Some of you may know that we head to Delaware’s AI DuPont Hospital for Children every 6(ish) months for Addie’s geneticist and orthopedist. We’ve seen Dr. Michael Bober and Dr. William Mackenzie (who Addie’s come to call Dr. Kenzie) since she was 6 months old. I love knowing that they are following her and have SO much experience with dwarfism.
There are some things that are a given that we will be tracking- like her ears, for which she’s had 2 sets of tubes and her adenoids removed (we see her ENT this week, actually)- as well as her sleeping habits (currently, she sleeps like the dead). We can see that the decompression surgery did wonders for Adelaide because she is jumping (BOTH feet) and running and climbing, but more than that, she’s not screaming in her sleep anymore and she doesn’t get headaches! We didn’t initially attribute those things to spinal compression because she’s so physically strong, but seeing her improvement post-surgery has shown us that we made the right decision and that Adelaide was having atypical symptoms.
The one thing we are looking at are Adelaide’s legs.
While her back is amazing and not even on the concern radar for either of her doctors, Mackenzie is pretty sure Adelaide will need surgery to straighten the bowing. For Addie, she’s bowed significantly on both legs- but more so on the left. She has thrusting at the knees, and while this isn’t causing damage or pain right now, it very well may in the future. The future being anywhere from tomorrow to a decade or more. For us, surgery is only necessary if there is pain and/or deterioration of the joints and bones. We are not going to go ahead with surgery for cosmetic reasons… as Adelaide is, clearly, perfect!
With all of this information, we are pleased to no longer being doing bi-yearly X-rays for Adelaide’s back, just her legs, and that her reflexes and development are right on track. We are going to go ahead with another sedated/intubated MRI this February to get a baseline since her surgery, as well as monitoring her leg pain (IF any). Lastly, due to her inactivity post-surgery, Addie wasn’t as mobile and that is something we need to be on top of. Children and adults with dwarfism are at a disadvantage for weight because of the amount of pressure and damage any extra weight can do. For Addie, she is spot on, so we are not worried, but we are making sure that regardless of the cold, nasty winters, we are keeping our sweet girl moving and playing and running and jumping (her words).
Thank you for following our sweet lady’s journey and supporting us through her medical updates!
If you’re also a patient in DE, let us know! I would love to run into you at one of our appointments- we think it’s great when we get to meet new friends!