Pump

Hannah now has an insulin pump. Monday was a long day. Tommy went along with us to learn how to operate the pump. Hannah knows how to do everything with the pump. She is amazing.
She is eating more, but forgetting her enzymes :( It is a constant battle to keep her doing everything she needs to do. How do you tell an 8 year old she needs to do this stuff to live?
She doesn't like to talk about it. I don't blame her I don't like to talk about it either.

Boomer has donated money to Children's Hospital for a dedicated CF in-patient wing. This is great! Customized to fit the needs of our kids and families.

D Day

February 21 is D day. On February 21, 2001, Hannah was diagnosed with cystic fibrosis. I remember everything about that day. I did not go to work that day, I used a vacation day. I took Hannah for her sweat test at 9:00am. After the test, I stopped by work to show her off. She was such a beautiful baby she just couldn't have a deadly disease. I took her to the baby sitter. Then I went shopping and bought a bunch of clothes for her on clearance that she could wear the following winter. I went to the grocery store and bought pork chops for dinner. Tom was still working nights so he slept. They said the Doctor would have the results after 4pm. So when Tom got up, he called the Doctor's office and left a message. I started dinner and he left to pick up Tommy and Hannah. When the phone rang about 4:30, Dr. Boukulic was on the other end. I knew the news was bad. Doctors don't call with good news. I remember getting light headed or like I was dreaming. I knew I had to hold myself together to hear every word he had to say. The one thing I don't remember is her score. I remember one arm was off the charts high and the other didn't register. He said we would repeat the test but there was almost no chance it could be a false positive. We also had to test Tommy. We couldn't get them tested until Monday and this was Wednesday. He told me to take her to Children's the following day to learn about air way clearance and to get enzymes to help her digest her food. While talking to him, I had slid down the wall and into the floor. As soon as I hung up, I started to cry hysterically. I called the sitter to see if Tom had left and found out he was on his way. I started pacing and crying. I called my boss so he would know and he told me to stay home the next day but I said no I would be in late. I needed to try to keep my mind occupied and still do. I had barely enough sense to take the pork chops out of the oven but I did. The few minutes I spent waiting for Tom seemed like hours.
I met him at the door and we cried together. We thought our baby was as good as dead. Tommy couldn't understand what was going on he was only 6. I felt like I was going crazy. We started to call family and friends and found ourselves consoling them. We looked at the CF Foundation website and learned the life expectancy was 32. Not long enough. Tom called in sick to work, there was no way he could have gone to work having just found out and he needed to go the next day to learn how to care for her. In a brief moment, our lives were forever changed. Nothing would ever be the same, this disease would shape the rest of our lives. Change who we were and believe it or not, we are better people as a result. You quickly learn what is important, you love your children more, you have a purpose. We wanted to raise awareness, we wanted to raise money to find the cure. She has touched so many people and is an inspiration for all that meet her. She is a hero, my hero. I want to make her proud. I know Tommy is inspired by her. He said today that when he gets into major league baseball CF will be his platform. Famous people can make a differnce he says. I am so proud of him. He is such wonderful young man. The Team for Life ran in Hannah's honor today and Coach Wayne said the most beautiful prayer. I hate this disease but I have met some wonderful people as a result and I wouldn't change that. God Bless you Hannah, you are so strong.

RIP Stewart

Last night was a bad night. Hannah found her guinea pig dead in his cage. I'm not sure how long Stewart had been dead he was inside his "house". She found him when she went in to check on him before going to bed. Naturally it was 10:30 and we had to bury him. Tom was finished by 11:00. We are all exhausted. Tommy took Stewart's cage and supplies out of Hannah's room. Needless to say she would not sleep in there last night. Tom gets up at 4:30 for work and I get up at 5:30. Ugh. Stewart was about 6 years old so he lived a good life.

I was so upset that Hannah found him. I was standing in the kitchen holding him crying like I had just lost my best friend and screaming for a box. Good grief. No more guinea pigs.

We have now officially started our pet cemetery. I don't know how I will handle losing one of the dogs or cats. I guess you can tell when dogs and cats are going to die so we can prepare ourselves. Not the case with a guinea pig.

RIP Stewart, Hannah loved you a lot. We will all miss you. You were cool.

I'm having a CF day

I call them CF days. Sometimes it all just gets to me. Work, knowing this disease is slowly killing my child, the drive, the stress you name it today was just one of those days. I feel like my nerves are sticking out of my skin and every little thing people do or say just gets to me. I don't know what triggers it, I'm guessing it had something to do with doing Hannah's 504 plan yesterday. I didn't get to work until 12:30 and sitting there for an hour talking about all the accommodations Hannah needs was just a reminder of how hard her life really is. The diabetes, the fatigue, the coughing, shots, medicines it is way more than any 8 year old should deal with. She is so brave and I know sometimes it gets to her too. I think when she feels anxious she starts to act silly. I'm thinking we need to get her to a psychologist soon. She needs someone to talk to, she knows this disease will kill her someday. How do you deal with all that when you are a child?
I did my 2 mile walk/run tonight. I'm getting close to running more than walking. Maybe next week.

Flying Pig

Tommy and I starting our official training for the Team For Life Saturday. We walk/ran 2 miles Saturday and today we did 3 miles in an hour. I still think I have lost my mind. What is a 47 year old, obese woman doing running on a relay team in a marathon? Anything for Hannah and to raise awareness for cystic fibrosis. Besides I still need to lose 90 more pounds, and I am getting in shape. It is never too late. I feel great.

Finally sunshine!

I am so happy to see the sun shining. Tommy and I start training for the Flying Pig tomorrow morning.

Today's bible verse was really great today.

Jeremiah 32:17
February 06, 2009
"Ah, Sovereign LORD, you have made the heavens and the earth by your great power and outstretched arm. Nothing is too hard for you."

Thank you to my Big Bro

I must take a minute to say thank you to my big brother Marv for helping me make Hannah's sight so great. If I was left on my own, it would be a mess. I only wish he lived a little closer. Little sisters always look up to their big brother. I know Hannah thinks Tommy is the greatest. When they were younger, she would always take up for him when he got into trouble. I never did that for Marv everything was always his fault. I remember having paperwad fights on the steps in our house on Miriam Drive in Florence. Tommy and Hannah do similar stuff. Tommy is more protective of her than he admits.

I'm tired of the snow. It took me 2 hours to get home last night and an hour and 1/2 to get here this morning. I Supply is a great place to work so I'll just keep on making the drive. Still beats the drive to Hebron.

February 3, 2009

Hannah is still coughing a little from the pneumonia that started in December. I hate the sound of that cough. When she's coughing, it is a constant reminder of this horrible disease and what it does to my little girl. Hannah had a bunch of homework she needed to do last night. Tom and I had weight watchers last night and didn't get home until almost 7pm. It gets overwhelming sometimes to try to fit everything in. I feel like I never stop.