Mark your calendars cleft families! It’s that time again! We will be attending the upcoming St. John’s 51st Cleft Palate and Craniofacial Anomalies Symposium and would LOVE to see YOU there. We will once again be a part of the Parent Panel touching on the topic of WHAT WE WISH OUR CLEFT CARE TEAM KNEW. If you are an expecting parent, recently given birth or are in the middle of your cleft parenting journey, please join us for an informative…
Our son was born with a bilateral cleft lip and palate (BCLP) and has been in speech therapy since he was 18 months of age. I value private speech therapy and we are faithful in keeping our weekly appointments, incorporating speech techniques at home to gain consistency and working on a great deal of repetition. It’s just that at this point we have now added orthodontic appointments to our ‘have to’ weekly list and he has a palatal expander and…
As with any child you are going to worry about their development, but especially so when your child is already facing challenges due to their being cleft affected. Your child’s hearing is going to be another ongoing aspect of care you are going to need to be diligent about, which is why an ENT is an integral part of your Cleft Palate Team. Our son showed signs of hearing loss as early as 2 mos. of age when we first…
At this point we have been making great strides in our development. Gavin recovered from his lip repair surgery fairly quickly and we continued on as any other family. There was tummy time, he began rolling over, pulling himself up and before we knew it he was coming up on 10 months of age. His cleft palate repair surgery had already been scheduled and we knew of our countdown date. This surgery (cleft palate repair) was going to be…
Early speech intervention will make a difference in your child’s development and progress with regards to his ability to communicate effectively. Having a multi-disciplinary approach to our son’s care through the Cleft Palate Center has been a crucial part of his development over the years and especially in the beginning stages for his speech development because we had all of our resources in one place. I remember thinking that the suggestion for him to begin speech therapy as soon as…
Probiotics have been incorporated into my family’s daily regimen and defense of our immune systems. I first became seriously interested in probiotics after my cleft affected son suffered from chronic ear infections and was on antibiotics more than he was off of them in the first few years of his life. His pediatrician brought to our attention that our son might begin experiencing GI (gastrointestinal) issues due to his gut flora being wiped out time and time again. Again, I…
One of the not so fun highlights of post surgery care for your cleft affected child will be to have them wear the dreaded arm splints.They slip on the arms over their sleeves and are adjusted with Velcro closures. At 3 months after his lip repair surgery it wasn’t so bad having the arm splints on because it kept him from being able to reach up to his face and suck on his fingers or hit himself in the face….
Well, it finally happened. My cleft affected son came home from school and after asking him how his day was he told me it was a good day but…he was playing in the big play yard with the upper grades and an older boy came up to him and asked him “what is wrong with your lip?” My heart stopped. I quite literally was not expecting this today and even though it has been something in the back of all…
Today we had our 6 month check up with his Cleft Palate Team at St. John’s. It was a long morning for all of us! Gavin was a champ though, as usual. He knows that everyone wants to look in his ears, his mouth and listen to him talk so he gets through all of their requests with minimal fuss. I packed a bag with books he needs to practice reading, his therapy homework to work on and his school…
After our little guy was born he was whisked away by doctors and nurses for tests, monitors and a quick exit to the NICU (Neonatal Intensive Care Unit). I had an epidural so I was not able to go to the NICU until the doctor gave me an all clear which meant 24 hours. Talk about highly irritated. I really wanted to see my baby and they wouldn’t let me out of my room until I could pee on my…
