The Many Adventures of Todd!

It has been a whirlwind of activity since we got home! Phone call after phone call. Delivery after delivery. Home visits. Supply buying. Organizing. Shuffling to appointments.

I'm pretty sure I forgot to eat yesterday. Oops. (yes I know I have to take care of myself too...I prepared better today)

Todd is doing great! He sleeps through the night except when he needs to be changed. He wakes up in the morning and just watches tv until we get up. He gets medications at midnight, 2am, 5am, 6am, and 8am. I was dreading having to get up and thought how will I have the energy... it's not as bad as I expected. I'm much happier at home... doing these things myself. I don't have someone barging in and waking me up every 5 minutes.

He's making leaps and bounds! He is starting to pick up and hold up his head so much better. He also is getting some trunk control back (holding his back and body up). He responds so much better to stretching and exercising with me at home. He stays awake for it. He doesn't cry as easily. I think it's safe to say we've settled in for the most part and are all happy to be home! My kitty cat included!

The hardest part about this is transportation. Oh. My. Gosh. We got the okay to leave rehab. I packed the car. Installed the car seat. I was assured that the wheel chair would fit in my car. I have/had a Ford Edge. No problem for a wheel chair, right? WRONG! I pull up to the hospital. Get Todd in the car seat then attempt to place the chair in the back. I almost had a complete meltdown. It took everything in me not to start crying and just sit in the middle of the parking lot and pout. WE WERE READY TO GO! Todd was in the car! How can this be happening? With some maneuvering, extensive disassembly, and a determined Mom and nurse we got it in. Thank God she came down with me. As everyone knows... check the diaper before you leave. Well, I did. It was dry.... 30 minutes into the drive, it was not. Not only was this a wet diaper, it completely soaked his pants and the car seat.... Let me remind you that I am ALONE, in a packed car full of stuff...  AND in the middle of NO WHERE! Todd is very reactive to when he goes to the bathroom. He does not like having a dirty diaper and he sure as heck let me know. I had no way to change him. I had no where I could lay him down. He's too heavy for a changing table in the bathroom of a restaurant or gas station. What do you do? I couldn't change him. He would just have to wait... (to keep him from screaming) I had to make fart noises the whole way home. I sang the ABCs in a fart voice, I sang Twinkle Twinkle Little Star... let me also remind you that we had an hour left in our drive.... Oh, the adventures of Todd.

This was a major fail.

It took a while to disassemble the wheel chair... it took a while to reassemble it. This is not going to work. We can't do this in the rain, in the heat.... not to mention what if he pees again? I gotta be able to lay him down somewhere. To the dealership we go! So I had to buy a new car. I love my Edge... was planning on keeping it, but the world had other plans. Probably the fastest car buying experience ever! Thank you Dad for everything you did on that by the way! :) In the middle of the process I had to run home and grab Todd so Brian could go to work since he is doing overnights at the moment. (This is where the fun begins) Loaded
him up in the Edge, wheel chair and all and headed for the dealership. All was fine doing the last little bit of stuff. Couple signatures... what ever. We go to transfer the car seat to the new car (a Ford Flex by the way - & thank you to everyone who has donated money! Your donations are what enabled me to be able to do this - otherwise I would have been up sh!t creek ) Anyway... we get the car seat in.... I start to unbuckle Todd from the wheelchair.... projectile vomiting.... EVERYWHERE - out of nowhere! These poor guys - a car salesman and the finance guy are the only ones who were with me. Excellent customer service I do have to say. They helped me clean up my child and the wheel chair... vomit and all. Oh, the adventures of Todd!

We had to go back to Jacksonville today for an appointment to check on Todd's AICD. Everything checked out, hasn't had to fire, capturing well, his heart seems happy! If you can imagine the amount of 'stuff' I have to tote with me for him. Medications - since he gets some every 2-3 hours... of course the ones today were the ones that had to be refrigerated so I had a lunch box with ice packs. Diapers, wipes, change of clothes. 3 ring binder of all his medical information that I have had to put together. The transportable suction canister and machine. Oh, did I mention he threw up on this trip as well? We've determined that a) he doesn't need to be given meds and then thrown in the car b) I had to buy a car dvd player because he stares out the window and makes himself nauseous. (again, all thanks to your donations!)

This is definitely a huge learning experience. Lots of trial and error. But, the whole thing is an adventure and one I'm not alone on! I have Todd! & a wonderful support system! All of you with your donations and encouragement. My family. My fiance.

Until next time...