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Wednesday, September 10, 2014

Life keeps going and going and.... going


Just wanted to update everyone on things that have been going on in the Breeden house!

Since my last post in June we found out our whole clan will be going back to NIH soon (no date yet) for testing and a big meeting with Dr. Bonneman. They will be doing Cardiac Imaging (MRI) on Steven and I and Echo's on both girls as well as some other testing. I'm interested to find out what Dr. Bonneman has found out about the rest of the results of Bailey's whole exome sequencing. I'm pretty nervous. This will be our Third visit since 2011 and I don't think the nervousness will ever go away.

We have been very slowly trying to wean Baily off of her overnight feed AGAIN. Things had been going very well until this last week. She overheated at a school function on Friday and her sugars have been off ever since then. She has also been bruising pretty badly (11 on just one leg) so I was getting concerned if her body was having trouble bouncing back due to the weaning. For some reason every time we try to get her off of this feed her body goes into complete shut down. This time has gone much better but now we're starting to worry that the overheating put her body in defense mode. So her GI suggested we bump her up 20 more ml's for 3 weeks and hopefully her body will stabilize and then we can finish weaning her by 5ml's a week instead 20 like we were doing before. Hopefully it works out. She really needs to get off of these feeds. It is starting to really affect her weight. We don't want her to be overweight especially with muscle related issues. Her Pediatrician ordered blood work to try to get to the bottom of her bruising. So we will try to get that done by next week.

Bailey started 1st grade August 25th and she LOVES it. We are still working out little minor issues as they come along but so far the start of the school year has been much more pleasant than last year. Hopefully after she gets her power chair in October she will be able to go to school longer than 2 1/2 hours a day. She has been really disappointed in leaving early this school year. I can't say I blame her but at the same time as a Mom I can't allow her to push herself to the extreme and crash at school. Walking around the school off and on for 6 1/2 hours would be completely detrimental to her health. Fingers crossed that the power chair is a huge help for her.

In other news! Addison had a second opinion Speech Evaluation on Monday at the Children's Outpatient Center in Laurel. Bailey's Genetics doctor recommended Addison having this evaluation to try to determine what she really needed and what may be the cause of her talking the way she does. The evaluation went really well. Addie was such a good girl for cooperating in such long testing with a stranger. The Therapist believes Addison may have Apraxia of Speech but she can not be officially diagnosed until after 3. Apraxia of speech is a motor speech disorder. The brain has trouble moving the body parts needed for speech. So she knows what she wants to say but her brain has difficulty coordinating the muscle movements necessary to say the words. I believe that's pretty darn accurate. She knows exactly what she wants to say and she tries so very hard but her words come out as only the sounds of the words or only vowels come out. So she is starting Speech Therapy there on Monday morning and she will still get Speech through the Howard County Infants and Toddlers program as well. They also want her to have a formal oral motor/feeding evaluation as well.

Bailey has follow up appointments with Endocrinology, Cardiology, Developmental Pediatrics(both girls), GI, Orthopedic, and a Sleep Study all within the next month! Plus NIH and Addie's oral motor evaluation whenever we have dates for those. Hopefully nothing but good news comes from all of those appointments.

I guess this has sort of became a blog for both girls now!

There is NEVER a dull moment in this household. We're just trying to take things as they come and deal accordingly. Sometimes that is much easier said than done!

As always thank you to those who continue to support us on this journey, it sure is a wild one!

"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."