I dedicate this journey to all who followed me on my blog.
Thank you Mommy and Daddy for loving me more than humanly possible. Make sure Clay and Olive remember their big brother as they get older.

I was told I had no chance, maybe 30 days tops. I gave them 1,317.

I truly believe everybody is put on this earth with a purpose. Mine was to inspire...


Jetty Townsend Fleetwood
6/18/2009 - 1/26/2013

So far, 2013 has really been a struggle. I am not doing very well and poor Mommy is really getting concerned. Diane, my Hospice Nurse, is now checking on me daily to make sure I am comfortable. Mommy gives me morphine when I am having breathing issues which really seems to help. I am requiring oxygen at a very high level and my heart rate is consistently elevated. I am retaining fluids too but Mommy helps me out with that by giving me Lasix. I am very weak and rarely open my eyes. This all started about 2 weeks ago but really got worse on Friday.
To top it off, I have constant congestion issues and am having trouble keeping my nasal passages clear.
On another note, how about them Ravens! Hopefully I am back to my old self again to watch the big game in 2 weeks! Daddy promised me wings and beer. Well maybe not the beer but he definitely said I could have some wings!

Happy New Year!

As I look back on 2012, I realize that it flew by so fast. This time last year I was just starting to get used to that whiny little baby that was 4 weeks old. Now she likes to climb on me and give me kisses. However, her kisses also come with head-buts and yanks on my oxygen tube. I can do without the kisses!
The spring winter was nice but Spring was a different story. I once again got flown to Hopkins due to Pneumonia and Pulmonary Edema. I was there for almost all of April and it looked like I was a gonner. But what they didn't realize is that all I needed was to get out of that place! How do you expect someone to get better when they constantly probe you?
Shortly after returning home, I was baptized at Mee-Ma and Bobbob's house in front of tons of family. A couple months later I turned 3!
Throughout the summer, my respiratory issues were the main concern for mommy and daddy as i seem to like fluid in my airways. I get weekly visits from my ladies... Diane, my Hospice Nurse, and Kerry and Kim, my OT and PT ladies from Infants and Toddlers.
I still have Nurse Melissa who takes care of me during the week days and I have new night nurses in my life... Barbara, Pam and Terri. They all take wonderful care of me!
Clay is starting to help me out at times without causing much pain. He runs to me with a cloth when he hears me cough to catch any slobber that might come up. (Daddy won't let him work the suction machine, which he has tried). He also is good at alerting them if I am in distress. I think he is going to be a great little brother who will have my back. Its a bit too early to figure Olive out.
Thanksgiving was great and so was Christmas. I received several wonderful outfits and a nice warm scarf that can go in the microwave!
My seizures are different every day. My breathing is awful and from what we've learned, is always going to be a struggle. However, I have not had to use the Bpap machine since I've been home from the hospital! Daddy actually returned it to the company just last week. I was so happy because I would get chills everytime I saw it sitting in the corner of my room. I hav a scar on my nose from that blasted thing.
So with all the chaos that goes on in my house with a typical family of 5, nurses, Barney, etc.... there is no place like HOME!
Thanks for all who followed me through 2012 and bring on 2013!!!!

Merry Christmas!

We are hosting Thanksgiving this year because Daddy is to lazy to travel. Since we are expecting 25 people he had a tent put up on the back of the house which is where we will be eating. I can't wait for some good stuffing and gravy which is one of my favorites... and of course the pumpkin pie!

Diane, my hospice nurse, came to see me today because I haven't been doing really well. I can barely open my eyes and am needing a lot of oxygen support. She seems to think its neurologic and nothing viral or bacterial. Mommy is going to cut back on some of my seizure meds to see if that gives me some more energy. I am too tired to even cough or sneeze, which makes it harder to breathe. I also have been very cold lately. My temperature won't even register on a thermometer even after heated blankets, fireplace, and snuggling with Daddy under blankets.  Poor Daddy gets all hot and sweaty and I stay cold. My darn thermostat is broken and hopefully it starts working here soon. Mommy has me wearing a warm hat all the time now and it messes up my hair.
Happy Thanksgiving everyone. Hopefull my next post isn't a video of daddy catching himself on fire while deep-frying a turkey!

 

Hi everyone. I have had a good fall so far. We went to Milburn Orchards and I got to watch Clay be silly with the animals and on the rides. Halloween was a good time too. Daddy and Mommy took me trick or treating in the golfcart. It was very cold but worth it! We survived Hurricane Sandy without much damage. Daddy borrowed our neighbor's generator so my oxygen machine could still run when we lost electricity... which happens in every storm.
My breathing is still weak and I have trouble with congestion. My seizures however have been excellent! We have a fun Thanksgiving planned for this year with lots of family coming to our house. I can't wait and it's so nice not having to travel... Those oxygen tanks get heavy and Olive likes to tug on my cord in the car. I hope everyone is having as nice a Fall as I am.

Trying on my mask to see if it fit.

 

My Halloween ride.

 

I am a green super hero. You can't really see it very clear but I am wearing a green bow tie and cape.

 

I wish Daddy would get a bigger truck. I need some separation from these two...

 

Hanging out with Mommy on the couch after Clay and Olive went to bed. This is my favorite time of the day because I get all the attention!

 

 

Milburn Orchards, Elkton MD.

 

 

Playing in the leaves!

 

 

Snoozin

 

Story time with Daddy.

Listening to my evening jams

I have been doing VERY well here recently. My seizures are minimal (10-15 a day) and I am very comfortable. I sleep a lot though which isn't very exciting. And when I am awake, sometimes I just "play possum" like in that Geico commercial to keep from drawing Clay and Olive's attention!
My breathing is still good thanks to the oxygen support but the tube irritates my ears and neck and is also an attractive toy for Olive to tug on... another reason I play possum. The summer is almost over which I am excited about because it is tough for me to get outside in this heat that we have had. I get overheated easily in the summer (Daddy says my thermostat is broken) and I get very cold in the winter so the fall is a perfect time of year for me to enjoy the outdoors. Not to mention those skeeters that eat me up. I am a sitting duck out there for them. Clay gets eaten alive every single night because he is a dum dum who likes to run around in the yard with his shirt off and doesn't seem to care.
Thanks for checking in on me and bye bye for now!

Trying to get all these squirts to pose for a picture with me was impossible! I can always count on Olive but these other clowns are a different story.



Aunt Nancy came to visit me!

Bethany Beach week!

Jetty turns 3!

I slept through my entire party but I hear it was a great time. A bunch of family came to see me with presents, Daddy grilled burgers and hot dogs, Poppop brought crabs, and Mommy made me a cake. Maybe next year they will wake me up!

Daddy took me swimming today to cool off. I've been very tired lately so it was nice to take a refreshing dip. I'm gearing up for next weekend as that is when I turn three!

We went out for dinner to celebrate Grandma's birthday!

I was hesitant at first... thought Clay was driving this thing!

I'm feeling great! Been very sleepy but feeling so much better. Mommy had a great Mothers Day thanks to the herb garden I made her.
I am a month away from my 3rd birthday and I am really looking forward to it!

Daddy took me, Clay and Olive to the dump this weekend. I was excited to get out of the house but... the DUMP?... Really Daddy?

Swinging

Olive let me sit in her swing. I even got a break from my oxygen and did ok.

I am doing GREAT! My seizures are at an all-time low. I am tired a lot and still need oxygen all the time but am happy to be home with my family and doing well.
Mommy wants to send pictures of me to the hospital to show them how well I am doing. Thank you to everyone who has been thinking and praying for me. I know that has a lot to do with why I am doing so well.

I've been doing well the last few days. I really enjoyed the boat ride but got some sunburn on my face... Thanks Daddy.

Went to my cousin Brenna's birthday party Monday night. I slept in my stroller the whole time but heard it was a good time.