Monday, October 19, 2009

+1176 Steroid Taper, No More Zenopax

The McNally family had a nice time in Branson, Missouri for the Feast this year. We feel blessed to have the opportunity to still travel.

I took David to Lucille Packard on Thursday for his monthly infusions. They decided to discontinue one of his IV medications (Zenopax) because his skin is looking pretty good and has not gotten worse; I was so thankful! Out of faith, I asked the doctor if we could start a steroid taper and he said yes! This is a huge step forward. We have not tapered his steroids in two years. We ask that you please pray for his skin, that he not have a flare-up. I should know in about one week if the taper is successful.

You may have heard that Stanford Hospital will not allow any visitors or guests who are under the age of 16, not even nursing infants. They want to prevent the spread of H1N1. This could potentially put our homeschooling, breastfeeding family in a predicament. As of now, Michael can take one day off work to take David to his monthly appointment. If there are more visits required or if Michael gets sick, I will need someone to watch my girls and the baby. Even if David needs a small blood draw, I cannot take any of my children with me. Please pray that we will get help when needed. Also, please pray Jonathan starts taking a bottle. We are having a real hard time getting him to take it.

With deep thankfulness,

Aimee and Michael McNally
along with Adira, Ariella, Jonathan, and especially David


Sumathi said...

Praying for you and for David on all fronts dear Aimee. So glad to hear that you were able to go on a vacation and even better to hear about the Zenopax and steroid taper. Just great news! Just keep going this way dear David.

It is so hard with a little one who won't take a bottle. I was there not that long ago and remember it all too well. Your strength and faith will help you find a way through this H1N1 mess.

God Bless your family,


Bee said...

Such wonderful news about the decrease in are in my thoughts and I am hoping that you will have only great news from now on...
Much love,
Bee x

Anonymous said...

Dear McNally Family

Our family has a history with WAS and our son had a bmt 18 years ago. Would be happy to get in touch to share experiences but prefer via email/phone. Can you include your email address on your site and we'll send you ours.

Best wishes.

Aimee said...

Dear Best Wishes,

Feel free to email me: