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Wednesday, April 1, 2015

New beginnings

So much has happened since I last posted on here.

We moved to North Carolina in December and we absolutely love it here. The girls have a lot more room inside and out to play! Bailey loves her new school and we are getting settled in with new doctors and new therapists. Bailey also got her brand new power chair which helps her conserve energy. Most days she loves it and enjoys being able to be independent without getting so tired.

Last month we traveled back to Maryland for testing at NIH. Bailey had a whole body MRI and EMG studies done. I also had a Cardiac MRI done. Since the gene mutation we carry as been known to cause Cardiomyopathy (heart muscle disease) they wanted to make sure my heart was working okay. Steven should also have this testing done when he is able to take time from work, to make sure his heart is functioning normal as well. I am still waiting on the majority of the results from those tests since her NIH doctor needed to review them and compare them to her previous tests. All I do know is that she has advanced atrophy all over her body. The reason they wanted to repeat the MRI on Bailey was because in December at her annual visit they did a muscle ultrasound and her muscles had looked different than the one that was done 2 years prior.

Since we have been in NC we have seen her new Cardiologist and her heart still checked out the be okay even though her resting heart rate was on the higher end of normal. We will continue to follow up with Cardiology every 6 months as usual.

We have also seen an Allergy doctor which she hasn't seen in quite some time. They are running some blood tests and hoping to get her allergies more under control.

Yesterday she followed up with Sleep Medicine. She had her tonsils and adenoids out before we moved in December and we are hoping that corrected her suggested sleep apnea. The doctor was concerned that her Oxygen levels were pretty high during her last sleep study and said a lot of children with myopathy's need oxygen while sleeping and said that may be something Bailey will need. They want to repeat her sleep study first.

Today she is having her hearing re-tested since she failed a hearing test in her right ear. I personally think it's a fluke since she has NEVER had any issues with hearing in the past and generally hears really well. Tomorrow she gets her eyes checked. In a few weeks she will have her therapy evaluations and see Endocrinology. We're getting current checks on EVERYTHING!!

Next month she will see Orthopedics, GI, and Pulmonary. Both girls have Genetics appointments in August and we are still waiting for an appointment with Neuromuscular/MDA clinic for both girls.

Addison has started her Speech Therapy and we love her new Speech Therapist. She still is considered to have Childhood Apraxia of Speech. She knows what she wants to say and she is trying really hard to get the words out the best way she can. We are looking into getting her into pre-school in August.

Our plate is more than full as usual but we are managing and we are all really happy with our move.


"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."