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.

 

 

We Need Our Friends and Family

Dear Friends and Family~

We have had an incredibly hard several weeks…Parker seems to be struggling again.  The good news is that he does not have interstitial lung disease.  This is pretty huge.  The team of docs and us were pretty concerned about this because it is irreversible.  We embrace and celebrate this amazing news.

We also found out last week that Parker now has osteoporosis.  This is not only due to his disease activity but also because of the treatment.  As parents we make very difficult choices and sometimes the side effects are the lesser of the evils that we face.  His doc has already begun treating the osteoporosis with a once-a-year infusion of Reclast.  This would explain why Parker has had some difficulty with the wrist and thumb he broke more than a year again. 

Parker is still having lung obstruction and restriction.  Last week he was fitted for a c-pap mask to prepare for his overnight sleep study.  There is some concern that he may be having difficulty breathing at night.  This would certainly explain why he has been sleeping more than he is awake.  The overnight study is scheduled for April but we are also on the wait list for cancellations.

Parker’s vision seems to be shifting and becoming blurred.  We have an appointment with his ophthalmologist to check this too.

So as you can see, we have some new hurtles to overcome.  This week we have just been trying to keep him out of the hospital.  His symptoms have spiked…rashes, fevers, swelling, extreme fatigue, muscle weakness, and way intense pain.  He has missed the entire week of his hospital homebound classes, had to be excused from FCAT testing, and hasn’t even played Xbox or texted his friends.  His doc suggested we admit him on Friday but he really didn’t want to go.  Who could blame him…so we decided to see how this weekend goes since he was getting his treatment of the Rilonacept shot and his infusion of Hizentra.  Well, the good news is he got on the Xbox with dad for a bit last night.  And even though it totally wiped him out again, he had a good time.  He needed to have some FUN!

He woke up briefly this morn to take meds and to tell me to pack just in case.  Yes, he feels like we are going to have to go up to the hospital.

I really wanted to update everyone before we might have to make this trip up there but also to share why we fight so hard against this disease and are constantly trying to raise funds and awareness.  There is a saying that many of us who deal with chronic illness use….”don’t let the disease define you”…  We try desperately not to do this, but this disease has RE-defined who our son is in some ways…but it has also enhanced the goodness and kindness in him.  That is one of the major gifts that come from great struggles.  The issue is we cannot “escape” this disease….there are constant “reminders” of its existence in our life.  Every single week we have some sort of medical appointment or therapy.  Daily, there are meds, injections, infusions, etc.  And let’s face it, things are not the same in our family…some people have drifted out of our lives (we just can’t keep up with them…) and others have drifted into our lives.

We choose to celebrate the good that has come from this disease.  We have people in our lives that are “with us” because they truly LOVE us!  This is the most amazing gift and powers us forward.  Our children share that love through their actions and for that we are incredibly proud.

So we humbly but shamelessly ask for your continued support.  We need people like you in our lives.  We need people to continue raising awareness so our children have a voice and to raise funds to support research for a cure.  But I also want to share that funds are not only used for research…they are also used for other amazing things that without support wouldn’t be possible.  Here is where your dollars go:

Dancing at Camp

Camp Boggy Creek- “A Serious Fun Camp” that hosts JA Family weekends and summer camp for our children.  This camp gives us an opportunity to meet others whose lives are touched by JA but more importantly, it gives are children the opportunity for safe, medically supported fun.  Kids just being kids.  Click here to read more about Camp Boggy Creek
 

Connect events – the Arthritis Foundation (AF) hosts opportunities for individuals and families to learn and connect.  Click here to read more about Florida AF Happenings

Our Children Together

JA Family Fun Days – A group of JA families have initiated hosting events around the state each month to give families the opportunity to network and meet each other.  The AF helps with announcements and some of the food costs.

Florida’s JA Families Arthritis Foundation Facebook Page – a place to announce activities and connect with others.  Click here to connect to the Fl JA Families AF Facebook Page

Connecting at Conference

The National Juvenile Arthritis Conference – every year our state helps fund families’ travel and registration costs to attend this conference where the entire family learns more about JA, research, advocacy, and networking.  Many medical professionals volunteer their time to come and present and to talk with families about JA.  Children have their own classes and fun while adults are in their sessions.  Click here to read more about the JA Conference


Dads



JA Advocacy Summits – The AF sends families to both Tallahassee and Washington, D.C. to advocate and raise awareness.  Click here for more info on the JA Summit

The kids with JA directly impact our hearts, but there are also many adults with autoimmune issues/rheumatoid arthritis and I am one of them.

These are just some of the reasons why Parker’s Purple Playas participate in the annual AF Spring Walk.  So please consider supporting us.  You can join our team for free, help raise funds, and/or simply make a donation.  Here is the direct link to Parker’s page:  http://awtampa.kintera.org/faf/donorReg/donorPledge.asp?ievent=1042465&lis=1&kntae1042465=954C041C14F748CE90489BEEC614B979&supId=345360575

We continually thank you for your support and send each of you much love.

Mom and Dad Powering on to Find a CURE