Our day began around 4:30 am but if officially got started at 7am when we arrived at TCH. We went on a not so fun goose chase to get her blood drawn. 2 stabs later they still didn't have all the blood that was needed so we headed up to Dermatology and Orthopedic for a much needed rest from poking. Dermatology went great. She does not have eczema and her hemangioma is healing very well. We won't need to go back for a year! Orthopedic was another story. She will need to go back into her leg braces full time. We are going back to the original brace she had but she has grown so we have to get a new set. I'm hoping that insurance will cover the $1500 price tag but not sure since this will be her third pair in a very short amount of time. We have to go back two weeks after she finally has the new braces for a check up and the doctor will also do an extensive x ray of her elbow. We can't figure out how or why it is always popping. The other deal is her leg. The doctor wants us to go to PM&R which we are doing in a couple of weeks. She is wanting them to Botox her leg so the muscle will be paralyzed (temporarily) so our therapy team as well as Ricky and I can work on stretching it. The Ortho said she will need surgery on that leg but not until she is older and that plastic surgery will probably need to be involved because they will need to do a skin graft. The doctor thinks she will be able to walk but it will most likely be very different. The main concern right now is the fact she won't bare any weight on her feet and always holds them folded like she is guarding them. Because of this we need to see a Neurologist. She has very little and I do mean very little, muscle in her legs. Now we have to work on building the muscle she should have had all along as well as try to catch her up to where she should be. We left there and headed back down to the basement for her third and thankfully final blood draw.
I've really become immune to all of this. I mean I'm front in center at every appointment hearing all the good, bad, and ugly so at some point, and I can't remember when, I just became numb. I don't recall which child, what appointment, or what was going on but it happened. They look at her and say we know she has some kind of syndrome but don't know what yet, and may never know. We will just keep treating her symptoms until then. Well, she is alive for one and two who cares? It's not going to change anything. She will still be Gracie. She was created just the right way from the one and only who never gets it wrong. Just roll with the punches because I can't fight every doctor. My energy is weary. This has been the most difficult year of my life but it has also been the most beautiful. She does so much they said she wouldn't do. If she needs a walker then ok. If she walks different then me then ok. It is really old when all the "flaws" are pointed out- all the time. I just really question all the specialist sometimes. Not that I'm going to stop taking the kids but it's just the point that I'm numb to it all. The hell with 'em!
What I hate is how this affects Ricky. He does not show it but you can just tell in his voice.
After a year like we've had, we are exhausted. We need a change of scenery and time to recuperate. This is not an ordinary first year- first time parents. We've been to hell and back!
God is still in control, wonderful, and loving. He will give us strength and energy- He always does. Plus, this is nothing compared to where we've been.
Prayers for us all,
Krista
