The last few days Madeleine has been doing great! We were here at clinic for about 6 hours on Friday (day+21) but she got, as I call it, "the good stuff" because she always feels like a million bucks after being anemic & feeling just so-so. We went home and she bounced the afternoon away laughing & screaming (with excitement) in her activity jumper.
Saturday was big sister's 3rd birthday & we spent the day relaxing mostly and with family. Sunday Madeleine spent most of the day at her Grandma's house so Mom & Dad could spend time with Sister at California Adventure. Still in recovery cycle, it's not yet a good idea to take Madeleine out in public frequently & especially to places with a lot of people. Many kids get to do different things when in recovery, but Madeleine is different. Her tiny body makes any sort of infection or illness escalate rapidly so we must safeguard her as best as possible as well as keep her close to her health care team just in case. At only 6.7 kg (14.75lbs) things don't take long to work through her. We thank the Lord every day she's been doing so well.
On Friday I mentioned that it took 2 hours to find the right blood donor for her transfusion because of the antibodies she is making. Turns out this is forever; she will always have a narrower availability of blood donors to avoid allergic reactions to the transfusions. The blood center will begin advocating on her behalf the very few donors that are good matches by encouraging them to continue donating if not more frequently. We also discussed vaccinations. Madeleine's immune system will be too immature for quite awhile to get vaccines. As for the rest of the family, no live-virus vaccines, and we were strongly encouraged to consider the flu shot this fall, as Madeleine contracting a flu virus, simple as they may sometimes be, could be life-threatening to her. Unfortunately the docs know this from experience. We've never gotten the flu shots & haven't had the flu; this actually makes me very uncomfortable.
Keep praying for clear scans!!!
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