Tuesday, May 26, 2009

No more illness...bring on the cupcakes!!

Twenty one days of illness... three-year old Lucy came down with the dreaded fever and canker-sore-in-the-throat virus. But after a week of being home and every little wish catered to, I am proud to say that Lucy headed back to school today! Finally get a little freedom, only to realize that school is out for summer in just 5 days!

Kept Hank out of school this morning (Friday) and headed up to the "We Bake for Hank" fundraiser. Jeff and my sister, Barbara went along. What an amazing spread! These are some talented women who put a lot of time into their beautiful baked confections! We didn't tell anyone that we would be stopping by and the genuine surprise and pleasure these ladies had for Hank's visit was wonderful. I felt like I was with a rock star as the whispers of "It's Hank!", spread through the office and one by one a woman would appear with a huge smile and a warm handshake. I KNOW that Hank felt extremely special! And Jeff, Barbara and I felt extremely grateful. I am awestruck that this group of women, who don't even know us, took the time to do something like this... all because Hank's story touched them. I can't thank the women from Lisi Inc. enough!

Yesterday was the 6th year anniversary of my Dad's passing. Can't believe it's been that long. Hank was just shy of his 2nd birthday at the time, and Lucy and Charlie weren't even a thought yet. We had mom over to commemorate the day and had our annual "Balloons for Papa" celebration. We each chose a different color of balloon and wrote a note to Dad on it. Lucy and Charlie signed their own names and told me what to write. Hank, of course wrote his own. We headed out to the backyard where we shared our notes and one by one let go of our balloon and watches its ascent to the heavens. As their balloons would disappear from sight, the kids would yell, "Papa has my balloon!" That really choked me up. I love their ability to find excitement and joy in just about anything.

Looking at the calendar...we leave for New York in less than a month! Where has the time gone??? Grateful that the time for surgery is growing closer and at the same time, wishing it wasn't! I want Hank to get the help he needs and am anxious to get through it, but wish he didn't have to go through it. Poor little guy... so excited about his next trip to NY and his surgery...but what does a 7 year old really understand about surgery.

It's now time to focus all our energy on the big June 13th fundraiser. Patty and Mike, along with Mike's brothers and wives, own a winery, here in town. They are hosting an event for Hank, in an effort to get him to NY and help with the medical bills. So grateful for all that everyone is doing...but soooo wish we could just do it by ourselves! Definitely teaching me humility. I am trying to subscribe to "Let go...let God". Pretty difficult for a bit of a control freak who thinks she can do everything by herself!

Our life paths have taken on a new direction. Thought I had it all planned out. Leave my career, relocate to Elk Grove, raise the kids, have some fun, make some money, be with family...etc. There was NO room for Parry Romberg's on this list! Not in the plan. Helloooo? Does anyone else see that listed? Did I miss something? NOT in the plan!! HOW did this get in the plan?

And so again, I am reminded that although we can make choices and we have free will...our plan is not entirely OUR plan.

Tuesday, May 19, 2009

Fundraising Success

It's been a long couple of weeks. Hank's fever came down from 106' and never went back up. (huge sigh of relief!) And just as Hank got well, Charlie (age 5), came down with it! Charlie's fever hasn't shot up as high, but has gone into his ears...poor little guy! The way things are working out...Lucy should have this by Friday, starting the 3rd week of illness in our household!

Hank's high fever scared me. Knowing that Hank has Parry Romberg's amplifies any little ache, pain, sniffle, fever...for me. It puts me on the alert...like I am sitting on the edge of my chair, watching to make sure he's OK. But he happily went back to school on Monday and seems to be feeling fine and enjoying the last few weeks of second grade.

We had our first fundraiser at Rubio's in Elk Grove this past Friday. It went all day and we had a tremendous turnout! Jeff received a call from a friend who told him that "the lines are out the door" at lunchtime.

I know a lot of us had lunch and dinner there! Good thing we like the food!! We took the whole family there for dinner and were truly overwhelmed at the turnout! Friends, baseball teams, families from Moore's Karate, more people from the Montessori school, members of not just our church, but other churches as well! Friends of friends, neighbors, co-workers, business associates...awesome! I asked Hank what he thought of all the people there to support him..."Pretty Good" he said with a huge grin.

As I write this, tears come to my eyes just thinking about the public support for Hank and the rest of our family. Our loved ones (and Jeff and I too) worked so hard to get the word out and it really showed. I didn't want to take this public, but found ourselves in the position of having to... and now that the word is out, I am amazed at the generosity and willingness to help that has come from so many different directions!

Our family, extended family, and close friends have really been working hard to get us to New York. You kind of expect that your family will do whatever it takes, but then you step back and see how busy they are...with work, kids, school, life...and you are amazed that even though they are buried under their own burdens, they take the time and energy to devote towards someone else.

It's funny, the people and organizations that you think will come through for you don't necessarily...and then others that you never expected, come through with flying colors! I've learned that nothing is at is seems...that you can't make people want to help or do what you think is the right thing....that has to come from within themselves.

We have had donations coming in from people we don't know....a man I sold a crib to at our garage sale, (over a month ago) showed up at the fundraiser and handed my sister-in-law $100 for Hank's fund...he didn't come to eat, just to donate. He remembered my telling him about Hank...well, he probably remembered that I wouldn't come down to $65 for the crib because I was trying to "raise money for my son's operation"! But bless his heart for remembering and then taking the time to come down and donate.

Overwhelming! Amazing! Inspiring! In spite of this unknown illness and difficult time ...We truly are blessed!

Monday, May 11, 2009

The Highest Fever Ever!

Hank is sick. Has had 5 days of a really high fever. I don't like it when Hank is sick. This was the first year that he made it through the whole fall, winter and most of the spring with no illness. Maybe a tiny cold, but that was it. I think we owe it to the naturopathic supplements he takes.... so why is he sick now? Took him to the doctor yesterday morning. She said he had a virus, and we had to let it run its course. Tested him for Strep which came back negative.

But yesterday evening, Hank's temperature spiked to 106.6'!! I couldn't believe it when I looked at the thermometer. I could feel that rising bubble of complete panic start from my stomach to my head. I called my mom with a "Hank has a temperature of 106'! What do I do?" (always go to mom first, right?) She told me to call the doctor. It was after 5:00 pm, and unfortunately, I got the one nurse who apparently has never dealt with a really high temperature and she started asking me questions and consulting her computer screen for protocol. I wanted to scream... Jeff got home after picking Lucy and Charlie up from karate and looked at me inquiringly as I continued to answer questions on the phone. I wrote Hank's temperature on a piece of paper and Jeff's eyes got wide as he paled at the number.

I pretty much needed the nurse to just answer two things..."How do I bring the temperature down?" and "Should we be en route to the hospital?" Pretty clear cut...but she took what felt like an eternity...I could hear other voices behind her and finally asked if there was another nurse she could consult with that may have experience with high fevers. She excused herself and came back on..."OK, I am calling the doctor right now, and will call you back." UGH! I called my mom again who said to strip Hank down, wrap him in a sheet and sponge him down with tepid water, exposing one limb at a time and drying him off afterward. Jeff started the sponge bath and I quickly threw dinner together for Lucy and Charlie. (Thank goodness for frozen chicken nuggets and Top Ramen!)

The nurse called back and told me to get him to the emergency room in downtown Sacramento. OK, why do I live in a town of 130,000 people and no hospital? We used to live in a town of 50,000 and had 3 hospitals! After 3 years here, we have avoided the hospital, but I knew this day would come, so I quickly mapped it out on the computer and got ready to go. The nurse called back and said, "I didn't realize there is an after-care unit where you are. Go there instead." Woo hoo! Reprieve!

Anyway, I won't go into how I RAN into the office, carrying Hank, who had developed chills, and was wrapped in a blanket, only to find I was in the WRONG building! Race back out to the car, drive around the medical center and start all over...oh, but this time I had to go through the building, up the elevator and down the long hall to the doctor's office, all the while fighting back tears, carrying a 48 lb boy who's all arms and legs and burning up and making me feel hot too!

Of course by the time we got there his temperature had fallen to 102' and Hank had perked up. The doctor said he has a virus called Epstein-Barr, characterized by the horrendous canker sores carpeting Hank's tonsils, and that it would probably hang on for a week. No real advice on the high temperature... I did look Epstein-Barr up on the Internet, since I do know what it is, and confirmed the fact that you need a blood test to diagnose it. (which we did not have). I did type in both Parry Romberg's and Epstein-Barr to see if there is a correlation, and did get a few hits, but I don't know. Does Hank's PRS make him more susceptible? But given the symptoms and lack of real fatigue, I think Hank really has tonsillitis, which was my favored childhood illness.

Hank stayed up late last night and I sat beside him and read the first "Harry Potter" book to him. His temperature came down and he slept through the night. (At least one of us could sleep). Today, he woke up without a fever and is upstairs playing a video game. He even ate a muffin for breakfast. I'm sure that the fever will be back, but it is such a relief to see him feeling better.

As I write this, here comes 3 year-old Lucy, holding her stomach saying, "I'm sick...sooo sick". But with no fever and a healthy appetite, it seems that this one just wants the right to have her own pillow and blanket on the couch and the option of eating in the family room on her tray-table. And so I will indulge her and pray that she won't really be needing these things later in the week!

Friday, May 8, 2009

Going Public

The news has spread. After many months of keeping Hank's illness to ourselves, only telling family and close friends...we have gone public. It's scary. And wonderful. We have tried so hard to protect Hank from being "different" or being treated like a sick kid. But it was inevitable that we would have to tell others. With only 18 days left of school, I hope we can get through it without kids teasing him or making him feel like a freak. (my big fear)

Part of me wishes that we could just not tell a soul, quietly go to New York, have the surgery, come home and resume life like none of this ever happened. But that is not reality. In reality, we can't do this alone. Not only do we need financial support but we need moral support as well.

And so, over the last week I created a web site and today it went "live" and the emails were sent to notify just about everyone we know. And even on Facebook, where Jeff and I have probably close to 200 friends between us...I started a group. To see that 30+ people have signed up is amazing. It got me thinking...what if 100 of our friends joined our group, and each of them told 100 people, and so on...Soon, Parry Romberg's wouldn't be something that no one ever heard of. People would actually know what it is. And then perhaps more research would be done because all of a sudden, an "obscure" disease becomes "mainstream". It would prove that just through friends, we can make a difference!

The outpouring has been overwhelming. Those who had no idea about Hank's PRS were stunned and those who knew were glad to have a site to send to family and friends. The promise of prayers and good thoughts were the best! Prayer is a powerful thing...we know the prayers are giving us strength!

Hank continues to feel good. He took his "belt test" at karate tonight and passed! He is now "high" purple! He was so proud when he showed me his new belt! The karate gives him confidence and he is learning to protect himself, which makes Jeff and I happy. Lots of accomplishments this week...First Holy Communion, new karate belt... life just continues on. And for that I am grateful!

Friday, May 1, 2009

It's All So Real

It's been a busy week of fundraising plans. The trust account for Hank is finally ready! Now people who want to help but can't make it to a fundraiser can donate to Hank's account: The Helping Hands for Hank Trust. Very relieved...this will help those who are heading up Hank's fundraising campaigns move forward!

In just two months, Hank will have his surgery. He is asking questions...I think that's good. He wanted to know if he would be surrounded by "those guys dressed in green wearing those mask things". I let him know that those are doctors and nurses and they would be in the operating room, but he wouldn't see them because he will be asleep. He asked, "what if I open my eyes?" And again, I had to explain that he wouldn't be able to open his eyes because he would be asleep. I told him there is doctor in the room who's soul job is to make sure Hank will sleep. I'm not sure he's convinced!

It's also been an emotional week...and maybe it's just because the stress of all that lies ahead. Opening up the bank account is wonderful and will help so much, and yet I found myself with tears streaming down my face as the woman explained the account to me. Each little bit we do makes it all so real. Hank's illness is real...his surgery is real...Hank having to go through recovery is real...and leaving our sweet little ones behind is real.

I know it's what we need to do. I know it's the right thing to do. And I am excited that we found a wonderful doctor who can perform this surgery. But I am dreading that day...the day Hank is wheeled into surgery and those big doors close, shutting me out and taking my sweet boy away from me. Alone, without his mom and dad. And then the waiting...waiting to hear how it's going, is Hank OK, is it going to be much longer...?

So that is the near future, but it is not today...and so we focus back on the present. Fundraising, educating the community about Parry Romberg Syndrome and preparing for our trip.

Tomorrow Hank will have his First Holy Communion. Rehearsal was tonight and Hank looked like an angel, standing at the podium and welcoming everyone. His voice was loud and strong...no mumbling for him! I was so proud watching him and am so excited for tomorrow.

Hank will be wearing a suit for his big day. He loved the suit jacket when he tried it on and asked if we could get it. He seemed so pleased to be wearing a suit and looking like a grown up. I thought that he wanted to get dressed up for his special day...no...that wasn't quite what Hank was thinking...I found him wearing the suit and shooting pretend guns as he hid behind a door. He was being a secret agent. Oh...that's why he wanted it! Figures!