Wednesday, May 23, 2007

Sooner Than Later

Clare received her AFO's this week. She was supposed to get them last week, but they were not ready. And her shoes to fit over the AFO's won't be ready until next week, so it has been a slow process. The braces are so much smaller and so much bigger than I expected. I was unaware at first that the braces would come up mid-calf. That way she has a good amount of ankle support. I thought they would be lower. At the same time, Clare's calves are not that big, so the braces themselves are very small! She is not crazy about wearing them, but we can see how much more support her ankles get. She wore them for half of her OT session on Tuesday, and her therapist commented on the difference in Clare's walking with them on and off. Clare continues to improve her cruising and is becoming more daring in letting go of a piece of furniture momentarily to get somewhere else. I know this is just the beginning of Clare walking, and it is exciting!

We heard from Children's Hospital today, and Clare's cath is scheduled for June 1. Sooner than expected. I assumed her cath would be mid-to-late June, not next Friday. Although part of me is glad the cath is sooner (just to get it over with), another part of me hates that it is next week. Once again, we are left scrambling to take care of all the details in a few short days. Plus this is a very busy month for us - immediately after we get home from Clare's cath, Shawn leaves for Philadelphia for a few days on business. He gets home, then we take off for my sister's wedding for a few days. Then the next weekend is Simon's Baptism and we are planning a big get-together for that. So it is one thing after another. On top of that, it is never comforting to hear the hospital tell you that the cardiologists want Clare in as soon as possible. What does that mean?? Okay, I know what it means, but I don't like to think about it. So Clare goes in next Thursday for pre-op, then Friday is her cath. I am praying, praying, praying that Clare does not need more stents. I know the two stents she has already in her main pulmonary arteries are working wonders in keeping those big arteries open. In Clare's last cath, she narrowly missed having another stent placed in a distal vessel thanks to the amazing skill of her doctor. I hope Clare is as blessed this time - no stents means no ICU stay and an easier recovery. She will have the same cardiologist performing this cath, and he is the Chief Cardiologist at Children's, so she is in good hands. It has just been so long since we've been through the routine, that every little detail is making me nervous.


Anonymous said...

We will be praying that everything is 'simple' for Clare as well as her surgeons.
As for the walking - all I can say is "You go, girl!" As always you are all in our prayers!
Love Aunt Joan & Uncle Steve

Sara said...

Clare and company will be in our prayers too. Looking forward to seeing her in her wedding clothes soon. Love, Sara

Kerry said...

Thinking of Clare over here too... such a little trooper she is :) I am interested to hear how she does with the AFOS, I hear the walking improves so quickly.

Have a good weekend! :)

Katie said...

How wonderful Clare is doing so well with walking! I hope she gets used to the AFOs soon :)
Best of luck for the Cath next week. My thoughts and prayers are with you all
xxoo Katie

Every minute counts.... said...

I will be praying for you all next week. I can't imagine the stress of going through a cath again...and just having had a! Here's to praying that things go well and no ICU stays are in your future!!
(you are very sweet with your replys to my blog,thanks. And yes Abi is tall, she is actually on the noraml chart in height, only at 5% but at least on the chart. On the Ws chart she is 50%height and 5% weight, if she could just put on some weight we would be fine!)


Lisa R said...

I hate cath's I know how you feel the scramble before the actually event. I hope it all goes well...Wow Simon and Jamie looked alot alike you are right they are the cutiest!!! Hope your doing well. I have my fingers crossed for Clare the wedding count down is on...