Dudley Family

While sitting through a red light about five times last night trying to make a left turn, I began reflecting on this time last year. Last year at the same time Kylie and I were spending the last night that we had to at Our Children's House at Baylor for the inpatient feeding program that she went through. She was discharged Thanksgiving Day at 10AM. Kylie successfully went throught the program in about six weeks and did beautifully all the way through it, however, it was just six more weeks of being away from home...but absolutely worth it in the end. I remember feeling a bit apprehensive, to say the least, that feeding Kylie was now solely in our hands with the support of the clinic as far as sending in weekly menus of what exactly Kylie had eaten and of course the weight checks. I just hoped and prayed so much that we wouldn't have to resort back to the tube feeds because I knew that would have been a huge set back and maybe even have caused the behavioral/oral aversion to come back that Kylie had developed after being tube fed for such a long time along with the spitting up multiple times a day that she had done. I just remember walking into the door to my parent's with Kylie and seeing everyone in our family so excited to see her and all the food that she would be able to enjoy that day for Thanksgiving. I would dream of what she would like the best about the meal. Needless to say, Kylie never had to return to tube feeds and her g-tube was removed about six months after the program. She is still very tiny and has difficulty gaining weight, but she eats like a horse and eats such a variety of foods as well. She has probably only spit up one time since her G-tube was taken out.  Thanks to all of the wonderful therapist that worked with Kylie to help her eat.

I hope each and every one of you have a wonderful Thanksgiving!!!

Update on Kylie:

Halloween: Kylie was a bumble bee for Halloween and was so cute and really enjoyed the evening.  We attended a church function the Sunday before and then a Halloween party at one of our friends house and then Halloween night.....Needless to say, Kylie was ready to retire the bumble bee costume.  She was quite a trooper on Halloween night because we actually drove to both sets of grandparents' house, great-grandparent's house and then to a friend's house to show Kylie off and ended the evening late.  She did great and was so happy to eat chocolate.  The girl already loves chocolate and doesn't even gain weight from it!!!!! 

College Station - Aggie trip: We went to College Station for a weekend.  My sorority was having a reunion.  It was so fun to get to see people that I haven't seen since I graduated from College (10 years ago!!!!! UGH!) and of course to get to see some of my close friends that I still keep in touch with.  We had lots of fun!! Kylie didn't last too long at the evening dinner and Chris and Kylie ended up enjoying the evening in the hotel room.  I stayed up with some of my girlfriends talking about the past and all the good times we had.  We got to tour the sorority house where I lived for a year and Kylie loved seeing the pretty house and was just hilarious running around there.  I just pictured her there 16 years from now (no pressure Kylie..j/k).  

Kylie is doing well and has had a few issues with allergies.  We have not had to go to the doctor and have just had to get a prescription decongestant called in.  All is well and Kylie is still weighing in at 22.8...we continue to work on the weight gain.  Kylie's speech therapist has gone to consulation only...YEAH!!! Kylie is currently in the process of being tested to see if she qualifies for any services offered through the school district since she is turning 3 in February.  She just had an Audiological evaluation attempted but they couldn't complete it because she had too much fluid in her middle ear.  The doctor said this would just take time to clear since she has had lots of issues with allegies and congestion lately.  Not a big deal and the audiologist didn't think Kylie had any major kind of hearing loss or anything.  The Audiologist knew so much about ECMO and the research that is out there about the linkage of hearing loss and ECMO.  That has always concerned me and I have always wanted her to have a formal hearing eval.  I remember when we found out about Kylie's CDH that we read so much research about ECMO because we knew that might be a possibility and I remember being concerned about the hearing loss.  He thought it was great that Kylie pronounces her sounds so well and that she continues to pick up vocabulary and language daily.  We are still trying to figure out where Kylie is going to go to preschool next year. We have officially started the potty training and I will let you know more about that as she progresses. 

That is about all in the Dudley household...please know that we think of all the CDH families daily. Take care!!!!

Julie