Sunday, August 23

Here's the latest on Taylor.....

Hello all! Lots are happening in the Whitehead house! Taylor has seen the cardiologist, neurologist, gastrointestinal doctor, had a swallow study, and also had a 6 hour EEG performed on her in the last 6 weeks. Tanner turned 4 yesterday...and Jeff and I started back work on Monday!!!

At her visit with the cardiologist, Taylor had an echo that showed slight improvement. Her numbers were up from 35% to 41%. She doesn't see the cardiologist again until mid November. Taylor also traveled to Duke to see the GI doctor and the neurologist. The GI doctor changed her barb button to a Mickey button. She was very sore for a couple of weeks, but now her tummy is finally starting to heal.

During her visit with the neurologist, she had multiple seizures so they set up a 6 hour EEG to determine what kind they are. We went back and had the EEG and they determined that it was abnormal and she is having seizure activity called Infantile Spasms. So, they increased one of her seizure medications(topomax). She continues to have seizures, however they have decreased.

During her swallow study, Taylor was able to swallow the thicker liquids (such as the level 2 baby foods), but aspirated the fine liquids. They gave us the green light on trying to feed very small amounts of baby food. She typically takes between 6-12mls of baby food per day. She does not initiate eating by opening her mouth so we use a small syringe to put the food on the back of her tongue. You can definitely tell she moves it around with her tongue and she is swallowing it. We will continue to take baby steps and hopefully see progress overtime!

After a lot of notes from our doctors and documentation on our end, CAP-C decided to give Taylor back her nursing for a two month trial basis! We have them 5 days a week 10 hours a day. THANK the LORD!! They will look at her nursing notes again in early October to determine if she can keep her nursing or be given back a CNAII. This has been a big hassle trying to figure out who can best take care of Taylor. Personally, Jeff and I would much rather have the nurses we have now. They really do a phenomenal job stretching her and giving her lots of cuddling time. They are on the ball and constantly assessing her needs.

Well, that's it in a nutshell! Jeff and I are back at work and look forward to the year ahead! Thanks for continuing to pray!

Love,

Tammy

God Bless

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