Monday, May 25, 2015

Living in the Moment…

We really try to live in the moment…yes, sounds cliché but it is true.  We’ve learned that living in the here and now is much easier than looking too far into the future of what’s to come.    And we put much faith in believing that we are doing the best we can with each moment…and that is all we can do.

We are rounding up the end of the school year.  Logan has been done for several weeks.  He graduates from high school with an AA because he did early admission into college his senior year.   He received one scholarship and is waiting on several others.  This fall, he will start his junior year at the University of Florida, as he moves towards his dream of becoming a pediatric rheumatologist.    We are incredibly proud of him and we are packing in as much fun as possible, with our grown-up kiddo,this summer.

Parker has missed much school this year because of his chronic illness, the pain it causes, and because of the major reconstructive surgery he endured.  He’s been going back to school part days as much as possible.  He is only two weeks away from the last day of school; and he is still unsure if he will be able to proceed to the 10th grade.  This is causing him much stress even though we are stressing to him that he can only do his very best and we will support him moving forward no matter what happens.  As much as we try to explain to him that his health had to be taken care of first, it is very hard for a 15 year old to watch his peers move forward over and over…often leaving him behind (in many ways).  In the big scheme of life, we all know that his health is his “life”…but oh how it hurts our hearts  to know that he knows that his friends go “out on the town”, have dates, go to all kinds of fun events, play sports, drive cars, and do all kinds of fun “teen things”.

So we try to focus on the JOYS…Yes, Parker went through a very intense surgery on his legs, feet and ankles and it was way tough beyond words…but now he is walking and he is aligned and his pain in his feet and ankles have gone from a daily 10 plus, down to a 6.  And he doesn’t need his wheelchair much at all.  He even walked across the finish line at the walk, only 2 months after surgery.  And…Parker and Logan made their walk fundraising goal and raise over $10,000 with nearly $13,000 raised this year.

Some of you know, Parker has struggled with some heart issues.  His blood pressure is running low and his heart rate is running really high (even when at rest).  We have been working with all many of his specialists, along with is primary doc.  In fact, his primary doc has felt that he is so complicated that she would like him to see someone with more expertise coordinating multiple health issues.  So she has sent all his records to a pediatric critical chronic care specialist at our local hospital and we are waiting to get him in.  We have done our very best to try and get him the help he needs without the trauma of a hospital stay.  And the last month has been way intense with lots of tests and specialty visits. 

We have been working closely with his pediatric cardiologist and he really feels that this last surgery triggered his autonomic system to go haywire.  And although he sees this more often in teen females, he has seen this happen in a few others after surgery on limbs.  He feels that Parker has autonomic dysfunction or POTS.  His heart rate actually went over 200 right in the doctor’s office during his EKG…  The cardiologist said the heart monitor he wore confirmed his concerns and since then, he has worsened.  He is also having some GI issues, trouble swallowing, difficulty urinating, and sweats/chills.  So, we are trying to control the symptoms, while we try to figure out what hospital to take him to.  There are only a few in the US that deal with this. He said the wait time is usually 2-4 months to even get in and he will be there a minimum of 5 days.  Our choices are Mayo Clinic-Rochester, Cleveland Clinic, Children’s Hospital of Philadelphia, and NYU.  Vandy has one too but they really only treat adults.  So in the next 2 weeks, we are trying a few things and researching to figure out, given all his issues, which hospital would be the best.

In addition, we have been working on approval for 2 surgical procedures that he hopes to have this summer so that it doesn’t interfere with school.    One procedure is neck nerve ablations and the other is insertion of a nerve stimulator in his back for a trial.  The cardiologist feels that he can proceed with these procedures, but I have to admit, I do have my reservations.  But Parker has a ton of HOPE with what these procedures could do to alleviate his pain.  He dreams of getting off of pain meds and learning to drive.

On a joyful note, Parker's papallidemia is healed and so no more pressure on his optic nerves and they are almost completely restored.  This also means that the psuedo tumor is likely healed too!  Thank God!

Also, we are celebrating that Parker was nominated by his school for the Prudential Presidential Community Service Award and he won this year.  It was a complete surprise and he walked to the stage, in front of his cheering peers, to receive this amazing recognition that only the top 10% in the nation receive for their service.    

He is also thrilled that he got into Camp Boggy Creek for a week at summer camp.  This camp is really special to him and he really feels it is his heaven on earth.  This year, Michael’s work has a promotional fundraiser to send kids to camp too…I just love that they see the benefit of this amazing camp and what it does for kids with serious illness so that they can enjoy some serious fun!  We hope all of you have some serious fun planned this summer.