Will and the Terrible, Horrible, No Good, Very Bad (9) Days

(Adapted from the short story, "Alexander and the Terrible, Horrible, No Good, Very Bad Day")
By: Will



9 days ago, I woke up only to be taken to a hospital where I was put under anesthesia & had surgery! They even tried 10 times to get an iv into me... unsuccessfully! Then, when I woke up, my mommy and daddy were nowhere to be found. Then, I couldn't even eat for 24 hours! It was a horrible, terrible, no good, very bad day.

8 days ago, I had to go on a very long road trip with my Mommy & Daddy... & they made me stay in the carseat even when I wanted to crawl around. And my mommy wouldn't even let me crawl on the floor in the gas stations! It was a horrible, terrible, no good, very bad day!

(Then I had some really fun days with my family. They even let me swim in September!)

3 days ago, my mommy noticed my incision was still white. She called my surgeon's office in Dallas & they told her to get me into the doctor asap. Oh no... I could tell it was going to be a horrible, terrible, no good, very bad day.

Yesterday, my mommy took me to my pediatrician to have my incision checked. Sure enough, it's infected. Which means I get to drink "magic mouth wash" (a compound of 4 ingredients) 4 times a day. It makes my mouth numb & feel funny. I also was told I have an ear infection. Finally, my doctor told my mommy he was not pleased with the surgery... apparently they didn't complete the procedure. So- they mentioned to me that I will need more surgery. This was a terrible, horrible, no good, very bad day.

Today, my mommy took me to the pediatrician again for my 12 month well check. (BTW, my height is 28 inches without my zancos & 33 1/2 inches with zancos; weight is 22 lbs without zancos & 24 lbs with zancos.) I now have an ear infection in both ears... awesome! And, they told my mom I'm teething (when have I not been teething since 4 months old???) The appointment lasted during part of my usual nap time, so I fell asleep on my mommy. Then, they woke me up after only sleeping for 15 minutes & gave me 3 shots in my legs! OUCH! It was terrible, horrible, no good, very bad!

Then, while cuddling with my mommy, the doctor gave her some good news & some bad news. The good news is that my mommy has been researching some possiblities for treatments for me. She recently sent her research materials to my pediatrician to get his perspective. She found a very promising set of surgeons on the east coast who have had success practicing some cutting edge stuff. It's too complicated for me to understand right now but it sounded like the pediatrican felt like I would be a good candidate for this & he's going to refer us to these doctors. My mommy said something about a "toe drive" instead of a blood drive. I think she secretly wants to give me her bones so that a part of her is always with me... you know how attached she is to me! She almost never leaves me alone! She said something about even if this doesn't work, she & my daddy want to be sure that I know that they researched & tried every possible option for me.

Then, the bad news. Since I was born, my mommy has been keeping a watch out for some possible side affects of my syndrome. Until now, they haven't been able to test for these. There is some indication that one of them is a good possibility for me. The doctor suggested my mommy drive me to a lab to get blood drawn so we could test for this. Oh no - this was not good news. I just had 3 shots & screamed my head off. I hate giving blood (I did this about 4 times a day while in the NICU after birth.) Already, it was a terrible, horrible, no good, very bad day.

We got to the lab & I think they should hire me on a part time basis there (around my nap schedule of course.) I was the official greeter of the crowded waiting room. I greeted every single person that walked in with a hi & a wave. I also waved bye-bye to everyone who left. Mommy said something about the floor being yucky so she wouldn't put me down. Therefore, I entertained everyone with my toy microphone mommy brought along. I can sing very loud on the microphone. I know the other patients appreciated my self-composed musical ensemble. They really should pay me for this stuff.

Anyway, before I was done performing & greeting, I was whisked off to give blood. It took 3 people holding me down & they were unable to draw blood. (I have very tiny, deep veins. People who specialize in little people at Children's Medical Center in Dallas tried 10 times to put in an iv last week & were unsuccessful!) So, they sent me away for 45 minutes to get fluid in me to help build up my veins. We returned & they tried my other arm. My mommy tried to stay upbeat for me but they eventually wore her down too. It was unsuccessful. Just as I was going down for my nap, I overheard my mommy on the phone trying to find out if the hospital nurses who work with babies all the time in the nursery could try. Oh no, not again! I already have 5 bandaids on!

My mommy is trying really hard lately not to cry in front of me. Sometimes, though, on difficult days like today, I catch her crying while she drives or I feel her tears on my head when she is rocking me. I think it has been a terrible, horrible, no good, very bad (9) days for Mommy & Daddy too.

This has been a terrible, horrible, no good, very bad day. But, mommy promised me a homemade watermelon popsicle after my nap. Maybe the day will turn out okay after all.