We found out when we were pregnant with our 5th child I seen a high risk specialist due to gestational diabetes. During the routine ultrasound we were told that more then likely our baby had a cleft lip and they were not sure if he had a cleft palate. You can read more about our beginning journey as well as his first surgery in our previous post.
When he was born we knew he would need a cleft lip repair surgery, and possibly a cleft palate surgery too. I suppose because it is hard to imagine your little one going through a multitude of surgeries I just wasn’t aware of all the surgeries, procedures, and health issues he would face during his lifetime. We had no clue how much of a lifetime journey it would be for this little guy. Luckily God made him a spitfire and he is super strong and even more luckily he doesn’t really feel pain, he even lost the tip of his toe on vacation and didn’t even feel or realize it.
When he was a couple months old he had his lip repair surgery. We had to wait until he was 3 to do the palate repair surgery, which involved a complete liquid diet for 6 weeks and then pureed foods for another 2 weeks.
Cleft Palate and Lip Kids Often Need Ear Tubes
Children who are born with a cleft lip/palate are likely to have hearing problems, and develop frequent ear infections leading to hearing loss, this is often overlooked in cleft kids. The statistics say that 97% of cleft kids will struggle with ear infections the first 2 years of their life.
They are likely to need their tonsils taken out in order to prevent sleep apnea as well. When Ethan was 3 and tested at our local Early On center he failed his hearing test. So when he was 3 he had surgery to put tubes in. Since then the tubes have fallen out and we are SO BLESSED that he has not needed another set put in or had any other hearing issues. Matter of fact is was very unlikely that he wouldn’t need another set put in. We do continue to bring him in for hearing tests every year to make sure that he does not have any hearing problems that are not being noticed.
Cleft Palate and Lip and Sleep Apnea
Ethan has always had sleep issues, even when he was a newborn he rarely slept at all let alone for long periods of time. We just thought it was who he was and never thought much about it. After discussing this with his neuropsychologist we realized how VERY important sleep was and that it could be the reason for some of his behavioral issues we were facing with him. They decided to put him on medicine to help him sleep and send us over to the sleep DR so that he could look further into the problem.
The sleep DR decided to have him do a sleep study to see what was going on during his sleep cycles so they could try and help him. He ended up failing the sleep study and was found to have sleep apnea. The #1 way to fix sleep apnea normally is to remove the children’s tonsils and adenoids. We were once again referred over to our ENT DR who put his tubes in years before, to have his tonsils taken out. Children with cleft lip/palate cannot have their adenoids removed or their palate will collapse down, we scheduled surgery to only remove his tonsils.
Surgery was on April 20, 2015. Everything went well, and his recovery was great. He never took any pain meds, Motrin, or Tylenol during his recovery period. Once again proving that he still didn’t feel pain.
He did however, take full advantage of the fact that he could eat all the Jell-O and popsicles, and mashed potatoes he wanted 😉 . I think he had colored lips and mouth for about a week lol. I was just happy that he was able to stay hydrated during the recovery period, something we didn’t get quite so lucky with when Anthony had his tonsils removed months before.
The day after surgery you can still tell he isn’t quite up to par and feeling spectacular yet. He was up and moving around just fine.
A week after surgery you cannot even tell he had his tonsils removed a week before. He was back to creating things from misc parts and pieces. Like this flag he made from a stick and old party decorations!!
His story is far from over, during the next year he had another cleft lip surgery, got Kawasaki disease, got braces put on, got glasses, received surprising results from a brain MRI we had done, and more. Next I will be sharing about his brain MRI that came back with not so great news, but answers to many of our questions we had for so many years the MRI where the Psychologist was very sure he had a rare form of brain cancer.
Want to catch up on the rest of Ethan’s story?I have written the following previous posts about his journey.
- Cleft Lip Repair Surgery
- Childhood Illness, RA, 12 Appointments in 1 Week, and More.
- Cleft Palate Repair Surgery
- Early intervention and Sensory Processing Disorder
- Ethan’s Sensory Processing Disorder Symptoms
- Life With Sensory Processing Disorder
- The If/Then Board
- Sleeping Issues and Visual Schedule
- Original Preschool Plans for Ethan
- Final Preschool Plans for Ethan
- Tonsils Out Tubes In
I am linking up with these great linky parties.