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Tuesday, April 24, 2012

It's been awhile!

It's been nearly 2 months since my last blog post, we have been so BUSY!

Bailey ended up in the hospital for 4 days shortly after my last blog post. She was very sick with a cold but we had trouble keeping her fever under 104 and with her history of metabolic crisis they decided it would be best she stay. She ended up being just fine and recovered well!

She had an Upper GI done at the end of March to look at what may possibly be causing her to choke. All that showed up but was several episodes of reflux! So she's been steady on her meds since Feb. and the choking has improved so far! *fingers crossed*

Bailey & I took a nice Spring Break to NC, it was nice to forget about doctors appointments and procedures for a week! Bailey really enjoyed being there as usual!

Shortly after we came back from NC it was surgery time! On April 13th Bailey had an open muscle biopsy on her right leg. They took 4 pieces of muscle and a piece of skin to be sent away for several different tests! The surgery went well! She was admitted the night before for overnight fluids and able to go home 4 hours after surgery was over! We will get SOME of the results in June and the rest as they come in! Hoping for answers.. any kind!

3 day's after surgery Bailey had her follow up appointment at Shriners in Philly and we met with a different hand doctor there as well. Dr. vB built up the bottom of her right shoe to try and train her stubborn foot to stay straight along with the small brace she wears. It works well until she is shoe-less! Her left foot is still looking pretty good!! I loved the hand doctor he was very informative and told me things I NEVER knew! There are several surgical options for Bailey's hands and 1 for her shoulder that could be done to increase her functionability BUT her muscles are far too weak that he thinks it would end up being more harmful than helpful! He said she may eventually get strong enough for them but if not she will get stronger as she gets older! He said she is doing wonderful even though there are things she can't do right now and to focus on the positive! I really liked him and will see him again in a year!

Bailey has been having evaluations for outpatient therapy at Howard County General Hospital lately! Ever since September when she quit getting home services and only receiving services at pre-school she hasn't shown significant improvement and therapy plays a HUGE role in how she gets around and does things in her everyday life. So I took it upon myself to find her additional therapy and finally it's done! She will be getting PT, OT, & ST Tuesday's & Thursday's indefinitely! I'm SO happy! She will still get her services at school as well!

Thursday she has her post-op check up, so hopefully her leg is healing well and all is good in that area!

Other than that Bailey is doing pretty well! Still going to pre-school when she doesn't have to miss days for appointments or being sick(which is constant). She is still her sassy almost 4 year old self, growing up fast and very anxious about becoming a big sister in July!

Sorry for the book, I will try not to leave so much time inbetween posts!

"Fall into me, my arms are open wide and you don't have to say a word cause I already see that it's hard and you're scared and you're tired and it hurts and I wanna be the one you reach for first."