Thursday, December 1, 2011

Interim Maintenance- Day 32

She was ok about going to clinic today. She wasn't thrilled, but knew we would go no matter what. She was much more excited when I told her Daphne would be there. On the way there she wanted to "beat" her there. Luckily, we walked in at the same time. She acted shy for a minute but I could tell she was SO excited. She wanted Daphne to watch her weigh, vitals, ect all by herself. And of course we had to watch Daphne. It made it slightly challenging to keep her in the room because she wanted to see her. They were sweet to let her come in and play.

She walks around the place like she owns it. She used to hold my hand or make me hold her. Progress.

Keeping her entertained....a challenge.

She wanted a turn taking pictures. This was the result.

We tried the concious sedation vs. the RTU. The RTU entails being all the way out. The concious sedation is done in the clinic with versed and ketamine. I was nervous to try it, but it ended up being ok. They still have to fast but it seemed like we got in there quicker. It was different to watch everything though. I did ok. Grammy may/may not have walked out crying. I just have to hold it together to keep her calm. It was hard. Watching her sleep afterwards was bittersweet. Just a reminder of this long journey.

It seemed like it took forever for her to snap out of it and she complained of being nauseous. She usually doesn't do that. She wouldn't eat/drink anything for 2 hours after. I don't know if it's the difference in sedation or just a fluke that day. So hard to know. I scheduled the concious sedation one more time and then we will make a final decision from there.

The most challenging thing this week has been the medicine. If it weren't for that, I would say that this was something we could do. I know it sounds crazy but those battles are physically/emotionally exhausting. I think I got every tip there is for medicine. I even called the clinic to say that I am at a loss. She has to have the medicine but keeps throwing it up. They told me to take a few days off and try again. Did that, and still nothing. She is stubborn and REFUSES any kind of medicine. I can't even list everything that we have tried. However, I did sneak a few in with her mini m&ms which was good. One of the sneaky ones got caught on her tooth and she figured it out. That didn't go over well. Ashley suggested wrapping them in starbursts (they are wrapped the same size as the mini candies). I wrapped a few m&ms and let her bite through one to see that it was indeed candy. I had a few wrapped pills set aside. Made it a game to see if she could do 2 and then we could go to the store and buy a treat. I also told her that Dr. Barnette said we could take a break from medicine as long as we practice starbursts every day. I am crossing my fingers, but it worked with 2 pills. I don't want to push it so we will try again tomorrow. Praying that it is our solution. My/Our life would be just a little easier!

Cross your fingers!!


  1. What a brave girl she is. I always marvel at both her and your courage in every post. Such an example and such an amazing family! FIngers crossed that those starburst keep working!

  2. Oh she is such a cutie. Your little family is always in my thoughts and prayers.

  3. Nate is horrible at taking medicine too! I can't imagine having to force him to take it everyday! Y'all are amazing! Praying the starbursts keep working for y'all!

  4. I'm so sorry she struggles so much with meds. I hope the starburst idea works. Great pic of the girls, I'm going to have to steal it!