End of week 1

Frazer, Ronald and Houlder

I feel like Jean-Luc Picard entering a the Captain's Log:  http://www.youtube.com/watch?v=O9u6WhuuiVI.  Only we are not saving the galaxy and have not encountered any Borgs (thank goodness).

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

One girl in his program has used the time to go visit St. Olaf's and Careleton this weekend which is such a great idea I may look into renting a car and doing that our final weekend.

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.

Day One

We arrived in Rochester Monday without any delays or troubles.  We checked in, had dinner and crashed.

Tuesday morning came and we headed straight to the PRC -- pain rehabilitation clinic.  As we waited by the desk and kid came up and introduced himself to Houlder asking him if he was going to be joining them (kids enter the program in a rolling fashion.  Phase 1-2 in as 1-2 graduate).  Houlder immediately broke out into his classic smile and shook his hand.  It felt good.

Tuesday was long as we learned many things.  There were classes for Houlder and me, parent groups, intakes, working with Frazer in the atrium -- typical first day anywhere --FULL!

Wednesday was basically a repeat.  The parents hang out in the atrium much of the time talking and sharing their experiences.  The program really encourages folks to stay at the Ronald McDonald House.  They had a community dinner which we attended and it is an amazingly nice facility.  We are on the waiting list but we are also not sure.  The hotel is closer to the campus in which Frazer will going and that seems a bit easier for him.

The kids at this time are mostly in the surrounding area.  Two kids drive back and forth every day, and three go home on weekends.  There is a 16 boy from Missouri, a 19 year old girl from Denver, a 12 year old girl from Jacksonsville, and a 17 year old girl from Bloomington.  Houlder is the first person in the program from Richmond.  They have a map in which the kids pin their home towns.

We are also started to pick up the lingo.  Houlder on his first day was minus 2.  So, his third day there is actually Day 1 until graduation.  And, it gets tricky not wanting to say, "Oh," in that Minnesotan way.  

Thursday, Day 1, Houlder began the regimen that they have him on.  Unlike what we are hearing about, he has entered the program excited and ready -- the coachable kid that he is.  In that way he does not fit much of what they focus on as his attitude and willingness to work hard are already there.  He had the focused relaxation down as well as guided imagery.  Hopefully he will move by leaps and bounds.  There are several kids who came in a wheelchair and are walking now which is pretty incredible.

Each morning begins with 30 minutes of stretching and I made Frazer join in.  I wish I had taken a photo.  Hood up, hands in pockets, looking at his toes.  After trying to cajole him into joining us for 15 minutes, I let him go back downstairs where he read.  That kid does not like a crowd or people talking about his eyes.  

Thursday lunch is provided by the program and there was a graduation cake for a 12 year old boy from Winnona, MN who graduates on toay.  He arrived in a wheelchair and had been in bed for over a year.  His mother brought him every meal in bed.  Clearly I must be meaner.  There is a lot of parent focus on not doing too much for our children or focusing on what is wrong.  In our meeting with Houlder's case manager, he said that he sensed that was not applicable to me as Houlder had already told him that I had continued to make him do chores. 

Thursday evening a small group gathered for dinner at the Mongolian Grill HuHot.  It was a nice evening and then we came back and Frazer and Houlder watched Lord of the Rings Two or something while I worked.

 We are ready to begin Day 2.  I am in search of coffee, Frazer is starving and Houlder is showering.  A relatively normal day.