A Scope & A Screening: Robbie Update

First off, if you haven’t heard the good news Robbie’s genetic testing came back all normal!  They test for all the main things they know usually are wrong and of those things he is in the clear :) 

Due to the health and eating concerns we had about Robbie our Dr referred us back to the GI Robbie had seen a few times in 2011.  After talking with him for a bit he decided we should change his reflux meds – hopefully that will make a big difference.  Secondly he decided to do a scope, so that is now on the calendar for later this month.  Robbie will be put to sleep then they will scope him, taking samples and video along the way.  The Dr is checking for 2 main esophagus problems that could be causing his refusal to eat and seeing how his stomach and intestines look.  Pray about him being put under since it is always risky with him having a muscle disorder. If all that checks out fine then the Dr will put us in touch with a feeding intensive that Arnold Palmer runs. It’s hard to get into and I’m not sure how I feel about it but we may be looking into it.  I’m amazed it has taken this long for anyone to mention that the program is here in Orlando, I’ve read of them but figured we had none in the area since it was never mentioned.

Also on the calendar is an Autism evaluation/ screening.  Tomorrow morning actually!  I know exactly how I feel about this and I am dreading it. We won’t get the results until the follow-up appointment and since we are insisting on seeing a Dr instead of a nurse for it we are still waiting for an appointment. Currently they are saying October!  Our alternative is to call a few times a week asking if there are any cancellations and get lucky. PRAY we get in MUCH sooner than October!!!!!!!!!

In the mean time we LOVE his new OT! The down side is that she is only temporary, through the summer.  Unless we can talk her into doing home therapy or evenings. Please pray big time that we can continue with her, the difference has been amazing, I feel like we are finally getting somewhere and we've only seen her 4 times.  She is absolutely wonderful with him and we are able to translate his therapy really well into the home :D

Last bit is that we are waiting on his speech therapist to start coming back to the house since the place he gets OT couldn't line up that and speech on the same day and 2 trips a week to Waterford is out of the question.  She said she will be able to we just have to wait for an opening in August or so.

If you are still here thanks for reading up on Robbie and thank you so much for all your prayers!