It was so nice to have a "break" it was our first trip as a family that did not involve medical appointments. Elizabeth and Charlotte both did great and we were able to have alot of fun. We are very thankful to Make A Wish and Heatech who sponsored Elizabeth's trip. Especially since everything had to be rescheduled after she got sick back in October. During our trip we stayed at the Give Kids the World Village. We were able to visit Disney's Magic Kingdom, Animal Kingdom, and Universal. I think Elizabeth's favorite part was getting to see Dora. They had a character parade where Dora and all her friends came out, Elizabeth was able to meet them all and have her picture made with everyone. Then after the parade was over the had all the wish kids meet up and let them spend more time with the characters. I loved how special they made the kids feel and I know she enjoyed meeting her favorites :)
Elizabeth is doing SO well developmentally and making great progress. She is talking alot more and walking everywhere now. She did get some new inserts for her shoes to help her gait. Ortho still thinks she may need surgery on her hips at some point but we are holding out as long as we can. She is in her last year of preschool! I can not believe how fast she is growing, and she will be starting kindergarten next year. We will start meeting with the school district sometime after the first of the year to decide what school will be best for her and her needs. We really hope we feel comfortable with whereever they offer.The biggest news as far as Elizabeth's medical care is that we have decided to change hospital/doctors. After MUCH consideration we have decided to move her transplant and other major care from Texas Children's to Cincinnati Children's Hospital. I had mentioned here before that her primary transplant pulmonlogist and nurse coordinator had moved to Cincinnati to start a transplant program. We have been in contact with them and feel very good about moving her care. Cincinnati is significantly closer to home 6-8 hour drive VS 13-15 hour to Houston. While we have and will travel anywhere we need to get her the best care. Now that we have Charlotte we also have to consider long term, if Elizabeth needs another transplant or were to be hospitalized again we need to be close to family/friends. As well as the trips every 6 months, being closer means missing less work. We have always had a good relationship with Dr Schecter and are excited that he will now be Elizabeth's primary care doctor again. We realize Cincinnati's program is new, but know the Doctors/Surgeon/Nurse Staff are all from TCH and have significant experience with transplant care. We also feel that being in a newer program, the dr-patient ratio is smaller and may provide for more personal care - at least in the beginning. This was a HUGE decision for us, and we pray that we have made the right one! We will be traveling for her first appointments in October. She will be seen by transplant, cardiology, ent and orthopedics while we are there. We have a packed 4 day schedule during our visit there. We ask for continued prayers for only good news during this trip.
Everyday I see Elizabeth making progress and I can not help but think of how lucky we are that she is still with us! SO many prayers have been answered over the past 3 1/2 years. Some days its easy to get caught up in the routine of just living our lives. I still worry alot about her future, the constant fear of her going into rejection or that her heart will continue to get worse. There are so many unknowns with transplant and her genetic condition. But I have to remind myself Its not up to me to question when, why, or how things will happen. I found this bible verse recently and printed it out. I read it every morning when I get ready. Its my daily reminder, there is a time for everything. We have and continue to experience many "times" with Elizabeth and now is the time to enjoy life and make the most of the memories we are making with her.
"For everything there is a season, and a time for every purpose under heaven: a time to be born, and a time to die; a time to plant, and a time to pluck up that which is planted; a time to kill, and a time to heal; a time to break down, and a time to build up; a time to weep, and a time to laugh; a time to mourn, and a time to dance; a time to cast away stones, and a time to gather stones together; a time to embrace, and a time to refrain from embracing; a time to seek, and a time to lose; a time to keep, and a time to cast away; a time to rend, and a time to sew; a time to keep silence, and a time to speak; a time to love, and a time to hate; a time for war, and a time for peace. He hath made everything beautiful in its time."
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