So, early this morning. We went to what I tell Noah is the " bone doctor" he basically did a confirmation and delivered some pretty heart breaking news. What Noah has is Legg-Calve-Perthes. It's a form of osteonecrosis, that occurs in children, mostly boys.
Basically, what we already knew. The hard part? Noah is not allowed to run, jump, ride a scooter, play sports, or anything similar at ALL, for the next 3 YEARS while the cells build the bone back up. In short, his body needs to make a new bone. If he doesn't rest, the bone won't heal, and can collapse as he gets older. We have to go in every 3 months for xrays to check progress and determine whether anything else needs to be done other than restricted activity. Crappy part? After doing some research. It appears that even after the 3 years, if it doesn't heal, he could need surgery, etc. So I may very well be making him miserable when the outcome could be the same.
How ever am I supposed to tell my active 5 year old he can't play like a normal little boy? He can't run around his backyard with his sister? Play the same as the other kids at school? I've been telling him today his bone has an owwie and it's very important that he not run, jump, or climb. He seems to be ok with that. But for how long?
I'm so angry and sad. I feel like pieces of his childhood were just snatched away from him and us.
Crappy part number 2? He has an arch in his foot. His Orthopedist said not a lot, but he does. He also said that only 10% of kids his age have an arch. By the time children get to be about age 11? 75% do. DAMN that doctor he saw. He may have had a quicker recovery if she would have done her job or knew what the hell she was talking about. Thank God I didn't take her word on it forever. Number 3? She also is the one who saw Abby for her "pidgeon foot" and Natalie's "bow leggedness". " Oh, they'll be fine, just stretch their legs" Fat chance in hell now lady. They're going to another doctor ASAP. I will be also be at least filing a complaint.
Well, I guess I should stop ranting now. We're trying to stay positive for Noah and make this as easy for him as possible. One of the staff there today referred to him as a " disabled child." I was looked at like I had two heads when I told them " No. He is not disabled. He has temporary limitations" And it is the truth. I'm going to do everything in my power to make his life be as normal as possible until this is better. My Mom and I sat down, called Jerry, and made lists today of activities he can do besides the obvious. Swimming, light horse back riding, art classes, walks, mini golf, photography, gardening, trips to new places, etc.
In addition. I'm not giving up on this. I'm going to try and find a specialist, and do more research. There hasn't been much research done on this disease AT ALL. They don't even know what causes it. The Orthopedist said it's " Idiotism. Where the idiot doctors don't know what the heck is going on" Leave it to my son to get something difficult ;)
I almost burst into tears earlier. He ran into the living room waving a picture he made for me. At the top was written " MOMN" he was so proud I couldn't stand to lecture him on running, so I just reminded him not to after and cuddled him for the picture.
Ugh... I want my baby to be perfectly healthy and be able to do everything he's been planning. Life sucks and I demand that this transfer from him to me. Wishful thinking...
Thanks again everyone for the nice comments and messages. We really appreciate it.
