So I have three weeks to cover and where do I even begin? August has been HOT in Texas. We continue with our intensive therapy. When Grace's biopsies came back with elevated eosinophil levels we had to increase her steroids. It has been rough. Steroids are not fun short term much less indefinitely. Grace has had a hard time calming down and resting. Her "motor" is constantly running at 100+ miles an hour. There have been many moments each day where I have been concerned about her safety as she is downright wild. It's hard to discipline and correct when it is a side effect verses a behavior. Parenthood is hard! We have been trying to do a lot of gross motor activities/heavy work multiple times a day. Grace loves the water and we were trying to swim 3+ hours a day until all of these allergens have stirred up her asthma. She also loves to ride her amtryke even when the temperature is 100+ degrees outside.
Our local foster and adoptive families gathered together to celebrate the end of summer with a Back to School swim party. It is always fun to get together with families that share our heart for adoption. We had almost 80 people in attendance! We had a cookout dinner and one of the sweet ladies in charge was concerned about what Grace would eat. I told her that I would provide her food and not to worry about it. She wanted her to have a special treat though and got her favorite popsicles! Here is Grace with her sweet friend Isaiah enjoying a cold treat!
We went back to the geneticist on Monday. We were hoping to get discharged but the geneticist wants to run more tests. She wants to run another test. This test is really expensive and we have to get insurance approval first. Once it is run it takes 6 months to get the results. I am personally feeling that all of her issues are because of her EoE but I am trying to trust those with more education than me. Because Grace is adopted and we don't know anything about her paternal side she wants to make sure we have done everything we can to get answers. One thing I have learned is that doctors don't like it when I tell them "I read on the internet . . . ."
We are still working on getting her calories in. She has never been a "drinker" since we took her off of elecare (her special formula) and pushed her to eat table foods. I have struggled with it being so hot and trying to keep her hydrated. She loves to have a tea party and my Great Grandma's tea cups seem to be the key to getting liquids in her. She drinks almost all of her fluids out of a tea cup now. It's the little things, you know? Fine china, placemats and cloth napkins. These are the things "tea time" is made of.
Friday it was back to see our GI. We have been concerned about the side effects of her medicines. Our doctor feels like she is reacting to the splenda that we mix her budesonide in to make the paste that coats her esophagus to bring down inflammation and irritation. Grace has never had any other artificial sweetener so this is a good possibility. You cannot use real sugar as it would spike your blood sugars with the amount needed for the paste consistency.
Here she is talking with Gator about things that are appropriate to share with strangers. When we got to the clinic she had to potty. When we came out she walked in to the infusion lab where there where 3 men having infusions and announced to them that she "pooped big logs in the potty!" One man kind of giggled and the other two nodded their heads. We had to talk about not sharing our potty business with people outside of our family.
Anyway so our doctor wanted us to change her slurry to mix with Neocate Nutra. Nutra is a medical food (kind of formula powder texture but designed to be mixed with medicine).
We got a sample and used it last night and Grace gagged and gagged and cried and cried. She says it tastes like slime and it hurts her tummy. I am not so sure it hurts her tummy (that was probably from the retching) but it does look gross and of course now it isn't sweet. She can't have any food or drink until morning after she takes her slurry so we must keep it down. Tonight she worked herself up into a tizzy over not wanting to take it. She gagged and retched but thank God it stayed down. Pray she can take this and pray that her side effects from before cease. As my fellow EoE Mom pointed out our doctor is trying to give Grace quality of life by giving her every effort to options out there instead of going elemental yet. Elemental means where she will get nothing (even water) but formula to eat or drink. So our number 1 prayer request right now is that she will be able to swallow the slurry with the nutra and that she will be able to control/adjust to the side effects if they still persist.
This week we will find out who Grace's teacher is and I promise a post on that. Grace's big sister is getting married on Saturday so we have a full week ahead for the last week of summer 2014.
