Monday, July 12, 2010

Quite weekend

We had a very quite weekend, which is unusual for us. I did not take ANY pictures this weekend, which is very unusual for me. Colin was under the weather this weekend, so we took it easy.

To catch up on general things:
- Katherine moved into the Pre - K room at school. Her teacher says she is doing really well. She is doing great writing the whole alphabet not just her name and her number look good too.
- Is fascinated about "boyfriend/girlfriend" lately. I know it's all the princess movies she watches. Her teacher said the whole class talks about marriage and becoming a prince & princess. I think we are going to have our hands full.
- Loves to perform and sing lately. She is constantly making up new songs and the same question always follow "did you like my song", which I always follow up with "of course I did".
- If asked, will always pick out a dress to wear, is getting pretty girlie lately.
- We are growing out her bangs, she seems fine with that
- Wants Colin around her 95% of the time, he can sometimes play with her toys, but she can always plays with his.
- When she wants to do something, after she tells you what it is, she says "Is that a good plan?". If I tell her we are going to do something she does not like, She says "That's not a good plan".
- 4 yr old stats - 39 inches (50%) and 33 pounds (50%). She finally caught up after being 20% in both for so long.

- 15 months on July 3rd
- 20 lbs (10%) and 29 inches (10%)
- New words: Bubbles, PaPa, tickle, mine, no.. Brings all his words to about 15 now
- Walking/Running everywhere

Through my experience with Colin, I have been following many heart babies/children through the blog world. The heart community has been great getting to know other parents that are experiencing the same things we are.

There were many great things that happened lately. One baby received her new heart, another found out he does not need surgery just yet (they were worried about his O2 levels at last visit), another found out she will not have to have her 3rd surgery until she is about 4 (the age range is 2 to 4, in best case- the child is older). Several heart moms are pregnant, so we are hoping for no issues this time around. We have an HLHS baby due in a few days and his mom is just amazing, we wish her all the best.

But with all the great news, there is unfortunately sad news. A baby I was following, before he was even born, did not survive the 1st surgery, which is the hardest on these kids. It is heartbreaking to see that, and know that it could have easily been Colin. Even though I never met these people, my heart hurts so much for them.

Many people always assume Colin is fine, when I tell him he has one more surgery to go, then most replies are "So he will be fixed after that?". I just say , we hope so, but don't go into detail about no one knows. No one knows what his future holds, you can not fix this you can only try to make the body work in a way it was not designed to. In that holds many problems. The oldest survivor is early 30's, after that is a guessing game. Of course I worry about Colin's heart when he's 10, 15, 20, 30, 40, 50 years old. There are many adults out there that are doing just fine with HLHS and medical technology has gotten even better since they had their surgeries. There is so much hope in the vast uncertainty.

So I try to always focus on Colin is here and healthy now! I want him to experience so much in life and want to give him every opportunity to do it. I want him to know no bounds in life, that he can accomplish whatever he wants. I will deal with the tantrums, sleepless nights, the biting that he has started with a smile on my face, because he is simply here with us, and that's a miracle to me. I wish that all parents would get to have all that and more!


Lisha said...


Windshield Wayne said...

Beautifully written