So, did you know that Gymboree bubbles are the best? The OT asked us to get them for Ella, so Kelly picked them up this past weekend. Who would have thought that Gymboree bubbles would be superior? The bubbles are amazing. They last for hours. I came home and they were still intact all over the room. Ella thought they were interesting and fun to look at from afar.
Another tool from the OT to help desensitize Ella is placing her in a bath tub with pinto beans. Sounds strange, but is a handy trick. We’ll see how she responds as the days pass.
Although still a lot to overcome, Ella did good with eating today. The OT recommended to not wipe her face when she is eating. She doesn’t like eating much less having her face wiped. So to limit the frustration for Ella, only wipe her face at the end of the feeding session, thus the messy face photos.
Tomorrow, I am headed off to see my best friend to hang out for a few days. Kelly and Josh were gracious enough to give me a break and offer to look after Ella, write the blog, etc. I am looking forward to a few days of “girl time” and full nights of sleep. I pray that Ella will sleep at night for Josh. I know how hard it is to get up several times at night and then function during the day. It can be done, but is challenging.
Ella has a renal ultrasound and upper GI study scheduled for Feb 4th. We’re hoping that the renal ultrasound will show the nephrocalcinosis has improved. Also, that the upper GI will indicate that her nissen is still intact. It would not answer why she has been retching so much, but it is a concern we have right now since she is retching just as much as last summer when she had re-herniated.
I have not heard back from her pulmonologist about scheduling her SVC procedure. Hopefully, we will get an update soon.
In the meantime, we love to capture the smiles and share them with you each day.
Psalm 5:11 (NIV)
But let all who take refuge in you be glad;
let them ever sing for joy.
Spread your protection over them,
that those who love your name may rejoice in you.
