Yo soy La Lay

adventures in family, faith, and Down syndrome

Progress – Month 3

on April 1, 2014

(Typing on an iPhone is still terrible. Would someone please tell my husband to stop goofing around on his Spring Break and fix the computer??) šŸ™‚

Our marathon week of doctors and therapies left us with far fewer answers than we were hoping. As always, Tessa continues to progress, but we are still trying to get to the root of what might be making the feeding process so challenging for her.

Medical
Tessa is our little peanut, weighing in now at 11 lb 6 oz. It’s a good gain though, 2 pounds in a month. Overall she looks really great. She has been battling a cough for awhile, but it seems to be clearing up finally. Her clogged tear duct hasn’t resolved itself yet, but the idea of someone sticking a probe into a hole that tiny has me so freaked out that I’m massaging the heck out of her little gland every chance I get. So far, she’s pretty easygoing, so I can do this without much of a fight.

We also took Tessa to see an Ear/Nose/Throat (ENT) doctor for a variety of reasons, but mostly because she continues to make a gaspy, high-pitched squeak on a fairly regular basis. We had attributed this to the laryngomalacia (floppy vocal cords) that we believe she has, but want to be sure that she isn’t aspirating on her food when she squeaks. Unfortunately, the ENT was running late and we had to feed our child, which meant that he couldn’t stick the camera down her throat. Boo hoo. I wasn’t terribly disappointed to delay that experience!! He did notice that Tessa has some fluid in her ears and if it doesn’t resolve in a month with some nasonex, she’ll be having surgery to have tubes put into her ears. If she has the surgery, he’ll just do the scope at the same time. If not, I’ll have the joyful experience of trying to hold our squirmy worm still while he does it. Eek.

Physical and Developmental Therapy
The bobble head is still present, but Tessa is showing great improvement! She loves to look over my shoulder, so she practices holding her head up a lot. Just like Ellie, she loves to see what is going on in the world around her. We have gotten better at getting the arms to come to her center (midline), but it is still a battle. We have expanded our use of kinesio tape to be used not just on her abs, but also on her chest/pectoral muscles. It looks goofy, but it seems to be be working well to help her lift her head and chest up. Now that we are teaching her to use the correct muscles to roll (not the head and neck), she can get up onto her side pretty well, but does not flip. This might seem like she has regressed, but it’s actually much more important for her to use the right muscles! We also have a pair of “hip huggers” for Tessa to wear. They are tight pants with the legs sewn together (like a mermaid fin) so that her hips align better. Unfortunately, the wiggly legs have found a way to wiggle right out of the pants, so our PT is working on making a new pair that she can’t get out of!

Developmentally, we are getting lots of smiles and coos from our sweet girl. She has been very vocal for the past couple of weeks and I am loving it!!! While her absolute favorite is still the ceiling fan, she mostly prefers to look at people and looks for faces to match the voices that she hears. We are now working on getting her to track 180 degrees (follow an object all the way from left to right) and would like to see her show more interest in grabbing objects. The rough estimate is that she is about 30% delayed right now. Not huge!!

Speech
On a positive note, I can get Tessa to eat about one ounce a day in an upright position. One ounce out of about 25 per day sounds terrible, but please understand that two weeks ago, just putting the bottle in her mouth while upright caused serious gagging. I’ll take the small victory.

I’ve been back to work for two days now. It was so nice to have such a warm welcome back from my students and coworkers. They were actually so nice that my perfect April Fool’s Day trick was a total flop!! I had planned to tell my classes that Tessa had a really bad day at day care on the first day and that I was going to take the rest of the year off to be with her. Every time I tried to work up the courage to joke with them, I couldn’t do it!!! It really is good to be back, but I do miss these girls (and guy!) while I’m bringin’ home the bacon…

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4 responses to “Progress – Month 3

  1. Deborah says:

    Your girls are so cute!

  2. So sweet!
    Thatcher had a blocked tear duct too, I think it was gone by about two months, it sounds crazy, but breast milk in the eye! Let it sit for a few minutes, then wipe it out! Magic!
    Your girls are so sweet!

    • Maggie says:

      Thanks! šŸ™‚ I’m not nursing, so I don’t have any breast milk for her, but I think the massaging is making it better! Ellie also had it, but I feel like it cleared much more quickly. (When will I stop this comparing game???!!?)

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