Hello Everyone! Once again I am behind on updating!! It is amazing how quickly time goes by! The last couple of months have been extremely busy, and we have a busy month ahead of us as well. Conner had a wonderful birthday! I can't believe he is already 11 years old!! It seems like just yesterday when he was born. I am going to post a link to youtube where you can watch his Superhero's do a dance for him at his party. He loved it!! He loves music though and especially likes it when I act goofy and dance for him. So this year for his party we told the Superhero's they had to step it up a notch and do a dance for him. They did great and have the best attitudes about being goofy and crazy for Conner. I will also post some pictures from the party! As always his party was awesome!! We are blessed with some of the greatest friends and family!
Conner has been doing good, he did have another episode of urinating blood last week. We have been keeping a log of when this is happening, trying to figure out what is causing it. It is happening every 2 1/2 months almost to the date every time. We did a urine culture and it came back infection free as it always does, so it honestly doesn't make any sense why this keeps happening. We talked with our pediatrician, kidney doctor and urologist in Dallas last week, and more than likely they are going to have to go in and scope his bladder. They probably will even do a little biopsy of his bladder. Something is clearly going on in there, since every time this happens his urine culture comes back as no infection. It is absolutely horrible on his body when this happen.. His nervous system goes crazy, which makes his heart rate go sky high as well as his blood pressure. Spinal cord injuries make crazy and scary things happen to your body when you are in any kind of pain. So it was a rough week last week and through the weekend. However I am thankful it happened last week, because we are scheduled to go back to Baltimore next weekend for our 2 week out patient spinal cord therapy. We will be there the last week of October and first week of November. We had to miss our trip in May because of this same issue. He actually ended up in ICU in May because his blood pressure was staying up so high. I am thankful the last two times we have been able to avoid having to go to the hospital. These episodes only last about 5 to 6 days. It is very strange and definitely needs to be figured out ASAP!! His body just can't handle constantly going through that every 2 1/2 months. We are suppose to get with our urologist in Dallas when we get back from Baltimore to see about scoping him. So please be praying we get this issue figured out soon.
We also are having an issue with his right hip and right arm. He is weaker on his right side, so he doesn't have the same muscle tone on the right as he does the left. While we are at Kennedy Krieger they are going to have one of their ortho doctors look at him. We did a ton of X-rays on his hip and his arm today, so we can take the images with us. The right hip is actually popping in and out of socket, and his arm at his elbow joint is doing the same thing. This of course causes him a lot of pain when it pops out. We talked to our therapist at Kennedy Krieger and they said this isn't necessarily uncommon due to the fact that he was a baby when the accident happened. Over the years he hasn't gotten the adequate amount of weight bearing through his bones like a normal child would, and it has affected his hips. We are praying that he doesn't have to have surgery to fix the hip in the future. This is one reason I am so thankful it is time to go back to Baltimore, because they will be able to get a really good assessment with this issue and they are amazing at coming up with different strategies to help correct the problem without always having to do surgery. He has gone through such a growing spurt this past year, which could also be part of the problem as well. We do hip x-rays every year in October, and last year the hips looked okay, so all this happened within this year. We are praying for another solution, other than surgery!!!
We got to go to Houston, Texas with Conner a couple of weeks ago. Kennedy Krieger was there at one of the big Hospital's doing a seminar and training about the type of spinal cord injury therapy they do. They used Conner for a hands on demonstration of how they do therapy. It was a great experience to get to do that. Plus we got to see our therapist!! We love our Baltimore girls, so we jumped on the chance to get to see them. The first night we got there we got to have dinner with all of them. That was nice, because we just got to sit and visit. We are so busy with therapy at Baltimore, they we don't get to just hang out and visit. This particular hospital in Houston does spinal cord rehab on adults, and is trying to transition to the type of therapy techniques that Kennedy Krieger does. They were all very intrigued with Conner and the progress he has made over the years, especially since he has such a high level of injury. They were very impressed with how healthy he has been all these years, especially his lungs. God has really kept his hand on Conner's lungs that is for sure. He should have chronic pneumonia and tons of lungs issues being on a vent and trached. I am so thankful he doesn't, because there is nothing worse than being in the hospital, so I definitely don't want to spend the biggest part of our life hospitalized with lung issues. We do our best to be as sterile as possible and to keep Conner away from sickness!! This time of year is always the scary time with it being flu season, but we take all the precautions we can and just pray over him to not get the flu. The boys know the minute they come in the door to wash and sanitize their hands. I have them trained pretty good now, they even ask for the sanitizer the minute we get in the car from being in a store or restaurant. Back to Houston though, it was a great opportunity and I hope our story will help inspire them to never give up on their patients recovery! Conner still continues to make progress every day! So never say never!!
When we get back from Baltimore, Conner's pulmonologist is going to do a sleep study on Conner. They are wanting to see what he does breathing wise, when his body goes to sleep and isn't thinking about breathing. He is breathing so fast when he is on the vent and has been for a while now. He is doing great with being off the vent, but can only go about 6 to 7 hours total before he gets exhausted from working his diaphragm so much. Also to be completely honest, I probably baby him to much on this area!! I get so worried I will push him to the point of not wanting to do it! I have to over come that fear as well! When we go out with him, I always tell Robbin we are taking him on the vent, because I am afraid I want be paying as close attention to him as I do at home. This is another fear I need to overcome! I just feel like I have to watch him like a hawk though, so I don't enjoy what we are out doing, because I am constantly hovering over him. So it is just easier for me to leave him on the vent when we go places. This is an area I have really been praying for God to give me strength to overcome! I am curious though to see how the sleep study is going to go. When we go to sleep our body naturally takes over, so they want to see what Conner's does when he isn't thinking about breathing! Sometimes when he has to think about it, he gets anxious! I believe we do this on November 11th. I will update you on how that goes! This is actually an exciting problem to have, because basically he is getting so much stronger in his lungs, it is time to start getting off the vent full time. Maybe it is me that needs the prayer for this problem and not Conner, haha! Never in my life would I have thought I would have to deal with any of these issues for my kids!
I feel like I just overloaded you with a ton of info! That is what happens when I get busy and let so much time pass before I update! We thank you for keeping up with Conner's journey and for being faithful at loving and praying for him! He truly is a miracle and that is because of all the prayers constantly being lifted on his behalf. We love everyone and will be posting pictures and updates while we are in Baltimore!
Here is the link for the youtube video https://youtu.be/2NhI5XUOFqk
Robbin, Sonya, and Conner