Discouraging news - the biopsies are in

So yesterday we jumped right back into our routine of therapy and appointments after her procedure on Monday.  We started the morning with OT at 8am. She is working on some sensory issues in OT and her therapist, Ms. Heather, had a brand new dress up dress and crown for her to wear while she worked! (When it came to taking it off we were anything but smiles!)

After OT and feeding therapy we picked up 827 and Cowpoke and headed off to the eye doctor about 45 minutes away.  Our pediatric ophthalmologist is fabulous and he sees Miss Grace every 3 months.

She was wonderful in the waiting room waiting to see him and then was all smiles when she found out she didn't have to get her eyes dilated and just had to play the seeing games!

 

 

We did find out her vision continues to get worse. She was down to 20/80 with correction. He will see us again in 3 months and we will see what her vision is then and order new glasses at that point. Her eyes are really bad and he said LASIK can stop the vision loss but they don't do it until they stop growing and with girls is aged 16-18. That is a long way off.

 

 

 

 

We took 827 to work afterwards. There is a botanical gardens area right across from the police department. Grace always wants to go see the koi fish. Sadly it was to hot and they were all hiding deep in the pond and under the shade of the bridge. She settled for a picture with the flowers today. 

 



 

When we got home she got a surprise visit from her favorite big sister! She loves her so!


Today was back to OT, PT and feeding and then a fun afternoon coloring sidewalk chalk with Daddy. We had just gotten to the pool for some PT homework when her doctor called.

So now about the biopsies and what you have really been waiting for . . . Her eosinophil numbers are back up. She has to go back on the high levels of steroids. What that tells us is that there is still something or somethings in her diet that her body can not tolerate. The sad thing is that there is so little she can eat we are getting pushed to the lots of formula point that we have worked so hard in the past 18 months to move away from. It is hard to understand why something your body needs to survive (food) that it cannot handle. The doctor wants her on the high steroids again (and she cried when she had to take them tonight) and he will see her when he is here in 3 weeks. He said we need to postpone inpatient for 6-12 weeks and let her body rest and let the inflammation go down. Sadly this probably means she is loosing her beloved sunbutter (a peanut/nut free alternative to peanut butter of ground sunflower seeds), tapioca bread and bananas. It just makes me so sad for her. I pray that very soon a cure will be found for eosinophilic esophagitis and that she will be able to eat. I pray her joint pain from the high eosinophil levels will be gone and she can run and jump and play like other kids without the pain and discomfort. I pray her crooked legs and feet would straighten and the tremor in her hands from the cerebral palsy will be gone. I pray God would restore her vision or at least stop its loss. I know He is able. I know He loves my baby girl more than me and she is on loan to us from Him. I pray her story would impact nations and Christ would be glorified in her life. As always thank you for praying for my precious little girl.