Dylann 5 days old

Dylann 5 days old

Monday, August 25, 2014

ENT visit

Never a dull moment for Dylann. She didn't want to sit around for a year waiting to see dr V in Philly I guess! 

Last week she had her 9 month visit to the doctor and she still has fluid in her ears. He said I couldn't push of the ENT any longer. So, today I brought her in and Dylann will have to get ear tubes in both ears on September 12th. So, her first surgery is much sooner than we thought. 

Wednesday, August 13, 2014

Going to philly ..

Ever since Dylann's orthopedic appointment last week the treatment plan has been weighing on me. It just feels like nothing was tried and even without an X-ray we are going right to major surgery that involves cutting out much of her ankle bones.

I then got her note from the visit and it said some things that were not told to me during the visit about her prognosis. So, it prompted me to talk with my AMC moms support group. They all said the same thing, something I have been considering for some time, was to go see dr VB at shriners Philly who is the AMC expert. He was at the conference I went to in July so I had a chance to meet him and hear his approach. He quite honestly performs miracles on these kids I've seen. He helps them walk when all the other doctors say there is no chance.

So, I called today and we will be going to philly between March and June of next year to start treatment. I don't know much more than that. I don't know what we will do in the meantime. We might start at MPLS Shriners to see if they're willing to cast her and do a heel cord release in the meantime. I plan to talk with dr VBs nurse about suggestions.  I don't know how we will make this work in Philly. She could need weekly casting and /or surgeries. We have a lot to figure out. Maybe it means we move there for a short time. Lots to consider. What I do know is that I need to know she was given the very best care and I think this is really it.

Monday, August 4, 2014

New orthopedic md

Dylann and I saw her new orthopedic doctor today. She is absolutely lovely and  I'm very happy with our decision to change. She even asked for my thoughts. What a novel idea. 

What I was struck by is how these appointments just never get easier. It still feels like I'm hearing the information for the first time. I really hope that gets easier. The resident said to me how lucky I am that she has no "other" medical complications with this. Our other doctor used to say that each time and it infuriates me. I know people mean well when they say it and I'm sure some reading this May have said some version of this to me at times. I really do appreciate the sentiment but it doesn't help. I know how lucky or blessed or whatever I am and she is. It's still hard and it still sucks. Ok.. I feel better :)

This doctor is much more conservative on when to treat then our other one although the overall plan didn't change. Here are the facts:

Dylann needs major reconstruction surgery on her feet and ankles and this will happen between 1 and 1.5 years of age. She will do each foot separately to lessen anesthesia time. 

Dylann's knees are ok for standing. She's worried about her right leg quad strength to be able to support her weight so we will have to keep an eye on that. 

Dylann had another X-ray today and her left hip is still very much out of socket despite our hope with craniosacral therapy. Her body has created her own new socket with the current position. It's above and a little out from where it should be. Her normal socket place is just one straight bone now. So the decision is whether it not to treat it. Kids can walk fine with hips out and have no problems as adults. Dylann will however have a left leg that is about 3/4 inch shorter than her right when she gets to full height. She will need special shoes to support her in keeping her hips still in a neutral position. 

Sometimes not treating it causes the hips to tilt as she grows or pulling on her spine causing scoliosis. Then the only option is to treat it. That isn't easy either and would require major surgery at 2.5 to 3 years. She said they have to somehow recreate a socket from her now straight bone. That doesn't sound easy.

So we see her the day after Dylann turns 1 to see if her feet are big enough to start all of this.