Saturday, June 11, 2011
The roller coaster has been his moving from house to house and I mean friend's houses not mine or his dad's. After a year, he has finally settled back in with his dad. I am still trying to push him to finish his highschool degree on line, but it looks like a GED is going to be his way to go...when he eventually realizes he needs to have something to move on in life.
It is very frustrating to me to see him feeling bad for himself. He has so many other talents if he would just use them to his benefit. I feel he is safe living with his dad. As long as he stays away from the drugs and alcohol I will be happy. We talk frequently and have lunch at least once a month together. I can't wait to spend several days with him over my wedding weekend. I am so very proud of him for what he has endured in his life. he is one tough cookie.
Saturday, May 1, 2010
His back surgery (to fuse the lower part of his back, not fused when he was 5) is scheduled for October. He has to donate blood for this one as well. This surgery will fix the very large curve that has occurred in the lower portion of his back as he has grown over the last 13 years. His hips are greatly out of line and he walks with a large limp. With the spine being fused and straightened it will realign his hips. We are hoping this fixes the problem he has been having with pain in his knees.I hate to see my baby boy go through so much, but hopefully these are the last. We knew he would have at least the jaw surgery once he was grown, but the back was not expected. I am so grateful for the wonderful surgeons we have and the skill they have to help Brian.
Brian is doing well with school. He should be finished with his online degree by December. He is driving his own car now...this scares me so much!!!! I know we have to let go sometime, but I am just not ready. He seems to be maturing a bit more. I love this boy with all my heart and pray that he makes the right decisions in his life. He has come so far and battled so much.
Saturday, November 14, 2009
He said he feels great. We are going to lunch on Monday, we get pizza and salad, he gets soup...but that's okay, we are excited to see him after a week as the swelling was still there last week.
I will be taking more pictures. Hopefully these I'll be able to post because as promised, I told him no swollen jaw pictures on the blog.
He is so brave!
Sunday, November 1, 2009
I have great faith in this surgeon to do a fantastic job. As always I am worried about Brian going under anesthetic and recovery. He is strong now though and will do fine. I can't wait to see my precious son when it is all over with. Brian has endured so much through out his life. I am very proud of him and how far he has come. As with many children I know he could always do more and wish he had applied himself more at certain times. However, Brian is a very good kid and stays out of trouble. I couldn't ask for more than that. He is maturing and growing up.
Please keep Brian in your prayers as we embark on a change. Prayers that he can handle the change that will occur as it will change his face, but only for the best.
Monday, June 29, 2009
Thursday, May 21, 2009
We were sent to see Dr. Lawrence Lenke at St. Louis Children's Hospital. They immediately put Brian in a back brace.
Brian's first backbrace he started wearing when he was just 14 months old. He had to wear it anytime he was upright. As he grew they made a bigger one. You can see they had to cut a hole in the brace for his feeding tube as it made feeding much easier and more comfortable for him.
As Brian got older his curve got worse. We tried going to Shriner's Hospital for the surgery, but they did not have an ICU and were afraid to have Brian there for any surgeries. So we stayed at SLCH.
This photo was taken while at Shriner's. By the time they decided to some some surgery, his spine was at 67 degrees. No wonder he had a hard time walking...besides the muscle tone.
They chose to put a growing rod in Brian's spine. This allowed them to get as much growth out of his back before doing a spinal fusion. In May 1996 he had his first growing rod put in. As he grew he had more surgeries where they would stretch his back along this rod and hook him back up to it, decreasing the curve for a while. I can't remember how many times he went through this, but finally in 1997, when he was 5 years old and in Kindergarten, he had his spinal fusion done. He was flat on his back for 3 months (he also had a wheelchair that reclined). He missed three months of school. After three months he remained in a back brace while in the upright position for another year. After that, he was brace free. He had a special brace he even had to wear in the bathtub. (I still have this back brace in his closet.)
Here he is about 4 years old playing with his cousins. The brace really did not stop Brian at all. (side note: He didn't walk until he was 2 years old and had tubes put in ears.) He wore the backbrace all the time. We had to buy bigger clothes for him to fit over the brace.
At this time he was still misdiagnosed and using a walker and still having the feeding tube. One day Brian had a huge welt forming on his back. We immediately called the doctor as puss was coming out of it. They took us in immediately and squeezed out about 50 ml of puss. It was so gross. They told us to go home, pack a bag, and get back for surgery that night. He had a staff infection and they had to stop it before it got to his bones. Surgery went fine and he went home on IV antibiotics. This happened several times over the next two years. They felt his body was rejecting the rod that was placed for the fusion. They were debating on whether they should take the rod out since the spine was fused. (Luckily during his most critical hospital stay he was correctly diagnosed and started on his mestinon. He has not had a staff infection ever again!!!)
UPDATE: He continues to this day to have the rod in his back. He still complains about back problems and pain. Once every 2 years he sees the surgeon for xrays. He will eventually need more surgery on his back as the lower part of his back that was not fused is now curving and his hips are out of line. The dr. feels he should wait a few more years for this surgery.
Sunday, May 17, 2009
However, life at home has been a lot calmer with Mike, Nico, Luca, and myself. The fighting is gone and the boys are happy. I saw Brian over mother's day weekend and we talk a couple times a week. I will see him again in a couple weeks. With him working during the week and me working weekends our time is limited. I have come to realize he is growing up and at least I know he is at his dad's and not out on his own or living with some other kids. I just keep praying he realizes what a special person he is and does something worthwhile with his life and takes care of himself.
I will continue his journey with Congenital Myasthenia soon.