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!

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