The Miracles of Laila

We had an amazing appointment at Riley Children’s Hospital a few weeks ago.  Laila was having a swallow study done to see how should would be able to handle swallowing various textures and consistencies of food to possibly be able to start eating by mouth again.  This test was being completely covered in prayer so I’m not sure why I was surprised when I witnessed a miracle right before my very eyes.

Laila and I had been working very hard over the past couple of months (both of us in tears and frustrated with each other SEVERAL times) to try to get her used to having a spoon in her mouth and working on brushing her tongue out of her mouth and getting it to relax and chewing from one side to the other.  All things that so many of us take for granted to be able to automatically do.  Our speech therapist was optimistic for us going into this study but of course I was nervous and hesitant.  My momma bear instinct was coming out and even thinking of letting someone else try to feed her who didn’t know my “tricks” was nerve wrecking. 

Miracle #1 – We arrived and when I told them I needed to coach whoever was going to feed her they told me I would be the one doing it!

Miracle #2 – She opened her mouth for the spoon, closed it around it and swallowed.  Every time.

Miracle #3 – When offered a straw (one of the first times ever) she drank through it just like she had always been doing it.

I cried.  I’m sure the ladies in there thought I was nuts but honestly I don’t think it could have gone any better than it had.  She still isn’t able to drink thin liquid so we have to use thickener in her drinks but in the smallest amount

Ready for Miracle #4???

Miracle #4 – The nutritionst was able to pop in to see us at her doctor’s appointment (which she said she wouldn’t be able to do).  After looking over the swallow study results, she said Laila could start eating three meals a day and only get her formula through the tube at night when she is sleeping!!  Absolutely amazing!  She has to get pedialyte through her tube a few hours during the day to keep up her fluid intake and we get that in during her nap time mostly.

How amazing is all that?!?  My mom was with me for the day and she was such a big help keeping Laila busy while I got all this straightened out with the doctors.  It was neat to be able to share that with her.  It also has been so neat sharing this whole experience with her because she is so encouraging to me about my skills to take care of Laila.  She just encourages me and helps rather than trying to take charge (which is I’m sure what her maternal instinct is :)

So, since I made a list for the doctor to brag about the things Laila has accomplished over the past few months, I figured I’d share them on here too :)

WORDS:

hi, bye, dad, mom, Emma. Ahna, dog. juice, up, down, in, out, on, off (been working on opposites with the DT), five, amen, ni night, more, bath. eyes. giraffe, ball, uh oh, nah, nope, no, yeah, yes, banana, papa, pop, book, apple, April, hat, gramma, nana, light, baby

ACTIVITIES:

sing (her part is “up above” during twinkle twinkle), color, paint, point to eyes & nose, sit up alone for a few seconds at a time, take deliberate steps when held up, clap, fold her hands to pray, splash in the bath, hold her head up, point with one finger, suck her thumb, wave, hug, “blow” kisses, tease, answer yes or no to a question, follow commands like raise arms, cough, laugh, wave, hug, give open hand high five.  And of course EAT!

We still have a long way to go on the eating and some days are better than others but according to her weight checks that I’m doing, she seems to be keeping steady with what she’s doing so far.

MMMM, milkshake!!!

Sometimes we get a little messy but that’s OK :)

Loving on her baby

 

Baby came with to the swallow study and ate her food like a big girl too :)

We took this picture for our PT intern that was leaving so she could see how far Laila came in the 12 weeks she worked with her.

Here is a video of Laila eating when we got home from Riley that night.