Madeleine is doing really well; it's the rest of the family that is still struggling!
I don't think I have mentioned that Madeleine's counts have, for the most part, recovered; she has not required any transfusions in several weeks now. Our labs and clinic visits have both been reduced to once per week. Eventually labs will become every two weeks, then once a month at which time she will have the surgery to remove her central line. We're scheduling her next MRI now, if insurance allows, for late September.
I don't think I have mentioned that Madeleine's counts have, for the most part, recovered; she has not required any transfusions in several weeks now. Our labs and clinic visits have both been reduced to once per week. Eventually labs will become every two weeks, then once a month at which time she will have the surgery to remove her central line. We're scheduling her next MRI now, if insurance allows, for late September.
Madeleine's occupational therapy started last week with an assessment and Monday we began therapy. It was amazing to see how small changes make such a HUGE difference! It was as simple as changing the consistency of her food to something more viscous and actually applying a slight pressure to her tongue with the spoon and she's eating like a champ! I literally burst into tears within minutes of beginning her session, she was eating so well as if there was never any issue to overcome. I know that it isn't my fault; it's not my fault her delays, her challenges, her inability to progress (up until this point) and I have to not feel guilty for these things I know she will eventually overcome. However, it is hard for me to not feel responsible. Perhaps that is why I was so emotional at watching her not only take interest in the food but really successfully take it into her mouth and swallow. The littlest things can be the biggest moments...
We are taking it slow because as the assessment indicated, her body hasn't quite learned how to handle food yet; she had issues with swallowing food and now that's addressed, her gut has to grow accustomed now to processing actual food and moving through. From the beginning most of the advice we were being given was for smooth baby food (store bought is not my preference) and to add olive oil or some other fattening oil or additive to give her the extra calories. That wasn't working out very well for several reasons. Now that she is learning to eat, the best thing happened: she loves avocado! So now twice a day we have rice cereal and avocado. She is still not tolerating the bottle and we'll continue experimenting with various types of cups to help her move onto taking liquids as the average 10-month old. Baby steps towards where she needs to be.
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| 10 months old |
I also want to take the opportunity to thank my very good friends Charley & Lucie Bell. This dynamic duo are amazing people, amazing parents, generous friends, ambitious business owners - basically all around WONDERFUL and inspiring human beings. Besides being our friends for years, they have really gone above and beyond what I ever would have expected from anyone in trying to help us financially. Charley is behind the Scartissue Oddball Society (Madeleine's t-shirt) and The Antique Toys ("Dear Madeleine" song), and Lucie opened her dance studio, Room2Dance for discounted dance lessons for two full days. Each and every time I have thanked them, they basically refuse to accept my thanks with an "of course" and "no need to thank me." True friends, truly generous hearts, these two. I would certainly appreciate any patronage of their dance studio, the band, SOS, even the Covina Business District as a means of showing appreciation to the Bells. I believe they too will have generous gifts as a result of their selflessness. I love you guys, Charley & Lucie. Thank you!
