I've copied and pasted this from an email I sent this evening to the many people who have come around us to support Tejan... too tired to do anything more tonight. Hugs, friends.
I'm writing from home tonight after a very long and exhausting day at the hospital. Tejan is on the floor playing with new toys he received after his blood draw this afternoon, but I can see that he is also very tired tonight.
It was a long day. But one where I felt the peace and calm that only comes from answered prayers.
Tejan was eager to go this morning and excited to ride on an elevator (for apparently the very first time.) After being shown the room where he will stay beginning on Wednesday, he began the long series of tests and introductions to the staff who will be involved in his care. Fortunately, Shriner's is VERY good at dealing with children, and it shows in the dedication and care we received throughout the day.
All in all, Tejan was a trooper. He was terrified of the blood draw, which resulted in a sweaty, stressful fifteen or twenty minutes as I held him tightly on my lap, literally being the shock absorber for his squirming, all the while trying to calm and comfort him. They were able to bring in a numbing medicine that finally made it possible to do the draw. But it was difficult to see him struggle so much. The other low point in the day was his absolute refusal to cooperate during the motion testing. There was nothing scary or difficult about it that I could perceive, but I think he had just reached his limit and was done. Fortunately, the staff there was very sensitive to his needs and cut back their expectations dramatically.
After a couple of hours of playing Wii in the game room, we finally had a visit from the doctor. It was during this visit that we learned that unfortunately, there is nothing they can do for his bent leg. It has healed in such a way that they cannot do anything to straighten it without fusing all of his joints. He would lose so much mobility in that case, that it doesn't make sense to take that approach. Instead, they will be removing the growth plates in his good leg to stop it's growth so the discrepancy between the length of the two legs will eventually be shortened.
Tejan was visibly disappointed to hear this. I feel so much grief for him - that he will never have two straight legs - and that the long term prognosis for his bad leg will probably include debilitating arthritis and possibly amputation. I was frustrated to learn that if he lived here in America, their approach to his care would be entirely different and more comprehensive. It all seems unfair, and yet I realize they are doing what they can considering the circumstances. All of this is to say that emotionally and physically, we are both a little worn out. But still hopeful, and grateful all the same.
The rest of the week will be as follows: Tomorrow is a rest and regroup day for us. Wednesday morning he has to be at Shriners at 6:00 am. His surgery will take place that morning. I do not know how long it will last, or even exactly what time he will go into surgery. We will be in the hospital until at least Friday.
Thank you all so much for your prayers. They are as real to me as the air I breathe. I feel held up on all sides by the support and love and prayers offered by our friends and family and church. I know Tejan is comforted by them as well, as I could see him settle down when I reminded him of the many prayers being said for him throughout the day. He is a boy of great faith and a deep love for God... he knows God's love and provision well.
I'm off now. I go to sleep tonight with a deepened sense of God's strength when I am weak. And with a heart of gratitude for the amazing, exhausting, overwhelming gift I am receiving in this experience... as Tejan would say, "It is good."
Bless you all.