Overall Update

Since I posted last, Madeleine has been back to the clinic twice for blood draws.

Saturday her counts were stable, up very slightly, but considered stable. No transfusion needed Sunday. Today, her counts were up a couple of points, so

At the infusion clinic on the weekend!

there was also no transfusion needed. YAY! We go back to the doctor again tomorrow, which will be a monster of a day. First we have a clinic visit, then we’ll head to physical therapy/rehab where we will meet with both the physical therapist and rehab doctor at the same time. After that we’ll have a break for about an hour and a half, during which time I’ll grab some lunch and feed Madeleine and then we’ll be headed off to Neurology. By the end of it all, it’ll be about 6 hours at the hospital. I am glad we don’t have to re-do labs tomorrow, because that’d tack on another hour to our day.

Snuggling with daddy

We are still tapering her steroid and she seems to be a much happier child. We are getting a lot more grins and giggles these days. 🙂 We are, however, having a much, much harder time with sleep. She has now decided that having mommy hold her while she sleeps is ideal and being put in the crib is no longer acceptable. *****sigh***** Since her pain is under control and I know she’s well fed, I have been letting her cry-it-out again. The doctor, when I spoke to her today, said that it’s necessary since she has re-learned that crying gets her what she wants. *****sigh again***** In just 2 days, she is already crying for far less time, it only lasts a minute or two, so I know it’s just protesting. Especially because if I go in there she won’t eat and instead just grins and wants to play with me. Silly girl!

Yummmmmm. "Na naaaaa na!" (aka: Lasagna)

She also has continued her love of lasagna. I made a spinach/artichoke vegetarian lasagna the other day and offered her some to see how she liked it. This child is an Italian baby!! She adored it. And she now smiles/grins whenever I say the word “lasagna”. Omgosh she is too much!! LOL! She also is a huge fan of yogurt and  gobbles that down. In fact, I think she’s officially outgrowing the baby purees, since she complains when I feed her those these days. Unless they are her favorite fruits. She seems to really prefer the flavors of “adult/real” food.

Look at that chub!

I feel like she’s gained 10 lbs in the last week, by the looks of her. It is a little bit crazy, actually. Alex says it’s all the lasagna I’ve fed her. Haha! But I know deep down that it’s the giant amounts of food she’s eating, in general.

Otherwise, things are good. We are excited to start rehab and get going with physical therapy again. I think tomorrow is going to be a very interesting day for us, and I’m excited to see what all the doctors say!

At the clinic today. It was a quick one, today. 🙂


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