Cure 4 Hannah

10 years ago today

2011-02-21T09:09:00.000-08:00

Can it really be ten years since Hannah was diagnosed with CF? Wow seems like yesterday. I remember everything I did that day, what I cooked and the time the Doctor called. What a strong young lady she is. She is a bright shining light in our lives. I hope it never goes out.

Updates

2011-02-04T13:45:00.000-08:00

I haven't written anything for quite some time. The last thing I wrote about was worrying about Hannah and I was right. She ended up being admitted to Children's on Sept 1 and was in almost the entire month. A positive culture for stenotrophomonas (however you spell it) got her 2 weeks of IV antibiotics. She went in for a sinus headache and they found this new bug. She came home for four days in September but ended up back in the hospital for intestinal issues. Then there was sinus surgery on Oct. 6 and 2 positive cultures for pseudomonas and eight weeks of tobi and four weeks of cipro. Fun times.

Another intestinal back up and back in the hospital to start the year.

Things look good for now.

I'm worried about Hannah

2010-08-12T19:57:00.000-07:00

OK so I'm starting to really worry about Hannah and it is affecting my personality. Her glucose is running extremely high and we have her under our thumb getting insulin in her. She woke up with it over 300 this morning. We have only had one reading below 300 in the last 4 days a couple over 600 and several between 300-600. What the hell is going on? It has always been a struggle getting her to take her insulin but the glucose never got this out of control. Makes me wonder if something else is going on. I am so stressed about this and what Best Buy did to my checking account that I want to scream. I really want to curl up in a fetal position and sleep for a month. Oh well, can't do that, drinking won't help, I don't smoke or do drugs so I guess I will pray.

I'm tired

2010-05-03T04:07:00.000-07:00

So I am trying to put in 50 hours a week but this morning when I woke up at 4:00am I had the shakes, I just couldn't do it. I arrived here at 6:30am. Oh well. Tommy ran the half marathon yesterday in the Flying Pig for his sister.
He is growing into quite a wonderful young man..

One more night at Children's

2010-02-26T16:00:00.000-08:00

Here I am for one more night at Children's. I told Tom I am very close to curling up in a fetal position. I can't take it one more day. She is much better and I will continue to give her IV antibiotics at home. I really should go back to school and become a nurse.

While Hannah was receiving a massage, they discovered an odd looking mole so we need to get that checked out. Just one more thing to worry about. I'm sure it will be fine. If not, we will just deal with it and put it in God's hands.

Here we are at Children's

2010-02-19T14:17:00.000-08:00

I haven't posted anything for awhile. Let's see, I had neck surgery in January for a ruptured disc. I woke up on November 7th and it felt like I stuck my arm in fire. The worst pain I have ever had in my life. Worse than "birthin" babies. Turns out it was a pinched nerve caused by the ruptured disc. Been in a neck brace since 1/14 but I am slowly weaning off. Can't go back to work for another 2 weeks.

Hannah after having a fairly uneventful 2009 is now at Children's with an intestinal blockage and IV antibiotics. Might as well clean out everything while we are here. After the hell of 2009, I was hoping 2010 would be better. It can only get better from here:)

Surgery

2009-09-11T14:45:00.000-07:00

Today I had surgery to fix a little leaking problem I was having. It was a quality of life issue, could I live with it; yes but why. I am so glad I got it done. I can already tell the difference.

I'm a little stoned on pain meds but oh well.

Monday I am having a growth taken off my middle finger. I must have over used it LOL.

Hannah goes to the CF clinic and diabetes Doc on Monday. So far I know her chest x-ray was incredible, yippee and her liver enzymes are elevated again booooo. I love being able to go online and get a peek at the results before the visit. She is coughing a little and I bet she grows staph in her throat culture again.

I have been forbidden to go to softball practice tonight so I can recover and go to the game tomorrow.

Have I mentioned lately how much I hate CF? Well I hate, hate, hate it.

I absolutely love being a mother my kids make me proud every day.

Tommy

2009-07-02T06:35:00.001-07:00

Someday soon I plan to have my nervous break down, but right now I don't have time.
Tommy had a seizure on Sunday and has had a CT scan and an MRI and is OK. He is just not quite himself. Very tired, falling asleep on the couch just not normal for him.
He is just a wonderful kid. He is my buddy, my rock. We are so proud of him.
He plays with the younger kids in the neighborhood and I know he doesn't realize it, but that speaks to his character. He is great with younger children always coaching. Someday he will be a great father.

When Hannah heard about his seizure, she was upset and said she didn't want him to die. He was too much fun to annoy.

Of all the things we have been through with our children, that call from his Aunt telling me he was having a seizure was probably one of the scariest moments. Tommy is so healthy and strong, I just couldn't grasp the words. A total shock. Not Tommy, I would not be shocked to hear this about Hannah, the one with CF diabetes, but not my bud, my running partner.

I'm sure he will be fine and if not, God will get us through whatever happens.

But really God, it is not funny anymore. :)

Walks are over until next year

2009-05-17T19:24:00.000-07:00

I'm tired. Mason's walk last Saturday raised over $13,000 our team was $1500 of that.

Cincinnati's walk was yesterday but I don't know the totals we had to leave to go to Hannah's softball game. Tommy won his game yesterday and Hannah lost her first game.

Dayton's walk was today and we had to leave before I heard the total. Hannah had a game and they won! Hannah had a double. She is great. You can really tell she has been playing awhile.
I am having a blast coaching these girls. Their faces are so sweet when they look up at me to get their fielding positions.

I said I was glad the walks are over and softball only last a few weeks. Tom reminded me that I will be depressed when it is all over. Post walk depression. I get it every year.

I am training for a 10K on August 1. Training every Wednesday until that Saturday. I have a great friend training with me. So far, we are having a blast.

We did it!

2009-05-05T05:08:00.000-07:00

Tommy, my friend Jim and I survived the Flying Pig relay. What an awesome experience. I am not ususally the type to brag about myself but I am so proud that I was able to walk and actually run part of my 5 mile relay piece. And words cannot express how proud I am of my son. Tommy grew quite a bit as a person through this experience. After the race Hannah gave Tommy a big hug. My kids are great.

God Leads Us

2009-04-22T05:59:00.000-07:00

I have a calendar on my desk and today's inspiration is:

God leads us. God will do the right thing at the right time. And what a difference that makes.

I needed that today. There is a lot of stuff going on in our family's life right now that I won't address in this blog because it is too personal to speak of at this time. Our family is rock solid so don't read anything into that. It has to do with extended family in another part of the country that is in need of all our prayers. I thought this quote very appropriate for the situation.

When God works on problems in your life and you let go and let Him do it, it is amazing what happens.

I haven't mentioned it before but my big brother turned his life over to our Lord and Saviour quite some time ago and I just learned by nephew Brad just did the same. This is a big deal for protestants. My brother and I lost our mother 21 years ago to a heart attack, I'm sure she is in heaven with a huge smile on her face and very proud of all of us. Our father and step-mother are quite proud of all of us too.

A very dear friend of mine recently sent me this bible verse:
Romans 8:28
And we know that in all things God works for the good of those who love him, who have been called according to his purpose.

The Cough is Back

2009-04-17T18:00:00.001-07:00

The cough of a child with CF is like no other cough you will ever hear. It has its own unique sound and it is back. I hear her coughing all night. Finally gave in and put her on antibiotics. She was in the hospital this time last year. April is a tough month on our CF kids.

Prayers are needed for her.

Hannah's April Visit

2009-04-07T13:17:00.000-07:00

Pretty uneventful visit. She is growing her usual h-flu and staph but for now we will just watch and try to avoid another round of antibiotics.

Her weight is good and her PFT's were great. We are trying to get her into some clinical trials but because of her liver disease she may not qualify for too many if any.

Heart Mini-Marathon

2009-03-30T05:11:00.000-07:00

Tommy and I did the Heart 5K walk yesterday. We ran a little. Tommy could have run the entire thing probably. I am so proud of him he is such a caring young man. He hit Hannah in the eye with a softball (accidentally) and he spent quite a bit of time in her room consoling her. I have two great kids.

I'm proud of myself for my first 5K, not that it is very long but a year ago I could barely walk a mile. When we were finished, I felt like I could have easily done another couple of miles. I might be ready to do the Flying Pig in 5 weeks after all. That is about a 10K.

Hannah goes to the CF clinic Wednesday. She is coughing so I hope she is not growing anything in her culture at least nothing more than her usual h-flu and staph. It is interesting when staph doesn't scare you anymore. The reality of having a child with CF.

Pump

2009-02-25T09:48:00.000-08:00

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

2009-02-21T15:13:00.000-08:00

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

2009-02-19T06:29:00.000-08:00

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

2009-02-12T16:53:00.000-08:00

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

2009-02-08T11:06:00.000-08:00

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!

2009-02-06T10:34:00.000-08:00

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

2009-02-04T08:56:00.000-08:00

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

2009-02-03T07:00:00.000-08:00

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.