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

lovely day

Today (umm yesterday) was looooong lol first off I didn't get to bed until almost 6am and we had to be up at 10 to start getting down to business (fed, dressed, and packed up to go). We went up to the armories to pick up Mike's Blues for the funeral at about 1pm, which was the most boring part of the day, sat there for 45mins before we got a hold of Mike's friend to be let in to get it, then spent all of five minutes signing it out OOHHHH WOW so much fun lmao but at least it was air conditioned! After that it was off to Wal Mart to get Nicky his new shoes, since he still has no braces we needed to break down and get him something to wear, he ended up picking out Diego closed toe sandles only after trying on like 20 other pairs that he absolutely did not like. So we got to spend almost an hour picking them out and then almost 20mins in line waiting to be checked out, Wal Mart is NOT the place to go on a Sunday afternoon lol I swear everyone had the same idea we did "It's Sunday, it wont be busy" HAHAHA yeah right! By the time we were on our way over to the IL's it was 3:45pm and she started supper right away because we were all tired and hungry, the boys had a blast Nicholas was crawling around perfecting his crawling and played outside in his little car. Joey and his Aunt played catch, cards, and with her old devil sticks so they all kept pretty busy and had a lot of fun. Joey did seem to do a bit too much running around and even with the extra carbs ended up going LO, the funny part is that when I'm around I usually don't bring his glucagon kit with us but for some reason I grabbed it on the way out the door today so after a shot in the butt he was good to go after 15mins and didn't need another hospital trip like he had his last day of school. Nicholas also had some issues nearing the end of our visit, his muscles started to lock up really bad, you could see that they were rock hard and his legs were really sore so he got a nice long massage and some advil tonight so he's happy now. He was also a little piggy during dinner he ate as much lasagna as all the adults did and was STILL hungry so he ate again as soon as we got home. Matthew slept most of the day lol even though most of it he was feeding so I couldn't do much, so I am thankful my IL's spent all afternoon playing with the boys. They are so wiped out that they all fell asleep by 10:30pm and are still sleeping lol on the downside I am still wide awake for some reason I can not sleep at all tonight no matter how hard I try and we have to be up early again tomorrow...coffee will be my friend! Hopefully we'll find out tomorrow if Mike is coming home for sure or not, they still haven't made up their minds on if they can spare him for a day or not, I'm really hoping they do let him come home because he has our insurance card and I need it for Nicholas's dental appointment next week.

Anyhoo I should be going now and try to get some sleep....or at least finish cleaning up the house lol it's surprising how much of a mess those boys can make even when they spend almost the whole day out!

-Liz

OMG I'm RICH! hahahaha

OMG for the 8th time in the last 3 days, and the 17th in the last week I have either won a lottery or been gifted millions of dollars! What is a person to do?? Now I just have to rush out and take out a loan for $18,000 in total to be able to get my money. I can't forget to send off all that information they need, there is my SIN number, full name and married name, bank account numbers, list of my pass employers, my birth date, and of course for good measure so they can verify that I am who I really say I am my credit card number! Then WoW I'm a millionaire! LMFAO of course I'm just kidding but I'm really starting to wonder what my junk mail filters are for, I have them set to high and for months received NO junk mail....and now....well now I have to dig through 50 e-mails telling me I need to lose weight, 14 telling me where to get cheap drugs (lol like I need any?), about 12 e-mails for that god awful adult crap, and of course about 80 scams a week just to be able to read my 7-8 messages that I actually would like to read. GOD I LOVE HOTMAIL!

....now if only some of those "you are a millionaire" e-mails were actually true, that would solve a crapload of our problems!

Anyhoo it's 2:17am and I STILL can't sleep! Nicholas is wide awake sitting on the couch, he will NOT close his eyes at all. But HEY for once Joey and Matthew are sleeping....why can't they all be on the same schedule? Do they really think mommy can survive on no sleep? or do they really just like to laugh at me when I am so tired I can't even string a sentence together? I mean they really do seem to get a kick out of me when I say stuff like "put the fridge in the milk please" or "get your head back in your shoes before you step on some glass". Really who needs sleep anyway? it's overrated! lol guess I will go enjoy cleaning my house up since it doesn't look like I will hit bed any time soon.

-Liz

TGIF?

Well we had a great day lol of course it was spent at the mall and really who can't have a great day there? Not one cry for daddy until we got home, that is when Nicholas wanted to show daddy his toy forgetting he's not here right now. On the up and down side he should be home Tuesday (or late Monday night) Col Hunter, who is a retired member of DH's unit, passed away on the second and his funeral is on Tuesday. Mike's unit is trying to get him the day off to attend it which means Nicholas will get to show his daddy his toys, but of course I wish he was coming home for something other then a funeral KWIM? He was such a wonderful man, I've only met him a few times, but he was kind hearted and a real joy to talk to. He will be missed dearly by so many people and it was an honor to be able to meet him.

Colonel Peter W. Hunter,
May you be carried to Heaven on Angel's wings and welcomed by God's open arms.

Hello fellow CP mommy's! lol yes I have finally done it, I have actually started a blog....keeping up with it will be the true test though!

My boys are doing great, Nicholas and Matthew got a little knocked around at the Canada Day party though but believe me that is a LONG story! We did have a blast afterwards and Nicholas got to meet Will Mar (lead guitarist of illScarlet) and got an autographed CD from him =) he was THRILLED! Poor boy was so upset when I made him give it up so he could go to bed, but of course it was the first thing he wanted when he woke up and carried it everywhere today.
Joey had a dental appointment today so we went to the IL's for a bit, I was shocked though because it took the dentist less than 20mins to fill two teeth. After we were done we headed back over to my IL's and sadly, not even 10mins after getting there, we see a huge amount of smoke coming from the next street over and shortly afterwards heard the sirens of the fire trucks and cop cars. We aren't sure exactly how it started but when we got to the end of the street all you could see was a big ball of flames in the one backyard, the guys garage was burnt to the ground and two trees were damaged. THANK GOD it did not spread to any of the houses, his house was about 10' away from it and the neighbors house was about 5' away. We thought for sure it was going to spread but the fire fighters put it out almost as fast as it engulfed the garage, Joey and Nicholas got to wave at the fire trucks as they slowly left the scene. We ended up counting seven fire trucks, two supervisor vans, and eight cruisers which was quite a lot considering the fire wasn't that big but I guess since we've had several small fires turn into 3-4 alarm blazes they weren't taking any chances since the houses are all so close to each other.

Well I better get off Matthew woke up and wants to be fed lol well either that or he really likes my top!

-Liz