Tuesday, June 16, 2009

Almost Done

We are getting very close to being done with the shots of ACTH (Thursday, June 18th is our last one!). As you guys know, the meds pose possible issues with her weight, blood pressure, and stool, so we have been seeing Dr. Nelson (outstanding pediatrician) twice a week since we started the meds (April 18th) to make sure things are going okay. Well yesterday was our last visit for all of these checks, so we were filled with a mix of emotions. Excited to not go anymore, as it means we are heading down the right path that God has laid out for us, and no more ACTH..woohoo!! Sad, because it had become a part of our routine, and it was the Only place that all of us could go out together and be around other people...amazing people at that! No worries because in a couple of weeks we will be able to go out in public and show off our beautiful Kylie!

Since the ACTH compromises the immune system, we would wait with Kylie out in the hallway, to be away from any sick kiddos that may be in the waiting room. We consider this particular bench ours..still need to work on getting a little placard with Kylie's name put on it :)

This is our beautiful little ACTH chunkster! Some of the more tolerable effects of the meds are weight gain and puffiness. She has been a trooper throughout all of the visits, and is just an amazing little girl!

This happy fella is Dr. Nelson, aka Grandpa Bryan. Everyone at Johnson County Pediatrics has been just wonderful with all of the extra help and special care they have given us from the first time we walked into their office, through all of the crazy times with her bi-weekly visits. So a BIG thank you to everyone at Johnson County Pediatrics!

It is just awesome to see all of the caring and supportive people that God has placed in our lives throughout all of this...His love is truly indescribable, and we are so very grateful for the many blessings that He has bestowed upon us. He is always with us, with all of us...we just need to be patient, and listen to Him, and follow Him. He will never leave us.


Sophie's Story by Elaine said...

Woohoo for almost being done with ACTH and being able to get back to a somewhat normal life and shedding some of those pounds and looking like herself again. Sophie was 7 months old when she started ACTH and by the time we were done she was in size 2T clothes. It was nice to get my baby back again a few months after ACTH was over.

Liz said...

Thanks for reaching out to us via my blog. I am so excited to hear Kylie is almost done with ACTH. Your story (I read back through it) was very helpful to me, especially in that it took a little bit for her to get seizure free on it. I am so scared of disappointment again, but I am hopeful this could finally get my little girl where she needs to be.

Congratulations on how well Kylie is doing!


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