Sorry I’ve been so MIA. There hasn’t been a ton to update and I’ve been fighting off a low-grade cold so I haven’t really been in the mood for updating. **Throughout this post will be photos from the last 10 days or so. They may not relate to what’s being discussed at the time, but they are cute and show how much she’s doing now.**
First we’ll address doctor’s appointments. On Monday we had a follow-up appointment at hem-onc with Cori. Madeleine had her blood drawn and we waited for Cori. The appointment was pretty quick. We discussed her movement and how much better she’s doing. For that Cori and Dr. Park are very happy!
I told Cori that her sleep is now under control and that she’s not taking pain medication anymore, aside from the scheduled Neurontin. We have decided to step down off of that and see how she does, so she is now getting only 2 doses a day, instead of 3.
Everybody commented that she now looks much more proportionate and older. I’m sure it’s because her weight has stayed the same but she’s grown about 3/4 of an inch. We knew this would happen, as she is growing into her steroid weight gain. Being with her every day, I didn’t realize just how much her little cheeks have slimmed down!
We then discussed port removal. Dr. Park is fine with her port being removed ASAP, so we have scheduled that surgery for next Wednesday. It is an outpatient surgery, which means we’ll be home the same day. I am sooo glad we don’t have to stay in the hospital again. Especially since we have her on a decent schedule and I’d hate for it to get all ruined again.
Today, we had physical therapy. I was excited to see her PT because we haven’t been since before Madeleine’s surgery. She is doing so much more!! I was very excited to show Leslie all of the progress she’s made and how independent she has become. The appointment went very well. Leslie was quite pleased with all of her progress and said she is showing definite improvement since the last time she saw her.
She did say that at this point she has no way of knowing if her remaining weakness is injury from the spinal cord damage or if it is because she wasn’t moving for so long and she is still recovering. There won’t be a way to know that until later. Spinal cord injuries can continue to heal for up to a year – so it’ll be a waiting game.
Madeleine is still a bit weak on her inner hip muscles. Leslie wasn’t sure if her apparent weakness of her abdominals was because she’s just now getting up on her knees and all babies are weak at that point, or if it’s because of residual damage from the spinal injury. Again, another waiting game.
She has, however, gained a lot of strength. She is able to twist and maintain balance. She can reach for things with much more confidence. She can get up onto her hands and knees and maneuver into a sitting position from there. She is actively trying to figure out how to pull up. She pulls up using our fingers and has even climbed into our laps. Overall, she is doing just magnificently on the movement front.
Otherwise, we are getting out of the house more for fun-type things. We’ve been doing some shopping. We go out for lunch sometimes just so she can see new surroundings. We have been catching up with friends and running errands. She is a much more independent player now, so I can do what I need to do and she finds ways to amuse herself (see previous photo!). I even had a chance to get our Christmas lights up this past weekend!
We are gearing up for the holidays and took holiday photos last weekend. It just so happens that her birthday falls near the holidays, so this is also when we take our annual family photos. I won’t be posting our holiday card selection here, but check back in the near future for a post of some of our favorites from this session that won’t be used on the holiday cards. 🙂
After pictures, Alex and I took her to eat at Red Robin, figuring she’d enjoy the atmosphere and it was a bit past lunch time. On our way in we ran into the Red Robin and she got to meet him, which she seemed a bit baffled by. She also discovered coasters and enjoyed playing with those with her daddy.
And finally – she realized that there was a little boy in a high chair behind her and they started making eyes at each other. Turning their little selves around almost entirely in their high chairs to get a glimpse. That was pretty darling.
We are going to go to try to make it out to see Santa tomorrow. Hopefully the nap schedule works out such that we can fit it in. This weekend, Alex has already promised that we can go look for a tree. This is a big deal in our house. In the entire time we’ve been married, we have never, I repeat, never, had a real Christmas tree. Alex isn’t really a fan and most of our homes up until now were far too small and/or we had a cat that was a tree climber and didn’t feel like dealing with it. I’m sure Madeleine will be captivated by the idea of a tree!! And I am quite excited for our house to feel more like Christmas!
And finally, Madeleine’s hair is starting to grow back. We noticed just before Thanksgiving that it was starting to grow in, but now it’s growing very quickly and she’s got fuzz all over her head! 🙂 Strangers who see us out and about tell me not to worry. That she’ll get hair eventually. I snicker to myself and think “worry?? I’m not worried. I know it’ll come back!” But of course, I don’t want to get into her whole history with every stranger who mentions her lack of hair, so I keep my snickering to myself.
And now, a few more photos of Madeleine from this week.