September Out and Abouts
I am happy to report that Faith has been healthy the last few months!! We are hoping this pattern will continue throughout the fall! Faith has lost some weight so we are working hard to get her weight back up. We had to increase the volume of her tube feedings since she is still not able to eat enough by mouth. We recently started a new therapy that we are hoping will help with her eating and speech. The new swallowing therapy incorporates vital stimulation. This involves electrodes being hooked up under Faith’s chin to stimulate and help work the muscles involved with swallowing. Faith is fed orally as the stimulation occurs. The therapist is also working on the muscles in her face and neck to open pathways and increase blood flow. Faith is tolerating the therapy very well and is very cooperative. The same struggles Faith is having with eating are most likely related to her speech delays as well. We are currently doing this therapy only once a week. Many children do more aggressive treatment which could include 3-5 sessions a week. However, it has to be done in a hospital setting and the time involved and cost of the therapy would make it very difficult for us to increase frequency. We hope to get a better feel for her progress in the next few weeks and determine what our next steps will be.
Faith is struggling quite a bit with excessive fussiness and often times screaming that lasts for long periods of time. Faith has always been a fussy baby as she has so much going on medically, physically, and sensory wise. However, I am concerned about some of the recent issues she has been having. Mornings seem to be the toughest time so I am wondering if she is experiencing discomfort from her overnight, continuous feeding or if there is something else going on. Patience, patience, patience as we try to figure it out!!
We have been enjoying the nice weather and getting out and about with Faith! Here are some pics from a few events:
Society for the Blind and Delta Gamma Center Family Festival
Faith and daddy with Fredbird
Faith and daddy with a bear from the Sensory Safari exhibit
Faith showing off her beautiful smile!!
Having fun in the bounce house!!
Family Day at Daddy’s Work
Faith and daddy with the Clydesdale
Faith holding on to Mama as she is being pulled by the donkey!
Hope everyone is enjoying the start of fall!
Keeping the faith,
Bridget
