Appointment in LA

We went to UCLA today to meet with Dr. Bradley (Plastic Surgeon). He did not give us a definitive answer about what is next, but here is his take: He said we should wait a few months to see how her head & brain grow. This will help the next surgery, by knowing what to expect afterwards and to help avoid a 3rd surgery. After the next few months, we will see how her head & brain grow, then likely we will do another surgery in 6 months. This surgery will be ear-to-ear (again) in the same incision as the last. They will take bone from another part of her skull and place it onto her orbital ridge (above her right eye) and also put another bone graft where the one didn't take before, and fill in the soft-spots from the 1st surgery. There is no guarantee that this surgery will make her perfectly symmetric, but there will be an improvement. Regarding the helmet, he said it isn't helping or hurting and he doubts it is doing anything to help her orbits, but it may be preventing anything from getting worse. So, we are still deciding if the helmet therapy will continue. It is amazing how much is really our decision now. You think you will go to the doctor and they will say to do something...and you just do it. But, in our situation it is really up to us as parents what we want to do and when we want to do it. In the meantime, it looks like we have many more agonizing months to wait, AGAIN, for another surgery. We will keep you posted, as always!

On a lighter note, while we were in LA, we decided to go out to lunch at the Promenade. When we got there we walked right into the filming of Modern Family (i love that show)! The scene is Mitchell and Cameron at the bottom of an escalator with an elderly couple....so look out for it. We weren't in the episode, but I did get to take a picture of Avery sitting in one of the Modern Family chairs. Only in LA.....

Avery's 1st Birthday

Avery turned 1!!!! I can't believe she is already 1 and can't believe she has been through so much just to make it to this special day. We had a wonderful time celebrating with friends and family. Thank you so much to all of you who have supported us this past year. We go to meet with the surgeons at UCLA tomorrow.....there we hope to learn what her 2nd year of life will be like! Hopefully, from here on out the years will get easier for her. Happy Birthday Princess :-)

Going to see Dr. Bradley at UCLA

We have our appointment to see Dr. James Bradley at UCLA on Thursday, October 21. I went to Rady's Children's Hospital yesterday and filled out all the forms to get Avery's medical file and MRI/CT images sent to UCLA. Dr. Cohen (our current CFPS) has already called and discussed Avery's case with Dr. Bradley. Hopefully, with Dr. Bradley & Dr. Cohen's opinions and brainstorming, we can come up with a course of action for our little girl.

2nd Surgery & Second Opinion

We met with the CFPS and viewed Avery's latest CT Scan. We could see that the orbit on the right side is stretched higher than the one on her left. In addition, the bone graft on her right side above her eye seems to have not vascularized (meaning blood didn't flow to through the graft) and therefore, the graft no longer seems present. The CFPS was brainstorming the 2nd surgery options right in front of us. He came up with options on how he could fix the problem: bone grafting, bone filler, bone from other parts of her skull, cadaver bone, etc.

The CFPS gave us a few options: (1) wait until she is closer to 5 years old, when her head has stopped growing, to do a pretty invasive touch-up surgery; (2) "re-do" the original surgery right away while she is still young and won't have lasting memory of it; (3) get a second opinion from the CFPSs at UCLA.

We have decided to go to UCLA and see what the CFPS there says. Currently, I am trying to gather all the medical records I can about Avery's condition so that I may share that with the doctors there.

A 2nd surgery is in Avery's future. At this point we are just trying to determine when, how & where. Touch-up, 2nd surgeries are done about 25% of the time & 're-do' surgeries are done about 5% of the time. Risk-factors from surgery are generally the same as with her first surgery.

As always, I will update the blog when there is new information to share.....

Avery's new helmet

She has her new helmet now. It was completely covered by insurance again, which is great! I haven't decorated it yet, but hopefully will soon. Today we meet with the CFPS and will discuss options for a possible 2nd surgery. I will update again later.