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Sunday, March 3, 2013

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

4 comments:

  1. You are constantly on my mind and in my prayers. Being a "kid" is such a short period in a person's life, and I wish that Parker could have more happy pain free days to enjoy them. I want to believe that a cure is just out of reach, but that Parker will be part of the miracle story of conquering this desease! I love you all so much!!!
    Mom/Grandma

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  2. I am sorry to hear things are not going so well. Parker is in our prayers daily and I want to believe that our prayers are reaching you. Parker is so amazing to keep his chin up through it all. He is a fighter and for this his presence WILL gain awareness and reach the people it needs to for a chance at a cure. It doesn't seem fair and I do wish it wasn't so hard to keep up with each other. Bottom line, you, Parker, Logan, and Michael are family and you all are always in my heart. I will keep praying....much LOVE. I admire your strength in so many ways!

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  3. So sorry that Parker is going through even more trials with this unrelenting disease. We join you in praying and pushing for more research and a cure. Your family's strength through this battle is amazing and admirable. As always, we are here for you and ready to help at any time. We send our love and hope!!
    Sandy & John

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  4. Always praying for Parker, happy about the fact that it's not interstitial lung, but sad about Osteoporosis. It is so sad that we help our children on way and it hurts them another. Cassandra ended up with her hips degenerating and a couple herniated discs in her back from meds. I wish I could just take it all away from these sweet kiddos. Hugs and prayers always coming to you all.

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