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  The Cain Foundation Forum  Discussion Topi...  Personal Storie...  Isabelle :)
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New Post 2/8/2013 3:43 PM
  sparklybunny21
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Isabelle :) 

Hello! We found out when Isabelle was 1 day old that she possibly had BOR. We were in the hospital room and my husband was holding her while the nurse helped me to the bathroom for the first time(Csection #4) and it had been a while since he'd held a newborn so he didn't have a great hold on her wobbly head and it tipped back a little and he found the Branchial cleft cysts. He kinda freaked out and started asking the nurse if someone had accidently poked holes in her during her birth and the nurse and I just laughed at him and said..umm..no they don't do that. LOL

He was very insistant there were holes with stuff coming out so the nurse left me there and looked at her...came back in and helped me back to  bed and then said she needed to go find the oncall doctor. Then we had a lot of people in and out of our room. It was also learned while they were checking her out that she has Laryngomalacia too. Her Kidney's were checked at birth and they were shown to be normal but 2 deviations smaller than normal. We finally got to see the Genetics doc in March of 2012 and start the testing to know for sure and got the results in July of 2012 that she for sure has BOR. She had passed her nb hearing test and the first ABR that was done when she was a month old but then failed the second ABR that was done when she was 7mths old....which then was followed with tubes to see if that would help. It didn't so they retested her in Aug. and she failed it again. She was dx'ed with bilateral sensonural(sp)hearing loss that is progressive. She was fitted with her temp HA's in Oct. of 2012 and we just picked up her HA's in Jan 2013. She also had her kidney's rechecked over the summer of 2012 and her left one was back to normal size and her right is now only 1 devation smaller than normal.

She still has her cysts(which are starting to drive me nuts...lol) They still constantly leak goo and her ENT does not want to remove them until she is 3. I am pushing for age 2 to get it done sooner. She had her adenoids removed in Sept 2012 due to Obstructive and Central sleep apnea (which took care of the OSA) but he refused to do the surgery to remove the cysts then. It would have been nice to get it all out of the way with 1 surgery but he wouldn't do it. Oh well...we'll get there eventually.

Her genetics doc told us that her "version or type" of BOR is so rare that there are only 2-3 documented cases  of it but zero info anywhere that he can tell us what to expect down the road. She's had lots of issues with muscle tone and was delayed in sitting up and crawling and now is delayed in pulling up and walking. Her ankles are very weak so she is now in AFO's part time to hopefully help with that and we had hopes with PT that she'd be taking steps by 16mths(on the 21st) but she is no where close to being able to do that yet. and since there is no info on her BOR we have no idea if this is all tied into it.

But despite all of this and all the crap she's been through over the last 15mths she is one of the happiest babies yo'd ever meet. Always smiling and so so very sweet. :)

 
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