We finally made it to craniofacial team at Children’s last Friday. We saw Dr. Patel (our pediatric plastic surgeon), a dentist, and a speech therapist. Dr. Patel is happy with how Vienna looks as well as how she is doing. He notes there is some movement between the two pieces of jaw due to scar tissue building up and prohibiting the bones to completely fuse together. He said he’s okay with this for now and is still very happy with the results from her reconstruction last year. Her dissolvable plate would be dissolved by now and not providing us any stability. He hadn’t told us at the time but told last week that when he went in last year she had built up quite a bit of scar tissue between the two jaw pieces. He said this is why the jaw bones still can’t completely connect, there is scar tissue between the jaw bones. His
plan for Vienna is to leave her jaw alone for now. He will plan to do another bone graft and place a titanium plate for more stability and to solidify the jaw as one piece when she is 8-10 years old. He said in the meantime if these two completely fuse together she won’t need that surgery. We as well as he hope this will happen to save her from that surgery. When she is 15-16 years old he will plan to then reconstruct the jaw to give her the proper jaw line. As with all things and especially Vienna’s journey our plans can always change but for now Vienna is doing well and Dr. Patel is happy so we will leave her jaw alone. I did get the chance to ask Dr. Patel what he learned from Vienna and what he would do different now reflecting on things. He said he definitely would have started reconstruction immediately when they removed the tumor. He said waiting allowed the scar tissue to build up and ultimately caused her more surgeries in the end. Her risk of recurrence was very minimal now in hindsight. The literature available for this type of tumor report the tumor has a high rate of recurrence, especially when diagnosed young like Vienna was. This is why we waited for reconstruction, to ensure she would not have recurrence. What we all now realize is most of these tumors occur in the upper jaw which requires the surgeons to resect only the tumor and risk leaving cells behind. However, one of Gods many Tender Mercies to us was her tumor being located in the lower jaw. This allowed them to get a good amount of healthy tissue when they removed the tumor which means her rate of recurrence is less that what is found in literature. I have wanted to know what he learned from Vienna so it was good to hear what his perspective is now being on this side of her journey.
The dentist would like to see her in 6 months to keep a close eye on what we think is a tooth in the very back on the right side. It doesn’t look normal and initially we thought it was exposed jawbone but now it appears it could be a tooth. I did inquire into her molars not being in the correct place and he said they definitely aren’t but there isn’t much that can be done until Dr. Patel reconstructs the jawline. I have to say the dentist is the least impressive doctor we’ve seen on this journey so far. It came out in our conversation that he is planning to retire in the near future and it was very evident to me that he’s pretty much checked out. There are 2 other dentists that he said we could see if we wanted when we return. I will plan to do that if possible.
We saw an amazing speech therapist, Lynn. She spent an hour with us. Vienna was the most talkative around a stranger that she has ever been. She stays very quiet even around people she knows, except with Kamal, Miss Melissa, and myself. I was so surprised and super excited with how talkative she was in front of the speech therapist. Lynn was excited also to be able to hear her. She is referring us to a feeding team at Children’s. Vienna doesn’t always chew food before swallowing like she should. I’ve noticed it and mentioned it. Lynn thinks it would be good to have a team who specializes in feeding evaluate this. As I told Lynn, if they evaluate her and tell me there is no concern then I’m good with that. Like most parents I want to give Vienna every opportunity to have the best outcome in life. I said to Lynn, this is why I have said through our entire journey “It takes a village” because it does. The more people we have to help us the better off Vienna will always be.
Vienna started school 3 weeks ago. The school is called “United Services for Children”. The program is a preschool program specifically for children in the Missouri First Steps program. They have different classes for the different needs of the children in First Steps. Vienna’s program is called “Play and Learn” with mostly children needing speech and social skills. I am so happy with the growth I have seen in Vienna’s speech. It’s so amazing. I wish everyone could be a witness to the transformation in her just in the last 3 weeks. Her speech is unbelievably improved. Every day I am so amazed at a new words she says. Our speech therapist saw her yesterday for the first time in 3 weeks. She was so shocked at Vienna’s speech. She just kept dropping her jaw and looking at me in disbelief. I kept saying to her “I know. I couldn’t wait for you to see her today.” I sincerely wish people could witness this transformation in her. I have to give the credit to going to school now.
We continue to find joy in our journey and be very grateful for our purple warriors. I hold gratitude daily when I watch Vienna for how far we come. I give credit to her fierce spirit💜. Loving Vienna💜.
