(our cleft team)

we had our first appointment with the cranial facial surgeon on wednesday. we were set up with the entire team of specialists that day.  our surgeon informed us that we would be working closely with an speech therapists, orthodontist, ENT and geneticists ( i might be missing one too!).

after our first appointment, we were given an appointment for an orthodontist and speech therapists. 

an orthodontist!

i was nervous that we would need dental insurance with ty...thank goodness it is all covered with medical insurance. i do need to say how amazing our orthodontist and speech therapist are. they make us feel like we are already family. it also made us feel better that they loved ty...so much so i thought they were just going to kiss all over him..i mean how could you not ;)

we first got ty set up with taping. interesting i know. the purpose of this is to position his cleft into a more operable position. he has to wear this "tape" 24/7. i change it every night and let me tell you.....its easier than it looks to assemble and place! the tape will change direction and position every week in order to get the cleft in the position they desire (it reminds me of rubber bands with braces....same concept).

after the orthodontist was finished the speech therapist came in. loved her! she helped us with bottle feeding and setting up a system of how and when to feed ty. when you have a infant with a cleft palate you can not just use any bottle, we use whats called a haberman nipple....and they're is a method to using it!

i was beginning to feel confused and well stressed because i was having the home health nurse tell me one thing about his feedings, then his pediatrician, and now the speech therapist.

i will say the method that has worked the best, and the person who spent the most time working with us and ty was the speech therapist. ty is taking more of his bottle and is actually gaining weight quicker since we had our appointment with her.

we are so blessed. we have this team of specialist that work with infants (children and adults) with clefts. they work with the families from the very beginning all they way until the patient is in their early adulthood. yes adulthood, i thought this was just going to be one or two surgeries.


they are going to work with ty and us all they way until early adulthood. i was a little overwhelmed with that thought at first but then i realized how amazing this is. any issues in the future are already covered!!

so now this is our first step. working on ty's feeding/gaining weight and taping. it's nice to take this process in steps and not get overwhelmed about the future. 

 before taping (yes that is a tooth!!)

 after..so excited to see how this will work. they say we will notice a difference after one week ( i think i already see a difference).

Popular Posts