Wednesday, May 15, 2013

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.

Thursday, May 9, 2013

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.