We have been home from Cincinnati for about a week now and trying to settle into Westley’s new plan of care.
Dallas and I are beyond happy with our decision to allow Cincinnati Children’s Hospital to manage his health. They were a well oiled machine and well worth the trip! The facility is top notch, their clinic runs smooth as butter and every person from the Doctors, Med Assts, PT, security to the lunch staff were kind and educated in their specialties. We have never been more impressed with a group of doctors when it comes to Westley’s care.
Westley had 4 long days of appointments; being poked and prodded (lots of bruises to prove it) and having to “live” in a hospital room the entire time. BORING! But we managed to laugh the days away and play lots of Uno.
By the end of each day we were beat but we made sure to have a little fun in the evenings. Our friend Renee asked her friends who are locals to reach out to us while we were in town. I thought it would be good to have a local contact in case something tragic happened. We actually ended up leaving with two new “Warrior” friends. What amazing women Cindy and Monica turned out to be! They met us in the hotel lobby Monday after we settled into our room. They brought fun things for Westley to give to the hospital staff and made him a super hero cape that seconds as a blanket for those cold hospital rooms. Boy did it come in handy. He even got one to give to another little super hero in the hospital. Tuesday night they treated us to the famous Skyline chili. Yum! Then on Thursday we hit up an authentic German restaurant. There was dancing on benches, accordion music, frauleins and everything! What a blast! Westley LOVED all of it; even the German food.
Back to the cape! (Because it deserves its own paragraph) It was our last day in the hospital and Westley still hadn’t found just the right kid to give his extra cape too. As we were leaving for the day Westley saw a little boy looking at the Lego’s in the gift shop window. He scootered over to him, took out the extra cape and said “Hey Buddy, would you like this?” When he turned around the little boy had IV cords, tape and a tracheotomy. He looked like he hadn’t had the best day of his life. He was very shy but told us his name was Colin, thanked Westley and let us grab a picture of the 2 of them. Next is the best part…. As he walked away I saw his mother lean down to hear what he was saying and then she said “Yes, you really are a super hero now!” and at that, he used the cape to “fly” down the hallway. We left with Westley saying “It feels so good to give.” It was hands down THE best moment of the trip.
What we learned (medically that is):
We were doing it all wrong! Ok; maybe not ALL wrong but there is so much to be fixed/tweaked. Some things we were taught in Richmond are not the best options for DMD boys. Here are a few highlights:
- Westley’s heart and lungs are in PERFECT shape!! These are key to life so the longer we keep them healthy the better.
- He needs MUCH more physical therapy; as in daily therapy. We were taught lots of new stretches and ways to wear his AFOs (leg braces) that will be more productive in keeping him stretched.
- His medication dosage is all wrong and some meds he doesn’t need to even be taking. He is also insulin resistant. He’ll need to lose weight over the next 3 months before we can fix the under dosage of steroids. Dallas and I have thought for some time he was under dosed but were told in Richmond he was fine. The entire family has now gone on a Low Glycemic Index diet. The boys seem to be taking to it very well. (All though we all miss our chips with our sandwiches.)
- Due to the length of time he spends in his scooter these days, its causing his posture and other things to suffer. Posture is key to continued ambulation and to fight scoliosis. We will be working towards transitioning him into a wheelchair full time. This may seem devastating to some but we have been preparing ourselves for when this day came. Now to work with the insurance to see if they will cover any of the $40k it will cost.
- He will need to have a neuro phyc evaluation to help us know how Westley processes data. This will help us find the ways he learns the best so he can be the best student he can be.
Dallas and I left this trip with a feeling of control over a disease we have no control over. We can’t wait for our follow up appointment in November. We thank you for your continued support and prayers.
As some of you know Monday the 12th Dallas and I are packing Westley up and driving to Cincinnati, OH to be seen by some of the best muscular dystrophy specialist in the country. There may not be a cure but they can help us give him a better quality of life. We have been unhappy with the care he is receiving here in Richmond. They have always been kind to us but unfortunately they just aren’t on the leading edge of this disease. All our friends with Duchenne that go to Children’s Hospital in OH have been huge advocates and its now our time to get Westley under their care too.
We have been putting off the trip for years due to the cost but with the help of a fundraiser we are now able to make the weeklong trip. I want to say a HUGE thank you to my friends Natasha Carrington, Kerri Blake, the owners of Godfrey’s and everyone who helped raise money during the H.O.O.P event. Without you this trip would not be possible. I hope you all know what a huge difference you are making in our community.
I have seen the disease progress at a more rapid pace this winter. He seems to have leveled out now but he wakes every morning with new aches and pains and needs assistance more and more. It’s heartbreaking what this disease does to him.
We will make the 8 hours trip Monday after getting Wyatt off to school. He will be staying home with my mother in law Patty for the week. Westley will then have appointments Tues-Fri with cardiologists, neurologists and pulmonologists. He’ll be getting an MRI, blood work (he’s not happy about this) and a glucose test. He will be checked from head to toe. We hope to come home Friday afternoon with a better plan of care for him.
Missing school should be exciting but Westley knows what long days waiting for appointments and doctors means; BOREDOM. We do get a little break on Thursday so we plan to take him to the zoo for a little fun.
I know these are going to be long exhausting days for Westley and Wyatt will miss us like crazy (even though I know Grandmama is going to spoil him rotten).
Please keep us in your prayers as we travel through this new adventure.
Jessica and Dallas