T-Minus 7 days till.....

This crazy man pulls off the most amazing fundraiser ever. Watch the link to the right of this page. In 7 days you can click there to access the link to watch the radiothon live via webcast. I want to hear from you on Sunday Feb 8th. I will be there between 7-9am. Yes, it's freaking early. Get up and listen and watch.

This is what mom and I do on Friday nights.

What a week. Doctor appointments. Snow days. IV removals. Baths. It's all exhausting. Whew !

FREE!!!!

Free At Last! I apologize for the delay in posts. Been a crazy week in my world. After a weekend of no IV fluid, I have felt great! I have been eating better, showing signs of being hungry at meal times, not giving mom and dad such a hard time about it, eating faster, and almost doubling the amount I'm eating, all just over this weekend! Tuesday Dr. Crow removed my Broviac, which leaves me IV free for the first time in my life! If I can keep up this eating thing, and get enough fluids, pass Dr. Crow's weigh-ins, I can stay IV free!

Wednesday, Mom, Dad, and I spent the almost the whole day at Children's. It was my annual CF appointment. It makes for a long day, but I have to see every Doc, Social Worker, Nurse, Nutritionist, and Therapist in the CF department. They all are very happy with how I have been growing! They are all very excited to see me IV free as well!

The BEST thing about being IV free, is the fact I can actually have real, big-boy, baths now! Mom bought be a bath chair, and I get to sit right in the big tub! I LOVE the water!



Gracie was my lifeguard!


Gettin all wet!


Dad is washing me up!


Mom is drying me off!


Squeeky clean!!!

Nothing is coming out...

When is a bad thing a good thing? When it means I can get rid of this IV line in my leg. My line has finally clotted off after almost 17 months of having it in! 17 months with one line is close to a miracle, considering I went through about 1 a month for 4 or 5 months earlier in my life. Dr. Crow, my surgeon, wanted to put one back in right away, but mom bargained with him, and we are going to do a trial run without overnight fluids! If I can manage well over the weekend, there is a possibility we can take it out completely sometime next week. And......if that goes well, there is even a chance I could be done with my fluids all together. I don't want to jump any guns here...but all you out there in Blogger land, keep your fingers crossed for me. Updates to follow...

Why upside-down you ask? Well, because Dad thinks that it is fun. Mom says that tomorrow the country could get turned right backside up again. Tomorrow this country is making history, electing the first non-white president. To the readers, this is probably a big deal. To me, the youngest generation, this is going to be the most commonly accepted ideal and we will look back and wonder why the first 40-some presidents were all white men. My generation will be accepting of change and we will embrace it. (Note: this entry is sponsored by my mother, not my father)


Today's adventures: Mom and I started our day by heading to the hospital for an Xray of my hand. My endo dr wants to look at bone growth size since being on the growth hormone. This tells my body to "kick it in gear" a little more than the average little 2 yr old. It also equates to my mother trimming my nails and cutting my hair more often than any normal person should....that stuff makes everything grow faster! We attempted to do some bloodwork for Dr. Crow, annual CF appt, and Endo, but the two hour wait at the outpatient lab made us turn around and go home. We ate lunch, napped, and back out again for another appt...but for Mom this time. It was weird going to an appt that wasn't mine. Mom's blood pressure checked out just fine and she's gonna live! Afterward, we headed for home to wrap up the evening. Note: do not go to the hospital for outpatient work on a day when school is closed. Ugh, people traffic.

ugh...

Is it spring time yet? I don't mind staying in and snuggling with mom and dad, but gezzz, I wish the snow would stop! I'm not a fan of my snow suit my parents cram me into going to and from school! I want some warm weather and some Tribe baseball!

Back to it!

After a short holiday break, well longer because my birthday, I'm back to trying to post on a more daily schedule. I had my 2 year old check up at the regular doctors today. I heard Dad joke that it was just the regular doc, no fancy specialist or weird-o doc this time! Things are going very well for me. I am as healthy as they could expect a guy like me could be! Nothing much else exciting to report, which is kinda the way we like it around here! I'm back to school now, and I'm enjoying it more than ever!

Happy Birthday To Me !

In my birthday hat...


The poster that Mom put on the "Shining Stars" bulletin board in the NICU. Look carefully for the Buckeye Guy...that's how little I was at birth !


My cake....thanks MOM !


Blowing out my candle with Tyler's help.


Sneaking a taste of icing.



Dad's favs...



Opening some presents...
Tyler is reading his card to me.
That shirt says "I'm a really big deal." How appropriate.

Children's Hospital Radiothon

The "Have a Heart, Do Your Part" Radiothon for Akron Children's Hospital is officially one month away. While my mom's school and dad's work are holding their own fundraisers, I invite any of you to become change bandits. Click on this link to find out more info about it. It's simple and it's for the greatest cause in the world...children. 100% of the money stays here at the hospital. The radiothon is Feb 6th-8th. They broadcast the fundraiser on the web and you can see me there on Sunday morning from 7-9 am. My parents became involved in the radiothon in 2007 when I was still in the NICU. In 08, I made my first "baby" appearance and this year I will bring some 2 yr old attitude to the event. More details and reminders to come closer to the events.

T-Minus......

5 days until my birthday !

It's Santa !

Here I am with Cousin Joey trying to tell Santa that I have just a few simple requests for Christmas.

Dear Santa,
I have been a good boy this year.
I haven't been admitted to the hospital in 2008.
I haven't been sick in 2008.
I haven't needed a new IV line in 2008.
For Christmas, I would like to have some snot-free days so I can eat better. I would like to get a real bath, complete with bubbles. I would like to take a 2 hour drive to see Grandma and Grandpa. I would like to crawl/walk across the floor to chase/get away from the cats. I would like to play with Tyler. I would like to have a healthy 2009.
Love, Timmy

More Holiday Pics from Grandma Pat's Camera

Grandma Pat

Grandpa Rich