tapiocapuddin

Emily's treatments have been working wonders! Because her case is so rare (there have only been roughly 4 other cases ever even similar to hers), everything is experimental. She was never expected to have come this far, especially so fast. It's all an answer to prayer! But now the hospital no longer accepts Emily's insurance. She has a treatment coming up on Monday (1/15) she can't miss. Please keep praying for Emily's recovery and now the insurance matter.

UPDATE
From their last e-mail:

Positive changes since the last treatment...
*They found a vein on the first try - thank you for praying
*She now has 100% control of her bowels
*She has more understanding, and even some ability to reason
*She continues to make more sounds with her voice
*She has more times when she acts age appropriate in areas - she just turned 7

Please pray
*She will learn to swallow her medications (taken several times a day) so that g-button can be removed from her stomach before it has to be replaced in May
*We see lots of seizure activity as she will nod and blink for several seconds at a time
*Her speech returns - we are looking for a new speech therapist
*Her brain will continue clearing from the encephalopathy - complete healing - no more seizures
*Obviously, this brick wall we are up against with the insurance acceptance

UPDATE 1/24

We took Emily to Quality Infusion Care [instead of the hospital] today for her IVIG. After 3 unsuccessful pokes for the IV, they considered sending us home to reschedule for another time. Ahhhhhh... Then...two of the other patients said a prayer for Emily and another nurse was able to find a good vein. Once the infusion started, Emily was calm and did fairly well for the next 6+ hours. The facility was very nice and comfortable. We were pleased with the staff and quality of care. Best of all...the immunoglobulins are now INSIDE of Emily!! We wait now to see if she can make more positive changes from all this.

We enjoyed the company of the other 4 patients in the room with us. Interestingly...we learned that the lady across from Emily has been taking IVIG for 28 years (not for the same reasons as Emily, of course).

There is still a potential problem for the February infusion, but at least we have this facility as a backup. She is overdue for more EEG's and that would need to be done at the hospital. She is also having several breakthrough seizures during the day and we need to address this with the neurologist.
But, one thing at a time...

THANK YOU for your prayers and support and e-mails.
Love,
Ken & Natalie

Labels: Prayer Requests