He loves visiting the pet store.

It has been 3 years since their diagnosis, and 1 year since the last time I wrote an update on here. Life is busy with two crazy boys, and one in college. It is a good busy, which for me is a sign that things are going well. Roman and Chase are both doing well in kindergarten and second grade, and they have overall been very healthy this year! I don’t know what I would attribute to the fact that they have avoided most of the nasty sicknesses that have gone around this winter, but we are very thankful! They get about 10 hours of sleep a night, I try to make them nutritious meals (although they dislike most of them not involving pizza and chicken nuggets), and I have been giving them a slew of nutritional supplements every morning that include multivitamins, vitamin D, and Coenzyme Q10. I also joke with my husband that I forget to have them wash their hands on a regular basis, and this may be how they are building up their immune systems. Since Chase was a preemie, I used to be so careful and vigilant about everything around him being extra clean. Of course in the early days this was very important for him because he did not have an immune system that could fight things off. When Roman came along though, man, lets just say he was a very tactile kid. He touched and put EVERYTHING in his mouth.  He also has his germy “sleep sack” lovey that he has drug around with him since he could walk. This kid honestly probably has the best immune system in this house. I have come a long way from scrubbing everything and making people wash their hands before entering my house, to getting used to my boys always having dirt under their fingernails. There are times when it is not until after they have already sat down at the dinner table and started eating, when I can see the dirt on their hands, that I say “shoot, go wash your hands,” but I am pretty sure they have already ingested a few thousand dirt particles. Now, I am mostly joking about this and realize their are families who have children with compromised immune systems, who really do have to take precautions. Exposing those children to germs absolutely WILL NOT build up their immune systems. I realize how blessed we are right now, and that whatever we are doing, it is working.

Just being himself 🙂

Some of you may remember that we moved away from the Muscle and Nerve Clinic at Children’s Mercy back in October, and started seeing a new neurologist at an MDA Clinic at KU Med. We were happy with our first visit, but since the boys were new to him, he wanted to do a follow-up in 6 months. We just had that follow-up on Wednesday, and it went really well. The boys were taken through numerous muscle tests by OT and PT, and they both passed every, single, one of them! I also had a visit from a lady who focuses on the emotional health of individuals dealing with chronic diseases, which was a first for us. She also helps with advocating for families who find themselves in difficult situations with schools, or coaches, who refuse to make accommodations for their conditions. We are so lucky that the boys go to the school that they go to. The staff honestly goes above and beyond for their students, and I have never had any doubt they would meet my boys’ needs. We immediately got Chase set up with a 504 Health Plan when he entered Kindergarten, and within a few months of being there, his teacher noticed him struggling academically. She got him set up for an IEP evaluation, and we have had that IEP in place ever since. I told this lady that I feel like even if these accommodations weren’t in writing, the staff at this school would still accommodate as needed. They are just that amazing! It was really good to talk to her about where I feel the boys are emotionally dealing with their conditions, as well as, my own anxiety level trying to balance letting them be BOYS, but also keeping them safe.

After all of the muscle tests were completed and our talk about our emotional health came to an end, Chase, the OT, PT, and emotional health lady (sorry, I can’t remember her title) spent the next 30 minutes or so talking about Chase’s love of cinematography. He showed them his YouTube channel full of videos he shot and edited, and he gave them a quick tutorial on how to use an iPad and how to shoot videos in iMovie. Before they left, they all took down the name of his YouTube channel and told him they would be spreading the word about his fame. He was beaming with pride! Dr. Statland came in shortly after and the first thing he said was “I hear we have a movie star in here”.

Trying out some dune buggies on a rainy day

Dr. Statland took them through a few more tests, and again, they passed every one of them. Roman’s heel cords and calves have loosened up quite a bit and he no longer walks on his tip toes. This is pretty huge since they had previously talked about the possibility of having him wear night splints (which he never would have worn). His right ankle is still a little tight so we have to continue doing stretches for it. We have also been a little concerned lately because Roman has been complaining of headaches. He had a particularly bad one on Monday evening. Dr. Statland did not seem too concerned about it, he said some kids do just get headaches, and there could be a number of causes. As long as he seems to get better with resting, hydrating, and ibuprofen, it wasn’t anything to be too concerned about, we are just suppose to monitor it for now.

He spoke to Chase about how he is feeling, and Chase told him about how his body cramps up when he plays sports. He asked Chase, “When during practice does the cramping tend to happen,” “What do you do when it happens”, and “Does it ever deter you from wanting to play.” The cramping tends to happen during activities with a lot of excursion, and towards the end of practice when he starts getting fatigued; he sits down and drinks some water until it goes away; and no, it absolutely has not deterred him from wanting to play. It does make things a little difficult for us at the end of practice because he has a hard time getting to the car, especially when Mark can’t be there to carry him. He is also at an age, unless it is really bad, he does not like his friends seeing him being carried by his parents. Dr. Statland just reiterated that there are some sports that he absolutely should not do, such as soccer and football due to the high impact and running involved, but as long as the pain is not deterring him right now, we should just let him keep playing, and try to have him take a few more breaks. His two loves right now are basketball and baseball. Basketball may prove to be difficult as time goes on due to all of the running, but baseball could be a good fit since there are a lot of chances to sit. So far we have had some pretty great coaches who are understanding and let Chase sit out when he needs to.

Scout Day at the K

Due to how good they look on all of the tests, they do not have to go back for a full year! At that time we will schedule their appointments with cardiology and pulmonology for their two year check-ups of their hearts and lungs. Of course if something is concerning before the one year mark, I can call and they will get us in sooner. Dr. Statland stated that there is still no way of predicting what their progression may look like as they get older, it is too hard due to the nature of this disease, but we are very optimistic about their prognosis right now.

Right now, we are looking forward to a fun summer of t-ball, baseball, swimming, roller-coasters, movie-making, and a couple of fun summer camps. Speaking of summer camps, Dr. Statland asked me if they were going to go to the MDA Summer Camp this year. The MDA Summer Camp is that amazing, week-long, overnight camp specifically for children with Muscular Dystrophy. I told him they (I) weren’t quite ready for it this summer, but we are shooting for them to go next summer. They will technically still be in school the first week of June when this camp is scheduled, but I already got the “okay” from their principal for them to go next year. She thought it would be an amazing opportunity for them (I told you their school is amazing)!!

That is it in a nutshell. They continue to be complete opposites in all that they love and do, however, even being that they are opposites, most of the time they are best buds.

I have included a link to one of Chase and Roman’s movies, Super Kids, for anyone who would like to see their work 🙂

I don’t know who Chase gets his crazy love of roller-coasters from 🙂