Sunday, January 29, 2012

Our Happy Day in Honor of Jenny!

We knew the price would be great, but we are so glad we made the investment…As both our boys are resting today, we reflect on the genuine love that overflowed yesterday at the Parrot Heads of Central Florida’s “Fruitcakes in the Alley” event, ( where all proceeds went to the Arthritis Foundation in honor of all children with juvenile arthritis.  Our family was a part of something wonderful…yesterday was such an amazing experience.  The Parrot Heads know how to party but they only “party with a purpose” and talk about a “purpose”…George Schott, dubbed “the first dude” because his lovely wife Lisa Schott is the President of the Parrot Heads, is one of the most amazing first dudes one could ever meet.  This group has rallied around George for a very specific purpose.  His daughter, Jenny, passed away 5 years ago with complications from systemic JA and this event is to honor her and to continue to hope for a cure for JA.  (Jenny’s Story:  A cure can only come with funds and boy oh boy, does this group know how to come together and raise funds and awareness!

We were all swept away in the moment, pure adrenalin running through our children’s veins, giving them energy to “party with a purpose” right along-side these amazing Parrot Heads.  Parker was the honoree this year and he had the honor of two dear friends joining him in this honor:  Sadie and Delaney.  The delight in these children’s eyes filled us parents with such joy, thankfulness, and a closeness that is beyond words.  Some days it is so hard to smile and smiles were contagious yesterday!  You know, the kind of smiles that fill your heart so full that tears try spilling out to make room for the happiness. 

If you have been following us in our journey, you know that Parker’s brother, Logan, has also had some medical issues.  Just prior to this event we found out that he does not have a tumor, thank God.  He has something called occipital neuralgia.  For a month now, he has had an incredibly severe headache.  I am sure you can imagine how loud and painful a bowling alley party can get for a kid with a severe headache.  But Logan insisted on going and supporting his brother and all children with JA.  So, he did and with earphones and adrenalin he joined in the fun.

I am sure that many are wondering how Parker could possibly make it through this day…well, he did…with the help of lots of medicine and lots of cheering on…and LOADS of love that filled the building.  And dear Delaney and Sadie were right there by his side.  Friendship and understanding connects these children.  They have strength beyond strength.  And we are so proud and inspired by their strength.  In multiple moments they helped each other out and the sweetest moments were when Logan and Drake (Delaney’s brother) supported these kids in just the right way…they “know” what to do and when to do it!

But back to the Fruitcakes in the Alley…Parker opened the event with a speech.  You can hear it at this link  :Parker's Honoree Speech

The day was full of fun:  bowling, dancing, eating, raffles, bidding, jamming, and awards.  The greatest award was seeing our children putting medals on all the finalists.  But nothing prepared us for what we were about to experience…the final award went to the winners of the bowling tournament and as our sweet kids Parker, Sadie, and Delaney went to put the medals around their necks, they took their medals from their tiny hands and put the medals around the kids’ necks.  The true winners…I will let the pictures speak for what we experienced…


Thank you Parrot Heads.  We are that much closer to our children’s CURE…just what I am sure Jenny would HOPE for!  And it’s never too late to help out.  Parker’s Purple Playas are getting ready for
our spring walk with the Arthritis Foundation and if you would like to “party with a purpose” with us, join our team….or make a secure donation, his walk link is:  Parker's Purple Playas AF Walk  

Sunday, January 15, 2012

A View in Our Window as We Walk with HOPE…

When raising a child with a chronic illness like Parker’s, we find ourselves reflecting on life’s gifts.  We are incredibly grateful for the medical staff that surrounds our son.  Their wisdom and expertise have definitely been challenged this year and they continue to strive to problem solve and find the best possible solutions.   We are seeing some progress…slowly…  Some days bring us much happiness as we see a glimmer of HOPE when Parker’s smile returns and his voice has energy and movement is smoother.  But there are those days that cause us to pause for we have realized that we have to make some adjustments and accommodations to how we live.  This is the window into our life that others outside of the world of “juvenile” arthritis do not see. 
As we walk with HOPE, we do not want to dwell on the hardships but we so very much want the world to see into our window.  We want the world to support these children.  Arthritis comes in many forms and for some time now, there has been lots of discussion on how unacceptable arthritis is…but the world doesn’t realize that our children’s arthritis is VERY different than grandma’s and grandpa’s arthritis (and yes, that too is unacceptable).  But, people somewhat expect elderly folks to have some aches and pains… People do not expect children to be in pain, and they especially don’t expect children who are so darn cute and happy to be living in pain.  In fact, some children get so good at dealing with their pain that perceptions are that they are “faking it”…I hear this from many families.  But our children do live in pain, every day…and they learn to “accept” it because they need to endure and push on and move forward.

Friends in the Infusion Room

And that endurance is to be greatly admired and celebrated.  Last Friday, we spent the day in the infusion room.  On this particular day, there were multiple families present who had children with some form of juvenile arthritis (systemic onset, dermatomyositis, polyarticular JA, and overlap syndrome).  There were also two children with cancer.  I completely marveled at the strength, compassion, and wisdom of all these children.  They each are on their own journey but they are also “together” helping each other.  They talked about their treatment, their school issues, their boo boos and some also talked about their favorite games, funny events, and accomplishments.  But the best was witnessing their smiles and exchanges of hugs.  I was deeply touched by one girl, who was in a great deal of pain, who comforted and cuddled a smaller girl and allowed her to hop into her recliner with her.  And there were two boys close to Parker’s age who chatted away with Parker.
Mom and Parker
And I was grateful to have one of my dear friends by my side on Friday…I knew Parker’s blood work was not good but I didn’t realized how bad it was…just her presence made it easier to hear about how Parker will need to continue receiving IVIG every four weeks because his immunoglobulin levels are too low and none of his vaccinations took…all his titers were off.  For those of you who have been keeping up with our blog, you already know all about this…but for those of you who don’t, you can read the post done on 12-30-11 to get up to speed.  The good news is that the IVIG will hopefully build up his immune system and through the plasma of other’s blood his titers are expected to improve because the donors have all received vaccinations…so it will be like he is receiving them through other’s donations…what a gift!  We return in two more weeks for Parker’s second IVIG infusion.  He is also continuing with his increased dose of Actmera infusion and the once a week shot of Enbrel.
Since our journey has started, Parker has been asked to “rate” his pain.  He is not a fan of the number system of rating pain.  1 is great, no pain, happy…. and 10 is the worst pain possible…well, he has pretty much been at a 10 with an occasional 8 or 9 since 2008.  However, this week, HOPE shined its beautiful light on our strong kiddo.  On Wednesday, he was a 6-8…but on Thursday afternoon, he announced that he was a 4 from the shoulders up and a 2 from there down.  I did the party dance around the living room.  Needless-to-say, we celebrated this wonderful news with the doctors and nurses and friends on Friday…even though Friday’s pain was creeping back up to a 6-8.  This is HUGE!  We are NOT changing his treatment plan and we are going to continue down our path.
So remember that window into our “life” I was talking about, well yesterday and today have been hard again.  Parker is even having a hard time just playing video games (which can usually take his mind to a less painful zone).  We find that we try to explain “why” he is worse:  it’s colder; he had his infusion…he will bounce back…Well, who knows…but it is just harder.  He is sleeping more today and last night he had trouble breathing and had to be nebulized.   These are the days no one “sees”…but we just slow down a bit, take it easier, and try to focus on other things to help him take his mind elsewhere.  We so want these days to go far far away.

Dad and Logan

And then there is Logan’s current journey.  If you read Michael’s funny blog about Logan’s recent hospital stay, you know that his childhood migraines have taken a twist.  Some of it seems to be related to his fluctuation in his hormones/puberty.  But in addition to his migraines, he is now having cluster headaches and the stress of our lives certainly cannot be helping matters.  We are still waiting to get in to see the new neurologist who is with the university’s headache research clinic.  His appointment is the 25th and until then, the anti-inflammatory is helping some; he is still taking his migraine meds; and he is on home oxygen therapy.  However we just found out this week that the oxygen therapy can only be a temporary fix since too much of it can burn the lining of his lung.  Jeeze Louise…why didn’t they tell us that we he was discharged from the hospital.  Fortunately, we have an amazing family practitioner who filled us in and she is also running more blood work.  Again, we love the medical staff supporting our children.
But as hard as our journey has been, we are truly a happy family who is just having a hard time right now.  I am incredibly fortunate to have Michael in my life.  His sense of humor lightens our days.  We share responsibilities and our boys deeply love each other.  I am in awe of the parents who journey this without a spouse to support them and help them make decisions.
We are also so incredibly thankful to the support we have received from our family and friends.  We know it’s hard to watch what we are going through…and it has been hard for us to ask for help.  But we need help…yes, I am saying it…

Giggling in his dreams as we approach the hospital.

Most importantly, we need more research on Juvenile Arthritis and auto-immune diseases.  Our children need a CURE.  We are looking for friends and family to walk with us on May 5th in hopes of a cure.  We would love for you to join us.  We will be the sea of “Purple Playas Pounding at JA” in support of Parker and all others with JA, RA, OA, and all the other A’s….  Registration is FREE.  Click here to join Parker's Team Page

We continue to HOPE for a cure; we pray for a cure; we educate others to advocate for a cure; we walk for a cure; and we will continue to always always fundraise for a cure!  And just as families who have children with cancer want to hear that bell ring when a child with cancer is cured…we (JA Families) want to hear our bell ring too, so that our children can leave the infusion room with a cure!  ALL our children need a CURE!

Friday, January 6, 2012

Logan’s Week in the Hospital, from a Dad’s Point of View

Logan’s Week in the Hospital, from a Dad’s Point of ViewSo before I go any further, I want to thank all of the parents who stay with their children while they are in the hospital.  This week I spent time in the hospital with Logan, not Parker, but Logan.  I still do not think I understand all the medical terms to hang with Parker in the hospital and since Rochelle handles those visits I figured the least I could do is take care of Logan.  So keep this in mind as you read this.
This is my recap of the week.  I am sorry for the length of this, but I promise the last paragraph is well worth it.
Monday Jan. 2nd
                We as a family have this great vision of 2012 being a much better year than 2011.  I handle carpool detail on Monday’s, so Logan and I leave to pick up all the kids and get them to school.  Parker is not feeling so hot, so he stays home.  I get home, start working, all is good.  Logan gets out of school early on Monday, no problem, go and pick him up.  He tells me on the way home he is not feeling too hot.  We get home; he lays down only to wake up a couple hours later with a headache.  The headache turns into a migraine.  So 9pm rolls around and he is really not doing good, really bad.  Off to the ER we go.  Standard procedure, IV started, go over all the meds he takes, you all know.  11:30pm, Dr. comes in and says we are going to give Magnesium; this should take the pain away.  1st bag in IV, nothing, so let’s try another one.  Did not work.  Toradal, that should do it.  Not.  Time for a CT scan.  Results good.  So they give a script for some pain killers and send us home.  It is now 4 am, and did I tell you this just happens to be the coldest day in about a year.  Wind is gusting and it is cold, the feel like temp is 27.  Wearing shorts is not such a great idea, and a jacket would be nice.  Finally home, freezing, but home.  But the fun does not end; the dog has to go out.  I swear that dog loves the cold, just standing there with the wind blowing in her hair.  Finally 4:30 am and off to sleep.
Tuesday Jan. 3rd
                Up at 7am and off to work.  Rochelle and I somehow work it out so we can both get stuff done and since Logan is home, still has headache, we are off.  We get home and Logan is not doing well at all.  Off to sleep he goes.  He wakes at 10pm in total pain.  This time we decide to take him to a different ER.  So we are off to the ER.  Arrive at ER at 11:15 and all hooked up again by midnight and Dr. comes in around 12:30am.  I am ready this time, thanks to Rochelle.  I have the papers from the ER the night before, a list of all his meds, past and present. I am feeling good.  So the Dr. tries a new cocktail of IV stuff.  We know it is not going to work, but we try.  It does not work.  All good, they have a bed, yep he is admitted.  So it is about 5:30 am and we finally get some sleep.  He is in a bed and I get the chair.  Most of you who read this know about the chair.  For those of you who don’t let me explain.  It looks like a chair, but it turns into a bed, kind of.  So I get this thing set up and am trying to sleep.  Oh yeah, remember earlier I mentioned that yesterday was the coldest day, not any more.  Today is the coldest day.  We are on the 5th floor, wind is blowing, I am next to the window and the heat is not working.  Can this night get any better?  I have my leather jacket on, scarf, and 5 blankets, and I am freezing.  Logan looks like a muumy, but warm.
Wednesday Jan. 4th
                Rochelle comes to relieve me so I can get some sleep, and get ahold of work to let them know I will be taking some sick days.  Get home, sleep till 2:30 pm.  Only woke up because that is when Parker woke up.  The cold weather is very hard for him.  He and I hang out, have a bite to eat.  I call Rochelle and make arrangements to take over.  I get to hospital around 7:20 only to find out valet is closed.  Really!  I convince the valley guy to let me leave the car out front so Rochelle does not have to try to find the car.  I come prepared this time, because Rochelle told me to bring a heating blanket since the heat still wasn’t working.  Oh yeah.  I also come with some Five Guys burgers for me and Logan.  In the meantime, Logan is getting no better.  IV’s pumpin, pill poppin, nothing is working.  So we sit, actually lay of the chair futon thing, too lazy to put into a chair.   Neither one of us can sleep.  The nurses come in all the time, checking vitals, replacing saline bag, giving drugs, always something.  Then she asks if I want anything.  So she brings me a half can of ginger ale.  Logan, well, he’s still not doing well.  So what to do?  Watch TV.  We watch a marathon of Full Throttle Saloon.  Probably would not be approved by Mom, but hey, we have to pass the time.
Thursday Jan 5th
                Doctors start rolling in around 8am, actually just one.  Same old questions: how do you feel? Where is the pain?  Etc, etc, etc.  next the nurse, vitals, drugs etc.  then we get the group call, you know all the doctors in training.  They go over everything, again, new plan, let’s try this, etc.   off they go.  Not 5 minutes later the life specialist knocks on the door and tells us the clowns from the circus will be in the play room at 11am.  To which I said “you mean the cruelty to animal tour 2012 is coming by”.  She laughed and said the media is going to be there.  We said, that is ok.  Logan still not doing well.  Not 5 minutes later a senior volunteer knocks on the door and asked if we wanted a visit from a dog.  What is going on here, Clowns, dogs, media, is this a hospital or are they filming a reality show.  Still the drugs are not working and the doctors are saying the migraine is now a cluster or tension.  So I ask what is the deal?  I tend to get to the point.  So they tell us we need to think outside the box and the “New Age Team” needs to get involved.  New Age, what is new age?  Ok, at this point we will listen to anything.  Logan and I set up for the night, it is Clohe and Kim take New York a thon.  Logan and I have come to the following conclusions.  Kim’s husband, Chris is a tool, but Kim is mean.  We like Scott, he is not a bad guy.  Logan thinks he could be considered a family guy.  We follow that up with more nurse visits.   Rochelle calls with some info about B12, so I track the Dr. down and we discuss.  He thinks that may not be it, but will look into.  We chat about his schooling and he is off. 
Friday Jan 6th.
                Really starting to get frustrated.  Logan is not getting better and they do not seem to have answers except “maybe if you were home you would do better”.  Seriously!  So the Dr. from last night shows up and says the “New Age Team” will be stopping by and the head Neuro Dr is also stopping by.  The next visit is from the group.  We hear the same thing we heard yesterday, I guess repetition is how they teach, who knows.  We show all the newbies Logan’s planter warts, they all seemed really interested, Dr’s are weird.  So they continue to discuss the case and one resident seems like she wants to say something but won’t.  Finally I point at her and say “hey you want to say something, what?”  she tells us and the group that oxygen may help.  What?  Oxygen?  The teacher Dr. says that is a good idea and we should try it.  So we finally have a plan.  In the meantime the head neuro Dr shows up and says we need get him functioning again and he needs to move around.  Yeah ok.  She then talks to me outside and asks if Logan is basically seeking attention.  Oh my.  So I have to go into the whole thing that he is not and he is a great kid, and so on.  She is satisfied with my answer and we go back in.  She learns of the oxygen treatment that will be given and, are you ready for this, she says “oh that will work, his headache will be gone in no time and he can go home”.  At this point I do not even know what to say.  If this is all it was going to take why did she not do it day one.  So the oxygen starts and sure enough the headache goes away.  I mean gone.  Why could they have not done this earlier?  That’s right, they need to make money and sell the drugs.  This is only my opinion and will refrain from saying anything else.  I ask for a script for an oxygen tank, and they gave it to me.  Trying to be proactive.
It was a long week, but at least the Dr’s worked together and figured it out.
I know this is long, but the best is yet to come.  The visit from the “New Age Team”.  They show up, I am sure totally excited because they get to do whatever it is they do because the “regular” Dr’s cannot figure it out.  So they come in and Logan says “I’m all good.  Headache is gone.  The oxygen therapy worked”.  Thinking this would crush their spirit, she says, “of course it did, but since we are here”.  Oh boy here it comes.  She starts talking to us about music therapy, aroma therapy, and acupuncture.  Logan and I just look at each other and smirk.  She asks us if we would like to try some music therapy.  We kindly agree.  This one lady pulls out a small harp, asks if she can sit next to me.  The other Dr. tells Logan how to breathe and the music starts.  She tells us we can hum along if we wish.  Logan is trying not to laugh, I am dying inside and the harpist starts humming James Taylor songs.  I am trying so hard not laugh.  I am biting my tongue, pinching my arms.  Logan looks like a dear in headlights, focusing on the door.  The other Dr. is touching Logan’s chest teaching him how to breathe.  At this point I have tears built up in my eyes, and the songs keep coming.  They finally finish the concert and the Yoga Dr. comes in.  I cannot make this stuff up.  She then teaches Logan breathing exercises.  My personal favorite is the Alternating Nostril exercise.   They finally take off and Logan and I start cracking up.  of course once they leave we had to go online and watch our favorite video, Yoga Girl.   I have attached for all to see.
Yoga Girl video  a must see.
 We then packed up and get out of there. 
What a week.