Graham is surprising me every day with his strength. He has definitely acclimated to the NAM and seems to not even notice it anymore. Although he does still hate to get it taken in and out. He still refuses to eat with it, so we have given up trying. Dr. K said that it's not big deal. While at his appointment we took a look at the molds that were taken at our very first appointment in the dental clinic. Wow! What a change. Graham's alveolar ridge (aka. gum line) is completely closed where as when we started it was wide open and turned upward. Although you can still appreciate where the cleft is on the ridge, the right and left sides have moved together. Dr. K is continuing to change the NAM plate to get the best possible placement of his alveolar ridge. Because his mouth is responding so well to the taping and NAM Dr. K decided to "activate" the nasal stent. In other words, repositioned the stent so that it is actually causing some pressure and molding rather than just sitting in his nare. Graham hardly noticed it.
I was so worried about adding the nasal stent but he proved me wrong once again. The little guy flashes the biggest grins, even with the NAM in these days. He is such a love bug.
We are planning a meeting with the craniofacial surgeon in the next few weeks so he can see the progress and give us a better idea of when he thinks surgery may be. Yeah!
Although Graham is doing exceptionally well, I do struggle with my own worries and feeling surrounding the NAM. I am naturally an out and about kind of person. I love to be on the go. With Graham I have continued to be that way, to an extent. To me, there is nothing wrong with him. To me he is perfect. It is not until I am out and get the double takes and the odd looks that reminds me that to others that might not be true. It makes me sad. People will see him in my arms, facing away from that and start in with the "oh, he is so tiny and cute". Then they will move in for a closer look and you can see the shock in their face. I know they don't mean to and i try to remind myself that it is natural, but I can't help wonder what is going through their minds. I want them to ask, to acknowledge that there is something there, but they never do. They usually quickly turn and leave. And when they do choose to say something, which isn't very often, it is usually "Oh, they can fix that. At least it's not something bigger." Well, to me it is bigger. This isn't nothing! It is months on end of doctor's appointments, years of surgeries, putting tape all over my beautiful baby's little face, listening to him scream as we force a hard piece of plastic into his mouth numerous times a day, watching him struggle to breathe. Yes, I do realize that there are harder things out there to endure, I mean come on, I am a nurse. But right now this sucks, not for me but for my baby. I hate that he has to go through this and I am pretty sure that to him, this is not NOTHING.
1 comment:
I just came across your blog. My daughter was born with a unilateral cleft lip and palate. I experienced the same exact responses out in public with the NAM. She is 7 years old now and I have mostly forgotten the responses to the NAM, but this brings it back. It always amazed me the number of people who would just stop talking mid sentence and turn away after they saw it. You sound like an amazing mother and able to cope with all the challenges :) Thank you for sharing your experiences for others to read.
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