Well, I'd just like to say how incredible it is that God takes care of things.
Since I didn't know about the appointment beforehand, I had to bring Milo along with me (he's still nursing) and then of course Gracie to help with Milo. So picture Milo in his stroller, Toby in his wheelchair with Gracie pushing, and Mommy pushing Milo while trying to balance a day's worth of stuff in a bag and a walker. It took forever to get through the parking lot. Luckily Nate (my husband) was able to meet us there just in time for Toby to get called back for his CT Scan.
The problem with the CT Scan was that most kids at Toby's age need to be sedated. Well, praise God, we never have. The problem with that was that we weren't prepared if Toby had needed to be sedated. He had already eaten that morning. So they warned us that we would be sent home if he didn't cooperate with them. Meaning we would do this all over again another day. So I went in there with him, and as soon as he saw the machine he started crying. They threatened, and so I did what any mommy would do--I went and got daddy. Long story short, we made it through. Toby calmed down and they actually let Nate lie on it with him. He went and got some x rays done after that, and we were done with the hard part.
So, the pressure with his VP shunt is messed up, and his ventricles are too small. They adjusted the pressure, and so far we've had no negative side effects. We will go back in three months to see if adjusting the pressure worked.
Nate was going back to work, and I was going to be at the hospital all day with three kids.
One of the incredible parts is that a girl in our youth group happened to be in the area on the same exact day as us and the same exact time. What are the chances except that God had His hand in that? So Nate went back to work, and I had help all day long. I honestly don't think I could have done it without her. Physically I don't know how I would have even made it, not to mention emotionally. I am so glad that God takes care of things. Even when we don't think we need His help. She was incredible. She rocked Milo, played with Toby and listened to Gracie's constant talking. I cannot even explain how thankful I am. God is so good.
Then we see our wonderful Orthopedic surgeon... (I'm being sarcastic.) He tells us that we should be happy with how Toby is walking (which is very, very little) and to plan on a wheelchair mainly. He said his knee is messed up, but not bad enough to fix, and then proceeded to list off every muscle Toby does not have. Sweet man. So here I am heartbroken. We've been working so hard on walking and standing. making him wear those stupid braces for what??!! It's horrible to think that you are forcing your child to do something he really physically cannot accomplish. Well, I get over it and just continue on. My friends on the Babycenter support group encouraged me to just let Toby do what he will do and not listen to doctors. (Great advice, by the way, if you guys are reading this.) So that was my plan.
Then, Toby decided to give me another great moment. A moment which gives me the courage to say, "Stupid doctors, we can do this, Toby. God can do this Toby."
This is Toby cooking pumpkin pancakes with me and Gracie.
This is my moment. Looking at this picture I am reminded of how much God has done, and how far He has brought us. A year ago if you told me that Toby would be standing on a chair (with his braces) and helping me cook I would not have believed you. But that's what he did. We took a risk. The risk of his falling or being scared and just set him up there and let him cook with us. What a great moment!! These are the moments that keep me going. That keep me from focusing on doctors who might not be the most sensitive. These moments help me scream, "YOU CAN DO IT!!"
So here I am writing this post about Friday night when already Today had another incredible moment.
Toby pulled himself up to stand today and stayed standing for the first time. His braces weren't locked, and he just stood there at the coffee table playing. Then he cruised over to the ottoman and even to the chair. He has never done anything like that before, especially not with his braces unlocked. So I stood there watching in amazement. (But tried to act like it was no big deal--Toby doesn't like to put on a show.) Inwardly I was cheering and jumping up and down; outwardly I walked around picking up toys.
Soooo....Dr. orthopedic surgeon man take that!! God and Toby will decide what Toby can do. Not you! : )
I'm thankful that God allowed me to see this firsthand so quickly after the appointment.