicky is suffering from Tachycardia his heart rate remains in the high normal - low, low/mod high rate. The rhythm, the most important part, even though it is faster then normal remains NORMAL, he does not require medication or a pacemaker, he will be discharged from Cardiology and will be followed closely by his team instead. She will see him back if it gets higher or he starts having a lot of full body blue spells, by her the blue spells he was having were caused by breathing issues not heart ones (mucus plug, something blocking the airway temporarily etc.).

Nicky is seen by his family doctor on Jan 28th, takes just a few seconds before he says "When are we fixing his eyes again?", they are that bad and his vision seems to be taking a beating this time. It is being recommended that he has surgery and uses glasses at least 2hrs a day to help keep the muscles from becoming weak. He goes back to the Eye Clinic on the 12th and surgery is suppose to be booked that day, we will let you know exactly when asap.

Nicky was assessed by Bloorview, first step in the long process to get him into their school program for next year, he did an awesome job and aced his first interview!!!!!

Joey's school admits to lying, we get the letter from IPRC and find out that they told them he is "just a little behind" and doesn't need a special school (mind you the report from his last school, dated in June '09, said that he is at a gr 1-3 level, no where near gr 6, don't see how he can go from severely behind to slightly behind in just a few months!) We are told we can not appeal this until APRIL, we also find out that Joey has been unable to take gym (as punishment) since school started and has received detention EVERY DAY since the beginning of school for something that doesn't even involve him (it involves ME and the school, not him). They caused two life threatening low blood sugars and needed to phone the ambulance twice, but still would not take responsibility for their own actions. (If you haven't guessed it he's switching school LOL getting sick of school playing pass the buck and neglecting to do their job!).

March- Of course we have eye clinic (for eye surgery) and upcoming surgical consults, they will soon be widening his airway, they intend to get rid of the pouch in this throat, tonsils, adenoids, and tissue from the back of his throat to make breathing easier. They are we are hopeful that this will also have some effect on the reflux and aspiration but we wont know for sure until after surgery (hopefully this summer before school since he will be down and out for up to a few weeks).

=P and yes I will start updating this more often, you people all complain to much about the e-mails and it's too much work to make sure I got you all LOL


Edit: LOL guess I forgot to add the most important stuff eh? Mike's CT finally went through as of Oct 26th 2009 he is now officially Air Force and an Officer =P mind you he still had people e-mailing him calling him MCpl until the middle of December lol We also moved to the other side into a 4bdrm Q (full house) it is huge and we have a huge yard now (front and back) that we don't have to share. Mike is doing his home study soon and is being posted for OJT (without us) and is off in Jan '10 for him big course. We wont be posted together again until after his course is done in Aug '10, so we are looking at a whole year without him =( We aren't telling the boys until it gets closer but hopefully his OJT is in Trenton or Borden so he can at least visit often. We have no clue how much time he will have off once he goes for the actual course but it's only a few hours away from home so either we can visit some weekends or he'll come home for a few. Our first choice for posting is still Comox, cross your finger and hope we get it, it would be a wonderful posting for all of us!

New Pics

Here ya go Dave, I know it was you who wrote that, the boob comment gives it away LOL Stop stalking my blog =P


Joey and his doodles.


Nicky's first swim since surgery, he loved it, too bad he'll miss out on a lot of the swimming this summer, his next surgery should be booked when we go in on the 12th and will most likely land in June so no swimming until Sept/Oct. More on that when I get around to the big update but I'm pretty sure you seen the e-mails anyway...if not you'll be updated soon.


Little Matthew isn't so little any more. LOL Not that he was really little to begin with eh? =)




Tuckered out, this was our first night at the camp ground, they stole my side of the bed!

Hi Everyone =)

Yes yes I know it's been a long long time, at least I remembered to e-mail most of you to keep you all up-to-date. For those who I neglected, sorry, I will get back to using here ASAP.....while I should say as soon as we know more about what is going on with Nicky, it has been a horrible and long few months, please be patient while I try to move our journal over to here. Please ignore the post above, it is meaningless to you all, unless of course you all find it as amusing as I do that I'm "fake" LOL and no comments from the peanut gallery please =P Sorry that all your comments have been removed, and please refrain from commenting on here for a bit, all you need is to be trolled too eh?