Braces, Swallowing, and Speaking

We’ve had a pretty productive week for the birthday girl. Now that the weather is warming up and we’re getting out of peak sickness time, we’re going to attempt a more intense therapy schedule.

First on the list is physical therapy. Although Evie is leaps and bounds ahead of where we all thought she would be, she still does have low muscle tone and a little bit too much flexibility in her ankles. She is at the point now of wanting to walk (she pulls up to standing and is attempting to cruise) but she just doesn’t have the strength or ankle support she needs. The therapist and pediatrician both agree that AFOs (Ankle Foot Orthotic) are the way to go. She’ll get molds taken of her feet and the braces will be made in a few weeks. They will be more like little shoes that just come up a little ways past her ankle. Evie has the tiniest feet ever, so it will be interesting to see how it all works. I’m really excited for her to get these! I think it’s going to make such a difference for her as she learns to walk over the next year or so.

We’re also hoping to do some more intensive feeding therapy. Evie currently doesn’t swallow at all on her own. We can force it sometimes by giving her her pacifier, but not without quite a bit of trauma for Evie. At this point, she rarely even swallows her own saliva. We’re pretty out of our league with trying to teach her how to swallow. I mean, who really thinks about swallowing? We’re not in any rush though, since we have every intention of keeping her gtube as long as she’s going through surgeries which will be at least another 3-4 years. She’ll also probably eat better than all of us since we’ll begin adding blenderized foods to the breastmilk she’s been getting. Before we start the feeding therapy, however, we’ll need to do another swallow study to make sure that when she does actually swallow, it goes into her stomach and not her lungs. She passed the last swallow study she did, but we want to make sure her muscles have not weakened over the winter.

Lastly, Evie has been cleared to try a speaking valve! This type of valve allows her to breathe IN through the trach, but then forces her to breathe OUT of her mouth, allowing air to pass by the vocal cords. I’ll be honest and say that I am expecting this to be a complete failure as there’s a possibility the scarring in her trachea will not allow her to get the air out her mouth. I’m actually very okay with this possibility. A few months ago, I would have been terrified about it not working and would have cried some big tears about not being able to “hear” my baby, but now? I HEAR her. I can hear her laugh, her cry, her giggle, her babbling, all of it. For not being able to vocalize, she’s actually incredibly noisy! I will desperately miss all of the creative ways she talks to us. I will miss her laugh. Oh, how I’ll miss her laugh! A few months ago, I wanted her to get the speaking valve for ME. So my need to hear her could be filled. Now, I just want it for HER. Getting the speaking valve sooner rather than later will help her develop speech easier, which would be one less setback.

So a good week overall! She’ll be having a lot of changes in the next few weeks and months with her hearing aids, foot and ankle braces, speaking valve and new therapies. Please pray for the swallow study to go well and that she tolerates the speaking valve well.

Thank you all for the birthday wishes and beautiful comments about her birth story. We are so blessed to have so many people praying for our Evie and cheering her on! We had been planning a get together with some friends for awhile and decided to make it a little party for Miss Evie, so I’ll be sure to post lots of pictures of the birthday girl in a few days!


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