(from Ty Miller)

Well to start off with some good news…Avonlea gets to come home tomorrow. We will be bringing her home - as there are no more treatments that they can do for her in the hospital.(The neurology team seems to be glad to get me out of their hair, as I have been directing more than a few detailed bio-chemistry questions at them.)Just kidding, they have been great and seem ready for most of the questions I throw at them...

Avonlea passed both the hearing screen and a car-seat test so she can come home with us tomorrow. We are very excited and feel very blessed by this. (The car-seat test basically just tested her to make sure she can breathe OK sitting up in a car-seat for one hour and the hearing test is state-mandated)

On a less positive note, the nurse practitioner noticed a weakness in her swallowing ability during an ox-swallow test, that could lead to aspiration. She has recommended that Avonlea not take anything by mouth for 4 weeks. This means that we will be bringing her home on a feeding tube. This also means that we will need to monitor her vitals more closely and have computers at home to monitor her stats…While we are disappointed in these results, we still strongly believe that God created both mother and daughter to breast feed, and we still have high hopes that she will be able to learn this skill in the coming weeks. Please continue to pray that she develop this basic skill early so that she can eat on her own.

These next months will be very telling as to how well she is developing. We will be having therapists into our house and we will also be learning how to work with her to develop and reach certain basic physiological milestones. Rachel will be a FULL-TIME mom…We are hoping and believing that when Avonlea is re-evaluated in about a month, that she has learned to suck and swallow efficiently. For now, we are just happy to get out of Riley and be at home with our baby girl. Thank you all for you concern, prayers, thoughts, volunteering, etc…

We will follow up as we know more. Also, if you want to send Avonlea some prayers or words of encouragement, she has an email address: avonleamiller@gmail.com. These messages will be going into her baby book; so when she is a healthy 16year old, she can look back and see how many people prayed and cared for her - and what a miracle she is.

Regards,

Ty (and Rachel)