Wednesday, February 24, 2010

Update on Team CAP

Haven't updated in awhile but no news is good news!

Phil is still away working and should (hopefully) be back in the next couple of weeks.   Cayden and I stay busy going for walks, shopping, watching olympics, baking, dim sum, and visits.  We sure miss daddy though!

Cayden had his 4 month immunizations and 4 month check up the same day and he did so good for both!  He was a little fussy and just wanted to be cuddled,  who can complain with that?  At both the dr.'s and the health unit he was weighed and he averaged 15 pounds between the two!  He now is 63 cm.  It's unbelievable that Cayden Boy grew a whole pound and 2 cm in 2 weeks!  Love it!!

We started Cayden on iron supplement the 2nd week of Feb as per his gastro docs reccommendations and it has just made him sooo gassy and irritable.  Cayden is so gassy the entire day after taking it and he wakes every hour in the night and jsut toots away.  He is not the same happy boy when he takes it so we have stopped for the time being, and plan to check with his clinic if there is an alternative. 

It is so amazing watching my little guy change everyday! He is so intense in play and story time.  He works so hard to play with his toys and gets frustrated when his hands can't do what he wants them to!  He loves his books and gets excited when he sees them!  His breathing gets really fast and his stridor gets really loud when he is excited, it's pretty cute.  He does it when we play pat a cake, read his peek a boo book, when he sees someone he recognizes and when he sees a washcloth.  Cayden loves washclothes, he goes nuts when he sees one and has to chew/suck on it, it's too funny!

{Busy playing}

{All cuddled up for a nap!}

{My happy guy}

{Cayden and Grandma in matching Team Canada outfits}

{Trip to the zoo...first time out in the babyhawk}

Thursday, February 11, 2010

Welcome to Holland


Emily Perl Kingsley.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Wednesday, February 10, 2010

4 Months!!!

Cayden Boy, you are 4 months old today!!  I truly cannot believe how fast the time has gone already!

This is what you like to do:
-you love to swim and you really love bath time
-you smile lots and have just started to laugh,  you especially love to giggle at farting noises...such a boy!
-you can roll from front to back and are soo close to rolling back to front
-you love to grab your toes
-you love to read books with us. your favorite is Moo, Baa, La La La
-you play with your telephone and bus at grandmas house
-you fall asleep great as long as you have your soother, lambie, and a blankie
-you take all your medicines like a champ
-you love to pull mommy's glasses off
-you can sit up with a just a little help
-you are so happy and rarely cry
-you love to grab and discover everything!

Tuesday, February 2, 2010

CF Clinic Visit

We had a great clinic visit for the most part...

1.   First off, we got Cayden weighed...he weighs 6.25kg (13.75 lbs)!!!!  That's up almost a pound and a half! So awesome!  He still is measuring at 61 cm for length.

2.  The Respirologist checked Cayden's lungs and she said they sound crystal clear!

3.  I chatted with Cayden's Physiotherapist about the trouble that I have been having with CPT every day. We talked about our current routine and discussed some different ideas on how to get through it without a melt down.  One thing she suggested was doing the evening CPT a little earlier, when Cayden and I both are a little less tired.  Seems a little obvious now that I think of it :)  It was also nice to hear encouragement to keep pushing through it, but,  if it's gotten to that point where we both are crying (and we've been there a few times) then just take a break, start fresh the next day, and not to beat myself up over it.  Hopefully it gets better!

4.  Next we met with the Dietician.  We talked a lot about enzymes and poop.  Cayden's stools have really improved over the last little bit so we are going to keep his enzymes where they are and increase them in a few weeks.   She also gave me information about starting solids for when the time comes (Just when breastfeeding has started to get easy).

5.  Met with the Gastroenterologist.  She was also happy with Cayden's weight gain; however, she is concerned with his liver enzyme levels being high.  She ordered more bloodwork and another liver ultrasound for next time.  She explained that a coarse liver is a broad term in sonography,  it could mean a fatty liver or it could be a back up of bile.  Either way, there is some liver damage and she wants to see if it is CF related or something else and then go from there.

6.  Cayden got his RSV antibody shot.

Cayd did so well throughout the entire day, as always.  He plays shy and gives lots of smiles to all the doctors and nurses, it is so cute!  It was a long day, poor Cayden didn't get his usual naps in and neither did I so I better get to bed!