Normally a child with a cleft palate would have cleft palate repair surgery before their 1st birthday to prevent any speech impairments. Because Ethan only had a partial cleft palate he only had a 50% chance of needing it repaired, the only way to tell was to wait and see if he ended up with speech problems.

We went in for one of our regular visits with our cleft Dr. when he was 2 and his speech was still very behind. They referred him to Early On for an evaluation with a speech therapist. They wanted her to decide if the speech problems were something that were related to the cleft palate or not. During this evaluation we found out Ethan was struggling with other issues as well  as the speech issues, since Early On tests for everything at the evaluation and not only their area with issues.

 

I got in touch with the Child Life specialists at the hospital and set up a tour, to help prepare Ethan for cleft palate repair surgery day. Ethan struggles with new situations, and things will not go good if we don’t prepare him for what is coming by talking and showing him what is upcoming. They got us in to tour the hospital about a week before surgery, and it was a wonderful way to help prepare him for the road ahead! The child life specialists let him take home some of the surgical clothing to use for the next week to help him get familiar with some of the things that he would see before and after his surgery.

We had to get all suited up to go into the surgical rooms, Ethan was mesmerized by all the machines!

Here we are again the morning of surgery with his cap and hospital clothes on. Only Ethan could look that cheerful at 5:30 in the morning lol.

The surgery went very well, but the big job now was to keep him away from food for 8 weeks…  Yes you read that right keep a 3 year old away from ALL food for 8 weeks in a household full of 8 people. I am happy to say, we all made it through but it was not easy!!  The first 4 weeks was a complete liquid diet and the last 4 weeks we were able to add pureed food. It was like torture to tell my child that he couldn’t eat, for 8 weeks straight!

They explained that if any object was to scrape the roof of his mouth it could ruin everything that they had done. Really because the stitches for the cleft palate repair went from 1/3 back in the roof of his mouth all the way down about half way down his throat. The doctor actually got rude with me when I asked him if that was safe, to not let a child eat anything for 8 weeks. He told me “no child has ever died on my watch”  😕 !

 

Ethan had a rough time with the pain meds, he was given a dose while still in recovery and the medicine made him sick, so he wouldn’t take any other medicine the rest of his recovery time. He looks miserable in these pictures. Don’t let that fool you though that day was bad but, the next day we were able to go home, and he ran in the house wanting to play with the boys like nothing happened. Kids are so resilient!

Following surgery Ethan had to be kept out of speech for 8 weeks, but during that time I was able to see so many improvements in his speech I was so encouraged! After the 8 weeks was up we continued his speech on a weekly basis, we were seeing dramatic improvements in his speech. After further testing we have found out that Ethan did not only struggle with his speech due to his cleft palate, but also that he has speech apraxia.

This little guy has lead us down many paths in 7 years (this story being just one of them) and will continue to lead us down some trying paths, we are just grateful God continues to guide us and give us so much strength!