Kenny has had 3 prior surgeries, a lip closure and an attempt at a palate closure in Kyrgyzstan, then the bone graft and 2nd attempt at palate closure here at Shriner's last time. this time they did another bone graft, taking bone from his right hip. This was to fill the other side of his cleft. Kenny has a bilateral cleft, which means he had a cleft on two sides, not just one. That is what has necessitated two different procedures. They were able to close one fistula, which is a hole in his palate, but were unable to close the main one. He has molars in the front middle section of his palate that will need to be moved out to their proper position with orthodontic work before they can attempt to close the remaining fistula.
It was great having the whole family here, as the day got off to an awkward start when I set my alarm for the wrong time, forgetting we had changed time zones and my cell phone was still on Colorado time. As they were getting Kenny ready this morning, he started to lose it and get weepy when in stormed the rest of the Team, and suddenly all was OK. He did great all the way into surgery so we avoided him being too upset.
Shriner's staff here is so warm and welcoming, even to siblings. Although the kids couldn't be with Kenny in the pre-op room, and occupied themselves downstairs with air hockey and other games, when Kenny came out of recovery and was wheeled back to his regular room the two nurses accompanying him quickly invited all the kids into the elevator with him, and we all trooped down the hallway together. Kenny was pretty loopy, and the other kids all got a big kick out of that.
The kids have each reacted differently, but all being warm and compassionate. Angela is a real softie on the inside, expressing concern over every single kid she has met here, asking questions, speaking in hushed tones about how sad it is that a child has such challenging issues. Matthew hovered around the bed this morning and sat beside Kenny as they waited for the nurse, and lately I have been ever-so-pleased to see both of them drawing even closer as Matthew will often pick Kenny up in his arms and carry him around like a baby...both of them giggling like crazy. Matt is a Big, Strong kid these days and Kenny is still so little, weighing 40 lbs less as Matthew's "big" brother. Joshie is asking all kinds of questions about equipment and its purpose. Olesya is the closest at times with Kenny, and she is like a little mother, rushing to do what she can. They all just left, ready to go back and settle in for the evening while I remain here with Kenny.
Kenny is only in a little pain at the moment, and the graft site seems to be doing far better than it did last time. He is really wiped out though, and he is STARVING to death! On a normal day he can eat all the kids under the table, and never seems to fill up...so being on liquids today and tomorrow then soft foods will be rough on him. He has had a little broth, and is able to swallow well so I think his mouth will be healing quickly just like last time.
While here we were fortunate enough to catch the Shriner's Hospital Annual Variety Show put on by the staff. Kenny asked to watch part of it and then asked to be taken to his room as he was starting to hurt quite a bit, which Dominick did while I remained with the other kids as we laughed ourselves silly. This was quite a production, and a lot of thought went into the acts. Patients and staff alike enjoyed themselves thoroughly, and it was quite entertaining with everything from a dance review of the past 30 years to a full blown mini-production of Wizard the Oz. Matthew completely surprised me at the end when he went up for audience participation for a dance number, as that was very un-Matthew-like. Afterward he turned to me and said "Well, someone had to fill in for Kenny! He would have gone!".
We hope tonight is a quiet night and that Kenny rests easily. I didn't do so hot last night in the chair-bed, in part because I think I am just way overtired at this point. I was going to say it has been a long 4-5 weeks, but heck, let's face it, it has been one Blow Out of a year and maybe it is catching up to me! Despite the lack of sleep though, I did get two books read yesterday afternoon and evening, and even wrote a bit about one so I will share that later today or tomorrow in another post.
God's abundant blessings blow me away, and I realize at times that I often live in a place of fear and doubt, which shames me to no end. Over and over again I reside in a place of quiet skepticism, and over and over again God's head shakes in dumbfound amazement as no doubt the words come to mind "That woman never quite gets it, does she?"
As I sat at the talent show this afternoon, Angela tucked in under my arm and Olesya grinning back at me 2 seats over, I realized that for our family, the gift of care here meant much more than for some. If Kenny's care hadn't been offered here free of charge, the fact is we NEVER could have afforded to bring the girls home. Despite the incredible gift of their adoption fees being paid, we were looking at $20,000 in insurance deductibles just for the 2 surgeries Shriner's has performed thus far. Knowing we still have a lot of work ahead of us for Kenny...including thousands more that we will have to cover somehow for orthodontia for him...we never would have been able to commit to bringing the girls home for we would not have been able to handle loans for Kenny's medical needs along with 2 more mouths to feed. So Shriner's not only helped us out financially, but their generosity also meant we felt reasonably safe moving forward to adopt the girls as we knew we wouldn't be shouldered with huge medical loans in the future every time Kenny needed another procedure. And then to think Matthew might also be helped by Shriner's as well and be out of pain for the first time in many years.
One child will be able to speak normally and perhaps gain greater self-esteem from cosmetic procedures in the future, another might be able to walk normally and avoid joint replacements in his twenties, and two children gain a home...next time that a Shriner's circus comes around think of the gift it has offered our family and go, spend some money and have a good time knowing we are only ONE story of tens of thousands for whom life is very different through the gifts Shriner's offers so many.
I need to get back to Kenny and there is no internet access in his room, so I am signing off. Thanks to all of you who have thought of us today, prayed for us today, and offered us support in so many ways. Your love is felt, and much appreciated.
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