January 24, 2006

Ellie Kate is still in the PICU at Baptist. But, she is doing quite well! As you know, she is now off the ventilator. They are still observing her though and will probably keep her there a few more days.

Personally, I am overwhelmed at the thought of the treatments we are facing - speech therapy, occupational therapy, physical therapy, medication throughout the day, possible seizures, etc. I know without a doubt that God is the Creator of our precious daughter, and that He has orchestrated all of this for a purpose. But, like I said, planning for the future (both immediate and long term) has become mentally, spiritually and emotionally exhaustive.

We would consider it an honor if you would join us in praying for the following:

1. Ellie's complete healing from RSV and protection against it in the future

2. Continued healing and restoration of Ellie Kate's genetic make-up

3. Continued healing and restoration of her brain and it's functions

4. Wisdom for the doctors and that we would be connected to the appropriate doctors

5. That Ellie Kate would continue to eat strong and well

6. Patience and grace as we face this tough road ahead

We love you all so very much and appreciate your encouragement. As you may have heard, Oklahoma City University is hosting a fundraising meal for us next Tuesday evening, January 31st. The dinner itself is from 5-7pm and everyone is invited! It is $5 all you can eat spaghetti and all proceeds will go toward Ellie's cause. A few of you have asked for directions to the dinner. It will be held in the cafeteria located in the CQ Smith Student Faculty Center on the campus of OCU. OCU is located at 23rd and Blackwelder. For directions on how to get to OCU, a campus map, and other campus information, you can click on http://www.tgimatocu.com/visit/. From there you will be able to find all the information you need located on the left hand side of the screen (just click on the item that you need). This is an amazing thing for a University to do, and I am truly humbled that they would go to these great lengths for us!

We love you all and will keep you posted as things progress.

Ryan

January 23, 2006

We found out yesterday that Ellie Kate has RSV. This is bad because it is a fairly serious virus in newborns and infants (and that elderly). We took her in at a good time because the doctors feel that she is doing really well and responding positively to her treatment. She is breathing above her ventilator consistently and should be off the ventilator either today or tomorrow if I had to guess.

Ellie Kate having RSV is a good thing because we didn't want her breathing problem to be a side-effect or a new symptom of her genetic/metabolic disorder. NKH isn't accompanied by breathing problems so it really concerned us and the doctors that she developed breathing issues.

She is doing well and looks much better this morning than Friday. Being an asthmatic, I realized one of my biggest fears by watching her struggle to get good air.

Ryan and Conner are doing quite well. It doesn't appear that RSV is effecting them or me but we are doubling our vitamins, water intake,, hand washing and clothes washing. We are also warning everyone that dares enter the PICU that RSV is highly contagious and to enter at your own peril. But if you have a fairly strong immune system then it presents itself like a strong cold.

Thanks for the prayers, hugs, kind words and cards... we appreciate all of them. And we promise to post some more pictures soon after she is once again extubated.

-MFM