Crunch Time

Charlie’s progress has plateaued once again. She is having trouble learning to walk and difficulty swallowing. Due to these new developments, our schedule is packed even more so than usual.

For about the past week, Charlie has been heavily leaning on a kid sized chair as if it is a walker. It was her own idea. I am impressed with her ingenuity. Her therapists suspect the reason she is not cruising or standing on her own is due to limitations in her ankles and feet.

To address the issue, she has an appointment with the developmental pediatrician early next month. He will decide if ankle foot orthotics (AFOs) are  appropriate. If so, she will be fitted for them while we are there. I do not know much about AFOs (I need to read more) but what I do know I learned from this blog post (thanks again, Tatum).

Whether AFOs are the answer for Charlie or not, it is time to get this baby walking. She has been telling me for a while that she is ready (and screaming in frustration when her attempts fail).

Next, as my regular followers know, feeding has been a enormous frustration for us since the NICU. Charlie has battled allergies, reflux, motility issues, an oral aversion, and now, difficulty swallowing.

Charlie’s speech therapist stated that she has a delayed swallow (I need to read more about this as well). She frequently chokes on high flow nipples and solid foods. It is strange how she pushes her chest out and appears to bear down while eating solids. She will choke, gag, and sometimes vomit while eating.

Charlie has a swallow study scheduled later this month. Hopefully, this will uncover some of the mystery behind her swallowing difficulties.

In the meantime, she has an appointment with a nutritionist next week. This appointment is to guide us in keeping Charlie’s intake well balanced. Currently, I am doing the best I can with limited knowledge and a baby that will no longer eat formula but can not eat enough solids to sustain herself. My hope is that the nutritionist will have some useful ideas.

There you have it… crunch time.

There are many appointments with doctors, therapists, nutritionists, and tests on my schedule this month. In addition, we are stocking up on sanitizers and updating our vaccinations as cold, flu, and RSV season begins.

Fingers crossed that all goes well.

cocoally4

This is another amazing picture taken by Monica DeMariano.

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About Rebecca Wood

In May 2012, my pregnancy ended three and a half months early due to severe early onset preeclampsia. This is my collection of thoughts and media. It is an attempt to document and discuss our experience of navigating the post NICU world. View all posts by Rebecca Wood

One response to “Crunch Time

  • judy

    Feeding issues are really hard. I think I struggle to accept Agnes’ feeding trouble more than I struggle to accept her trach! I hate the g-tube, but at least I don’t have to see her work so hard and fail at eating orally anymore. I hope you can find out some answers for Charlie! I think the swallow study will be very helpful for you.

    Like

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