We have appointments set up for the end of February and early March to meet with both teams. I am excited and nervous. I am interested to see another plastic surgeon's take on Jesse's clefts and surgeries; I am also interested in a new speech evaluation. I don't have any major concerns about either, just maybe some fresh eyes/ears might be a good thing.
In addition to finding a new team, we are also nearing Jesse's 3rd birthday. When he turns 3 he will be transferred out of the Early Intervention speech program and entering the school system. I am waiting to hear back from the Child & Family Connections coordinator to get that scheduled. If he qualifies for their program, he will get speech and pre-school for free. Of course I have mixed feelings about this. Free pre-school would be great, but I hope Jesse's speech is far enough along that he doesn't need to be in the program.
Lastly, last week I submitted Jesse's Story for a book called, "I Wish I'd Known How Much I'd Love You." This is how the website describes what the book will be, "We are creating a book of stories, photos and cleft related information. With this book, we hope to bring encouragement and support to parents of cleft affected children." http://www.iwishidknown.yolasite.com
I took the story I wrote for MiCleft.org and revised it a bit since it's been about a year and a half since I wrote it. Here it is.
My pregnancy was totally normal, in fact, I enjoyed every second of it. I think when I was pregnant, was when I was most at peace in my life. I had a blood test done early in my pregnancy to check for things like Down Syndrome and Spina-Bifida; everything came back normal. All my ultrasounds and heartbeat checks were normal. My due date approached and I had a doctor appointment on my due-date. The doctor told me my body was ready and the baby was ready; then asked if I wanted to be induced so he didn’t get too big for me to deliver. I agreed and we scheduled my induction for the following day. I was a little scared about the whole childbirth thing, but I told myself millions people give birth all the time since the beginning of time, I can do this.
7 Days Post-OpWithin days my little boy was smiling again, eating well and getting back to his old happy self. At four months old he just did not seem satisfied with the formula (I stopped pumping before surgery.), so I decided to try some cereal. He loved it from the beginning and started packing on the pounds. This is what he needed, REAL food. A few weeks later he was eating pureed fruits, then vegetables. By eight months old he was not a little boy any more --- he was way up to the ninetieth percentile! He was eating all sorts of food, even table food. We did have some challenges, like sneezing, because food would get up into his nasal cavity, then of course would come out his nose which couldn’t be a pleasant experience. But he managed to get through it, I think it was because a full belly was worth it.
When it came time for his soft palate surgery at 10 months old, there was no doubt he’d be healthy enough. He was huge! Of course I had the anxiety and fear just like the first surgery, but when it came down to it, I was strong like I needed to be for him and for myself. Recovery was much harder and longer this time around, but once again we managed to get through it. After the worst part of recovery was over, things changed. He was making new sounds, he didn’t sneeze when he ate, and food didn’t come out his nose. The surgery worked! Within a few months he started sucking and by 15 months old, he could drink from a straw, which is a big accomplishment.
Cleft Soft Palate
Palate Surgery Post-Op
I now have a happy, healthy little boy who’s turning 3 in a few months and look how far we’ve come! I am proud of him and I am proud of myself. I remember my aunts words again, “God gave him to you, because you can handle it.” I CAN handle it. Instead of being ashamed of having a child with a cleft, I now share it and educate people about it, and I have put myself out-there to help people who feel the way I felt when I saw my child for the first time. I’ve turned those negative feelings into good…into helping, educating, inspiring and sharing our story.
I’ve learned bravery throughout this journey. Not so much because I wanted to, but because I NEEDED to; for myself and my son. I hope I can teach him to be a brave child, and one day a brave man. I also hope one day he can educate and inspire others too, and make a real difference in this world.