Her Highness...........

So full of smiles lately. Does the heart good to see.

The big girl in her bumbo!

Jody, Kirk, and Erin came for a visit this past weekend

Um, is she really sick??!!!

Lindsay will get her labs drawn in the morning to determine if she is ready for rituxin. Most likely won't be a problem since she received some blood about a week ago. Some good news is is that I did see her numbers today and the medicine IS working! Now, all we have to do is refrain from getting transfusions, and we should be able to get these antibodies down hopefully within another month or so. For example, the number that we want to decreased started at 89 I believe or something close. On the 23rd of December, blood was drawn and the number was 55! The hard part is that the number should be below 12. That's right, 12. GULP! Well, we have a ways to go but at least we have proof that the meds work and we just need to keep her healthy enough so that she can get it as often as possible which is about every two weeks. That was the goal anyway until she got an infection, had potassium problems, etc. So, rituxin should happen Wednesday or Thursday now. Also, I asked one of the docs about starting cereal and she said normally that would be fine but with hypoplastic babies and the decreased blood flow with only having half of a heart functioning, the perfusion to the belly isn't desirable and that is why most heart babies have problems eating. So, for the best interest of Lindsay, I have adapted to the fact that we will just have to cross that bridge when the time is right. Thrush looks to be improving already. I gave her a bottle at her 6pm feeding and she took it all! Go girl! She was sleeping for the majority of the rest of the feedings for the night, so they were tubed.
I also wanted to thank each and every one of you that posted uplifting words for me today. I know that I sounded pretty down but believe you me, I have been much worse! I just haven't blogged it all before. Some days I just feel like I'm going to explode and without JR here in person to vent to, I plastered it on here for all of the world to see! :-) Keep all of the positives coming this way and in your prayers throughout the day, please include that this medication will enable us to find Lindsay's perfect heart! Heart blessing to you all!
Love, Suzie