She Grew!

This morning we had our weekly occupational therapy (feeding). The past few months have been going really well. She’s very willing to participate and seems to really enjoy herself. We believe that she has even managed to swallow a few small sips of watered down baby food (sounds yummy, doesn’t it?). But, today was terrible. She did NOT want to participate and made her feelings very clear. Luckily Allison and I agreed that we did not want to force her. We want “mealtimes” to be a pleasant experience. And we only have a few more sessions before the jaw reconstruction, so there’s really no need to push at this point. So, we called it a day with Harlie and that gave Allison and I some time to go over questions for Dr. Magee (the plastic surgeon). The jaw surgery greatly impacts feeding issues, so it was very helpful to hear her questions.

Then after that appointment we rushed down to MCV for her appointment with her pulmonologist and nutritionist. That went really well. It was the first time they had seen her walk. They were all thrilled to see how far she’s come in just a few short months. They always do vitals and weigh and measure her. Her sats were 91 while we were there (which is incredible). The great news is that, for the first time ever, she is FINALLY on the growth chart for length (5th percentile)!!! She is finally 30” tall! Woohoo! She will be 19 months old in 3 days. She said that the walking is doing the trick – your bones need the stimulation of walking to grow well.

Unfortunately, she lost a pound. She was close to 22 pounds at one point, but she is back down to 20 pounds now (and now off the growth chart). But, considering all the walking she’s been doing, and her increased activity level overall, that’s no surprise. We just have to figure out a way to get more calories in her. That is going to prove challenging in the next few months. But, she said that Harlie is still well-nourished, so not to worry.

I did get some conflicting information about possible decannulation (getting the trach out) in the fall. The general practice here is to not decann a child between October and April. In the month after decann, if a child gets a cold it could be very bad and it could mean being re-trached. Harlie’s ENT said he does it anytime of the year. Now the dilemma will be who to put in charge of her decann – her pulmonologist here or her ENT in DC? But, I will cross that bridge later. The first step is to get her through this nissen surgery. If it isn’t successful, her plastic surgeon will not do her jaw reconstruction. So, we’ll just cross each hurdle, one at a time and worry about the other things when they get here.

Her pulmonologist just raved about how well Harlie is doing. She said she looks and sounds the best she has ever been, which I completely agree. In every way she seems to be progressing. She’s even starting to sign more accurately. And one of the best things about her progress is that her cough is stronger and she has been able to clear most of her secretions on her own – without the help of the suction machine. This has been absolutely wonderful. We went from suctioning all the time, to just several times A DAY!!! Wow! I am thrilled with this progress. It means that she is stronger, her lungs are growing and it makes our day so much more enjoyable.

So, that’s about it. Thanks for checking in!

Take care,
Christy