 | ||
| Frazer, Ronald and Houlder |
Yesterday, we moved to the Ronald McDonald House. Houlder's program recommends it as the kids can have a more dorm or camp like expereince. The staff are amazingly kind and there are kitchens on every floor and after one night, I think we are getting around okay. I was not sure if I had the fortitude to manage all the kids at RMH with heart-wrenching stories that pale in comparison to ours. But, I believed we should try and we are. Frazer wanted to move to RMH as they have a game room with every video-game device made, tv, craft rooms, in-room touch screen computer/tv/video machine. He is delighted.
Yesterday afternoon Fraz played mario cart on wii with a 9 year who had a heart transplant when she was 20 months old after spending 15 months in the hospital. She is here after living without difficulty for five years, because her body has been rejecting. She walks around with a mask and two lumen hanging off her body, and she and Frazer had a great time. It is an interesting way to make what seems atrocious normal. Kids are kids. My mother worried about Frazer asking inappropriate questions but asking personal questions about health and why you are here seem to be common place. And, he has not said anything remarkable -- yet.
Oddly enough we met another Richmonder. She has POTS too. How is that? She said three girls in her class have it. Mayo still swears it is rare but there are dozens of cases in Richmond. What the heck?
What is POTS? Postural Orthostatic Tarchycardia Syndrome which is a mouthful. In short, Houlder's heartrate whacks out and his blood pressure is too low which gives him headaches, blurry vision, brain fog, dizzness, fainting, and GI troubles. He also has the added bonus of a chiari malformation which is a delightful situation. One's cerebellum hangs low into the spinal column instead of sticking up with the rest of it. The low-hanging brain is called cerebral tonsils. They can also be the cause of headaches when he sneezes and coughs.
The treatment program is to treat the pain. Three weeks of 8-5 Occupational therapy, physical therapy, recreational therapy, group classes, biofeedback, individual classes to basically learn to live with the pain.
Yep.
Mind over matter.
Yep.
Okay.
Many of kids who are in the program also have depression or anxiety due to chronic pain and health. We dodged that bullet and are hoping for speedier rebound.
Houlder has enjoyed being in the company of other kids with POTS or some other painful chronic health issue. There are kids who came in wheelchairs and are walking out. Others who have been disabled for years.
The program lasts 17 business days and there are graduations once or twice a week. Here is a 12 year old's graduation group photo. He had been in bed without leaving for one year and is walking out.
 | ||||||||||||||||
| Pediatric Pain Rehab Kids |
This week, 3-4 new kids will join in and Houlder will be able to say he is on Day 3. Not such a newbie.
We took a cab to the movies yesterday, and Houlder saw Safe with a group friend. They are working on a Coldplay song to play for graduation on the guitar which is awesome to me that they have those. One of the girls can apparently sing which will be great to hear. There will be a pizza party at Ronald McDonald for them. It should be fun.
Frazer and I saw Pirates:Band of Misfits.
We took a cab to the Hy-vee which is the Kroger of Rochester, MN. Bought a ton of groceries to fit in our little bin in the frig, came back, unloaded, labeled and put away everything to then made tacos for dinner. As much as I enjoy eating out and as much as I like not having to scrub floors, I do enjoy the normal quality of taking care of oneself RMH provides. Control over what we eat -- healthier -- and when is nice. Now we can pack our lunch and avoid the hospital cafeteria which was tolerable at best. We are responsible for cleaning up any space we use which allows Frazer and Houlder to have some chores.
Frazer begins seeing doctors on Friday and through the following week. He is seeing twice as many as Houlder did so I am curious about how this process will go.
While we were doing the intake for RMH, the nurse asked Houlder what he might want to do later on in life. He said go to college. When she asked if he knew what he wanted to be he said, "I never knew before but now that I am back at Mayo, I know I want to be a doctor and work in a teaching hospital. I am good at teaching and like it. My brain can do the math and science when I am not sick."
Okay.
Yep.
Not even sure what to think of that, and William will be reading this info along with you. How's that college fund, sweetie?
He can do it. I am just surprised. Truly, shocked is a better word.
At least maybe one of our children will be able to take care of us when we are old and decaying -- wait, is that now?
RMH encourages kids to get real mail as there are mailboxes and what not. So, you can write any of us at
Houlder Hudgins
c/o Ronald McDonald House
850 2nd Street SW
Rochester, MN 55902
William, Dell and Porter are progressing and handling the home front. We Face Time almost every day (like Skype). Porter loves sticking his eyeball up to the camera. Porter gave our wonderful friend Austin a time of it during the beginning of the week while she managed the kids while William and I were gone. His anxiety made him not the nicest kid. If you know Austin, she has survived an ordeal. Thankfully, she is kind and understanding. Porter even told me, "I was a jerk." Well, that's something.
Finally don't worry that the irony the House the Ronald built is offering us such great accommodations and compassion is not lost on me. All those times of avoiding the whines for McD's. Life is amusing.
850 @nd Street? Can I get clarification on that:) we are working on mail now:) much love.
ReplyDelete2nd thanks!
ReplyDelete