Baseball, softball, CF, Dad and Kansas

I can't believe summer is almost over.  So much has happened.  Hannah's softball team won one game maybe, Tommy played one last season with the Cobras and with an MYO team.  He threw his first no hitter, he had a girl friend then he didn't, then he did and now he doesn't (same girl).  We traveled to South Bend Indiana, and all over the Tri-state watching Tommy play sometimes driving an hour each way.  I tried to really just enjoy watching him.

Tommy along with 836 other kids graduated from Mason on June 2 at the Cintas Center.  Hannah says there are 990 8th graders in her class and they will need Great American Ballpark for her graduation. LOL
I cried a lot at Tommy's graduation.  My little boy is all grown up.

My dad has been really struggling with congestive heart failure and we almost lost him a time or two but right now he seems to be doing much better he sounds much better (perkier). I know he is 80 but I'm not ready to let go just yet.

Hannah has had healthier summers.  She had sinus surgery in July and hasn't been quite the same since.
Lots of coughing, stuffy nose.  She grew a fungus from the sinus culture took meds for that then went right into a coughing marathon.  She got a new insulin pump on 8/26 and we went to the CF clinic later in the day for a sick visit.  The Doc said it was walking pneumonia.  They did a throat culture and she is growing pseudomonas fluorescens and p. putida what the heck is this stuff! I'm getting ready to bleach my entire house.  She is on antibiotics but I can't talk to anyone until Tuesday.  I hate CF!!!!!!!

Finally we drove out to Kansas for Tommy to start school.  What an incredibly long boring drive.  He is happy to be playing baseball but really getting a reality check that money doesn't just appear in your bank account when something happens.  Poor kid.  He already found a job.  I am so proud of him!

Hannah, hamsters, coaches and CF

During the last few days one of Hannah's assistant softball coaches passed away suddenly at the age of 44.  Her other hamster died too but she immediately started plotting ways to get another one.

A trip to the Psychologist today revealed something I had been suspecting for months.  Hannah has realized the battle that is cystic fibrosis.  Up until recently she didn't seem too concerned about the severity of her illness; after all she is extremely healthy.  She has started paying attention to lung function and when it got to 109 after being as high as 132 I think a light went on in her head "this is pretty serious stuff I'm dealing with.  Plus she has started to interact via social media with other kids and families with CF in their lives.  She is seeing how this rotten disease affects each CF patient differently.  She "Skyped" a 17 year old in Florida that weighs 80 pounds and is on the transplant list. Hannah on the other hand has perfect lungs for a 12 year old with CF and weight in the 90th percentile.

I think she understands that all that could change.  A nasty lung infection could bring her lung function down in a hurry.  Her diabetes could affect her weight.  She is not a normal 12 year old. She internalizes her feelings by staying in her room or covering them up with silliness.

What to do?  This is heavy stuff for us.  The psychologist suggests that she has someone available anytime to talk to when bad thoughts of CF enter her head or she has questions or just wants to talk. I will stop whatever I am doing anytime to talk to her.

CF stinks.  There is no break from it, it doesn't go into remission, it's there just waiting to get worse and suck your breath away.  Anytime she could get one of the deadly bacteria that takes so many so young.  And you can't stop it from happening you don't know where these super bugs come from.  They can be in the dirt that she walks in, stagnant water, and the air she breathes.

You can't put your child in a bubble.  She needs to live her life and not worry about getting sick.  We will just deal with it if it happens but I have faith it won't.

Love the Reds

Our family is crazy about the Cincinnati Reds.  We watch every game we can.  I wish we could afford to go to more games but apparently I am unemployable.

If I were younger I would be stalking Joey Votto.  He is one fine male specimen.

Twitter is quite entertaining when the games are on.  Everyone knows how to manage the team better than Dusty and @DallasLatos is crazy nervous when Mat is pitching.  It is cool to see the players comments that tweet.  We'll be watching and tweeting tomorrow.

RIP Mistletoe the guinea pig

I knew the guinea pig wasn't feeling her best so I made an appointment for the vet for today.  Well I found her dead in her little hut at 7:30.  Hannah stayed home to go with her to the vet.  Yesterday she was nibbling an orange out of my hand so I thought she was OK to go to the vet today.  I'm sure if we had taken her yesterday it wouldn't have made any difference. 

Hannah seemed to take it better than I did.  I was more heartbroken for Hannah than myself.  Mistletoe was very cute and squealed a lot.  I told Hannah that pets are here for us to love and take care of and give them a loving home. 

It is in the basement to stay cool until Tommy can bury her.  The ground is soft so it shouldn't take to much trouble to dig the hole.

In the last 3 months, we have lost one of two hamsters and one guinea pig.  We still have one very old hamster and one baby gerbil and Hannah and Tommy are getting it a companion.  Poor thing, it doesn't know it is coming here to die.  It hurts anytime a pet dies even if they are cute little rodents.

Sinus Surgery again

Hannah is headed for sinus surgery #5.  Her first surgery was the first playoff game between the Reds and Philadelphia, you know the no hitter in 2010.  I will never forget her first surgery because of that little baseball fact.  Children's didn't carry whatever channel it was so my brother and I watched ESPN and kept seeing the updates scroll across the screen.  Poor Tommy was so disturbed by the no hitter.

It's a two hour surgery so you have plenty of time to sit and worry or eat in the cafeteria you know like chocolate and stuff :) 

# 5 and I'm still going to worry about it.  Her CT scan was pretty awful this time and she just had surgery in October.  CF stinks I'm trying not to say sucks anymore or I swear to God.  Wish me luck.

Let's see #1 was October 6, 2010, #2 was February 13, 2012, #3 was February 27, 2012 he couldn't get into one side to get it cleaned out opening was too small, #4 October 24, 2012 and sometime in June after school will be #5.  Sad thing is she has been having severe sinus pain off and on since March.

What a strong, amazing wonderful little girl!  Never complains just does her stuff and keeps on going.

Irons and Wrinkles

On the way home from Easter services, Hannah asks from the backseat "If an iron takes wrinkles out, will it work on the wrinkles on your face?" or something close to that.  Anyway, I said I wish. She is so funny.  She says stuff like that all the time.  She gives me so much joy.  I can't imagine life without her.  She is going to be heart broken when her Tommy leaves for college in the fall.

Our entire family, uncle Marvin included dedicate ourselves to keeping that child healthy.  CF stinks and we see how it is affects her more and more everyday.  I know she is amazingly healthy for CF patients but I've seen little changes like last night after softball she said she started coughing and couldn't stop almost threw up and she can't catch her breathe when that happens.  Shortness of breath is the most noticeable change along with fatigue.  She was so tired after practice.  She often comes home after school and sleeps till dinner.

I hate this stupid disease. 

Diabetes Doc

Hannah went to the endocrinologist today.  Her blood sugars are much improved.  Changed her insulin doses around a little because she is having lows at certain times of day.  Her weight is steady around 145 and she is 5' 3.25". My amazing CF child with weight in the 95th percentile and height in the 70s.

I love this picture, the sun was in her eyes and then she fell asleep.

I have a job interview and I hate google sites

I have pictures on the website that just randomly disappear.  The header was gone today.  What the heck?
Happens all the time.  Then there are the blank areas I can't get rid of and can't find anything in help that tells me how.  I only looked at the home page today I'm afraid to look at the other pages.

Finally, I have a job interview.  I hope I don't mess it up.  My self-esteem is gone, my confidence is gone and I can't remember anything 2 seconds after I see or hear it.  I think about all the people I helped get a job or get promoted and only a couple have given me leads in two years.  Vendors I had treat me like I have the plague.  I will admit that I was depressed for months and wouldn't talk to anyone or go anywhere but come on guys give me a break.  I hope that all my deserters are never in this position I wouldn't wish the last 22 months of my life on anyone.  Well maybe 4 men, GS, JP 1 & 2, and DS.  What goes around comes around.  God has a way of taking care of things.

Going to see my dad this weekend hope the snow holds off.

Wow

I know I said I was going to bed.  Since I have been living in a fog for two years, I never checked the stats on our blog.  Wow we get many page views.  I need to write more for your entertainment!  And info on Hannah.

Did I just hear Hannah cough

I wish I could just not notice every single time Hannah coughs.  Drives me crazy. I stop whatever I am doing to listen and then the little voice in my head starts to ask: is this just a normal cough that normal people get or is it the start of some nasty CF cough an infection, more antibiotics, hospital all the stuff going through my head.  By the way, that is the only voice I hear in my head.  Well I just heard that cough and she is really tired AND she says her belly hurts.  Hopefully, it is nothing.

I have been in a really bad mood today.  Rain maybe.  No job.  I don't know.  I guess I will just go to bed.

Unemployment Stinks

I've been unemployed since May 2011.  I have no respect for the people I once worked for.  Especially one that claimed to be my friend.  I am not consumed with hatred anymore but I would love to see him just once more.

Anyway, things are really, really tough right now.  I made my first trip to the food bank a very humbling experience, especially for Tommy.  We are two months behind on our house payment.  Did I mention I hate Bank of America.  You are threatening foreclosure on someone's house but you won't return their phone calls.  My unemployment ran out in December.  All those years all that experience means nothing.

I pray I find something soon.  I decided God was mad at me so I've been going to Church so He can tell me to my face :)  I love Church not sure why I stopped going.  I'm sure depression had something to do with that.