Showing posts with label development milestones. Show all posts
Showing posts with label development milestones. Show all posts

Wednesday, June 25, 2014

Draw time and the difficulty with flow

Samantha had a blood draw today. We picked her up from camp and handed her a full water bottle with the instructions to drink. She had the 30 minute drive to the lab to get in as much as she could.

Samantha's never been a good bleeder, even as a baby. She's learned that the more the drinks the easier the draw. Now that she's 9, we don't have to argue about it--she equates more water with less pokes.

But today, Samantha wasn't a good bleeder. She drank a lot of water, but had expended most of it at camp. She tried to drink a lot until she felt too full to drink more.

I typically sit in the lobby of the lab while she goes back in the chair by herself. We've come to know our phlebotomist well. Samantha likes to do it by herself--it makes her feel grown up. While we were sitting in the lobby today, Samantha and the phlebotomist were giggling. They were laughing because the draw started out well and blood was flowing and the moment they mentioned it the flow stopped. It happened twice.

I'm so glad that it isn't a negative thing, these blood draws. And that Samantha can find humor in a somewhat sucky situation.

When she was a baby and I had to hold her down because she was screaming and squiggling during a heel stick. I never thought this would get any better, but it has. It has been at least two years since Samantha last cried at a draw. And now she takes it like a champ.

~ ~ ~

In May, when our school had an open house, Samantha had her autobiography displayed on the the third-grade wall. It said: "My name is Samantha. I was born in Gilroy. I was born without a thyroid. My parents were so happy that I was their daughter . . ." Of course we are!

Sunday, May 18, 2014

GERD and Surgery

June 2013

Bug has GERD, which seems to be somehow related to the thyroid, or lack thereof. She seems to also choke more on things like water. So when she swims she tends to choke pool water. For most kids this would be normal and insignificant, but the last three years we've noted that Bug begins with pulmonary symptoms within a few days.

She aspirates and within days she's got a phlegmy cough. We attempted to double up the Prevacid dose from 30 mg to 60 mg a day and to feed her lunch at least an hour before swimming. That didn't work so now we're treating with 60 mg prednisone, Xoponex inhaler, and antibiotics.

Last August we had the same scenario but I didn't get on top of it quickly enough. Bug went from moderate coughing to downright scary, "do you know the location of the nearest hospital coughing." And I want to do anything I can to prevent this, but the pediatrician and I have seemed to max out our remedies.

Today he suggested we go back to the pediatric gastroenterologist and discuss Nissen fundoplication or esophageal sphincter surgery. The pediatrician has had other similar patients who often wind up with pulmonary problems with successful surgeries.


It's difficult to think about agreeing to surgery for an 8 year old, but I can't imagine what longterm steroidal use will do to her development. It's certainly a lot to think about.

Development Worries

June 2013

Like every parent with a child with CH, I used to worry about development milestones. We all know how important they are when they are babies. I used to worry about Bug's teeth--they were so late coming in. And she didn't walk until 15 months. But that girl had a love for books long before then.

Bug used to spend hours sitting with those bathtub (plastic) books in her hands looking at the pictures. She loved when we'd read to her and even learned to pull up on the bookcase. She was trying to reach the books we didn't allow her to play with.

Now at 8 she reads above grade-level and we have a hard time finding books that are age appropriate and challenging. Don't get me wrong, we still watch her development closely. But I feel like we have to worry less about it the older she gets.

What I'm saying is that it does get better.