A Little Late!

       I know I am a little late, but I had an appointment with my pediatrician yesterday.  I had to go see him because my MIC-KEY button was starting to get pretty red.  I also had a rash around my belly to go with it.  Even though I hated being there he gave me some medicine to help with my rash.  My incision site is looking good for the most part, but he gave me some cream that will help it even more.  He did say that my MIC-KEY site was starting to get infected so the cream should help with that too.  I go back to see my surgeon in a week so she will say whether or not it is all cleared up or if I need more medicines.  Other than that I have been doing great although I'm not interested in eating at all.  I do start OT again Monday so we will see how that goes.  I'm doing pretty well moving around and playing, so I'm not sure when we will start PT back up.  Other than that nothing much has changed just been healing and trying to care of myself and Mommy and Daddy. We did get to go to my very first baseball game and also got to see my first fireworks show! The Clippers lost but I still had a great time! Thank you all for thinking of me and praying for me it means so much!

                                                           

                                                            Just watching the Game!

                                                                         Mommy

                                                                           Daddy

 Family!!!

                                                         v My Very first fireworks show!^

and that's the game!

I'm Home!

       As you know my surgery went really well.  It only took two days for all the swelling to go down for them to move me out of the ICU.  It seemed like a really long week in the hospital, but I am back home and doing fine.  It all depended on my esophagram I had yesterday and to our surprise everything looked great! A much better recovery than my other surgeries! I am still pretty sore, but I was able to come home on no pain medication (Tylenol if needed) and one less daily medicine (Sodium Chloride). Instead of 4 medications a day I am down to 3!!! I am also allowed to eat by mouth, but I am still not very interested in it. Now that I am home and out of that hospital crib I am EVERYWHERE. I love all the moving around I get to do now that I'm home! I am very excited to heal 100% and enjoy that summer weather! Thank you for your prayers. God is good! Check out some pictures from my recovery :)

                                                    Finally awake the day after my surgery

                                                                   Eating my toes!

                                                                      Standing

                                                                    Mommy

                                                                  Sleepy Baby

                                                                     New Toy

                                                                         Just chillin'

                                                                      Daddy

                                                               

                                                               Coming home!!!

Surgery Update

       Yesterday was the big surgery day.  The surgeons were able to go in and disconnect the fistula.  Yay!  The next thing they did was take some tissue and make like a wrap around T.J.s esophagus to prevent this kind of thing from happening again.  They didn't have to cut out any part of the original esophagus where it was originally connected because it was all healthy (2% chance of that outcome.)  That also means they didn't do the stomach wrap, which means less trauma from this surgery, but T.J. will have to have another surgery down the road.  It was kind of a bummer about the stomach wrap but also a blessing because we don't have to stay at the hospital as long this time around. While trying to get to the fistula the surgeon did puncture the top part of T.J.s esophagus because of all the scar tissue, but she put in two layers of stitches and was able to fix it. T.J. will go down for some tests in 10 days to make sure there are no leaks and everything is good.

       Today T.J. was able to open his eyes and sit up and even stand up with some assistance which is fantastic news.  He is still very ouchy so he has an epidural and is on his favorite medicine dilaudid.  Hopefully either later today or tomorrow we will be out of PICU and on the regular patient floor!

       T.J. was able to spend all day with his Mommy on Mother's day which was a big improvement from last year.  We would like to thank all of you who are praying for T.J. and our family and ask that you continue to do so during his recovery.

These are mine right? 

I thought so. 

O' look something shiny! 

Slipping with no-slip socks

Post-Op

 

Fun week!

       Well we have been taking advantage of this past week since I'm not at the hospital and will continue to do so until Monday when I go in for my surgery. I got to go to the Zoo for the first time ever and really liked seeing all the animals and people watching (just like my Mommy) but most of all enjoyed being outside. I've also got to take a walk and a lawn mower ride with Daddy and also got to sit and play on my grandpas Harley! Mommy, Daddy and I are looking forward to Mothers day since I will be at home for this one! I haven't been going to OT or PT since we thought we were going to be at the hospital we didn't schedule anything, but Mommy and I have been working on me pulling myself up, standing and walking. I can pull myself up on just about anything but still don't like going back down to the ground. I stood for about 10 seconds all by myself which is a big deal because usually I don't like when mommy lets go of me and I am walking like a champ as long as I have 2 hands to hold onto! Eating hasn't been going as good.  Every time I eat I tend to cough so it's become something I don't like to do. I got another tooth this week that's number 8 four on the top and four on the bottom! The only bad thing that happened this past week was me accidentally pulling out my G/J Tube. It didn't bother me one bit I just kept playing but then Daddy called the on call surgeon and Mommy put a new G tube back in and we had to go to the hospital and after 3 in a half hours they put my J tube back in and we got to go home!  That's about all I got for now! Enjoy some pictures!  

                                                      Mommy and Me with the Grizzly Bears

                                                             Daddy and Me with the Eagles!

                                                                 Family Zoo time!

                                                                       Snake!

                                                                    Alligator.

                                                               ^ Leopard v

                                                             Gorilla up close!!!

                                                                         Gorilla

                                                           

                                                           Mommy loves Sharks!

                                                                   Gpas Harley!