Natalie's feeding tube is officially out! January 12, 2012 the UNC CH doctors, therapists, and nurses finally agreed to take it out after 6 hours of deliberation. She had her tube for approximately 6.5 months. Our understanding is that it is rare for a child to have a feeding tube under a year's amount of time. Natalie has done exceptionally well with her eating progress. She's working with a speech therapist (who essentially is a feeding therapist). She's worked up to 1.5 jars of baby food a day which puts her right on target for what a baby her age should be eating. She has a special feeding utensil that helps stimulate her facial muscles to encourage her to eat. Typically she take a 30 minute nap after each meal because it's an exhausting task.
We also received the results back from Natalie's EMG. As a reminder, an EMG tests for the reaction between the nerves and the muscles. It tells whether there are delays, weakness, or slow reactions. To our disappointment it was another inconclusive test. The doctor who performed her EMG said he was not able to get enough reaction from her limbs and was not able to get any reaction from her facial muscles. He is known as one of the most experienced and best doctors in the region for performing and reading EMGs. He said that Natalie is the first patient he has ever had that he was not able to get some conclusive results. Once again Natalie stuns a doctor. :)
However, we go to visit her neurologist on Monday February 6th, who will be prescribing Natalie 3 different medications. Originally she was not going to try Natalie on the medications without a conclusive result from the EMG, but after further research she found that they are be-nine. Be-nine meaning there are no side affects if they do not improve her muscle functions. We will got through a testing period to see if any of these improve her muscle memory/ functions. We should be able to see a difference between 1-9 days per medication. Hopefully she will start on one of these next week.
As far as growth stages: (Natalie is 8 months old)
- Natalie's upper body, neck, and head strength is around a 2 month old.
- Her lower body strength is around a 4 month old.
- Her cognitive and feeding is around an 8 month old.
Major milestones since the last time we talked:
- Turned from her belly to her back twice!
- Eating baby food, fruits and veggies.
- Putting toys in her mouth.
- Can accurately grab and pull your earrings out. (sadly I know this from experience, haha)
- Has attempted once to push up with her arms while on her tummy.
She's a beautiful growing girl with a wonderful big brother! Thanks again to all of you for your continual support. It helps Lyle and I deal with the time between each blog.
