HAPPY BIRTHDAY!

Dear Bryce

What an amazing little boy you are. You have beaten all the odds. You are the best little boy I know! (You are fresh though!)

I love you very much and can't imagine my world with out you. Today you turn 2 years old. I can't believe it. On this day 2 years ago we were told you had less than a 5% chance of survival, or would be severely disabled. Boy you fooled them!

You are a very active, loving little boy and I could not have asked for a better son. I thank you for being such a great boy, and making me smile every day. (Except when you climb into the bay window and scare the crap out of me!) I love you more than words can express, we are so lucky to have you!

Happy Birthday buddy! We love you!

Love,
Mom, dad, Nicole, and Faythe

My rash... HELP!

Chronic Lyme Disease

Well after being sick for many, many years we have finally found what is wrong with me! I have Chronic Lyme Disease.

This is why I am deaf, this is why all the Bell's Palsys's its probably why Bryce was so early and Faythe and Nicole have had their issues. It explains ALLOT!

About a month ago I went to a Lyme Dr in Falmouth who did a Western Blot and confirmed CLD.

I have started treatment, it has been BRUTAL. I have just been out of bed for the first time in 3 weeks this past weekend! For right now I am on Biaxin and plaquenil for 4 months... We will then see how I am and go from there. My Dr tells me it can take 18-24 months to get better (remission) if ever. He says it will be a LONG, SICK, PAINFUL road but hopefully I will get better.... We'll see.

Anyway, Bryce is going in tomorrow for surgery on his ears again! The flu has ripped through this house lately, hopefully it will get the heck out of here soon!

RSV and scared....

Well we ended up back in the doctors today. Bryce had a bad night sats weren't great. They swabed him in the office and its RSV. As of right now he is on O2 24/7. Dr K said if we have to go up past 500cc's he will be admitted adn also if he doen't start drinking more he will be admitted. Keeping our fingers crossed he gets better soon.

He also has an ear infection just to add to the fun!

Pics and sick....

Well looks like winter is officially here for us!

Bryce has gotten his first MAJOR URI this winter, hopefully his last. (doubt it but one can hope) and MRSA! Yup MRSA! Leave it to Bryce to get that! I have no idea how....

Last week Bryce has what looked like a pimple on his back well a few days passed and the "pimple" took on a life of its own... It was huge, red and pussy (TMI I know) so needless to say we took a trip to pedi.

She has to cut it open and drain it while we were there to test it for MRSA, of course it is. So she started Bactrim. The next day Thurs he started with a cough... I let it go thinking he was on antibiotics and they would help.

Well come the weekend he had gotten worse, cough was pretty bad. Sats were still good though so I did nebs and left it alone. Monday he was real bad coughing and wheezy low grade temp. I took him into pedi they started him on prednisone, continue nebs every 4 hours, continue abx.

Tuesday night comes along, I gave him his before bed nebs and layed him down. Went in to check him he was satting at 87! Thats very low for him... So I turned up his O2 from 100cc's to 500 cc's by the time I was done and could only get him to sat 94.

Called the doc today brought him to Pedi and Pulmonary (otherwise we have had to go to the hospital) pulmonary thinks he will be fine, but he does have and ear infection (eventhough he has been on ABX for 7 days now) and an RSV Type virus. Continue meds as we were and watch closely!

THANK GOD no hospital! He has been very cranky and uncomfortable but I think it would be worse in the hospital....

Anyway here are some semi recent pics:

Update...

So its been a while I know. I just haven't had the ambition to update... anyway heres a quick update on my little buddy... Pics soon I promise.

22.5 lbs.... Finally over the 21lb mark we're he's been for ever!

As of 12/20/08 I HAVE A WALKER!!!!!!! It has taken him a very long time but with some PT and some pushing Bryce finally walks! Bryce is significantly delayed still, like I said just started walking at 21 months and speaks no words at all, but we're working on it!

Yesterday we picked up his Sure Step AFO's because of hiss Severe Pronation where he walks basically on his ankles, so we will see how he takes to those.

He is off O2 during all wake hours which is so nice... No tank to carry around. 100 CC's at night though. Doing well with it!

Both tubes in his ears fell out already and he has had 2 ear infections in a month since they fell out.... HMMMM.....

Another interesting thing my little monkey does is throw major tantrums! He either hits himself or bangs his head on the floor... HARD! PT thinks its because of inability to communicate with us... I don't know. We'll be keeping an eye in that!

Otherwise he is doing well and cuter than can be!

Had a great Christmas, glad its done though kids had fun.

I am still deaf and feel like a giant piece of crap!

And I think thats it for now!