Monday, December 29, 2008

Oh What a Christmas.

Well, it certainly didn't go the way I had hoped...but in the end that was ok. Alex continued to get worse and actually ended up with pneumonia, it has been a very long week for her. She's finally on the mend and is starting to get itchy to play with friends and go outside! Jack's been great! Still coughing but buggers through it amazingly well! Kyle on the other hand...this poor kid..has not had an easy week. When Kyle gets sick it gets so much more complicated, he can't take cold meds or cough medicine. We have to watch his respiratory rate, heart rate, body temp, retractions, signs of any amount of distress can put his life in danger. Thank god for Kyle's pulmonary dr who was on call last week and this weekend, he trusts me completely and pretty much lets me make the calls on how to treat him, at times this is good for us and others it's hard. There are moments where I have this overwhelming feeling that this is all to much...I'm not a dr or a nurse, just a Mom...last night was pretty rough for Kyle, major bloody nose which actually made me pretty nervous, lots of breathing treatments. This afternoon he seems to have a little pep back in his step so I'm praying hard that we can move past this quickly. I'm dreading the new year, and I hate that. The countdown to Pittsburgh has begun and I'm feeling panicky about it. We've started to really talk to Kyle and Alex about it...not sure how much everyone is absorbing but it's a start. I need to start making plans on how to even get Kyle there, the oxygen is a problem on the commercial airlines along with all the germs so we are looking into a few options.

My grandfather is HOME, which was amazing. He's doing ok, tired but I think he's also recovering!

It wasn't the Christmas I had hoped for, but we were all here in the same house and that in itself was amazing.



Tuesday, December 23, 2008

Trying to keep that holiday spirit!

I'm trying, really trying to keep the holiday spirit. I swore this year that NOTHING would get me down, that I was going to be happy and full of holiday spirit, if not for myself than for the kids. It started last week with the boys being sick, then me, now Alex. Poor Alex who gets the highest fevers and talks all in nonsense. Sunday night she went to bed fine, I was up till 2 am but that's a blog for a different day. At 4 am I hear that high pitched voice that only shows up when her fever is high and she's really sick. This kid gets sick fast, fact when I talked to my sister last night she asked if Alex was in her delerious state with the fever. It's a well known fact that Alex and fevers usually means she starts thinking she has bugs in her bed, or that her brother is not home or who invented the word Christmas (yikes time to go back to Church) or Mommy, why do I like bananas...all these things happen at 4 in the am when her fever is high. She started getting high fevers at 9 months old, when she started with the strange talking I called the ped who reassured me it was normal. Listen, nothing this kid says when she is talking nonsense is normal trust me. So as I try to re-suffle all the things I needed to get done today the phone rings and my grandfather has been admitted to the hospital...seriously...this man is the best..the best. He's been helping me and loving me for more years than I remember...

So it's off to the hospital to make sure my gram and him are ok... He's an amazingly strong man and I know he'll get past this.. I know he will.

If I don't get a chance..I really wish you all a Merry Christmas....I would be lost without you all...



Friday, December 19, 2008

Merry Christmas...early!

So I'm pretty excited, for the first time ever I'm done my shopping before Christmas Eve..I swear every year I have to run to the mall for "something" on Christmas Eve..this year..I'm done! I'm refuse to go anywhere near the mall! :) Which at this point seems good since we are getting a ton of snow this weekend and both boys are sick. I started Kyle on steroids yesterday, that's twice in less than four Sunday he'll be a mess...he should be tapering down by Christmas so I'm hoping he'll be able to enjoy the day! Mark and I have started trying to plan for the 8 weeks in Pittsburgh, I of course want to be in both with Jack and Alex and in Pittsburgh with Kyle. The problem is so does Mark, so it's not going to be easy trying to figure out the schedule. As usual I have let the emotional side of things cloud my brain, thinking to much about the time that I will have to be here in Maine while Mark gets time with Kyle in Pittsburgh...I try so hard to remember that Mark is Kyle's dad and that it's not just about me. But he's my baby....and when I try to be level headed and rational it comes out emotional and painful. So we are working through that...either way Mark and I will be separated from the kids in one way or another for 8 weeks. I've talked to Alex's teacher about this, every time Kyle is hospitalized Alex struggles alot...I think it was the last hospital stay that I realized how close the two of them are. So we'll try to stay on top of that with a little help.

Merry Christmas!


Thursday, December 18, 2008


We are going to try to use this blog to update as much as we can on how Kyle is. Kyle is our little 33 weeker who turned 4 in October, he has been in and out of the hospital since he was born and we are now preparing him for an 8 week hospital stay for from home...

Wednesday, December 17, 2008

New to this

Ok, so you'll have to cut me some slack, I'm totally new to this but I'm hoping I can get the hang of it soon! :)

Here is a picture of the kids at Thanksgiving (Kyle with no canula! Love seeing that sweet face!)

Monday, December 15, 2008

Sponsor Me at March for Babies!

Tuesday, January 22, 2008

My little saints