Monday, January 10, 2011

Colin & HLHS Update

This weekend was a quite one, which is a good thing sometimes. Friday we had Matt's family over to celebrate his birthday and watch the Aggies play in the Cotton Bowl.. The game started out great then fizzled…but we had a great season beating Texas Tech, UT, Nebraska, and Oklahoma! The rest of the weekend we just ran errands and rested up. First week back to work after the holidays was rough to get back into schedule, so it was nice to relax.

I haven't done a Colin & HLHS update in awhile, so here it goes:
- First of all, I want to remind everyone to come out and support Team Colin at the It's My Heart Walk on Feb. 19. You can read more about it here.
- Colin is now 21 months old..terrible 2's right around the corner :)
- Colin is now 22 lbs (5%) and 32 inches (10 - 25%).. YEAH.
- We are not as concerned about weight as before. He is gaining and eating well. I want to make sure he is eating healthy and not just a lot of calories to bulk up weight. I am excited about his height actually catching up.
- His next cardiology appointment is March 30 (6 months from his last one). At that appointment he will have a chest x-ray and EKG, does not need an echo this time.
- Last check at oxygen saturations, he was 87%, which is his normal for him. He is anywhere from 85% - 90%.
- His speech is growing more and more each day. He is now putting 4 words together. The other day I was in the bath and he went and got Matt and said "Dada I wanna bath". When he wants something, he says "Please Mama Please" I love that!
- He is a climber.. He can now get onto the kitchen table chairs without any help. Climbs on the stools in the kitchen. We are constantly telling him not to stack his toys to climb up :)
- He is able to recognize pictures out of his books and point to them.. I ask him where is the dog, cat, train, butterfly, apple, orange, bear, frog, pig, goat, and a lot more and he can point them out. - He can throw a mean tantrum and sometimes will cry when told no.. Getting into the terrible two phase.
- He loves to snuggled and cuddle.
- He still gets his monthly RSV shots durning the winter.. he has had three so far.
- Plan at this time is still to have the Fontan at about 4 ish.. But that can always change depending on heart function.
- A lot of people ask, will his heart be fixed after that.. The answer is no.. They can never fix his heart, the surgeries give him a better chance to survive. He will always be on medicine, always go to a cardiologist, there might be more surgeries or even heart transplant. The future is unknown.

I try not to think about the last point too much, though it's hard not to. Colin is special is so many different ways, his heart is just one of them. You would never know by looking at him that he has had 2 open heart surgeries. You would never know by his energy level that his heart doesn't function at 100% and he has less oxygen levels in his blood than most. His color is pink, rarely do we see blue in his face. Heart kids for the most part don't look sick, don't act sick, and we never try to act like he is either. We go on about our "normal" lives because that's the whole point of these surgeries, to give him a "normal" life. One day I will have to explain all this to him, I dread that. As young as Katherine is, we always talk to her about Colin's special heart and his boo-boo's. She kind of understands, but it's a hard concept at 4. It's a hard concept at 31 :)


Jenny Lincoln said...

Yea! Colin is getting so big!! :) :) I can't wait until Aly starts talking like that. She laughs at me whenever I try to get her to say "please". :) I totally understand how you feel about not focusing on the future when it comes to our babies hearts. And you are right, It's a hard concept for us, let alone a 4 year old.
Glad things are going well with your family! :)

Hope's Blog said...

I know it is strange, but I am happy to read that Colin is only 22 pounds. I worry so much about Hope's weight...she is 15 pounds at 15 months. It seems like she is right on target with Colin and that makes me smile!

It is so hard to really know if she is really small or just normal for a heart kid and at least she seems normal when I read about Colin. I wish there were a weight chart for our heart would be much easier than the constant worrying.

SunSonSunshine said...

Colin has some very special parents and is blessed with a loving sister..not too mention his devoted extended family. He has changed everyone's life in such magnitude it is hard to express, but you do it so well, jennifer. Love reading the blog; it always reminds me of the value of each day.

sunshine said...

I wish people would realize how important this walk is. I am cyberwalking, but boy, do I wish I could be there: Colin is sooo special; he is a HLHS poster child! He has overcome so many obstacles and is a "dennis the menace" despite his condition. He has changed my life for the better. Keep working at getting people's awareness up on this, jenn!