Just checking in. You were having a bad morning last week, hope things are going better this week. I have to say it's amazing how many of us mom's here are nurses...hmmmm...makes me wonder sometimes. Anyways, Wyatt is a cutie pie! You sure make cute kids! (and the next one if you decide that's the right choice for your family will be just as cute I'm sure!) Take care of yourself and have a fun halloween!
Whatt is so precious. Please know that my heart goes out to you. We tried the steriod route with Kory but it changed him so much that we decided that it wasn't for us. He took the prednisone for 3 years. At that time that was pretty much all they offered. He was six when he started it and 9 when he stopped taking it. At the age of 8 he had the heal cord, knee & hip releases. He was in cast from his feet to his hips afterwards. Afterwards he struggled with walking. This was the one surgery that I regret ever doing!! Exactly a year later he broke his left femur bone. It was a bad break and he had to have a rod placed in it. After that I decided that between the side effects and brittle bones that it was time to get him off the steriods. Almost a year later he broke his leg again. He had spinal fusion when he was 13. It was a rough sugery but I really feel that God let me keep him for 3 more years. We were told that he would be totally bedridden within a year if we didn't have it. His curve was horrible. Unfortunately, because the surgery was so long it caused Kory to get recurrent pneumonia. His lungs just didn't take the anesthesiia very well. We knew his lungs were in pretty bad shape about a year before he passed away. He had a cough assist, CPAP and oximeter (I think that's what it was called). The oximeter broke a week before Kory died. The supply place had ordered us a replacement part for it but it was going to take 2 weeks to get it. It's kind of like God didn't want me to know how low his oxygen was those days prior to his death. It's things like that makes you think about the whole thing. Everything happens for a reason. I still don't understand why our boys have to endure this disease. Maybe one of these days I will understand. But it's like I said there's some reason. This disease changed me and everyone that Kory knew. He was such a wonderful young man!! Your son will amaze you. He'll show you so much strength and love. He won't understand why either and he'll question you as he gets older but somehow he will be your strength.
All I can do at this point is help you all fight for that desperately needed cure. Just know that you are in my thoughts and prayers!
We're looking forward to meeting you, Wyatt & Patrick. Yes, Nicholas will be coming and his sister, Brooke will be joining us too. I'm a LSU alumni as was my father and both my sons. We've been supporting the Tigers all our lives. Wyatt is precious... love those big blue eyes. I see Erin has given you her cell number so be sure to get in touch with us.
Looks like you will be able to make tailgating. We are looking forward to meeting you and the other families. We will be spending Friday night near campus. Nicholas (5) and Brooke (2 1/2) will be with us. Still not sure where we all will be meeting up. My cell # is 832-724-1458.
Lane was about 15 months when we first heard the possibility of MD. It was by pure accident...and a great family dr! Lane had an ear infection at about 14 months..and tomake a long story short..he just didn't act right and slept all the time. Our Dr. did some blood work..his liver enzymes came back elevated and he sent us to UK clinic. When his levels never came down a GI specialist tested his CK and so we moved to the testing for muscle disease. He had his fisrt biopsy at 17 months and they told us he did not have MD. A month later we go for follow up and they tell us he has Duchenne...but they did not do the correct staining on his muscle tissue! After a couple more horrible visits with the neouro's at UK..the Kentucky MDA clinic...I started looking for another clinic. I sent an email to the chief of neuorology at Cinci and within 20 mins Dr. Wong emailed me back telling me to bring Lane to her. Our first visit with Brenda was on Nov 18, 2002. And as I'm sure you know she is a God send! We had to re-do the biopsy but I had to know what we were facing. By the time we knew for certain Lane was about 21/2 yrs old but we started him in a state funded program of early intervention that included speech, PT & OT. In KY the program was called First Steps. They really helped with excercises incorporated through playing. Then by the time he started Deflazacort he just really began improving. I never stressed too much on doing the by the book stretches because Lane is so active climbing, jumping, etc. Does he receive PT now? Our PT had great ideas of fun ways to stretch etc.
They may have told me about the egg mutation deal..but you know how it is when you go to clinic so much info and I was never going to have more children because I knew how much care Lane would require. I also have a 10 yr old daughter so I was fine with having 2 children. I just remarried in May and had been on birth control so I never dreamed I would still get pregnant. Hope I havent bored you to pieces...if you have more questions please ask away!!! When do you go back to Cinci?
We are planning to bring all our kids. We are not going to the game. I had heard that if you did not have tickets to the game you could not tailgate in the parking lot. I don't know if this ever went through. I guess this event is different or maybe they will have us somewhere on campus. Maybe that was just a rumor. Either way we will be there for the tailgate party,. Can't wait to meet everyone and their families. We are all family for the long haul. It is comforting that all of us will always keep in touch somehow and be there to totally understand what the other is going through. See you soon. Kim
I have a MOPS meeting tomorrow from 9-11:30. I will be going home after that. If you want I can call you when I get home. What time does your little one get out of school? I don't have your number though. You can call me around 12:30 or email me your number. Talk to you soon. Kim
How was your trip to Ohio. I am dying to hear all the details. I called dr. Wong's nurse on Wed. and she called me back on Fri. I never got a hold of her before the end of the day, but she said she would call me on Tues. since she was off today. Were you satisfied with your visit? I just have so many unanswered questions that I feel Barett's neurologist cannot answer good enough. I hope all of your questions were answered. Give me a call when you get a chance. My number is 225-673-4060. Look forward to hearing from you.
Hey Jessica, thanks for replying. Beau is doing great. He is now walking up and down stairs without assistance, which I never thought would happen. He is running and climbing, but still not jumping. His deletion is number 54 junction with 53 (not sure what all of that means though). Beau had some physical delays after he learned to walk at 16 months, so we started him with physical therapy when he was 2 1/2 and then was diagnosed a few months later. We thought it was just low muscle tone, but we went to the neurologist to find out the reason why he had low muscle tone. His CPK levels came back at 20,000, so we knew then it was probably MD. We did the genetic test and it came back positive. We are assuming it is duchenne because of his age and his delay.
We are going to see Dr. Wong in January. We are really excited about that. How was your trip up there? Did you leave encouraged?
You asked about my girls...they are almost 6 and 2 1/2. Amelia and Beau are 13 months apart. Amelia has been a great physical therapist for him because she has now gotten quicker than he is, so he is trying to catch up with her. Although he got mad at her yesterday because she beat him, so he bit her!!
So tell me about how Wyatt was diagnosed.
Yes, we are planning on tailgating. Lori Ware and I are trying to get a spot where we can set up to tailgate. Not sure about getting tickets to the game though. My husband is a diehard fan.
How did you all fair in the storm?
Yes I emailed her yesterday after her response to Ada at the PR firm. That is so sweet of her to offer to do this. I think we can all get together and make a statement. feel free to give me a call 281-213-3199.
I just joined the community. Our son Beau is 3 1/2 and has DMD. Your son looks like my son with his blonde hair and blue eyes, so I thought I would send you a message. He is so cute. How is he doing? How old is he? We live in Birmingham. What about you?
I saw that you are in Cincy? Did you get to go (with the hurricane's and all). If so, how did it go? It was overwhelming to us at first and yet, SO amazing!!! I hope you had the same experience.
I was looking on the Run for our sons posting and I saw that you were planning to go to Disney. I have signed up to go. I understand your reasoning for not training anymore. However it is exciting to know someone near me is going. We are going to stay the rest of the week with the kids. Give me your phone number again, somehow I deleted your email. Did you have any problems during Ike? Talk to you soon. Kim