A lot of little things

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.**


she loves to crawl over to the sliding glass door and push herself into sitting and look outside. 🙂

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 love meal time!

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!


Getting into her toy bin and getting toys out.


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.


She can now "chase" Calliope, which she finds very amusing. Calliope, however, does not.

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.


I have found her sitting up in her crib a number of times now. Pretty cute, huh?

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.


Mischievous girl found the charging cord to her monitor and started flinging it around while I was doing laundry. She is getting into everything these days!

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.

Christmas lights!

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!

Looking at the fountain at the mall with daddy!

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. 🙂

Meeting the Red Robin!

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.

"daddy, there's a coaster in your mouth!" Yes...we're teaching her proper table etiquette, I promise!

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.

With mommy at hem-onc on Monday.

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.

She got herself up to kneeling from sitting!

Then she tried to stand, but quickly ended up back on her bottom!

Standing girl!! Look at what a little person she's becoming! No longer a baby. 😦

Reading to herself and pointing at the different pictures. She loves to read to herself these days.



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4 responses to “A lot of little things

  1. Our stories are so similar! I found myself thinking, “me too!” as I was reading this post. My Mad is STILL regaining movement, and her last surgery was two and a half years ago. It’s so exciting to see progress after waiting for so long. Strangers used to comment about Mad’s lack of hair all the time too. It kind of annoyed me, but they didn’t know any better. So great to see your Madeleine moving around so much! And you (and she) definitely deserve a Christmas tree!! She’ll love it!

  2. Aspen

    She’s looking so good! I love the head fuzz; it looks like a little military buzz cut. xD

  3. Jo

    She looks so great!!! I miss you guys! You’re right her little cheeks do looks slimmer. Adorable. Yay for a tree! 🙂 and finally – lovin’ the snowy blog!

  4. grandma

    the pictures are just great-really shows all that Madeleine has accomplished in the last little while- our little miracle!

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