Family Time

Merry Christmas!!!

      I am 8 months old and for my monthly birthday I decided to start chewing on my toes (which Mommy does not like...but I'm still going to do it!) :)  This past week has been great!  Since last week I have had to go to Occupational Therapy and a Dilation, both went real well.  OT was fun at first, I got to play with a sippy cup and I loved it!  The therapist was surprised I knew what to do with it and I was having a great time until she tricked me by putting food on it, but I got use to it and started licking it off!  My dilation was short and sweet, Mommy and Daddy got me up really early because we had to be there at 6 am I was in a really good mood too.  :)  The doctor went to 10 mls as planned and everything went smoothly, so after 5 hours of recovery and 3 Christmas gifts later we got to leave!  I got lots of gifts over the last few days and I loved opening them.  It was good to see some family, but we didn't really go out much! I had a great first Christmas and even though I don't have anything to compare it to... I'm going say I LOVE CHRISTMAS! Thank you all for praying and please continue to do so! I hope everyone had a very Merry Christmas!


8 Month Measurements
Length -----------------------28.6 in
Head Cir --------------------17.3 in
Weight ----------------------18.7 lbs

Ho Ho Ho!

All tied up!

Me with all my gifts!

Rocking into the New Year on
Daddy's old rocking chair!

Getting Closer

       Well yesterday the schedule was messed up at the hospital so Mommy, Daddy and I got to spend the whole day together away from that place it was fun, but today we had to go back and my dilation went really well and I got to come home again! My surgeon decided that 10 mls is big enough for my esophagus for now so we're just going to keep doing what we're doing and as of January 1st 2013 I only have to go back every two weeks, but that doesn't mean we'll have time to relax, I have Physical and Occupational Therapy every week for at least the next couple of months! I really liked Occupational Therapy, last Friday the lady was really nice to me and gave me toys and tricked me by putting food on them but I kept trying them and did a really good job! Physical Therapy is a different story the lady was too rough and pulled my G Tube so I cried the whole time until she left me and Mommy alone...That really made me happy! I got to see Santa on Saturday and although I may not like some men with beards I really liked him and I smiled a lot and people were saying oh look how cute and so I smiled more and they made even more ohs, oohs and awes at me.  

       Although things are looking up we still ask that you continue prayers for us and we want to thank all of you for praying for us and keeping us in your thoughts.

Giddy Up!!!!

 Knock on Wood                                                                                                                                          

    Everything is going great!  This weeks dilation went well even though they couldn't go up a balloon size. Mommy and Daddy were happy they didn't push it and my surgeon let me come home for the third week in a row. She was pleased with what she saw and thinks we're gaining ground AND she has hope that by the beginning of next month we can move my dilation's to every other week!!! I am still screaming more and more everyday and I love saying "Dadadadada" which makes Daddy smile a lot! I can also sit up all on my own now...(for a while I was having trouble balancing myself) I don't have a third tooth yet but I do have my two front teeth for Christmas :) which reminds me we put up our tree so Santa can come bring me toys!!! Well that's all for this week. Thank you all so much for praying we really appreciate everything you have all done for us! Please continue to pray! PTL!!!





                                          Playing with my new toy at the hospital    

Another Dilation Down

       Yesterday I had another dilation and it went really well.  So well that I didn't have to stay the night at the hospital.  That's 2 weeks in a row which makes Mommy and Daddy really excited and hopeful.  Next week the doctors plan on using a bigger balloon, but we won't know for sure until next Monday when we get there.  On another note I got my second tooth!  It's right next to my other one.  If you recall there was a point in my life where I couldn't make any noises.  That was because my vocal cords were paralyzed on one side.  That is not the case anymore I can scream, laugh and yell all I want, it makes Mommy and Daddy come over to me and say, "Boy, you are driving me crazy!" whatever that means. I think I'll keep doing it anyway.  Thank you for you continued thoughts and prayers.

See my teeth?

Getting Bigger

       Not just me but my stricture is getting bigger too.  I know that doesn't sound good, but it's actually really good.  The bigger the stricture the bigger my esophagus is!  That means less dilations I have to have done.  Monday when we went to the hospital for another dilation I got to leave early because everything went so well. My surgeon says she wants to continue to do these dilations for another five weeks in a row then if everything has gone well by then we'll move to every other week. Fingers crossed!  I have also gotten a little smarter and when Mommy and Daddy feed me I wipe my tongue off with my bib so I don't taste the nasty stuff...which was peas tonight...yuck!!!   My mouth is still very sensitive but I am continuing to get better at eating everyday! There really isn't much news..but no news is good news and Mommy and Daddy are happy things have slowed down and as long as I can chew on something I'm happy :) Please pray for my stricture to get better and everything to go as planed!  Thank You!  

T.J. Thanksgiving

       So I'm not late I really wanted it to be T.J. Thanksgiving :-).  On Monday we went back to the hospital for my scheduled dilation and everything went really well.  I also got a PICC line put back in so that I don't have to keep getting stuck for new IV's every time I go back.  It will stay in until I'm done with dilations.  It's kind of a hassle for Mommy and Daddy but they thought it was the best thing for me.  I do have some great news for you too, I got my first tooth!  I'm doing a lot better with eating my food.  My new favorite thing is blowing bubbles with my lips and laughing when Mommy tickles me.
       Today is my first Thanksgiving and while Daddy and I played Black Ops 2 Mommy made dinner.  My favorite part of Thanksgiving was when Mommy gave me some Cool Whip!  That stuff is awesome if you've never had any.  I didn't get to have any turkey, but I'm pretty sleepy so I'm going to go take my Thanksgiving nap.  Happy Thanksgiving everyone!!!        

Another Dilation Down

       On Monday we were back at the hospital for another dilation.  We were there really early in the morning and I had a cold.  Because of my cold the doctors had to do two tests an esophagram and a chest X-ray.  The X-ray showed I was really congested and the doctors were a little weary about continuing with the dilation.  But the results on the esophagram showed the the narrowing was pretty significant, so they wanted to do the dilation any way.  When I actually got to have my dilation and it went really well.  The doctors were really happy with how well the dilation went and I did good through the night so I got to come home on Tuesday.  Since I've been home my cold has started to go away and I'm doing much better.
     
       Mommy and Daddy have also been giving me baby food!  The food is really gross and I can only have very small bites or else I choke.  I do love spitting it back out at them.  I have a feeling they aren't going to stop giving me these so I guess I'm just going to have to learn how to swallow.
     
       You may be wondering why it's taken until Thursday  for T.J. Tuesday, well the reason is our oldest puppy Shyla (Shy Shy, 17 years old) passed away Tuesday.  So we were just a little preoccupied with her.  Thank you all for the kind thoughts and prayers, but please continue them until I no longer have to go back to the hospital.

Before Food

During Food

After Food

Daddy when is it my turn to play Black Ops 2?

Swallow Study Results

       Monday morning we went to Children's and I got my dilation.  The doctors said my stricture had actually gotten smaller (not good) but when they actually did the dilation with the balloons they went in very smoothly and really better than expected.  They went from 6mm to 8mm and both were fine.  So they still cleared me for my swallow study for today.  The swallow study was very cool.  They put me in a squishy blue chair and and gave me some applesauce!  Mommy and Daddy were watching me make a mess, but also watching a TV.  They said it was me on TV and they could see me eating the food and watch me swallow it and watch it go all the way down to my belly!  I passed the thick baby foods test, but not the thin liquids which means I still can't take a bottle of milk, but I do get to eat stage 1 baby food!  Mommy and Daddy took me to the store and bought me 10 different kinds of food to try.  Tonight I'm gonna try sweet potatoes, maybe there will be a funny video next T.J. Tuesday!

       P.S. I also had my first Halloween and I went as a chubby raccoon! You can see down below!

Trick or Treat

       It's been one week since I was last at the hospital.  Being at home is the greatest thing ever.  Mommy and Daddy let me sleep in.  Most of my wounds are healing very nicely and my voice is getting stronger everyday.  I also am getting better at laughing!  Not a whole lot has changed since last Tuesday except that I finally got to meet some of you for the first time.  One special note to The Ruggles and the Hayers thank you for taking care of Mommy and Daddy while I was in the hospital :-)  I go in tomorrow for an ENT test, hearing test, and lab work.  If ENT goes well we get to talk to our doctors about maybe doing swallowing tests!  Then Thursday I go in for an esophagram.  Next Tuesday will be filled with lots of info just pray I don't have to stay the night during these visits.  Here's some pictures for you all.

     

     

Good Weekend!

       Last week after I updated you guys the doctors decided it would be best to leave the chest tube in until my esophagram so all weekend I had to deal with it, but that didn't stop me.  I still had a great weekend.  I worked down and all my meds and when the big day came for my esophagram (yesterday) I was ready! My surgeon said it was the best esophagram she has seen yet :) So good that she said if all goes well with ENT next week and they give her the green light we can do a swallow study!!! We're not getting our hopes up we're just happy we got good news so good that I GOT TO COME HOME TODAY!!! Thank you all for your thoughts and prayers.  I can't wait to update you all next week about my week at home! 

One Day Late Oops...

       Sorry I didn't update you guys yesterday Daddy had to work and he had the computer with him all day.  Saturday's x-ray looked worse than the day before so our plans to extubate and start feeds got put on hold.  Sunday's x-rays looked even worse then Saturday's so they had to place a PICC line and an extra chest tube to help drain air and fluid better.  When Monday rolled around they were talking about doing surgery which would cut out some of the scar tissue which was trapping some of the fluid by the lung.  Tuesday not a whole lot changed, but my x-rays did show some improvement.  They did take out one of the chest tubes, it pretty much was in there for no reason after awhile.  Wednesday (today) I'm off of the ventilator!!!  I'm still very groggy and don't really know where I am, but no more tube down my throat.  Hopefully tomorrow or Friday they will take out the other chest tube, but it all depends on tomorrows x-ray.  I will still be here for a  awhile and of course I will tell you when I get to come home.

  

One Big Scare

       T.J. went to the hospital for a Bronchoscopy and a Dilation.  The bronch test went well and the dilation looked as if it went just as well.  We were in post-op waiting for a room because we were staying at least 24 hours.  Mickey went to work and as soon as he got there he got a text from Kimberly saying, "Get back here now!"  Mickey got back to the hospital and as he turned down the hallway to T.J.s room he saw one of his worst nightmares, 16-20 doctors standing outside T.J.'s room.  They were all standing there waiting to be told what to do, what to get, who to get.  One of the nurses saw Mickey and took him to see Kimberly who was forced to leave the bedside so more doctors could get in to help T.J.  Mickey asked what was going and Kimberly said, T.J. wouldn't stop being fussy, then he started screaming and turned bright red in the face and within a few minutes his lips started to turn bluish-purple."  Kimberly had already got the nurse and that nurse had already called for more nurses and doctors.

       X-rays later showed there was a pocket of air next to his lungs.  The pocket of air was pushing on T.J.s right lung causing him to not be able to breathe very well.  The doctors told us that they needed to put in a chest tube in order to suck the air out.  After that T.J. began to stabilize.  He did have to be
intubated.  

       Here is the plan Saturday, we hope to extubate him and get him started back on his feeds, and start weening him off of his meds.  Then hopefully Monday we can take out the chest tube.  Then we can start talking about possibly going home.

A New Record!!!

       I've been home for 7 whole days!!! Things are going great.  Not much has changed really.  I've just been hanging out with Mommy & Daddy.  My next big day is Thursday, when I will be having another dilation.  We will be staying the night, but just as a precaution.  I already can't wait until I can go home Friday.  Since there's not much to update today I will be back on Thursday or Friday.  In the meantime check out these pictures!!!

GO BUCKS

I Love My Mommy 

I like to read the NFL Shop book!!!

Sleepy!

I sorta like my jumper...but not really...

 

Go Eagles!!!

:)

Mommy and Daddy got me a hat for when it snows!!!