Saturday, June 9, 2012

Erie, adenoids, and hip surgery

Ember had her appt. in Erie. I am happy to say that I got what I wanted out it. I didn't expect miracles, I just wanted someone to say "they would try". We learned that for now we are on the right track and need to concentrate hard on gaining enough flexion in her elbows - either by splints or surgery - and Ember also needs to work on finger strength. Her fingers are very weak, and they are likely permanently fixed in a straight, rigid position. Dr. Cermak in Erie will consider Ember for a muscle transfer down the road if she develops enough muscle elsewhere to even transfer, and if she develops enough strength in her fingers to be useful. I am relieved. I wanted this option for Ember. Her drs. in Philly just don't want to consider that for her for various reasons so I'm glad to at least have another opinion and option for down the road.
Then, this past Thurs. Sienna had surgery to remove her adenoids and also to look at the tubes in her ears to see if they were ok or needed replacing or even whether she needed them at all. The adenoids went great. Ears not as great. 1 ear still had the tube in it, the other was gone. However, each eardrum sports a pretty big hole. One of them even referred to as "gaping". This poor girl can not catch a break on her ears. The ENT isn't sure what he wants to recommend for her yet. He says it appears that these holes are not going to heal on their own - that Sienna's body likes the holes being there. Big holes like that greatly reduce her hearing. She already has hearing loss. This is sad for me - children with down syndrome have trouble with speech anyway. They can be hard to understand. Lets face it, if someone speaks clearly society is much more likely to give them a chance. Clear speech = higher intelligence to many people. How can Sienna ever be expected to learn proper speech patterns if she can't hear well? Ugh. So, when we go for a follow-up we'll see what is offered.  We're waiting on approval her hearing aids.   Why we need approval is beyond me - the aids cost roughly $4000 and insurance pays a whopping $500.   Will the aids even help?  There is also surgery to repair the holes. It is a big surgery though and there are risks. What if we close the hole and she accumulates fluid again? Put another tube in and be back where we are today? I'd love to hear from anyone with experience with this
Lastly, Ember had a surgery date for her hips. I had hoped summer would be "quiet". At least as quiet and having 5 kids - including 2 toddlers with special needs can be. Nope. July 19. Ember will have her anterior hip releases in Philly on July 19.


  1. Praying for both your sweet babies. Hugs, Grace

  2. You are a wondrous pillar of strength for these precious souls. What a shining example of grace, love, and courage. I am humbled.

    I love you,