We had a big day at Children’s Mercy on Monday this week. First, both boys had their 6 month check-ups with the Muscle and Nerve Clinic for their BMD. This will occur every 6 months from here on out to check for progression in muscle weakness, or other health issues associated with BMD. The boys saw a “Fellow” first. I had to look this up because I wasn’t sure how this was different from a Physician, Resident, Intern, etc. A Fellow is an individual who finished his or her residency and has decided to receive more training in a specialty area. He was a very nice young guy who gave them lots of high fives and asked questions about the boys, such as: Are they able to climb stairs? Can they hop on one foot? He asked if I had any concerns about the boys. The only concern I voiced about Chase was that it seems like he has been cramping more, with less activity. I feel like it is probably due to him being slightly less active due to his broken arm, therefore his body is getting a little less conditioned. The Fellow (sorry, I forgot his name) felt like that was likely the case, and hopefully once we get the cast off and he resumes normal activity, his body will accommodate. My only concern about Roman right now is that he seems to fatigue a little quicker than other kids his age. I realize he is only 4 and there can be a wide spectrum amongst completely healthy kids as far as activity and naps go. Roman typically sleeps 10-11 hours at night and naps about an hour every other day. I can really tell the day after he has not napped, he can be more emotional and sluggish and I have to encourage him to take a nap, so he isn’t quite to the point of giving them up completely yet. His preschool teacher has also mentioned that towards the end of his school day, which is only 3 hours, she can tell when he is getting fatigued because he becomes less engaged in activities. The Fellow didn’t seem too concerned about it, like I said, I’m sure that this could still be normal for a 4 year old, I just wanted to put it out there.

After meeting with the Fellow, a physical therapist and an occupational therapist came in to run some basic muscle function tests. Some of this testing involved the boys running, galloping, and skipping around the entire clinic. Of course they thought this was the best doctor’s appointment ever! At this time, Dr. Rinaldi, the Muscle and Nerve specialist walked in and observed their activities and continued to ask questions. The physical therapist did find that the muscles behind Roman’s ankles are tight, so she showed me some stretches to do to help keep them from shortening. I’ve seen kids on some of my BMD support sites who have had to start wearing night splints to keep those muscle from shortening, so I’m assuming this is what we are trying to avoid. The PT also found that the muscles behind Chase’s knees and hamstrings were tight, so she showed me some stretches to do with him on a daily basis as well.

Aside from the tight muscles, Dr. Rinaldi felt like the boys both looked really good and healthy. We talked a little bit about ways to help Chase out in situations such as when we go to the zoo, World’s of Fun, etc. that involve a lot of walking, because he will get some pretty aggressive cramps in his legs. He is not wanting to ride in a stroller anymore, which I don’t blame him, but after carrying him to the car the last time we had one of these outings, I hurt my neck and back pretty bad so we are going to have to figure out something. Rinaldi said there are specialized “big kid” strollers for kids with medical needs, but neither of us felt like he was at this point yet. Along with me bulking myself up by lifting weights, I’m in search of a wagon or something similar that will help him to take a break when he needs it, but that won’t make him feel like “a little boy in a stroller.”

After all of that activity, I requested that the boys get their flu shots. This wasn’t a big deal, but I wanted to mention it because Chase just blew me away by his actions and words in this moment. The nurse walked in and asked who wanted to go first. Roman quickly said “Chase!” Chase stood up and said, “I’ll go first. I’m the big brother. I will show Roman it’s not so bad.” I’m telling you what, I got tears in my eyes from how amazingly brave this little guy was. He walked right over to the table and sat down, the nurse decided his arm was too small so she told him it would have to go in his leg. She prepped the area and he said, “I don’t care if it hurts, just do it.” Well, she did it and he said “Ouch. That wasn’t so bad. See Roman?” Oh my heart. I know that one of the reasons he is so brave and tough is because he has had to be brave and tough from the day he was born. When I think back to all the testing and needle pokes this guy has been through in his short, little life, its not wonder a flu shot is nothing to him. Well, that and he has super powers.

Goodbye stinky cast!

When it was Roman’s turn, lets just say he wasn’t quite so cooperative. She decided to do it in his leg too, and we both had to do a combination of a bear hug, and a Mandt type restraining hold (any of you who have worked in a residential setting knows what that is) and my goodness that boy is strong and scrappy. I have to hand it to the guy, he just about knocked the shot out of the nurses hand. We got it done though, with some tears and sweat, we got it done.

We finished up in the Muscle and Nerve clinic, made our appointment for our next 6 month check-up which will include a visit with a pulmonary doctor, and we headed to the Orthopedic clinic to get Chase’s cast off. The visit went very well, everything healed just the way they wanted it to, and I am proud to report that the guy who removed the cast said Chase had the stinkiest cast of the day. We were so glad to get that thing off. Not only was it a long 10 weeks, but his skin was really starting to suffer. His entire palm looked like it had been scalded because it was sooo red and peely, they thought he might have had a bad reaction to the material. They felt confident that it would heal okay with just some mild soap and lotion since the irritant was taken away. He will have to wear a brace for the next 3 weeks when he is involved in activity, basically when he is awake…. he is also not suppose to do any high risk activities, such as monkey bars or trampolines for the next 6 months because there is like a 60% chance of rebreaking the area due to the type of break and location.

The nurses gave them teddy bears!

Now I need to work on moving forward and finding a balance between letting the boys learn hard lessons on their own, and being a helicopter mom. I never, never, never want to go through another broken bone again. I know, it’s impossible to control, especially with two rambunctious boys. The crazy thing is that Chase is my careful one. This fact really scares me for the future.

I can’t even tell you how much Chase’s broken arm still affects me today. A part of it may be because it occurred so soon after the boys’ diagnosis’s. I was already working on trying to let the boys determine their own limits, and letting them do the things that little boys do without me following behind them saying, “don’t do that, you’ll get hurt.” I want to let them enjoy running, climbing, jumping, and swinging from things for as long as they possibly can.

Chase was so excited that he finally conquered the monkey bars and I truly delighted in watching him. He would climb up to those bars and you could just see the determination in his eyes and he would muster up every ounce of strength that he had, a strength that most kids take for granted. I knew that it wasn’t easy for him, and his hands would sometimes ache for hours after a day at the park, but that didn’t stop him from asking me that day to go to a park with monkey bars so he could practice.

I could not sleep for days after it happened because I could not get the image out of my head of running up to him on the playground and finding him laying on the ground, holding his arm and crying out from pain and fear. I know kids and adults get broken bones all of the time, and go on to heal just fine. I was not prepared for the feelings that have followed. The day Chase broke his arm started off like any other day. When he fell, I went over to him expecting to find him crying because maybe he had a bruised elbow, or ego. I never expected to find him that way. The instant I saw his arm, my heart broke in a million pieces and my brain screamed, “This is not right!!” I know on a head level that it is impossible to always catch my children when they fall, but darn it, I can’t shake the feeling on a heart level that I should have been there to break his fall.

I know that in life, finding a balance for just about everything is key, but it is a continuous challenge. I have to put my faith in God to watch over and protect our kids to the forefront every day. I continue to believe that God has a big plan for Madison, Chase and Roman, and sometimes broken bones,  stitches, etc., as much as it pains me in the moment, may continue to be small hurdles in that plan.

Yesterday we took the boys to the Kearney football game so we could watch Madison play in the marching band at halftime. Chase asked if he could play on the grassy hill for a little bit before the game started. I took him to it and I watched him run up and down the hill, rolling a few times and I really had to fight the urge to tell him, “don’t do that, you might get hurt ” or “don’t do that, you know the grass will make you itchy.” He was having such a good time, all by himself, going up and down that hill. Every now and then he would stop and pick a dandelion and blow on it. I could see him a few times look up to the sky as he made a wish. It was such a sweet and simple moment just watching him joyfully be a kid. I let him enjoy his moment in the grass. I let him enjoy being carefree for 10 minutes, because 10 weeks of restricted activity probably felt like 10 years for an active boy. I let him run up and roll down that hill because his legs were feeling good in that moment, and I knew that in 5 minutes his legs may not feel so good. I let him enjoy doing all of these things without his mom telling him to be careful……until he came to the top of the hill and said, “I’m going to do backward rolls all the way down,” and he started to get into position……This is when I stepped in and said, “No, backward rolls down this hill is not a good idea. We just got the cast off 5 days ago, lets not push it.” Balance is key. I just have to trust that God will continue to help ease my anxiety so I can let my children enjoy being children. I also have to trust that He will help me catch them, when they are meant to be caught.