Monday, July 29, 2013

Summer Snapshots

For the first time ever, Parker has gone 3 months between rheumy visits.  This is pretty amazing.  It is so wonderful that we are able to do his shots and infusions at home now.  He and his brother, Logan, go back to the rheumatologist in a couple of weeks.  And after going to the Juvenile Arthritis Conference last week, we have questions regarding both the boys.

So it is a very good thing that we have the blessing of a 3 month span because we have been very busy with both boys at various medical specialists and therapies.  Sometimes I find it so very interesting how one thing gives, so that we can deal with something else. 

OT
For instance, Parker has graduated from OT.  We are so incredibly thankful to his occupational therapist, Jackie!  We will certainly miss her…and just as OT has ended, Parker AND Logan have started up with PT (well, second round for Parker).  We found a wonderful PT just about 2 miles from our house.  And I have a feeling that I am going to need to start up PT soon too; and they see both adults and children. With our very busy lives and school starting back up soon, this too is a huge blessing. 

Parker is now doing auqua therapy and biofeedback.  We are happy with the progress thus far.  Our main goal for him and for himself is to help him building his “coping skills” and also strength, since we know this disease is not going away.  He is slowly gaining strength and using his chair less and less…but it seems to come at a cost and that truly is completely discouraging at times.  But he knows that his choices have consequences and he is willing to endure in order to experience fun.

Parker got to experience Camp Boggy Creek!  And even though he was in bed for 4 days after, he said that it was totally worth it.  The joy that this camp experience brings him is so profound.  With a childhood full of medical stuff, this is one place he can concentrate on “just being a kid” and we know he will be ok.  Camp Boggy Creek is equipped with medical equipment, nurses and doctors…along with a wood workshop, lake, fishing/boating, horseback riding, a theater, pool, basketball court, archery, swimming, crafts, cooking, a talent show, chants, friendships,  a dance, and much much more!  They accommodate all his needs, including food allergies.  If he needs an emergency infusion, they are equipped for that too.  Camp Boggy Creek is one of Paul Newman’s Hole in the Wall “Serious Fun” camps.  Check out their website:  http://www.boggycreek.org/   We are so thankful that the Arthritis Foundation’s Florida Chapter sends children to camp every summer and also funds Family Retreat weekends.







Kids Get Arthritis Too
A week after Parker returned from camp, our family headed to California for the JA Conference.  Let me tell ya, traveling with medical issues is quite adventurous.  Obviously we took the wheelchair but we also needed a suitcase just for all our meds, the nebulizer, and the bi-pap machine.  Lots of vials with liquid and lots of shots…of course everything needed to be double checked at airport security.  Even the head of security came over to give us tips for travel.  He was super sweet and he looked relieved for us when I told him this was our “one trip” each year.  He said, “Oh good, you’re not frequent flyers…”  In that moment, I definitely concurred.  Remembering to administer all infusions/shots was also a challenge…but we did it.  However, he might be anemic again…he was bruising something horrible on this trip.  We also had to make sure that his vials stayed cold while we traveled and that we got a frig in our room (which we had to have serviced because it wasn’t running cold).  Then there was the “rental car”…it had to be not only big enough for us and our luggage but also the wheel chair, but it cannot be too new that we are allergic to new carpet.  This is why we don’t travel much….

The opening night, Deborah Snyder, one of the Producers of Man of Steel, spoke to the kids about how they are all heroes.  She struck a huge cord with Parker because she too has adult on-set systemic arthritis (also known as Still's Disease).  This is what Parker has.  She took time to meet Parker and talk to him.  That warmed my heart.


 
Every year at conference, we meet new families and our children make new bonds.  This year, Parker became more “independent” which was really something to witness as he and his buddies hung out together.  Logan and I signed up to be AF Ambassadors and he is really excited about this.  I told him if we are going to do this, he would have to be lead.  He can’t wait to get started.  We also tacked on some vacation time after the conference and got to visit with Michael’s cousin.  What a fun day in Hollywood.


Parker, with his bi-pap machine on,
 woke long enough to put his
3 infusion needles into his belly
and start his infusion pump. 
Since returning from our trip, we have adjusted Parker’s bi-pap machine yet again.  We are hoping that he will feel even more rested and build more endurance since in several weeks he is starting high school and is planning on joining his brother at his school.  The boys had both of their ophthalmology appointments and both have clear eyes…we found out today that if the JA attacked Logan’s eyes, he would feel it and his eyes would get red…but he said with Parker it is quite different and it will silently attack with no clues.  That is why Parker’s eyes are checked more often.  We also saw the pediatric endocrinologist.    This visit just reminded us, yet again, how serious Parker’s disease is but we were not shocked by what the doc had to say….drum roll…..he is too short.  Well, when a kid doesn’t grow in 4-5 years, I think we knew this was coming.  But he said that according to his bone age test he would put him at about 5’6” to 6’…with him currently being at 4’9” we are going to put in on the bed each night and Michael will grab his ankles and I will grab his wrists and we are just going to stretch him out…do you think that will work?  But seriously, this does mean more tests and he said it was pretty likely that he would put him on growth hormones.  Some of this “shortness” could be due to his disease but we are sure that the long term steroid use has also contributed considerably.  Parker is taking it in stride…he said that he can be “Chip or Dale” at Disney and maybe even “Mickey” and then he informed me that there is a “payment” that people who are under 5’2” get due to their shortness (I think he is thinking of disability…who knows…and how would he know this).

Every day I marvel at Parker’s strength.  He has faced many challenges and he continues to problem solve, push forward, and plow through it all.  I love that even though his body is “weak”; he is not letting it defeat him.  At the conference this year, the children were asked to dress up like a superhero.  Parker decided he was going to be Professor X from the X-Men.  He had his bald cap, black pants, black shirt, olive green suit jacket, and of course, his wheel chair.  Professor X is the leader of the X-Men and he teaches these “mutants” (as they are called) that although they are different; they have much to offer and each has unique talents that impact this world.  Professor X is also an advocate for equal rights where all could live together in harmony.  Parker even made a poster with favorite quotes from “Professor X” to put on the back of his wheelchair.  But on opening night, he went to put on his Professor X outfit and the pants didn’t fit.  He quickly changed gears (even though we knew he was quite upset about this) and he put on his “Robin” shirt and cape that he had for his day at Magic Mountain.  And he still put the quotes on the back of his wheelchair.  So in “Professor X” style, he went out with his head held high and had fun.
 
 

4 comments:

  1. Wow! Busy Summer! I believe arthritis does stunt growth. Our rheumy told us too that more affected joints even grow faster than healthy joints. Merel has different leg lengths due to inflammation.If Mere wears shoes she makes it just to 5'.She is 16 now and done growing. She's not only short, she's also underweight. an extra 10 lbs will get her just in the acceptable range! She knows how to use it to her advantage though! I am convinced growth will be affected, my son was just recently diagnosed at age 14 and is a lot taller than his sister,,,even taller than be! We were asked if we would consider growth hormones with merel. We chose against it. I know it may be a bit different for boys, but we were under the impression there were enough chemicals in her tiny little body as it was!Hope your summer remains busy yet uneventful!

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  2. WOW!!! It sounds like y'all have come a long way! Three months without a rheumy visit? I think I would be terrified!!! A wonderful sort of terrified, though!

    I am glad that Parker saw endo. I have mentioned to several doctors about what Kim has said, specifically about how lack of growth means that the cells do not regenerate as quickly, causing pain amplification. All but one doctor agreed. Our endo asked us yesterday to consider growth hormones. Emily quickly said yes. She knows that the first month may be rough, but if our kiddos are anything like Kim's, they may feel much better after that.

    I am thrilled that the conference was so good for everyone! And how awesome that Ms. Snyder took the time to chat with Parker. Even better about the independence. We need some of that here. I'm so glad it has been a great summer!

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  3. Rochelle,
    Again...thank you so much for sharing your thoughts and your journey. Much of this made me smile...some parts laugh! I know I have said it before, but I love your family and your perspective. How exciting that you and Logan are going to be AF Ambassadors...what a neat thing for him to be able to participate in! And I love the quotes that Parker picked out for the back of his chair. As for the part about his height, I think the stretching rack is worth a try...can't be worse than some of the steroids, right? Hehehe...don't tell Parker I said that! ;-) I hope the next few months are relatively uneventful. Please tell Parker and Logan that Kayli and Trey say hello! We'll definitely be keeping you and your family in our thoughts and prayers.

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  4. Arthritis affects the musculoskeletal system, specifically the joints. Arthritis is the main cause of disability among people over fifty-five years of age in industrialized countries.The word Arthritis comes from the Greek arthron meaning "joint" and the Latin itis meaning "inflammation". The plural of Arthritis is arthritides.There are over 100 types of Arthritis .

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