Sunday, February 15, 2015

Parker is Getting Surgery in 2 Weeks

We finally made it to the pediatric orthopedic doc.  Yes…we have been putting it off, only because it didn’t seem to be “the most urgent need”.  We went, thinking that the doc was going to recommend “bracing” Parker’s left ankle.  We were definitely shocked to hear that Parker needs extensive surgery.

As Parker got off of the examining table for the doctor, his right foot hit the floor first and the doc immediately commented “Oh that right foot doesn't look too great”…but when that left one met the ground, he quickly shifted all focus to that left foot and ankle saying, “Oh he definitely needs surgery; this left one is way worse.”  Well, we knew it was worse but …gulp…surgery?!  He then went into great detail to explain that Parker needs surgery and for several reasons:  both ankles are collapsing towards the ground and the ligaments and tendons are not doing a good job holding things in place; his foot/toes are turning along with his tibia bones; and he felt that the issues with his feet, ankles, and legs could be contributing to the extreme pain he is having with his knees, hips, and spine. 

The solution, in two weeks, if all his docs clear him, he will be having surgery on both of his feet, ankles, and legs.  We had several docs recommend the doctor that we saw; and we are very glad that he is also the orthopedic surgeon; so it was a one stop shop.  He will be working on tendons, ligaments, and bones, making cuts in his bones to insert cadaver bones and pins with a goal of aligning both feet and ankles.   
Of course, Parker is not a straight up easy patient…not that this surgery is easy, but there are many things for his surgeon to consider.  The last time he had broken bones, it took 6 months to heal…much longer than usual.  He has full-on osteoporosis and of course juvenile arthritis.

His immune system is compromised due to his meds and also because he has hypogammaglobulinemia.  He has pulmonary obstruction and restriction.  And so, the surgeon is talking to his docs and he is going to use a bone stimulator to help with bone healing.  We are praying hard that his body won’t reject nor attack the foreign objects that they are about to insert to correct his feet, ankles, and legs.

He will have at least three days in the hospital; thank goodness this doctor is local.  He will then need to be out of school for at least a week.  The good news is the surgery is right before spring break…the bad news is recovery is during spring break…  But we are really trying to focus on the fact that he will not lose days at school since he is so close to going over 51% days missed at school.  But Michael, Logan, and I feel so sad for this kid.  It seems that every school break, he is struggling with something big, making it difficult to enjoy time off.  This means that Logan and Michael will be vacationing with our friends without us…so Parker and I welcome visitors to cheer him up.  Of course, call first.

Parker will have the first set of casts that cannot get wet, on both feet/legs for 4 weeks and he cannot bare weight on them either.  Then he will get a second round of casts that he will be able to put small amounts of weight on.  He should be able to return back to school, in a wheelchair, after spring break.

When I think back on last weekend at Camp Boggy Creek and how he danced and kept stopping due to pain, I just cannot imagine how this kid does it.  But he DANCED and he was HAPPY.  We love him so very much.

So here we go... on our newest journey...the journey to maintain walking and hopefully towards less pain.  Then, Parker, you can DANCE your little heart out!

Thursday, February 12, 2015

Yes, We are Blooming with HOPE...

Last year, after the JA Conference, I visited the botanical gardens, and I saw this quote that spoke deeply to me…

“A flower does not compare to the flowers around it; it simply blossoms and blooms where it is planted. “

It is very hard not to compare…As parents, we see our children alongside their peers and friends.  We watch them grow together.  As a parent of children who both have juvenile arthritis, we can see differences in our kids' development when "comparing" them with children their same age.  We have seen them grow at different rates both physically and cognitively and in some ways through their social-emotional well being.  It is really difficult to observe the struggles that our children have to endure, but I do believe that it gives them a very unique perspective on live and has caused them to be in full bloom.

This life with JA is where our family was planted…this is where our family will bloom.  And with each new blossom we celebrate our Yeses…
Yes…After 2.5 years of hospital homebound, Parker is back in school.
Yes…Logan’s JA is under control and so are his migraines
Yes…Parker is walking more and using his wheelchair less
Yes…Logan is getting ready for college
Yes…Parker’s vision is restoring
Yes…Logan won the pinewood derby at the St. Louis JA Conference
Yes…Parker has friends who love him for him
Yes…Logan is an amazing guitar player
Yes…Parker is a great photographer
Yes…Michael and I are proud parents whose family has bloomed and grown to include many families impacted by JA.
Our JA family is one big beautiful bouquet.

I am getting so excited about this year’s Juvenile Arthritis Conference...There are many dedicated volunteers and AF staff working hard to make this annual event full of networking, education, and fun.  But as we worked hard this past week planning the schedule, I was reminded that there is nothing like the relationships that are built through these connections.   These people are giving, passionate, loving, and dedicated to working together to support families. 

And I adore the theme "HOPE Grows Here"...As we teamed together, it felt a little like we were tossing the weeds, planting the seeds, and nourishing our souls; so that we could watch our great big JA Family blossom and grow even more together. 

JA has a way of showing us what really matters.  It has taken a long time to truly feel like I have some deep roots, outstretching branches, and a good strong footing.  You see, JA is like that big storm that bashes at one’s heart. The STORM reminds us of our reality…but with each new family I meet and with every story shared, we not only share tears of sadness, but tears full of laughter and joy.  

That balance gives us that strong footing to grow stronger, love deeper, laugh harder.  YES…it is possible to find the joy in life and to choose to celebrate our victories great and small. For it is HOPE that makes it feel like YES is possible …for with each small victory we share we grow a little taller and stronger.

First we have to have HOPE, then we can champion our yeses.