11 Months Old!

       Not much has changed since last week other than I turned 11 months old!!!  Last week my surgeon said I could start eating again as long as I was careful so I start back up with OT Thursday and I am very excited, also we are having someone come to my house for PT that way I am more comfortable with everything. So last week I told you when I knew anything about my surgery I would let you know.  We still don't know anything, but we have scheduled some appointments to clear some things up. April 11th Mommy, Daddy and I will go in to talk to my surgeon and set a plan in stone.  I sure hope shes ready for their questions! April 22nd I go in for another esophagram so my surgeon can look one last time before going in. So hopefully things haven't gotten worse that way I can have cake on my 1st birthday!!! I am really not doing anything new I am just living and loving life! Sorry there isn't more to talk about, but like I've said no news is good news!!! Next week you will get to see pictures from my very first Easter! Thank you for all of your kind thoughts and prayers.  

                                                             Being goofy :-p

                                                        I love getting into things!

                                                             11 Months old!!!

                                                                     So sweet!

Getting ready to go out!

                                Mommy and me participating in Down Syndrome Awareness Day

Making a mess.

Test Results!

      I know it not Tuesday but Monday I had my Esophagram to see what has come of my leak caused by my last dilation on Feb. 25th and wanted to wait until we got the results before we posted anything.  So my surgeon called Mommy today and told her that she had reviewed my x-rays and could confirm that when my leak was healing it healed itself to my main right bronchus branch which means I now have a fistula that will not go away on its own. Now that we know it can't heal itself my surgeon has picked a date to do surgery and because I am doing so good and not having any trouble caused by the fistula and because Mommy and Daddy didn't want me to spend my birthday in the hospital she has agreed to wait until the Monday after my birthday which is April 29th. She is planing on going in and taking out the fistula and putting some muscle tissue from around my heart in between my esophagus and the branch its connected to which should help prevent any other fistulas in the future and also cutting out my esophageal stricture and reconnecting it  but Mommy and Daddy are not 100% comfortable with that plan, first reason is because the dilation's worked and my Esophagus is about the size it should be. The second reason is because she wants to use the tissue from around my heart...enough said!  Mommy did ask if my surgeon could fix my stomach wrap to help with my acid reflux during the same surgery that way we could get both things done at the same time instead of waiting another couple of months and going back in but because this surgery is so risky and up in my chest she doesn't know if she is comfortable going down into my stomach and putting my body through the extra trauma but did say if she had to pull up more stomach to connect my esophagus after taking out the stricture and I was doing okay withing everything else she would consider doing it all at once. We have to schedule a time to go in and talk face to face and figure out a plan so we will let you know what our plans are closer to surgery. On a good note since the fistula is small and I'm not having any problems with it I am allowed to eat by mouth again as long as we're careful and as long as that goes okay I will be allowed to eat my birthday cake which has been Mommy's goal since I was born!!! I am not fulling crawling yet but can move around pretty fast and have fun doing so! I still love waving, grinding my teeth, making funny faces, screaming, clapping and giving Mommy and Daddy kisses but my favorite thing to do is is still get into EVERYTHING! What can I say? I'm a boy! :)  

                                                     Cuddle time with Mommy!

                                                                    Just chillin!

                                                                          Kisses!!!

                                                                   Cool Shades

                                                           Animals from Cabelas.

                                                                            :)

Nutrition Visit

      We had a pretty good week!  Friday we went to the hospital for an Esophagram and got  bad news the leak is still there.  Worse news my esophagus may have developed a fistula and I may have to have surgery to correct it.  We go back the 18th to determine what will happen so we need lots of prayers for that day.  Good news my surgeon said no more dilations for now and hopefully ever again!  I've been moving around more and still trying to get into things I am not aloud in :) but mostly I've just been sitting then laying down, then back up to sitting all by myself.  I'm  still learning how to pull myself up onto my knees or into a standing position I just haven't mastered it yet.  We went to the hospital this morning for a visit with the dietician. She said I look very healthy and that I'm either 50 percentile or better in all my measurements.  I'm 29.5 inches long and almost 21 pounds and growing fast.  The dietician said that when I turn one we will change some of my feeds to something else but for right now we are sticking to good ole breast milk and some similac.  Things I love to do, smile at people, wave, make funny faces, make lots of noise, grind my teeth, play with all my toys, look at myself in the mirror, play pat-a-cake and peak-a-boo and I LOVE to play with things I am not allowed to play with... Which I think I'll go and do right now!  :)

                                                             Getting into things!

After I got in trouble :(

Playing Innocent......

                                             ........Until Mommy turns her head ;)

Being cute like always!

Sitting, Waiting, Wishing
 
      One of Daddys and Mommys favorite artists, Jack Johnson, wrote this song and that's basically all this week has been.  A bunch of me sitting, waiting, around for the next Dr. appointment and wishing I could eat something.  Whenever Mommy and Daddy have food I try and get them to give me some, but they don't let me!  They say it's because I have to wait for that next appointment, but I don't care I am done with my medicine and 100% better than last week.  I've still been improving on waving, tummy time, crawling (still backwards) laying down on my own, sitting up on my own and standing. For the first time last week I pulled myself up onto my knees to look inside my basket and made a mess by pulling everything out and have been trying to do it again with not much luck but I'm not giving up!!! I officially have 6 teeth now and still like grinding them which no one but me likes.  I do have a new face I like to make and its all Mommys and Daddys fault. Mommy started by making funny faces at me and I would mock her then Daddy started and now I just can't stop doing one of those faces. See and enjoy pictures below!!!

                                                                See the mess I made?

                                                    I love throwing things out of my basket

                                                             Watching my puppies

                                                                                :)

                                                               My new funny face

                                        I know it looks like I'm yawning but this is my new face :)