Great Week


       I had a great week.  Swimming was a little cold, but I still had a good time and did a great job.  I got to go outside and build my first snowman with Mommy and I LOVED it!!!  OT was good.  I had a long day leading up to OT so I just wanted to play with the toys, but I did make a pumpkin pie and of course I had to taste it along with some cereal and carrots. :)  Well your prayers are working.  I am tolerating my night feeds going into my g-tube!!!  I can't wait to go back to the doctors and tell them the good news!  I am also drinking some of my night feeds by mouth... because the less I have to take through my tube the closer I am to having no tubes!  So please pray that I can learn to like my formula and drink a can a day that way I don't use my tube at all!!! Thank you and Happy Thanksgiving!



                                                                                    

Walking our dog Shaq

He just turned 15! I love him

My snowman!

I had to fix his head after I threw a snowball at him and knocked his head off

Mommy where'd snowman go?

Making funny faces in the mirror 

Happy about my pumpkin pie!

                                                                           

GREAT NEWS!!! 

      I had two appointment's at Children's yesterday.  I went and got a new G/J tube which was pretty painful, but I got a lot of stickers so that kind of helped.  While the radiologist was switching out my tube he told Mommy that my j-tube was not in my jejunum (small intestines) where it belongs.  They said instead of sending my night feeds (formula) to my jejunum it was going right into my stomach which my surgeon didn't want because she figured I would puke it right back up while laying down because I have no sphincter between my esophagus and my stomach to help keep it down which is also why I have extremely bad acid reflux. We're not sure how long its been like that, but we know it was like that at least the night before and the good news is I haven't had any trouble (knock on wood) with my night feeds whatsoever.  So the question is do I even need my j-tube now?  I also went to my feeding specialist appointment yesterday and they were very excited for me.  Mommy was worried they'd be mad at her because she stopped feeding me my g-tube feeds, but they were fine with it since I've been doing so well.   Mommy told them about my j-tube not being in place and asked them if I even needed it anymore so the great news is..... We are going to intentionally feed me my night feeds straight into my stomach using my g-tube for 4 weeks and if I have no issues they will take the j part of my tube out!!!!!!!!!!!!!!!  We are super excited about this because without the j-tube if my tube was to accidentally get pulled out we'd be able to put it back in no problem, but (with my j-tube) if it were to get pulled out right now we'd have to go back to children's because a radiologist has to put it back into my jejunum using an x ray machine and obviously we're excited because it will be one less tube which makes us closer to our goal of no tubes :)  Swimming was great this week the water was a little cold, but I still did everything I was told and I had great time.  We are still working on potty training.  There is just something I don't like about pooping on the potty, but I'll get there :)  I have been working on my front flips and have perfected it and love doing it and showing off! I also learned how to sing the Itsy Bitsy Spider song by myself.  I hope everyone is staying warm with all the snow and cold weather.  Please pray I continue to tolerate my night feeds so I can get my tube out! Thank you!





                                             
                                                  Oh you know..Just standing on Daddy

                                                                         Such a cutie

                                                                      Eating great :)

                                    Nothing like watching cartoons in Mommy and Daddy's bed

                                                      Reading my dog Shaq a book

                                                                 Sleeping comfortably

Opening a gift from an old NICU friend 

Doing a flip :)

                                               

Great Eater 


      With Mommy no longer giving me my g-tube feeds I am eating by mouth so much better.  Who would have thought I would be a great eater?  Mommy and Daddy knew!  That's why they work with me and take me to OT because they knew that eventually with the right kind of help I could eat by mouth like other children my age and enjoy it.  It's been a long 2 years trying to get me to this point and we still have a ways to go, but I am doing great and our goal of getting my tubes out doesn't seem so far away.  I have shocked everyone that knows so far now we just have to go to my feeding specialist and see what she thinks.  We go to her next Monday.  Mommy hasn't told them that she isn't feeding me my tube feeds yet, but she has logged 3 full days of my meals and I am eating a lot and I usually end up with a stomach ache or puking if she does feed me my tube feeds so hopefully they won't be mad at her.  Swimming was much better this week.  It wasn't nearly as cold in the water so it was much more enjoyable!  While we're there we get to blow bubbles, do scoops with our hands, kick our feet, lay on our backs and our stomachs and sing fun songs.  I look forward to going back!  Please continue to pay I do well with eating and we get good news next week. Thank you.

Eating Candy 

       Eating like a champ just in time for Halloween!!!  I had a great time trick or treating with my cousin.  I got a lot of candy and didn't want to stop, but it was cold and rainy.  Everyone loved my lion costume!  I went back to OT this week and did a great job!  I ate a few bites of everything there and had a lot of fun reading and talking with my therapist.  I am eating by mouth like I never have before!!!  I ate so much one day this week that Mommy didn't even give my any g-tube feeds.  I ate 1/2 a cup of cereal with milk for breakfast, american cheese for a snack, gerber's lil' entrees chicken stew with veggies for lunch, more cheese, 1/4 cup of peaches and pears and then cream of chicken soup for dinner and to top it off I had some Halloween candy!!!!!!!!  My swimming lesson went well this week too.  I really enjoyed the water even though it was cold.  Fun fact about me lately... I'm obsessed with school buses :) I love them and whenever I see one I get real excited and tell Mommy and Daddy to look.  Thanks for reading.  Please pray I continue eating like a champion!  




On our way to trick or treat

Trick or treating 

My family

Eating candy

ROAR

KATE!

Being goofy at steak and shake

Silly

Picking out some more candy