In honor of Cleft Lip & Palate Awareness Week, I thought I might talk a some about my wonderful son Liam, our journey to him and his journey with his CL&P.
|Liam before lip repair in China|
|Our first glimpse of Liam|
|Another picture from the Orphanage|
We submitted our paperwork and we waited. And we waited for yet another child to call our own. We had several conditions on the list; we had said that we would take boy or a girl. One snowy day we got a call. Our agency had a file that they thought we might be interested in. A small boy with a unilateral cleft lip and palate fourth degree (this meant both soft and hard palate were involved as well as the jaw line) but that he was on target developmentally, he was extremely precocious, he was bright, funny, and had been in Foster Care, would I like to see a picture and some information? "OH! We'll take him!", was my reply. The agency lady said, "Mrs. Dillon? Aren't you married? Wouldn't you like to talk this over with your husband? Don't you want to see the file first? Have a pediatrician look it over?" I Laughed. "Oh yeah. I'll call my husband in. He's shoveling the driveway. But this is our son, I know it. Do NOT GIVE THIS FILE TO ANYONE ELSE. I'll call you back in 10 minutes."
|The first time in my arms|
Two months later, we were in China once again. It was hot. Again. It was a different large room. But it was filled with people and we were waiting once again to hear our name, straining to see where our baby(toddler actually) was. He was in a corner, playing with a broken blue truck. We had to bribe him with food. It didn't take long for him to warm up to us though. He liked that we had food and that Evelyn made sure none of the other kids took that truck away from him. Soon we were back in a quiet hotel room with him and our time as a family of four began.
|Liam and the blue truck|
|First moments as sister and brother|
To tell you that Liam is my personal hero would be an understatement. I have watched that boy change countries at a time when it is most difficult to make that transition and he survived. He survived his time in China without a family of his own, being unable to verbally communicate. He has gone through years of not having people understand his speech and I have never once seen him be frustrated at anyone over that. He has been through multiple surgeries and he faces each one with a spirit of courage and grace beyond his young years. Above and beyond all of the stuff that comes along with having a cleft lip and apart he is just a boy, with all of the trimmings. He is my Liam. He is the sweetest and most giving little person, always ready with a smile or a kind gesture. His smile lights up the room. Evelyn came into our lives and made us whole but Liam came into our lives and completed us. We were all missing something until this kind, clumsy, wacky fella waltzed into our lives.
When Liam first came home from China, we called his tongue The Veal Cutlet as he had absolutely no muscle tone in it whatsoever. He had no muscle tone in his cheeks. I guess it's important for me to tell you here that Liam did have surgery in China to repair his lip but when we met him at the age of 22 months to bring him home, his palate was still unrepaired. At that time he was still eating mostly from a Cleft Bottle and soft foods that he could mush. He had never learned to suck, there wasn't much in the way of chewing action, and some foods would just come right back out of his nose. We had at least two years of solid work to strengthen to muscles in his tongue and cheeks just so that he could lick peanut butter off of his lips, THEN we could work on his speech sounds.
When he first cam home, we started right away with Baby Sign Language. It was all we had. Liam left China at the age where the brain looses it's first language faster than it can pick up a second language so it does this weird shut down thing and he was really mad and refused to make any verbal sounds except to cry for a few weeks (that was fun). Then once he started to pick up English, it was completely guttural sounds, no consonants at all. We had to use Signs. He ended up having over 300 that we used.
We started ST right away. That continues to this day, he is eight years old. At this time, he goes simply for "clean-up" issues and maintaining good habits, all of his cleft related issues are a thing of the past. But as we move through different surgeries and appliances, those cleft related speech issues will crop up again.
His first surgery was to repair that open palate once we were home. While he still had an open palate to deal with he drooled almost constantly. He could cram fistfuls of food up in that opening, it was quite impressive really, so I had to watch him carefully. We also had to watch no to give him any thing too drastically hot or too cold as the open palate is very sensitive. Eventually he needed a second palate revision as the first one was too tight. Liam had a very wide cleft and we knew that going into the first surgery there might have to be a second one. Along with the sound palate surgery, they did a scar revision on his lip from the surgery in China (that scar was very tight and causing pulling and soreness) and they worked on the tip of his nose to even out some of the slanting from the loss of cartilage.
|Right after first palate repair|
|After second palate repair and lip revision|
|Day 2 of 2nd palate surgery/lip revision|
|Post-surgical stitch abscess(quite common)|
|One week after that second surgery|
We are preparing for the upcoming Bone Graft that kids with that cleft in the upper jaw (Alveolar Cleft) need to have when they are about this age so the adult teeth have something to hold onto when they come in. That should be about it, unless Liam decides he wants to have further surgeries on his nose when he is older. Last this time however, he has decided that his nose is just perfect the way it is and he likes his nose and I agree and we have chosen not to have further Plastic Surgery on that.
|Liam age 6 as Robin Hood|
|Liam age 8 just before Second Grade|