Monday, October 20, 2008

Great news at clinic

So last week was filled with birthdays! Cousin Reed turned 1 and Nana - my grandmother - turned 89. Greg and I also got the opportunity to go out without the kids for our quarterly Sunday school supper club and we had a great time! On Sunday, Maddie's choir that she is a part of sang in church and they did just fabulous!

Today was BDP Clinic and I think it went wonderful! Let me back up a bit, last week was Kathryn's 6 month checkup with her eye doctor and he said that her eyes have flip flopped from far sighted to near sighted in the last 6 months. He said it seemed significant and that he didn't doubt that Kat would acquire glasses before she is 3. As a mom, I left in tears because I can imagine all those mean kids out there making fun of my precious miracle one day. Plus I am ready to get rid of equipment, not acquire more, and to boot - glasses aren't cheap! Anyway, after I sucked it up and realized that this is truly not an end-all-be-all type issue, I was much better. Kat also received her first synagis injection of the season last week and her weigh in was only 13lbs, 10ozs. I was devastated - I just knew she would be 15 or 16 pounds by now! We also went to her pediatrician last week for her 15 month check up and shots and they added back Zantac. So needless to say, I was praying hard for good news today!! (And God heard me!)

Here are the changes in a nutshell:
1. We discontinued her iron supplement - FINALLY!!
2. We changed from Neosure formula to Pediasure - FINALLY!!
3. We have a weaning plan for her diuretics that would hopefully lead to discontinuation of those by Nov 4!!
4. We are turning her Oxygen down to 1/4 liter!!
5. One week after discontinuing her diuretics (Nov 11), we can start weaning her oxygen
What that means:
3 days of 30 minutes off of oxygen, then on the fourth day double it to one hour
3 days of 1 hour off of oxygen, then on the fourth day double it to two hours
3 days of 2 hours off of oxygen, then on the fourth day double it to four hours
You get the picture!!!!!

This O2 weening is only for daytime hours until we go back to clinic on December 1. If she is napping or sleeping at night, she'll still get the oxygen. If my calculations are right, this will mean that she is doing 8 hour stints of daytime without oxygen (and possibly longer by that point) by Thanksgiving - !! What a gift!! Fear not though, especially if she comes off of the oxygen as planned, we will be keeping her away from large crowds and any travelling to limit any possibility of illness that could push her backwards!

I have been praying for this good news!! We are on our way to a cordless baby!!

Pray with me for one other issue we are facing - Kathryn is apparently on food strike and is not interested in bottles, baby food, people food, anything! We get small levels of cooperation, but not much! Please pray with me that it improves soon!

We actually have a quiet week the rest of this week!! How amazing!

Faithfully, Kelly

4 comments:

Kate said...

Could she possibly be off oxygen completely by Christmas??? That would be awesome!

We will be praying for the food strike to end. Surely it will end soon.

Avery Tales said...

I'm so glad to hear that you got some wonderful news! I know I've said it a million times, but your family and your faith is so inspirational. I'm so happy for all of you. I'll be praying for her to turn into a Hungry, Hungry Hippo! :)

Andrew and Lauren Hess said...

Carson did the same thing to us. I felt like he went days without eating and I would get so frustrated. Hang in there, we will be saying our prayers for her to get hungry and want to eat more! She and Carson can start their own weight chart!

Brooks Family said...

Glasses are seriously cute. Look at my Claire...;)