Wednesday, May 10, 2017

Cleft Lip & Palate Awareness Week

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 approach to being the parents of a child with a Cleft Lip and Palate is different than most as we knew right from the start that we were jumping into being the parents of a child that had a cleft lip and palate. We started Liam's adoption about 3 years after Evelyn was home and on the second time around, it was very clear to us that we wanted to bring a child home that not only needed a family, but a child that needed us in other ways too, I think that's the simplest way to put it. We set out to complete a Special Needs Adoption, which is to say, a child that has a medical need of some sort.
Our first glimpse of Liam
Very early on in the process, Les and I had to sit down and complete a Medical Conditions Checklist. If you aren't sure what that is, it's a list of potential medical conditions that a child can present with, anything from prematurity, to anemia, from HIV to complex heart conditions and anything in between. Once you have been to China and you have seen children waiting in a hallway to meet a family to call their own, and you look at a list like that, you realize very quickly that there is not only one child behind every condition on that list but hundreds and they are each a precious individual and they each deserve the chance to have a family and thrive. The night we sat down to decide which medical conditions we might be able to manage as a family and which ones we might not, still haunts me. Among the conditions we checked off, we did decide that cleft palate and/or lip was something we could handle. I knew exactly what it was, I also knew the stigma attached to that medical condition in Chinese culture, I knew that Speech Therapy and multiple surgeries would be a part of the deal but I just knew that I could do it. Les agreed.
Another picture sent from China while we waited

A cleft palate is when, in utero, the roof of the mouth doesn't close completely and the baby is born with an opening there, this can encompass the soft palate or the hard palate or both. Sometimes this opening extends to all of the way through the front jaw line and into the upper lip and it can affect the appearance of the nose on the affected side. The child can also have a cleft on one side; a unilateral cleft or both sides; a bilateral cleft. 
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
Is it easy having a Special Needs kiddo in your life? No. It's not. It's not easy planning All of the Speech Therapy, the Doctor's appointments, the surgeries, watching your child go through it all. Would I do it again? In a minute! Liam has enriched our lives in so many ways. I will never be able to repay that little boy for coming into my life and making it better, for making me a better person. It has been an absolute honor to be his Mama, to be here for him during every scary moment for him, to have him reach out for my had or climb onto my lap. Some conversations have ripped my heart out, the ones about why he has a scar on hid face and no one else does, the ones about kids at school teasing him, the ones where he decides, with a maturity far beyond that of an eight year old, that he likes his nose just fine and the surgeon is the one in the wrong for expecting him to change his face...Some conversations have been the kind that make my heart swell, the ones where he tells me that he trusts me to handle everything and to just let him know what needs to happen as it's going to happen, that he thinks I am the best Mama ever and he is glad that we are together, the ones where he looks at me and simple tells me that he loves me. Cleft palate or not, this is my son and he is simply the best boy in the world, I wouldn't trade him for all of the gold in the Universe.

Liam age 8 just before Second Grade

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