Nicky's wheelchair =)

While here is a few pics of the wheelchair Nicky is getting LOL no it's not going to be pink, though I teased him and said it was going to be and we were going to put barbie pics all over it, but he picked out Opal Blue....same color as our car actually!

He did an awesome job, they put him in the trial wheelchair and took the sides off and asked him to move it if he could, he TOOK OFF! He has NEVER EVER used a wheelchair before and you would never know, he went forwards, backwards, around objects, and even tried to play bumper cars with Matthew who was playing on one of the ride on cars. =) It was AMAZING! He was so thrilled and loved having the freedom to get around on his own, sadly though we had to tell him he couldn't take it home with him and he wasn't too impressed with us about that. Hopefully his will be in soon though because he has all these plans for it, he told me when we get it he wants to go for a walk, go to the mall, go on the bus, go to the playground, and play with his friends!

This is going to be a wonderful summer, he will finally have some more freedom and will be able to get around all by himself LOL he's even told me that *MAYBE* he will let mommy and daddy push him...but just maybe because he wants to do it all himself.

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?

The roller coaster

It has been up and down here lately. Joey was taken by ambulance to the hospital the other night, it was scary! I stayed up late, too late, but I'm glad I did or I would have never heard him since our rooms aren't attached. At about 3am I could hear banging coming from his room and heard him make a little noise, it was only one noise but the banging continued so I rushed upstairs thinking he woke up and was playing. I got up there and noticed his light was still off so I KNEW something wasn't right, I turned the light on and walked in and he was seizing, he was laying against the wall and he was hitting his head off of it! I ran over to him and he was foaming (for lack of better word) at the month, his pupils were massive (not responding to light), and was completely unresponsive. I ran down and got his monitor so I could check his blood sugar (thinking it was too high) by the time I got back up he was no longer seizing. I checked his sugars and it said 1.3, so I did it again thinking it was wrong and it came out as 1.6, I woke Mike up and phoned 911, we couldn't get anything into him to treat him. By the time the ambulance got here he was very violent and agitated, it took FOUR OF US to hold him down so they could get a sugar reading (they had to do it twice) and again so they could give him a shot of glucagon.

They got him packed up to go to the hospital and I rode with him while Mike stayed home with Nicky and Matthew, he fought the whole way there freaking out. At a few points he fought so hard he had the straps around his neck!!! When we got to the hospital they were just about to put him into a curtain when he started scream and freaking out even worse "I CAN'T SEE, I CAN'T SEE. WHAT'S WRONG WITH ME I CAN'T SEE" the doctor (who was standing beside us) yelled for them to phone CT and get him in NOW. He wanted to sedate him right then and there but the nurses argued that they could start the IV without it (the IV sedation was less potent and had less side effects then the needle he was trying to give) it took two tries but they got it, but it was taking too long and he was freaking out horribly so the doctor ran over and gave him the shot.

We immediately ran too CT, the doctor yelled at them the whole way there, they had a sedated child and the nurses did NOT hook him to the monitor or have O2 ready for him. It was under the bed and the nurse wasn't even sure if it was full. The doctor LOST IT on them! We got to CT and the tech was MIA, he was pissed, they just phoned and he said he was there . They finally got it done and the doctor told me it looked fine but he would check it out more indepth on his computer. It ended up being fine, the temporary vision loss and severe head ache he had was from the seizure he figured....and banging his head off the wall. He went until noon before he had a normal reading and we were discharged at that point.

I hope to God we NEVER have to go through that again!

Now on to the next, Matthew has been getting blue lips and tongue, and not like the old spells that were "fine", he'll be playing or overactive and his lips will go blue, took a bit before we noticed his tongue was too (which is new, only happened once before but they figured it was because he was later dxed with pneumonia). We now have to wait for the doctor's office to get back to us with an appointment...hopefully they will get him in fast and hopefully we will be told he is fine! He is our only "healthy" child, it would be devistaing to find out there is something wrong with him too (beside the minor things that aren't harmful).

Nicholas is doing great though, he is having so much fun in our new huge yard, he also has a new little friend that lives right next door and he is very very excited about going back to school shortly. =)

Please keep the boys in your thoughts and prayers, thank you!

long winded update

It's been busy here lately, very busy, Nicholas had his eye surgery and everything went smoothly =) and by his surgeon he is the only child she's ever had that didn't end up with some kind of infection post-op. His eyes look great! She was telling us he would most likely need a second surgery because his eyes were starting to pull upwards and this surgery would not fix it, but guess what? His eyes since surgery have not pulled upwards at all so by the looks of things he will NOT need a second surgery *yippee*

Now for the downside (why does there always seem to be one?) Nicky had his feeding study, he didn't aspirate during it BUT came close and is pooling a lot of fluid in the back of his throat, even though he didn't aspirate during it she figures that when he's ill he does since he has extra problems with being "noisy" when he's sick. Now if that wasn't enough his test results are all in, he is slightly Vit K deficient (Vit K is needed for some clotting factors) which does explain the bruising he was getting. He also has that thalassemia trait, which confirms the diagnosis of thalassemia in myself in a round about way, my neurologist brought up the possibility when I was pregnant with Matthew because of my constant low hemoglobin for no known reason (doctors never checked for thalassemia because it doesn't fit with my ethnic background). Nicholas has the "cis" type, meaning he got both genes on one chromosome, since DH has no thalassemia genes it means they had to of come from me and because my hemoglobin is very low they put two and two together without having to stick me any more times to come up with me having it (I have three defective genes, one from one parent and two from the other). On top of that, yes there is more, he is also showing a higher then normal but not screaming "somethings wrong" level of fetal hemoglobin, more then likely HPFH but we wont know for sure until more tests are done later. His doctor just wants to watch it for now, he says it's higher then expected and higher then he's seen before but not high enough to warrant more tests just yet.

We have also moved, we are in the PMQ's now, it is so nice to actually have room! We got a 3bdrm townhouse and it is CHEAP, we are paying less here then we were for a small 2bdrm apartment! The kids have loads of room to run and pay and there is a playground within spitting distance of our unit. Mike's CT is going through so they ended up scrapping tour on him, they gave him a choice "go on tour or take the transfer" while tour pay is awesome but in the long run the CT is going to give us more money. Mike also finally gets his wish and he will soon be Air Force =) I am so happy and proud of him!

Both the other boys are doing great, Joey did have an issue with his A1C thanks to his old school but it is coming down nicely (2.4% drop in a month!), he also finally has his IPRC and IEP and is identified at the board level which means no more yearly testing that goes no where. He will be starting a special program next year and it doesn't matter where we go every school has to honor this because of him being identified at the top level. Hopefully this will mean we see huge improvements at school not only in his work but overall, especially in his stress level, we are hoping he will start to really enjoy going to school again and not be so frustrated with it all.

=) while I will update again when I have time. Nicky has a few more appointments to go, he has the sleep study and he's been referred to the breathing clinic so hopefully his treatment will all start to come together now and he'll be a lot healthier from it.

Good Thursday Morning lol

Not too sure how "good" it is but it could be worse right? lol

Matthew has been ill since Feb. 9th after three weeks of pneumonia (which I'm sure is still there) he has now come down with a brutal intestinal bug that is going around resulting in fevers over 105f =( Nicky just started to come down with the fever last night and Mike is starting to feel ill too (I have been for just over a week now). So far Joey doesn't have it *knock on wood* but it's looking like a not so great start to March break!! My surgery went well, the recovery not so well, long story but I guess we'll just have to wait and see how things go over the next few months lol

Nicky is going to start having his legs taped in an effort to lengthen his muscles, he had the test patch put on his back on Tuesday and it was not suppose to come off until tomorrow BUT Joey seen it and PULLED IT OFF and asks me what it was lol I'll have to talk to the therapist while she's in tomorrow and I'm betting they are going to have to start the test patch all over again! He is also finally being booked for his eye surgery, goes to the ENT the beginning of June (to get the sleep study booked), and will be heading to the feeding clinic shortly too to be assessed by them and be booked for his feeding study. I am so glad that the ball is starting to roll on all of that it's been a long time in waiting! He was also sent in for blood work to rule out a bleeding disorder and has been take off two of his meds (Naproxin and Advil, for pain, spasms, and migraines) because he was getting horrible unexplainable bruises (mainly on his forehead, he was black and blue from one side to the other....he tends to sleep on his forehead with his butt in the air so it was from the pressure on his head). The doctor, like us, feel it's because he's on so many meds that have side effects of easy bruising/bleeding so we agreed he should not be on any of the ones that aren't being used for something serious (ie none of his meds for his lungs we can give up). So far so good, I had taken him off the Naproxin and Advil on the Thursday before we went in as a precaution and since he's been off them for two weeks now he's had few new bruises and none as bad as the earlier ones. We are still waiting for the labs to come back though but so far it does look like we were right and it's just from the meds. He is being sent to a Neurologist to find better ways to take care of the pain and spasms and hopefully they'll be fast getting him in and see him before the spasms start to get bad again!

Mike's been given "maybe" dates for is work-up training lol now they are telling him he should be leaving the endish of April BUT we all know how they like to change their minds so I'm not holding my breath over it! Since we still don't have solid dates, and we are so use to him being pulled off tour, we haven't sat the kids down for the nice long "talk" yet. Hopefully soon they will give him solid dates so we can start preparing the boys for him to leave, that should be "fun", but I'm sure we can find lots of fun ways to keep them busy so time flies for them!

-Liz

ACK!

haha so I'm booked for surgery on March 4th (oh yippee!) not only did I severe the nerve BUT I nicked the tendon but because the doctor at emerg didn't even think of this possibility it was not splinted and I was not told to keep it still. So with my moving it the surgeon said I made the little "nick" into either a complete severe or close enough to it, because of my need to constantly be lifting Nicky he gave me two choices #1 Leave it alone, deal with the loss of feeling and limited mobility/loss of function or #2 have surgery to fix it, be in a brace for 6-8wks and deal with physio until the strength is built back up and not be able to use my hand (lift Nicky or Matthew with that hand) for MONTHS! So I picked surgery, at the very worst if the healing or surgery doesn't go as planned, because surgery is not 100% guarantied to work, I will have the same result as doing nothing so might as while give surgery a shot at least right? My IL's are taking time off work to help me out with the boys during and after surgery since Mike is going to be away on a major EX up north....way way up north lol talk about great timing eh? but with their help I will have the first few weeks of healing covered and hopeful obtain the BEST results from surgery.

Matthew is terribly ill right now, which makes everything so much worse, we have no clue what is wrong with him. He started off Monday with a fever, Tuesday with fever, vomiting/diarrhea, and a nasty rash and very itchy around the mouth, Wednesday Mike booked an appointment with the nurse at the doctors office and we took him in, of course I get there and he has no fever so she though he was turning the corner, she did send away a swab for Strep since she couldn't get a good look at his throat but nothing looked out of the ordinary. Thursday it all went down hill fast, he woke up with a temp ranging between 102.5-103.5 and by the afternoon it was 104 and nothing was bringing it down and he was not wanting to eat or drink and looked really really bad. We ended up taking him to the ER to get checked out and they did not like it either, the did a cath to get urine and blood work, his urine came up with glucose and blood so it scared the crap out of us since Joey is diabetic. Thankfully his blood came back with normal glucose levels BUT it also came back completely normal for everything else too, so they sent it and the urine off to be cultured. They ended up sending us home since we got the fever to break and finally got a wet diaper out of him but were told to go back Saturday if he still had a fever and the results from the cultures would be back so they would know if anything was up there. While Friday morning he seemed to be perking up, he was finally moving about and ate a cookie, not the healthiest thing in the world but at least it was something, his fever was also controllable and lower. While fast forward to 9:30pm, fever is climbing and not dropping with tylenol or advil, and he looks like crap again and is hardly drinking....so we are definitely heading back to the ER in the morning! I have dealt with a ton of sickness before, horrible infections with Nicky, and believe me he looks worse then Nicky ever has, I have NEVER had an illness scare me so much he looks REALLY REALLY BAD! Please say a little pray for him and hope they figure out what it is and that he gets better very fast, he has never been this sick before and it's just breaking our hearts to see him like this. Please also pray that he doesn't end up with whooping cough, he has ended up with the flu really bad all four times he was suppose to get the last shot for it so he's not fully vaccinated and while we were at the ER a lady had all three of her kids in to be checked out, her youngest kept coming over and getting in Matthews face and when the doctor finally came out to see her again she confirmed that they all had whooping cough!!!! They said it would be a "slim chance" he would get it but because he's already sick that slim chance is a bit higher. Whooping cough is the last thing we need in this house!!! Because her kids had their shots up to date (or so she says) the resident didn't put them in the lock down room thinking they most likely had pneumonia so about 15 families were exposed to it while waiting to be seen or discharged. NOT FUN!

On the upside Nicky is doing great, he has never been better, he has learned to climb onto things so he's been perfecting climbing on anything he thinks can be climbed onto lol His school is very happy with him and he has not been sick for the longest stretch yet...so lets hope he doesn't get whatever Matthew has!

While I will let you know how our trip to the ER turns out tomorrow when we get back, that is if they don't admit him, Mike has all next week off lol his B-Day gift to himself so at least someone will be here to get the other two ready for school and watch them until Matthew is feeling better.

-Liz

February 7th

While Mike is in the field this weekend and we have all been bored out of our minds lol No car and since the stroller is still broken (THANKS MIKE!!) we haven't been running around too much, we did go to the mall Friday night and that was horrible! Every time I turned around the wheel was coming off, not to mention all of the boys were in a mood lol basically grabbed milk and tried to run home asap. By the looks of things though my appointment with plastics is not going to be a pleasant one on Monday, my finger is even worse, painful pins and needles and parts of it are still completely numb. There has been no real improvement except for the swelling going down a bit and getting feeling back below the cut (lost feeling there from the swelling not the cut). Everyone is laughing but agreeing that surgery is most likely in my future, the laughing they may try to stifle but come on people....I cut my finger I didn't lose my hearing!!! lmao I know you are laughing at me, heck I'm still laughing at me! All I can say about now is this year is going to be ummm....interesting???!? Just wish I could use it, it's a PITA, it's been doing nothing but getting in my way I'll grab at something and bend it backwards, sure the finger itself doesn't hurt but I can still feel it trying to rip away from my hand and THAT hurts lol It's either that or like when I am typing, I *think* I'm hitting the keys with it because my mind for a second forgets it's not working and I'll look up and every letter my mind thought I hit with it are missing so I have to go back and fix everything. I wont even get into getting the kids dressed, carrying the babies around, or trying to put bottle bags in the bottles HAHAHA lets just say I've been having a ton of fun the past few days....thank goodness Joey is old enough to help out or I would be screwed! Never realized how hard coat zippers are to do up when you can't grab the coat properly. Okay I'm done my *poor me* post lol guess I'll just have to stop whining and learn to deal with it, I sure am the smartest person alive....next time I will at least make sure I do a better job at trying to take my finger off haha

-Liz

Nicky's big milestone

Nicky has been asking since getting home tonight to USE THE POTTY!!!!! First time he sat on it he sat there for 10mins and didn't manage to go but while I was getting dinner ready he said he "had to go" but since I was dumping a pot of hot water I wasn't in a position to run and put him on. Mike finally went over after I called for him, about 2 minutes later, and put him on he actually HELD IT until he put him on the potty and for the first time he went pee-pee on the potty! He is so proud of himself and is really into wanting to use it, I am so happy, I thought for sure he wouldn't be ready for at least another few months to a year since he's had no interest and quite a fear of the potty. His school is doing an awesome job without even knowing it lol he sees all the other big kids using the potty and he wants to be just like them =) Now Nicky has even got Matthew thinking it's cool lol as soon as he seen us making a big deal about Nicky going he started trying to strip his diaper off and wanted to sit on it too lol Looks like we might have an easy time potty training Matthew if he keeps wanting to do exactly like his brother! So far because of wanting to do what they do he uses a spoon/baby fork to eat and drinks from a cup....a CUP....not a sipping cup a big peoples cup! If he's thirsty now and someone has their cup down he'll go over and grab it and take a drink, he's still pretty messy but he will take a cup over the bottle any day. Matthew is progressing so fast because of his brothers and it's amazing to watch him try to grow up faster then we would like lmao He's not going to be our little baby much longer if he keeps this up!

hahaha and of course on the down side I put a knife through my finger today and have to see a plastic surgeon, I've either nicked the nerve or severed it, the doctor at the ER said if it's nicked I will have feeling back in it by the time I see the plastic surgeon next week, if not I will have to have surgery to repair it. BOOO! But OMG I have NEVER seen a finger bleed so bad in my life, it looks like someone was murdered in our place there is blood EVERYWHERE! I felt so ill by the time I got it to stop, every time my blood pulsed through my finger it went shooting two inches high in the air. I lost about as much as I would have if I would have donated blood.....what a waste! But with my hemoglobin extremely low the blood lose has hit me hard, I have the chills and feel faint, the exact same symptoms I had last time I donated blood. This week has really been a horrible one for us, between me knifing myself and our car endlessly breaking down and getting into accidents (City of Toronto snow plow took our mirror off and a guy cut Mike off today and landed him in a snow bank for 45mins lol). I can't wait until some good luck starts rolling our way, if it doesn't soon this is going to be another really really long year!

-Liz

Pics of the boys

Joey and Matthew Christmas Morning















Nicky Christmas morning at Grandma and Grandpa's





















Matthew 9 months 5 days.
Christmas stop to auntie Lori's









My Pooh Bear and Tigger lol
Christmas Morning

the good and the bad.

A new year but the same old same old. I will start with the biggest
and best news....On January 18th at 11pm Matthew WALKED! =) yep we
have a walker, he is exactly 4 days shy of 10 months old, our youngest
walker yet and a HUGE shock! We actually MISSED his first steps, Mike
and I were talking and he was standing at the couch and the next thing
we know he's standing at the exersaucer and we were both looking at
him going "did he just walk?". So I put him back a few feet and
cheered him on and he did it again, he walked halfway there and then
plopped down on his butt and crawled the rest of the way lol After
another hour of walking around he passed out he loves this new skill!

now for the not so good.

Nicholas has a new specialist and it turned out to be a mixed
blessing, his old ped from the asthma clinic is off on Mat leave and
the lady taking over is a respiratory specialist from Sick Kids
Hospital. After reviewing his history and doing her check up the poor
lady almost lost it, his "normal" day-snoring that we have been told
SINCE BIRTH is normal is "Absolutely NOT normal and very far from it"
and she is almost 100% certain that he is having micro-collapses in
his lungs while he is sleeping. He is being booked for a sleep study
and a feeding study asap, but even as an emergency she said it would
take SIX MONTHS to get it done! She said her biggest concern in
micro-collapses but it could be one of two things or both, he is
either having the micro-collapses, having food and liquid entering his
lungs while eating/drinking, or both and is determined to find a cause
for his repeat infections and severe asthma attacks before she leaves
at the end of the year. She changed his meds up a bit and we go back
in 2months to see how they are working and to see if he's been sick
again. So so far this year he will be having two surgeries, a sleep
study, and a feeding study it is looking to be another very very busy
year!

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!

Easter Seal Cruise

yes the pics are finally in lol sorry it took so long but the Mac was in for repairs so I couldn't transfer them.

Nicholas having the time of his life and Daddy.




Joey and the nice man who took us out on the water, sadly we didn't get to take one with his wife/


-Liz

website

For those of you who wish to join, I have created a board to compile all our information on therapies and cerebral palsy...and UGH I just spilled coffee on my keyboard! lol anyway you can fine it here CP Support feel free to sign up and add to it if you wish, I have added the therapies and things I have found so far but it is far from complete. Right now you do not have to join to see the board but you do to post, once I give the info though to my CP support group and others start joining I will put it to a vote to lock it down (or some of it anyway like meet and greet). Hope you all enjoy it, if you have any questions, suggestion, or anything feel free to e-mail me (needs_sum_sleep@hotmail.com), comment on my blog, or on the site.

-Liz


OOPS, I'm a moron LOL accidentally deleted the post from the 20th so I'll tack it onto here..


We have been through so much here the last little while my head has been spinning. Nicholas needs to be circumcised (or at least partially) but since they have him stable now and he's able to pee without that many issues they are going to try to hold off a bit....because he needs to have his eyes operated on ASAP! We had our appointment last Friday with the eye clinic, it had been two weeks since the last due to her wanting to review the CT and crap, in two weeks his eyes have gotten really bad. His script has changed so much that he needs treatment asap which includes straightening his eyes and glasses for the vision problems. We also got the full report from his CT scan (copy of it) and after reading that I just wanted to puke. The damage is unbelievable, the whole time I was reading it I was thinking "this is the wrong report, they sent someone else's over by mistake" not only does he have severe white matter destruction and in one part minimal white matter he has a 1cm pineal cyst in his brain. We were told at 1.5cm it can cause obstructive hydrocephalus =( usually these are a common finding but are almost always under 0.5cm and asymptomatic, his is (like I said) 1cm and he is symptomatic. Thought the doctor at the emerg told us the CT showed "normal CP damage" and nothing to explain his head aches we've been told now that no the cyst is most likely the cause of his head aches because of how large it is. Usually these cysts stay stable and don't grow but if they do they grow slowly, his is growing pretty fast putting him at risk of it growing enough to block the flow of spinal fluid causing hydrocephalus. We are asking for an MRI so they can get a clearer picture of it because of a "nice" family member deciding to be "helpful" and tell us that this is what her daughter was dxed with on her CT scan but when they did an MRI 6months later to check to make sure it hadn't grown they switched the dx from pineal cyst to pineocytoma. She also had to throw in that her nuerosurgeon told them that it wasn't uncommon for them to confuse the two UGH all I could say was THANK YOU! Like I really needed to have something else to be worried about but we figure getting an MRI will at least confirm the dx and put our minds at ease and will let us know if it has grown or not. Nicholas goes back to the eye clinic at the end of the month to have his eyes looked at again, this time without drops, because she wants to get a clearer picture of the alignment of them.

On the upside we went on the Easter Seals Cruise on Sunday with Nicholas and Joey (Matthew stayed with the IL's) and we had a blast. We thought for sure Nicholas would lose it because of his phobia of water but he LOVED IT! He kept wanting to look over the side of the boat to watch the waves lol Joey was the one who ended up losing it, as soon as they opened the sails and the boat tipped sideways he freaked. He wanted to go on the boat so badly too, he thought it was great because it was his birthday and he thought it was part of his present lol We ended up on a boat with just us, the couple that took us out were wonderful, Nicholas and Joey feel in love with them and at the end when Mike handed him off to the lady while he got off Nicholas gave her a big hug and lots of snuggles and said thank you to her. It was so cute and she was so taken by him that she kept joking she wanted to take him home with her, they were very surprised at how well behaved our boys were (especially Nicholas) Joey helped put the sails out and got to steer the boat for a bit and Nicholas sat back and enjoyed the cruise without making a peep. He loved the wind in his face and was nothing but smiles the whole time we were out.

lol photobucket is down for maintenance right now so I will have to post the picture later on today.

-Liz

July 23rd update

Tomorrow (lol well actually later today) we get hit with a double appointment lol since Nicholas soaked my old phone in chocolate milk and it's out for repairs I lost my date book with all the appointments on it. NICU follow up always phones and reminds you of your appointment the day before hand so I figured I would just wait for that call instead of playing phone tag (they are hard to get a hold of and NEVER leave msgs answering your questions lol). That kind of back fired, they phoned today his appointment is tomorrow at 10:30am, OT is tomorrow at noon, so it better be very fast so we make it to the other appointment on time. The good news is this is his discharge from NICU follow up clinic appointment =) yep my little man is now NICU alumni and will get to take part in the alumni picnics and stuff from now on. We are so very very happy, it has been a long road but we get to close one chapter in our lives now, we are THRILLED! Below is a slide show of pics from birth to now so you can all see how he's grown!

Happy Hump Day! (as in hump the dog and get nothing done lol)

what a tiring day! =) of course we spent most of it at the mall lol Nicholas just loves riding the bus and going to look at the books at Coles. He picked out dinner for us and then when we got home he passed out and I haven't been able to wake him up to eat it, I'm sure he'll get up at midnight claiming he's hungry! It is way too quiet in here right now, Joey is gone to his grandparents for the rest of the summer and both boys are sleeping really good right now. I have no idea what to do with myself any more, guess I'll start cleaning out and reorganizing the closets and kitchen or something. DH is suppose to be coming home this weekend and Nicholas is very excited, it seems to be a toss in between excitement for daddy and excitement because the Ontario Federation for Cerebral Palsy is handing out toys this weekend to CP kids! He gets FIVE toys for free because Brett Carleton and his family donated a crap load of toys to them to hand out. So a huge R.O.A.R to Brett and his family, they are wonderful people in my books! So if you know anyone who lives near Toronto who's child has CP tell them to print out this flier http://www.ofcp.on.ca/pdf/toy_flyer.pdf and get their butts over to get their toys this Friday or Saturday!

Well better get off my butt and do something, don't want people to think all I ever do is hump the dog and get nothing done around here lol Just got to dig out my super mom costume first and get started =P joking!!!
-Liz

(BTW ROAR means round of applause and recognition)

DENIED!

lol Okay Gerber Life was/is giving out child safety kits but only if you ask for a quote, so I flew through it filling out the info to obtain my quote. I just received my letters in the mail today, Joey (DS1) who is diabetes was denied which I knew he would be, Nicholas (DS2) who of course is my CP boy was also denied, Matthew (DS3) who is PERFECTLY HEALTHY.....DENIED! The last two I don't understand, sure Nicholas has CP but it's spastic diplegia, mainly effects his legs, so what he wont walk normally and may not walk without a walker but does this shorten his life span? NO. Does it effect his ability to get a job? Well maybe, sure he wont walk a rope in the circus and most likely wont win a marathon, but he will grow up and get a job! Maybe it's because he wont be normal cognitively? HELL NO! He is way beyond his age in all aspects there, he's the only 25month old I have met so far that can carry on an adult conversation, count forwards and backwards from 10 and can read some simple sight words. So ummmm let me get this straight he is denied because he can't walk properly? hmmm doesn't sound fair in my books! Then there is Matthew, a perfectly healthy and normal baby, why is he denied? I guess CP is contagious? or is it because instead of having a 3% chance of getting type 1 diabetes he has a 10% greater chance of getting it? yeah that is fair, because he only has a 87% chance of staying healthy he can't be insured lmao so then why is it they don't do a lengthy background check on all children? I mean Joey DID have GL insurance when he was a baby (which I now regret letting go of) but when he was accepted they didn't ask if he had an increased risk of getting cancer, diabetes, heart disease, or anything else. So again why are they denying a perfectly healthy child?

Gerber Life: We insure those who we know will never get sick and need our money!

-Liz

PS: Those child safety kits? We got NONE, turns out they must not deny you to be able to get a freebie so so much for there "ask for a quote and get one" this company really just is a "waste of space".

Nicholas was so sore yesterday and hasn't been sleeping much tonight, which is why I'm still up, his muscles keep locking up and going into horrible spasms. =( We've tried advil, massage and even heat and nothing is helping. He wants nothing more then to be able to go in his walker or even crawl and he hasn't been able to do either, as soon as he moves his legs or I move them he takes a fit. He has not been this miserable in a very very long time and the pain is off the chart! We also found out that they aren't cutting Mike loose to go to the funeral today which really broke my heart in more ways then one. Nicholas has been crying for him all day today, he keeps saying "daddy make it better" and it just makes me want to cry. We have another 20days before he's done teaching and can come home we just don't know for how long yet it seems like every day they are telling him something new so we don't know if he'll be teaching the next course, heading for workup training or come home for a while. Some times the Army annoys me to no end, but I guess there is nothing we can really do about it just have to "suck it up and soldier on" or so I've been told before anyway lol I think we are going to head to the ROM today or somewhere else that is fun to try to take his mind off of things hopefully it works if not we will head over to the doctors and get something stronger for the pain and spasms. Well he's sleeping again so I better try to get some sleep now too or I might not get another chance to catch some z's

-Liz