Sunday, June 24, 2012

Happy 11th Birthday, Hank!

Donuts for the Birthday boy!
Today is Hank's 11th Birthday.  Eleven years with this kid...We are so blessed!  Hank has been through so much in the last few years...and yet he remains the same kid that he's always been. Someone once suggested to me that Hank was probably a more compassionate person, because of what he has been through...but that's not quite accurate. Hank has always been a very kind and compassionate child. Always the first to check on someone who is hurt, quick to cheer others up...sure he understands illness, surgeries, and recovery.  And he   is empathetic for those going through something challenging...but to say that he is more was and always will's who he is.

Hank's entry into this world was traumatic at best. It was a long labor and he was not breathing when he was born. It was an emergency...lights flashing, loud bells and beeping and a lot of people running into the room. They held him up, with a quick, "It's a boy!" and whisked him across the room. "Breathe Hank, breathe!" the nurses quietly chanted.  I remember looking at Jeff, "They just named our baby," I said. OK, so we were pretty sure if it were a boy, his name would be "Henry" and we would call him, "Hank"...but we liked the name Steven, too! Soon, we heard a small cry that turned into a loud wail...relief! But we weren't out of the woods yet. I ended up with a femoral neuropathy, which means my brain wasn't connecting with my legs, and really...I couldn't feel most of my right leg and half of my left..essentially paralyzed, which lasted for 3 months! And poor Hank...his head was so beat up from the doctors misuse of the suction thing...31 times, she used it. (The hospital's protocol was 3 uses)...and he was suffering from headaches at birth.
Hank at 6 months
Yes, we could have sued the hospital, the doctor...the people that make that suction thing...but I always had it in my mind that it was OK...Hank was OK and that's all that mattered. But in the last three years, since Hank was diagnosed with Parry Romberg Syndrome...I have often wondered if that difficult birth, is what caused or triggered his PRS...There are cases of PRS that have started because of a trauma...and certainly, that was a big trauma!

Happy Hank!
From that difficult beginning to a strong and stoic eleven year old boy! Hank has overcome so much and I am amazed by his strength...then and now! Health-wise, all has been quiet since his last surgery 2 years ago. But a new turn of events has us puzzled. Hank is having "ice-pick" headaches. They feel like someone is stabbing you in the head! It's terrible..and when he gets them, his hands fly up to the spot and he cries out in pain. It's all new...just the last three the evening. Wonder if it's a food allergy (too much ice cream?) or something else more sinister... I've been dragging my feet about taking him in to see his amazing surgeon, Dr. Siebert. It's been two years since he has seen Hank...we know Hank needs another surgery. The flap seems to have slipped a bit, making his eye appear droopy and his cheek needs "debulking". I was hoping to wait...Hank doesn't want another surgery. (who would?) So I was waiting...but now these's time to go in.

I have made the necessary calls to schedule some time. We are waiting to hear when the Operating Room at the Children's Hospital in Madison will be available. We are hoping for give Hank enough time to heal. If we can't get in before August, then we will wait until October and time it around Veteran's Day, when the kids get a day off.  Our thought is that it would be tough to start 6th grade all bruised and battered from surgery...but 6 weeks into the school year, he can tell the kids he is going in for surgery and it won't be that big a deal. (keeping fingers crossed)

Hank and Lucy playing "Stratego"
For now, we will continue to monitor the headaches and I am making an appointment to get Hank's eyes checked. Maybe he just needs glasses? (Thanks for suggesting that, Theresa!) Hank is enjoying the lazy days of summer. Swimming, eating ice cream, reading, cooking, playing video games, time with friends, sleeping in...staying up much too late...I love these days where I have all three kids at home! Hank has been digging around in the garage and found my old Parcheesi game and Stratego game. The kids think it is so fun to play the games that mom used to play at their age! (I think it's fun, too!)

We are thinking of all our PRS friends who are in Madison having surgery, recovering from surgery or scheduled for surgery this summer...Avery and Kristina, Justin, Kelsie and Christine. We are all so fortunate to have this life changing surgery available, under the competent care of Dr. Siebert. I can't imagine what Hank's life would be like right now, if we hadn't found Dr. Siebert! He is a hero to so many!!

Time to get back to celebrating Hank's birthday. The house is decorated with streamers and birthday signs.  He has had his breakfast of donuts...the day is his! Whatever he wants to do..It's been an amazing eleven years with this boy...Hank has taught us what is important in life...he has shown us what true courage is...and I strive to be more like him!

Tuesday, June 5, 2012

Fundraisers and the end of 5th Grade!

Having a fundraiser is always exciting. It's a chance to educate and raise awareness for Parry Romberg Syndrome. We meet amazing people and I am overwhelmed by the love and support...It is also a reminder that we are different. That we are that family that I used to read about in the newspaper...that is us now! I don't really mind that part...But it is a reminder that Hank has something that is deemed incurable...that he could possibly suffer greatly in the years to come...

Oh sure, we talk about it now and then...usually when I have been contacted by another family who is struggling to come to terms with the diagnosis and trying to make sense of it all. But I don't think Hank thinks about it all the time. (I don't really know...but he doesn't seem to...)  Hank is too busy to be bothered by such things. He has video games to play, baseball games to play, drums to play, books to read, bikes and scooters to ride, and schoolwork to accomplish. Hank told me a few years ago that he is cured. I like the way he thinks. So in Hank's mind, he "used" to have Parry Romberg Syndrome. I want to believe that...and for the most part I do...but that worry in the back of my head is always there and that heaviness in my heart remains firmly rooted.

Hank and his pals having a blast at Funderland!
On May 11th, we had THE most amazing fundraiser for Hank! The "Hope for Hank" Fundraiser took place at Funderland, a local small amusement park. They opened the park from 5pm-8pm, and all proceeds went to Hank. The mastermind behind it all was park owner, Ashley Edds. After hearing Hank's story from his former teacher (and Charlie's current reading teacher), Stacey Weller, this young woman took it upon herself to do something big for Hank. And big, it was! We are still grinning from ear to ear over the event! And people are still telling me how much fun they had! The park is small enough for the kids to go from ride to ride on their own, with their parents trailing behind. I hardly saw my own three kids that night, as they paired up with friends and had a blast!

Hank and Ashley Edds.
Ashley advertised the heck out of the event and the turnout was tremendous! We knew about 40% of the people there...the kids' school friends, baseball friends, my friends, Jeff's co-workers...but the rest...the rest were all Ashley's doing. Ashley told me the park holds about 400 that was my goal...and we hit 400 an hour and a half into the event! When it was all said and done, we sold well over 500 wristbands and probably saw at least 600 people enter the event.

Jeni paints Lucy's face with a beautiful butterfly!
My friend (and fellow parent at school), Jeni Maxson, volunteered to head up a silent auction. Not only did she donate to the auction, but she got others to donate and then set it up and ran the whole thing! On top of that, she organized a face painting booth...and along with friend, Patty Rovegno, worked hard all night making kids happy. We are so grateful to all who participated and made this event so special!

May was a busy fact every single day of May had something scheduled. The day after Hank's fundraiser, was his brother, Charlie's First Holy Communion. Such a special day, following a special evening. That night, we went to the Rivercats baseball game.  (Minor league baseball team that feeds into the Oakland A's) It was little league night, so the boys got to walk around the field with their teammates before the game, as well as get autographs from the players and listen to the coach's "chalk talk".

Taking the field during Little League Night at the Rivercat's Game!
Speaking of baseball... my last blog post was about Hank's baseball team and if we should invite them to Hank's fundraiser. I was torn...we didn't want the coach's or kids to treat Hank differently, if they knew about his PRS. I agonized over the issue and appreciated the comments and advice that people offered through the blog and our Facebook group.  In the end, we left it up to Hank. Hank's decision was to keep it away from baseball...I think he just wanted a chance to "be like everyone else" and not be the kid who is having a fundraiser. So although we really wanted the league's support and his teammates would have had so much fun...I respect Hank's decision...after all..this is his life to lead, not mine. (I'm just a supporting player). I did find out after the fact, that a teammate, at the beginning of the season, asked Hank, "What is wrong with your face?" (ugh) According to his mom, Hank told him, "I have Parry Romberg Syndrome and had to have surgery." And that was that...Interesting that Hank never told me...but I think at this point he tends to protect me!  Now that the season is over, and we can look back...I do believe that Hank's coaches and teammates would have embraced him and not treated him differently...but was Hank's decision.

Hank's 5th grade promotion
We did invite the coaches and players from Charlie's team and many of them showed up. So, we still had support! We were very fortunate to have lots of friends who posted flyers throughout our area, including the public school system, library, fire departments, police departments and downtown stores! As well as many school parents who printed out flyers and took them to work! We are so grateful for the help!

The last weeks of school were crazy...with three school age children, it is busy! Field trips, projects, class parties, championship baseball games, karate belt testing and Hank's 5th grade promotion! Whew! I'm exhausted just thinking about it. But it is summer vacation. Already, the kids have adopted the lazy ways of summer and I am right there with them. We need some downtime!

We are awaiting word from Hank's surgeon on a possible surgery date. We aren't sure if it will be this summer or fall. Of course, summer would be better so he won't miss school...but as always, we will do whatever we need to do!  *You can check out all the fundraiser photos on the "Hope for Hank" Fundraiser at Funderland tab at the top of this page.*