The GIFTS are There…You Just Need to Open Up and Receive Them!

After a very long tough month and this week spent at the hospital, I am choosing to celebrate our many gifts…because I am really exhausted by all the difficulties that continue to confront us.  It is incredibly challenging to not let times like this swallow one up with mourning.

His poor fingers...but he has Igi by his side.

Gift 1 in the hospital…Parker got admitted onto unit 42!  I literally said out loud to the admissions staff, “Thank God for small blessings.”  This is his FAVORITE area of the hospital because of the friends he has made with the staff over the last two years.

Andrew and Matthew

Gift 2…Matthew was Parker’s first visitor and he brought his friend Andrew.  Matthew runs a program called “Heroes Circle Martial Arts Class” (http://artsinmedicine.ufandshands.org/heroes-circle-martial-arts/) and his marvelous work is growing.  Andrew is starting to help teach the classes to the children.  They teach the children about their inner “Power, Peace, and Purpose” and the day Matthew walked into our lives was a truly amazing day. He has a way with children that is so gentle and at the same time powerful.  He reaches their hearts; they open up; and they totally feel safe.  I have watched him not only with Parker but with other children.  He is absolutely a gift to all families he touches.  He is absolutely changing this world one child at a time.  If you want to get just a taste of this goodness you can see a video of his program here:  http://www.wcjb.com/local-news/2012/08/kids-kicking-cancer

Gift 3…We met a sweet family who is just beginning to start Hizentra (the weekly home infusion that Parker does), so we were able to help ease their minds and tell them how much if frees them up to not have so many stays over-night in the hospital.  Plus, with a more constant level in the kids systems, they don’t get as sick as often.

Amy and Parker

Gift 4…Parker got to see one of his most favorite people in the whole-wide-world….Ms. Amy…the Child Life Specialist.  She is really something special in these children’s lives.  I know that Parker is not the only child who is deeply touched by her inner spirit but she certainly makes him feel like he is the most important kid in the whole-wide-world while they interact.  She gives him her complete attention, asks about his “real life” beyond the hospital and this disease, connects with him around his interests, and makes him laugh and smile.  She even helps supply him with “materials” to play tricks and sabotage the nurses a bit…It is so fun to witness these two together.

Gift 5…The nurses always greet Parker with such warmth and love.  We had Michelle ALL week!  Truly a blessing.  She has 3 boys herself, so she so gets “boys”.  Plus she is amazing at her job.  I always learn something new and she is so good at explaining things.  She is also patient even when Parker starts to get edgy from the ROIDS and pain.  And I really appreciated her validating how hard it is to deal with a chronic illness.  She sees a lot of very sick children and she is giving so much care in a way that heals medically and emotionally.

Gift 6…I was in a major slump earlier this week.  This systemic onset juvenile arthritis is tough to watch and then when additional challenges test your inner spirit there is little left in reserves…but I have a few really incredible friends who always accept me for who I am and never waiver in their support and they encouraged me in a time when I was starting to let my mind try to take over.  I needed them and they were there for me and I am thankful with my complete heart that they care.  And they let me feel my pain and waited for me to get through it…thank you.

Gift 7…Caleb’s Pitch knocked on our door!  They entered with such enthusiasm who could say, “no”….several gymnasts and Nick came in with syringe art….what messy fun and great laughs.  This kid had not laughed once this day and as the day was ending they arrived and brought laughter into our room.  Better than any of the medicine he had received all day!  Visit them on the web at www.Facebook.com/CalebsPitch



Do you see the JOY!  And the lovely green hair!  Syringe hair dye....who knew it could be so fun?

Gift 8, 9, and 10:  Parker’s amazing pals totally made him feel loved!!!  Sadie sent Parker a turtle he named Charlee (after his night nurse’s daughter) and he slept with him and cried with him, Aly and Robbie sent him “Rusciano the monkey" who went with him on all his tests!  And Kylie sent him Chomp…the gator who is going to chomp out JA.  (For some reason I can't get Chomp's picture to upload...I am sure it is because of the hospital). All three of these critters and the balloons that they carried brought smiles to Parker, knowing that his friends were thinking of him.

Gift 11:  Jen Funk with the Rays sent me an email and its official….Raymond and the Tampa Bay Ray’s Street Team will be at the Arthritis Foundation’s Spring Walk:  Home Run for a Cure!  Jen ROCKS!!!

Gift 12:  Logan and Dad face-timed with Parker and even shared time with Lily on the screen.  I don’t think Lily licker dog could figure out where Parker’s voice was coming from.

Gift 13:  Soooooo many of you sent us emails, text messages, and Facebook messages to encourage us on this journey.  It is never easy being in the hospital…it was nice to know others are cheering on our sweet boy and sending us pics (Thank you Valenti gals) and praying for Parker and our family.

Gift 14:  The pharmacy staff is so incredible here….Parker is definitely high maintenance because he is allergic to corn and it is used in many meds as a binding agent.  They go the extra mile for this kiddo and today they problem solved with the doc around finding new meds for him and printed out the formularies for me to re-assure nervous momma!  Yes, Parker is starting 2 new meds.  A muscle relaxer and also a med in place of methotrexate called  prograf (tacrolimus).  This med is usually given to transplant patients but they are seeing some benefits for individuals with JA.  It will take close monitoring but we are hopeful it will do its job and help Parker.

Gift 15:  We had two really amazingly sweet night nurses, Christee and Jen.  It was fun to hear about their 2 year olds.  Jen even shared pics with Parker…another major gift because some were down right adorable and others were hilarious.  These distractions seem so simple but in a world where kids are in intense pain they transport them out of that pain momentarily.  Last night was incredibly hard for Parker…his blood pressure dropped to 81/42 and the pain was quite awful and Christee was so sweet and gentle with him.  These nurses are angels on earth.  

These were his nose clips but we are re-purposing.


Gift 16:  Parker had to repeat his pulmonary tests again today.  He did better this round after given a double dose of albuterol.  So we now know that he is having asthma.  And there is no scaring on his lungs and this is VERY good news.  We want everyone to know this because we know that as this test was happening there was a massive amount of prayer going on and so many people sending us encouragement and positive messages.  We really needed this good news and we got it!

Gift 17:  I know I have said it before…But I am going to continue to say it…Parker has some amazing doctors.  The fact that they team is incredible.  They must think outside the box and come to solutions where there are so many unknowns.  Their primary focus, of course, is his “health”…but they know that so much beyond just the physical body impacts his health.  They connect with him; they listen to him; they encourage him (even when he can be a bit edgy); and they seem to love him.  Of course, I know they love all the children they treat…but the fact that they pause to interact with OUR child is priceless to a parent.  So they are one of our greatest gifts.

It looks like Parker may go home tomorrow.  They started the two new meds tonight and we hope that they bring Parker more relief.  Our next task is seriously getting our swimming pool up to par for him.  We must get it heated and get him in it daily to do some exercise.  I decided I can use the exercise too with my RA; so we are going to do it together.

We thank all of you for your love and support!  The gifts you bring to our family are beyond anything that money can buy and for that we are infinitely wealthy.