Update

Thank you all for praying. Sarah did as well as could be expected. She didn't pull out her needle, praise God, but she didn't fall asleep either. She is such a trooper. Who would like to be hooked up to a poll with tubing all day? Not me! My parents went with us. It's always nice to have extra hands and distractions.

If you think of it....

...would you please pray for Sarah and I today. I am taking her for her monthly IVIG treatment at Hopkins. A specific prayer request would be that she not pull out her needle from her port, which she did twice last time. She is definitely an "opinionated" little girl, and she always makes herself known, which is why we have always called her trouble trouble!

I would also love it if she would be able to sleep for a bit. This always helps the time go by faster and helps with her restlessness. We are praying that we would see the same improvement in her coordination as last time, which would give us an indication as to which drug is helping her the most. Once again, this is an opportunity to put our trust in the Lord and not in medicine, but we are grateful that God has provided these drugs to help our girlie!

Disney World

We just got back from a wonderful week at Disney World. We had such a wonderful time being together with my parents and my sister. My parents were so generous and we got to do so much. We went to Disney's Hollywood Studios, Sea World twice, and Magic Kingdom twice. We had so much fun riding rides, meeting characters, seeing shows, and just being together. The kids did great! Rather than spread the posts out I'm just going to post the whole week all at once. We know how good I am at keeping up with posting.

The whole fam...

One highlight was getting to see my freshman year college roomate and meeting her husband and daughter....

Alethea meeting Mickey and Minnie....

Alethea, Mikaela, and I got to feed dolphins at Sea World.....


Caleb after a day at Sea World.....yes, he is laying in the parking lot using his new sword as a pillow.....

lots and lots of rides......




meeting Belle....

meeting Cinderella.....


Buzz Lightyear.....

Lightening and Mater....

Jo Jo and Goliath.....


Mom and Dad, thank you so much for your generosity. We all had a great time, and I know these will be memories that the kids have forever. We love you!!!

Poor Girlie

Sarah is such a trooper. I know I've said it before, but she really amazes me. The last four weeks have been wonderful. Ever since her last IVIG treatment, she had been walking so great. Probably the best she had been since this whole thing started. Over the last few days we started to see a decline, and yesterday was particularly rough. She was falling so much. She had a few spills that I knew were going to leave a mark. This is the end result. Even with the shiner she is stilling willing to give us her happy face. Oh how I love her!!!