Good News!

       My PICC is out! Yay!  This means that I'm no longer at risk for infection while I'm just sitting at home.  My dilation went perfect and I don't have to go back for another 2 weeks.  I have gotten so much better at tummy time I don't even cry for about 15 minutes or if Baby Vuvu isn't playing.  Mommy has also been working on me standing.  I can't pull myself up yet, but if you stand me up and lean me on a table I can hold myself for a few seconds to a minute!  I'm still teething like crazy and my top front tooth is about to pop through.
       Feb 6th we go back in for a swallow study test to hopefully show that my stomach wrap is working and my acid reflux is in check.  If it is that means we can take out my J-tube, I will be using my stomach, and I won't have to have a pump to eat anymore!  

I'm the king of the babies!

Tummy time with Baby Vuvu!

9 months old!

T.J...what day?

    I know its not Tuesday...again...but come on! I'm just a baby and tomorrow I will be a 9 month old baby!!! oh how time flies.  Nothing much has changed this past week. We did have some PICC line issues last Thursday :-/ it wouldn't flush and I had a little rash under the dressing so we went to Children's to see what was going on and luckily it was just kinked and a little red from some of the cleaning stuff they used so they redid the dressing and sent us on our way.  Hopefully this coming Monday they will be able to take it out that way we wont have to worry about anymore problems.  I'm teething like crazy so some days I can get pretty grumpy and cry a lot but then Mommy and Daddy give me my teething toys and I feel better.  Tummy time is still a little uncomfortable because of my G tube but I'm starting to handle it a little better and even rolled over for the first time all by myself on Saturday (I didn't like it one bit!) Although I am behind on things like that my Surgeon and Therapists say I'm not as far behind as I could be after all my surgeries and spending 6 months in the hospital and will catch up soon. Speaking of Therapists :) I had OT yesterday! I wasn't really intrigued by the food as much as I was the teethers and all the toys that they had but I had a good time plus Daddy got to come too!!! I'm still very big into popping my lips and screaming but now that I can say MaMa its the first thing out of my mouth! Mommy and I were reading through my blog and realized again how far we've come in the last 9 months and just wanted to thank you all so much for the prayers they have helped my family so much! God is good! We love you all! Until next Tuesday...or Wednesday...or maybe Friday (you never know with me) Enjoy some pictures! 






       
                                              I like to cheat during tummy time :)

                                                     Using my binky as a teether

Avoiding the camera and watching TV instead :)

                                                                 Tummy Time

Another Good Week!

      This week was my first week back to Children's Hospital for another Dilation after 14 days of not having to go.  Mommy, Daddy and the Doctors were a little worried about how my Esophagus would look and react  but the Radiologist said everything went real well and he was able to pop it open to 10 without much trouble which is really good news :)  it means that the path we chose to take is the right one so far and it also means that I can keep going every 14 days instead of every 7!  I didn't get my PICC Line or my J Tube taken out like we had hoped but my surgeon said if all goes well next time then we might be able to take them out.  I did get a new G/J Tube though and it looks much better than the last one.  My rash on my belly  from last week is gone and on another good note I've been saying MAMA!!!!!!!!!!  It makes Mommy very happy!  Although I say DaDa and MaMa a lot now my favorite thing is still popping my lips I do it all the time because people laugh at me and say I'm so cute and funny :) I like the attention! Saturday we went shopping for Mommy's birthday and I got to ride in my stroller like a big boy! See picture below...I had a lot of fun!!!  I haven't gone to PT for a little while because the people are a little rough and we're looking for something new but I have been going to OT every week and I like it a lot they give me lots of toys to chew on!  Well I think that's it on updates. I'm going to go take a nap now :)  or scream so Mommy can't do anything else but play with me!!! Thank you for the continuous prayers we really appreciate them!   PTL!!!                                               

                 Time for bed!

                                                        In my stroller like a BIG boy!

                                                Holding my Paci in with my cool new ball!
                                                            (Thanks Sammy!)

                                                Waiting for my Dilation like a good boy!

Mommy's Birthday!

Happy Birthday Mommy!!!

       As you know today is not Tuesday, but it is Mommy's birthday!!!  This week has been really great because we only had to go to the hospital once the last 2 weeks.  Everything went exactly as planned and we got to go home later in the day.  Mommy and Daddy did notice a small rash on my belly so we have to ask the doctors about it next Monday.  Mommy and Daddy have been giving me a very small amount of milk in a bottle.  It takes a little while for me to drink it all, but I'm definitely getting better.  OT and PT are going great and we found out that I really like carrots!  I have managed to find my toes and have now started to put them in my mouth all the time.  One of my favorite things other then saying Dadda and screaming is popping my lips just like Mommy ask her to show you next time you see her.

      

Happy New Year

       Another week of dilations done and over with.  This is also the last time Mommy, Daddy and I have to go to the hospital every Monday.  We only have to go every other Monday now which is awesome!  I haven't had any OT or PT because of the holidays, but we start back very soon.  I'm sitting up by myself a lot better.  I'm also starting to learn how to stand with Mommy and Daddys help of course.  Mommy and Daddy say that my vocal chords aren't paralyzed anymore all because I talk to them.  They say I'm screaming, but I'm just trying to get there attention :-)  I wasn't awake during New Years, but Mommy and Daddy did come in and give me a New Years kiss.  

Last pictures of 2012!