Holiday Blahs & Napping

Far Away Grandmas

These are the grandmothers that don't live in town. This was a special holiday for me because it was the first time I got to meet my Great Grandma Jackson and Great Grandma Good.

Coming Soon To A Christmas Card Near You

My Daddy Loves This Picture

Thankful For Family

Ha Ha Ha...Blue who?

Beanie scores again....14-3 Buckeyes

Wells scores and it is 7-3 Buckeyes

My First Ohio State-Michigan Game...read my shirt.

Growing Up

Toothers

I grew some teeth this past week. The picture is fuzzy, but if you look close, you'll see them !

QT with my PT

I had my monthly CF appointment today. I spent an hour with Katie, my physical therapist. I weigh in at 12lbs 11oz and I am 23 1/2in long. This is me in my BUMPO seat. It helps me sit up.....but I look really silly in it. Should have invented this myself, this piece of foam-like molded plastic thing cost $40.

Licks/Kisses from Joey

.....must she bother me while I am sleeping?????

Happy Halloween

This outfit did not last long. It isn't very fashionable...the green felt thing around my neck was unacceptable.

Grandma Lyla

Grandma Lyla hung out with me tonight while the family went to Boo at the Zoo. It's way too chilly for me to be hanging out after dark.

Smiling with Mom

Here's some of that..."Who put me down????????" "How dare you!!!!!"

Where Have I Been?

Long time, no see, eh?

Let's catch up......Mom went back to work. School started for big brother Tyler. Great Grandma Rosie spends her days with me. Mom comes home and does her mom stuff and then falls asleep. Blogger gave us some issues and couldn't find our account. I promise to keep everyone more up-to-date. Here's a picture of me...with a big cheesy smile. I smile, I babble, I scream at people (but in a conversational tone, of course).

looking around

eating my arm

holding up my cheeks....

Dr. Visits

I thought my mother was crazy. For the last three days, she kept driving me back to Children's Hospital. Monday was bloodwork at the lab, Tuesday was Dr. Crow, and Wednesday was my CF appt. You'd think that doing all of this in one day would be easier, but it is actually the opposite. The lab never gets the blood processed in time, appointments are always behind, and I get hungry and cranky.

The good news....
Dr. Crow likes my progress. He is lowering my IV fluids from 12 hrs/day to 10 hrs/day. Mom and Dad run my fluids from 9p-7a.

The CF drs want Mom to "try" to give me my medicine by mouth with applesauce. This will surely please Great Grandma Rosie. Rosie does not like to even think about putting it in my feeding tube.

Everyone said to keep up the good work.

Other Blogs

I made my buddy's blog today. "Uncle Rob" keeps tabs on me and has kept his circle of friends updated on my whereabouts. He took this picture of me at the beginning of the week. Check out Uncle Rob at http://robthomas.blogspot.com

My First Bath

Lots to talk about...

I am 7 months old today!!!! On the medical end of things...I launched a personal recall on the broviac system. I never really liked them to begin with and those silly doctors just kept putting them back in me. Did a drive by through the hospital and picked up a med. port for myself. The parents think that it is more "Timmy proof" meaning it might keep me out of the hospital. With this device, if I decide to pull it out, they just hook it right back up. The majority of the med. port is implanted under the skin and all the parents need to do is access the device. Sounds kinda complicated, huh? Don't worry....they can handle it.

Also, Dr. Crow has dropped my TPN IV fluids down to 6 days a week. I will be off of it from Monday mornings until Tues evenings!!! During this time, there is nothing on the surface of the skin to pull on...no tubes, no dressings, no nothing. It's Monday afternoon right now and I am a real baby with no parts and pieces to worry about.

THE BIG NEWS.......I'm getting a bath tonight. A real bath. Submerge and soak my butt in the water bath. In my 7 months, this will be my first real baby bath....stay tuned for some pictures to come!

This picture is dedicated to Kristin at the NICU...wanted to show her that my hair is growing back.

A Milestone

D
O

Y
O
U

S
E
E

I
T
?
Mom caught me smiling on Sunday. I haven't smiled for my parents until this point. Call me a softie....but I couldn't help it...there I was snuggling with Dad and Mom had to get all cutesie on me...and I lost all control....and smiled. Don't tell anyone, it'll ruin my image.

Been doing some thinking....

...and can't decide what to blog about. How is everyone?

Sleeping & Growing

I spent the day working on those lbs.

A Good Day

I impressed Dr. Crow today. I'm not the yellow man I used to be. I gained weight despite my hospital visits. I've got good poop (sparing you the gross details that my mom would gladly describe if you asked her). Dr. Crow cut back my TPN from 16 hrs/day to 14 hrs/day and he decreased the volume that I am getting too. He increased my bottles to 50ml each. More food, less IV liquid stuff (definition for TPN for my non-medical fans out there). I have always liked Dr. Crow. He and I will go fishing one day. Rock on Dr. Crow.

I also stopped by the old NICU stomping grounds today while at Children's. I waved, shook hands, and kissed lots of nurses. Good news that Michael was released from NICU jail on July 3rd. Micheal was my short gut neighbor back in room 9. For those of you that thought that I was in the NICU a long time, this kid was there a month before me and a little over a month after I left. Run Mikey, and don't turn back !

Picture Note: this is an old NICU picture....but fitting for the occasion.

Hanging Out

Hey There!
Been doing what all good babies should be doing in the summer. Sitting on the porch swing that Dad put on the front porch. Chillin' in front of the tv. Drinking the full amount of my bottles. I noticed that there are fun things to look at on my swing. Cooing, gooing, and babbling to Grandma Lyla. Tuesday was an especially great day....Mom says that its worth blogging about because my cranky days far out number my good ones. I hope that you are enjoying your summer too!

Haircuts by Kristin

I hope Kristin didn't think that I would leave her out of my blog. Kristin was the third primary nurse that jumped on board at the end of my NICU adventure. She is a night owl and was with me from 7pm-7am. Most nights, I slept through the night, but there were those few times that I stirred up the action for her. Case in point here....my haircut. In the NICU, when nurses cannot find a vein on a fat baby bodypart, they shave your hair away and take blood from a vein in your head. Kristin felt very bad for doing this and I thought I'd give her a hard time about it now. So, Kristin....love you dearly....but don't quit your nursing job. You make a horrible stylist.

Textbook Definition

My mother, who is a teacher, would tell you that being able to recite a textbook definition won't impress her. She would rather you understand the definition and relate it to the subject at hand. Let's talk medicine....
How many of you are a textbook case? How many of you are the photocopy of the person in the next room? It took 13 days for the resident on the 7th floor to actually admit that I am not a textbook definition. DUH. I am Timmy. I am unique, with special qualities that make me...me. I will frustrate you, amaze you, shock you, and melt your heart. Advice to doctors...stop trying to look me up in a book. Take your medicial book and apply it....because I will keep you on your toes.

Sucking Snot

Snot sucks.

It landed me in the hospital again. I am congested and deflated a portion of my left lung. I hate snot. My mother hates snot. This concludes my blog post for today.

Bah humbug.

She Caught Me

Mom caught me actually sleeping in my crib. This is not something that I will often agree to do. We haven't slept much lately....which explains the lack of blogging.

It's good to be home.

Two of the PRIMARY Reasons for My Success

I'd like to introduce you to two of the many angels at Children's Hospital. These two ladies have been with me through thick and thin. They have readied me for surgery, sat with my mom and dad, handed Mom lots of tissues, gave Dad a pat on the back, and helped me recover from some big obstacles. They have sucked boogers out of my nose, washed my poopy butt, sat up with me all night long when I wouldn't sleep, and sang to me. They have been great advocates and a source of strength that my parents needed during the rough times.

Ladies and gentlemen, I present to you....Kathy and Mary Lou.

Define High Maintenance

My parents just spent an entire 24 hour day with me at the hospital. They had to prove that they could manage my care before bringing me home on Tuesday.

A day with me includes:
1. Watching the central line dressing on my chest and replacing when necessary.
2. Connecting and disconnecting the IV fluids that will run at night.
3. Feeding me four bottle cocktails a day. (formula plus extras) Oh, I prefer a formula that cannot be purchased in stores...it is ordered through the pharmacy. I like to scream throughout the process to add some extra stress.
4. Every 3-4 hours refilling my formula pump for my feedings at night while I am sleeping. This goes into my feeding tube.
5. Administering medications every three hours around the clock.
6. Administering the enzymes that I need for digestion. They are given with applesauce through my feeding tube in my belly.
7. PD, which is postural drainage. They vibrate my lungs to clear away any mucus I have built up. This is like a rough massage and I like it.
8. Normal baby things, like a bath, weights and measurements, playing with toys, etc.
9. Watching me sleep.

Yes, the day ended with an exhausted mother and father. I threw up on both of them, just for good measure.....trying to break them in right, ya know?

I may not be a celebrity just yet, but I am pretty high maintenance.

....but I am worth it.

An Introduction.....

Hi Everyone ! My name is Timmy. I'd like to welcome you to read about my life and my family. Please stop back often and keep in touch !

Hugs and kisses !