Well, I was looking forward to hearing what Dr. Lubicky(pediatric Ortho Surgeon) had to say regarding Ellie's C-Spine. Unfortunately, the appt had to be cancelled as he was in surgery. We are rescheduled for next month so we'll see what happens then...I guess... I really don't want him to even assess Ellie, b/c frankly, I don't care for the guy. BUT, if she goes elsewhere for the surgery (which is what I'm banking on), she will need a ortho surgeon who is close in proximity that would/could follow up on her. This is the sole reason I wanted to get her up to see the surgeon in Indiana. The best in the field of pediatric ortho and who has tons of experience with dwarfism is in Delaware (Dr Mackenzie). I'd rather her see the best in the field!!! Am I asking for too much???? Even if it requires lots of money, I still feel this is what is best for my baby. Her daddy doesn't agree....and this is what sucks. Not that he doesn't want what is best for her--he is an engineer...need I say more?
Here is the deal: her neck (Cervical spine C1 and C2) is a bit "loose" and she will more than likely require a Cervical fusion in the future. Kids with SEDc usually have had their 1st fusion by the time they are 4, or so this is what I've been told. It scares the hell out of me! But, I am my child's advocate so I will do what needs to be done for her. If this requires me taking her to the best surgeon that is hundreds of miles away, then I will....and I am planning on it!! This is causing major disharmony in my marriage, unfortunately. Talk about stress.....
Baseball Bling
1 day ago
3 comments:
Oh, I really feel for you here! That's really tough! Hopefully you will have your wish! We'll be keeping Ellie in our prayers! Dr. Ain at John Hopkins also has good experience with spinal fusions. One of Sonya's CD friends had all 4fusions done by the time he was 9 by Dr. Ain. I don't think Hopkins is really all that much closer to you though! Big hugs to you all!
Hey - you have an engineer reading your blog! :) I'm sorry that this is causing you so much stress. Hopefully, you will get your wish of going to Delaware for the surgery. We'll be thinking of you guys and praying that everything works out for the best! My hubby and I always say how grateful we are for where we live now that we have Simon - we're about 35 miles from Johns Hopkins.
It is tough when your hubby and you don't see eye to eye on certain things. I am with you though. I would get the best of the best. I sure hope things work out!
Post a Comment