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We our back from our medical trip to Boston and are glad to be home. We spent about a week up in Boston and although we did not find the answers we were looking for, it was one of the best things we ever did.
The hospital and staff up there was amazing. We saw about 15 different doctors and specialists, who reviewed her case and records thoroughly and were very patient with the time that they gave us.
After two tests: a stomach emptying scan and an x-ray, the doctors told us there is nothing seriously wrong with our little girl. Although the things she has had and the symptoms she has dealt with aren’t normal, they can’t find a cause that would point to anything serious being wrong.
This is great news! So what is wrong with her? The basic synopsis is that she has sensory issues that cause her stomach to be more sensitive than most and that are causing minor developmental delays. We are going to be continuing therapy per there recommendation: feeding therapy three times a week, occupational therapy for sensory issues, and physical therapy for the delays including rolling over, crawling, and a foot issue that may need orthotics to be corrected in the future.
They also believe that because she’s had such a rough time so far, (aspiration, failure to thrive, surgery, etc.) that she just needs some time to catch up. Since her stomach is so sensitive, they put her on a special pre-digested, hypoallergenic formula called Elecare that you can only get by prescription. Thanks goodness Tricare, our insurance company will cover it!
We also found out that she does not have any swallowing issues, meaning she can start eating food by mouth, rather than primarily through her G-tube. This is easier said than done, because she has gone so long without eating by mouth she needs to re-learn how to eat and she has to want it. Right now she is doing ok with baby food, but she is not very willing to take a bottle by mouth. We are hoping in time and therapy, that eventually she will be weaned off her feeding tube.
I wanted to give a quick update, and thank you all for your patience while I’ve been away from the blog off and on during the past 6 months. Thank you for all the encouraging comments and emails, and most of all thank you for your prayers. You can keep up with updates on Elizabeth HERE on Facebook.
Our Trip to Boston Included:
Pet Therapy with a dog named Tucker.
Lots of fun toys to keep busy.
A two hour emptying scan.
A wonderful student nurse named Dana.
And a hospital bubble bath!