Thursday, October 16, 2008

Enjoying the fall!

These are some photos taken at Glen Helen in Yellow Springs, Clifton Gorge, and Sharon Woods park. We had a great time.

Wednesday, October 8, 2008

The infusion went well.

Thank you for your prayers. We have much to be thankful for. God is so faithful to give us exactly what we need to grow and trust Him more. The day went smoothly overall. Annabelle only whimpered when they accessed her port and drew the blood. This is a big improvement from when we started in February. Also, the nurse measures and weighs her every month and she has grown 3.25 inches since March. This is great because they told us her growth would likely be stunted until she was off of ACTH (the shots she gets every other day that we are slowly tapering). We are so pleased.

A smaller praise that a only a caregiver can fully appreciate is that I am required to collect a 24 urine test from an active potty trained toddler who is used to taking herself. The praise is that I was able to do most of it while we were stuck there most of the day instead of trying to make sure I am with her at home every minute. Since she is not dry at night yet, we have to use an adhesive bag - very difficult. Please pray it stays on all night so we can be done in the morning.

The day was not any shorter because the volume of IVIG was the same even though the concentration was slightly less. So we were done at the usual 4:30. My mom had my girls and usually brings them home, but she came down with the stomach flu today while she had them. So I drove out to pick them up, and left Annabelle in the car away from illness. Please pray that she heals quickly and that no one else gets it.

Tuesday, October 7, 2008

Monthly Infusion

I'm wearing my mask trying to be safe coming in and out of the hospital.

Keeping busy with some fun play dough.

Snoozing on my mommy.

Annabelle has her monthly IVIG infusion tomorrow. She also has a few blood tests for her thyroid to make sure it is functioning properly. Dr. Pranzetelli said some of her lab work from our trip to IL showed some abnormal levels and we need more testing.
We are excited that she will get slightly less IVIG because the Dr. P decreased the dose due to the fact that she gets headaches afterward. So, this might mean a shorter day there.
Please pray for us tomorrow for:
- Annabelle as she is increasingly aware of what is happening and doesn't like it. She handles it pretty well, but the blood draws are a bit scary for her.
- Protection from germs.
- Strength for whatever comes our way.