Cleft Team Visit
We're headed home from UAB Children's. Our appt was at 8am and we had stayed with friends in Montgomery so we had an early drive up which was nice because there wasn't much traffic and we were done with our appointments by 11.
When you go to "cleft clinic" you see the whole cleft team, so here's the run down:
1. Audiology: Hearing is fine. One tube is in place and working. The other tube came out a long time ago (which we knew). No worries here!
2. Genetics- our biggest surprise. Caleb already had a basic genetics test to identify syndromes and they didn't find anything. This time the geneticist said that because of the combo of cleft, severe speech delay, and some slightly unique facial features (one example: flat section on the side of his ears) he thinks Caleb probably does have an associated syndrome. He just doesn't know what syndrome it is. So in a year they will do more extensive testing to see what they can find. It doesn't affect anything we're currently doing with Caleb but I will be interested to see what they find.
3. Speech/Surgeon- she wants us always using a nose clip when working on speech. By closing off the nose we can essentially give Caleb a fully functioning palate while he works on mouth and tongue placement for words. They need him to be attempting more words so they can do a scope of his nose/throat and identify if his palate is working sufficiently for him to produce correct sounds. They will put the scope down his nose and have him say words like puppy, fish, bye, camper, hamper and see what his palate does when he says those words. If the palate doesn't work well( everyone suspects it doesn't ) then some sort of surgery to correct it will be in order- they would choose the type of surgery based on what they find with the scope. The goal would be to help the palate close the nose off from the mouth when he speaks.
4. Surgeon- talked more about the scope, surgery options. Said palate is still going through healing stages from the last surgery and should continue to loosen up and work better. If we do the surgery for his speech he may go ahead and do a lip/nose revision at the same time. If not, he'll do that before Caleb starts 1st grade.
So, we have 6 months until his next appt and hopefully we'll have some more speech development so they can do the scope. Or so much speech development that sounds correct that there's no need for a scope,
It's a lot of info and basically just more of the same for now as far as our path at home goes.
They all know how frustrating it is and told us to keep going- it will most likely get better. He's a vey intelligent little guy and has come so far. He can overcome this too!
When you go to "cleft clinic" you see the whole cleft team, so here's the run down:
1. Audiology: Hearing is fine. One tube is in place and working. The other tube came out a long time ago (which we knew). No worries here!
2. Genetics- our biggest surprise. Caleb already had a basic genetics test to identify syndromes and they didn't find anything. This time the geneticist said that because of the combo of cleft, severe speech delay, and some slightly unique facial features (one example: flat section on the side of his ears) he thinks Caleb probably does have an associated syndrome. He just doesn't know what syndrome it is. So in a year they will do more extensive testing to see what they can find. It doesn't affect anything we're currently doing with Caleb but I will be interested to see what they find.
3. Speech/Surgeon- she wants us always using a nose clip when working on speech. By closing off the nose we can essentially give Caleb a fully functioning palate while he works on mouth and tongue placement for words. They need him to be attempting more words so they can do a scope of his nose/throat and identify if his palate is working sufficiently for him to produce correct sounds. They will put the scope down his nose and have him say words like puppy, fish, bye, camper, hamper and see what his palate does when he says those words. If the palate doesn't work well( everyone suspects it doesn't ) then some sort of surgery to correct it will be in order- they would choose the type of surgery based on what they find with the scope. The goal would be to help the palate close the nose off from the mouth when he speaks.
4. Surgeon- talked more about the scope, surgery options. Said palate is still going through healing stages from the last surgery and should continue to loosen up and work better. If we do the surgery for his speech he may go ahead and do a lip/nose revision at the same time. If not, he'll do that before Caleb starts 1st grade.
So, we have 6 months until his next appt and hopefully we'll have some more speech development so they can do the scope. Or so much speech development that sounds correct that there's no need for a scope,
It's a lot of info and basically just more of the same for now as far as our path at home goes.
They all know how frustrating it is and told us to keep going- it will most likely get better. He's a vey intelligent little guy and has come so far. He can overcome this too!
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