Swallowing/feeding update

[Guest guest]

Zipporrah had a video swallow with an OT at Mayo yesterday and it

showed issues with liquids in particular. When swallowing liquids she would

hold it temporarily in her throat for approximately 3-5 seconds before

thoroughly swallowing it. The OT said that this could be a big potential

for aspiration problems. They also fed her applesauce which she seemed to

handle, but only did about tiny 4-5 bites and the OT wonders with fatigue,

illness, or etc. if the food could also be problematic. They felt she was

protecting her airway enough though with the applesauce that I could begin

to try feeding her some daily. The told me to stop if she began to cough or

gag much and also not to force her but only give her what she accepts

readily so she has some control over it since it is a scary issue for her.

WELL... last evening and this morning I tried to feed her Gerber first

stage Oatmeal with applesauce baby food and found that within 2-3 bites both

times she started to cough and have difficulty dealing with it in her mouth.

This was a thicker consistency than she had during the swallow study and

now I am wishing they tried different textures and thicknesses to see how

she did with them. Also, last night she was coughing and more gaggy during

her sleep than usual and I am wondering how safe it really is for her!

I plan to discuss this with her GI and physiatrist as well at the OT

that did the study to let them know what she is doing to see how safe it is

or to find out what types of baby foods to try other than applesauce. (I

know it is thinner than what we used for sure!) But then liquids are hard

for her too, so it seems like there may be a fine line of safety versus

dangerous for her!

Darla: mommy to Asenath, Zipporrah, Luke, Leah, Rachael, Isaac, Tirzah,

Kezia, and Marquis

Darla: mommy to: Asenath (4) Mito, CNS Vasculitis, strokes, migraines,

seizures, G-tube, hypotonicity, disautonomy,SID, dev. delays, asthma

Zipporrah (7 mon.) Mito, strokes, SID, G-tube, asthma, trach issues,

disautonomy, hypo & hypertonicity, migraines