Sooo much to process

The past few weeks have been a blur. We have been taking in as much of summer as we can but it has been bitter sweet. It seems like time is flying but my head and heart are stuck in a place of preparation for the next shoe to drop. I know it is not a good place to be because instead of focusing on the here and now I am focusing on the future and what is next and trying to prepare for that. It's exhausting and a sad place to be because my family and friends are getting neglected.

A little recap of summer:

Every summer I schedule Wyatt for his annual appointments in order to prepare for his visit to Nationwide Children's hospital certified Duchenne clinic. It is a busy time of year and creates anxiety waiting to hear how much has changed since last year. Last year I called it preparing for the storm and that is what it feels like except part of the storm came in April and I feel like we are still in it's mist.

Last week my mom and I headed north to Ohio. The neurologist was surprised Wyatt stopped walking. All of his normal strength tests were done and found that his upper body continues to be very strong and his legs are still pretty strong...it's his hips that have progressed so much faster than the rest of his body. We discussed Wyatt stopping the trial and talked about other trial opportunities. As of right now, he was wary about Wyatt participating in the micro-dystrophin trial. Though Wyatt does meet the criteria of one of the trials, due to his deletion size and the location of his deletion there is an increased risk of complications that need to be researched more in order to make an informed decision. Patrick and I heard this at conference so we were preparing to hear this from Dr. Flanigan but hopeful. Unfortunately looks like it would be in Wyatt's best interest to hold off for a while longer to see how other boys do with the micro-dystrophin.

We also met with his cardiologist who agreed that his heart is stable but she decided to increase one of his medication and add another medication to maintain his heart function. We like proactive treatment as opposed to reactive and that is why we go to Ohio.

We also met with the dietician. I always prepare to get fussed at because I know Wyatt is small but my head says I would rather him small so I can pick him up easier. Since he stopped walking I changed his milk from whole to 2%...well bad decision. His BMI has dropped over the last year which is not good. He is currently in the 3rd percentile and the dietician said they like the DMD boys to be around the 50th percentile so they can continue to thrive. So going forward Wyatt gets to eat whatever he wants (the diet we would all love LOL) but he just doesn't eat a lot so adding butter, cheese, and full fat milk is on his menu now.

As for pulmonary, she said we need to stretch his lungs daily with his cough assist especially since he is no longer walking. The physical therapist asked about a new chair for Wyatt and I was happy to tell her that the new wheelchair will be delivered this week. We got the standing option that the insurance company likes to deny but we feel it is medically necessary and so does the physical therapist. They would like Wyatt to be "standing" 8-10 times a day. The chair is supposed to be delivered Friday so we will build standing regularly into his routine and hopefully he will also do it while at school.

Anyways sorry for the long update but this is all the things that I have been trying to process since we got home last week, actually for a few months. Besides processing all of this information we are trying to get the house ready for the ceiling track. Though we are still waiting for the state to get their stuff together we decided it was necessary to get it ordered. As much as I want to be superwoman and be able to lift and move Wyatt with ease I am worried about hurting him or myself. Unfortunately, I think I already hurt my arm from all the transferring of him and the wheelchair while in Ohio.

On a happy note, we have had some fun things happen over the past weeks...one of which was a gift from Louisiana State Troopers, troop B. In September we will be traveling to Texas to see the Angels and Astros play because Wyatt's wish was to meet Mike Trout. More to come from when this happens.

Only 2 weeks left of summer and I'm ready to try and take it all in and enjoy it. I want to focus on those I love and make sure they know that even if I'm not in my "normal happy state of mind" that I love them dearly and may just need a little more time to process all the information and feel good about the preparations I have made in my head. Wish us luck that the school year will start off smoothly and all of my preparations will pay off.