Riley Update

It has been WAY to long since the last time I posted an update and I am so very sorry about that. So here is the abbreviated version of what had been going on with little Riley since the last time I blogged . . .
Over the winter Riley did a very aggressive type of speech therapy called VitalStim. It is an treatment for Oropharyngeal Dysphagia that uses electrical stimulation with exercises in order to strengthen the muscles used to swallow. The therapy was hard but little Riley handled it like a champ. At first most of the sessions ended with both me and her in tears they were so tough but after a while with some creative encouraging and distraction techniques Riley got to where she would just breeze through the sessions. And we saw AMAZING results! Riley is actually swallowing much more frequently now! She is protecting her own airway more than before and we have also been able to work with her on swallowing a few liquids like chicken broth or flavored water. I am not gonna lie, I balled my eyes out the first time she swallowed something in her therapy session luckly her therapist is amazing and just praised God right along with me. We are currently taking a small break from the treatments just to give Riley a break from all the hard work and because they are simply too expensive for us to keep up year round but we hope to start back in the fall.

Another big update . . RILEY TURNED THREE THIS FEBRUARY! We were thrilled to celebrate this big milestone with her and rejoyce in the fact that doctors are not always right! Each birthday we celebrate with her serves a such sweet reminder that everyday with her is a miracle and one we never knew that we would have. This year for her birthday (through the generosity of some amazing people) we were able to take Riley in her new wheelchair to Disney World! Riley has become increasingly obsessed with Disney princesses and she had an absolutely ball! The look on her face when she met Belle (from Beauty and the Beast) still makes me tear up when I think about it. Ayden (the worlds best big brother) glady opted for the "little girlie" rides and was always the first to suggest we go visit Tinkerbell instead of Space Mountain. I have posted some of the pictures to her flicker.

One more major update is that we are currently working very hard with her Neurologist in Gainseville to get a definative diagnosis. We have made several visits down there resently and still have a few more procedures and test that we will be headed back down there for over the next few weeks. The testing is stressful and hard on Riley but we hope it will all pay off in the end with giving us the answers we have been after for years now and also helping us to better formulate a treatment plan. We are also hoping that if we are able to get a diagnosis that will help us be able to qualify for disability assistance. But it is a little bit of a catch 22 cause if we had a diagnosis then we could get assistance more easily to help with her medical expenses but in the process of trying to find a diagnosis, we are increasing her medical expenses exponentially.

Well I gotta run, Riley is waking up from her nap. Sorry this post is sporatic and all over the place but I just wanted to try to catch up on how our little Rye has been doing. I will post a better update soon.

Please keep Riley in your prayers she has pnuemonia right now and we have been managing it at home ok (no hospitals thank goodness) but we are ready for her to be healthy & to be back to playing and having fun.

Thanks!
Love,
Becca