Well, the time has come for Gavin to have his annual Cleft Palate Center team check up and to see where we are at in progressing towards his eventual bone graft surgery. It was a loooong day for all of us. We made the trek to Santa Monica and it only took over an hour to get there with all of the a.m. 405 traffic. Sigh.
Gavin was seen by his nurse, surgeon, dentist, orthodontist, pediatrician, speech pathologist and social worker. He was being his usual self and giving each of them just a bit of a hard time. All in all the visits with each were good and not at all surprising, but I have to say that after seeing his team orthodontist I was unprepared for her recommendations. I mean, I knew things were happening with him with regards to his upper teeth and that we have been working towards the moment when he would need to begin the next leg of his journey towards his alveolar bone graft surgery, but I was caught off guard.
He has one front tooth that he lost and the permanent tooth had erupted and has been coming in slowly. The problem being that instead of the tooth coming in facing forward, the tooth is turned completely sideways and coming down in that way. He has two other teeth that are erupted in the roof of his mouth behind the fabulously turned tooth and another one that has erupted in his upper gum area in front of the other teeth! So much happening up there for my little guy.
The ortho wants to see him in her office and wanted us to visit his dentist to get additional x-rays to see what else is going on up there and suggested that we begin his orthodontic treatment with a palatal expander. This will open up his upper jaw providing more room for his teeth to have a place to come in at and relieve some of the pressure he is experiencing with all of those teeth just sitting up in the roof of his mouth with literally nowhere to go.
It’s so hard as a mom to see that your little one is just dealing with the pain and is even used to it at this point. All of the things he has to go through just to get him to be able to be where he should be is difficult on all of us.
The only part about his visit today that I wish would have gone differently is our visit with his surgeon. His surgeon, although nice and obviously well educated, is just not his previous surgeon. She really was family. We lost her a few years back and she simply cannot be replaced. RIP Dr. Janet Salomonson. During our consult,the surgeon agreed that it was time to begin orthodontic treatment in preparation for Gavin’s alveolar bone graft surgery. Gavin was in the room with us obviously, and his surgeon explained the two different procedures to choose from.
We could opt for the conventional surgical procedure where bone is drilled out of one or both of his hips and inserted into the gum line filling his alveolar gaps. The other is to go with an injection of bone material into his gaps, thus, eliminating the need to go into his hip bone. The one surgery would mean he would be on crutches and unable to walk for 4 weeks during recovery.
Later that day we went to dinner and just before our meal arrived Gavin looked up at me with tears in his eyes. He said, “mom, I don’t want anyone to drill my hips and bones. What if I feel it?” I was surprised at this and just grabbed him and hugged him. We both sat in that booth crying and hugging each other. I told him that he would be on the sleepy medicine and would not feel the pain. That was not very comforting to an 8 year old who only heard his doctor say “drill” and “bone.” I did not realize that even though he had not said anything at the time that he had heard everything discussed. For hours he had been agonizing over it.
We talked a lot at dinner and assured him that he is a part of the decision on what is best for his care and treatment. He is adamantly against the bone drilling and wants to go with the alternative surgical treatment. He is nervous about the orthodontist and what is going to happen there, but as with everything on this cleft journey of ours, we deal with it as it comes.
I encourage doctors to be mindful around children when discussing medical or surgical procedures that are going to be performed on them. Yes, you are speaking to the parents but I think it is equally important to be addressing the child and understanding what it is and how it is you should be addressing the forthcoming procedure to allay their fears.
We are fortunate to have a team around us and a quick phone call to his team nurse and social worker helping me to relay to him what it is that is happening to him and why, saved us both from a great deal of anxiety. Reach out, get the help you need, ask questions and figure out how to talk with your child about these very real fears about upcoming procedures.
I now know that when talking with the doctor in front of him that he needs to be included in the conversation and I will be responsible for making sure that he is addressed and hopefully incite to the doctor that what is being discussed needs to be understood by a child.
I am in awe of the bravery and positive attitude my son has and continues to teach me while on his journey. His social worker asked him many questions about how he felt at school with friends and peers about his craniofacial difference and I could not help but smile the entire time at him as he answered her. He told her that there was nothing wrong with his lip or his face for that matter and that no one ever asks him about it. He plays with all ages of kids, does karate, soccer and doesn’t know why she would think anyone would think there is something different about him. I LOVE that about Gavin. I often wonder how much bigger his ego would be had he not been born with a BCLP because perhaps this “difference” he was born with was supposed to teach him some humility in this lifetime. Guess we’ll have to try something else to teach him that…
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