Tuesday, August 18, 2009

This and that with pictures!

Maddy had her upper GI yesterday, and she did so well! She had to have been hungry, poor thing--because her mother is not so hot on a short night of sleep. She was supposed to have no food after 7 a.m., so I got up at 6:15 to feed her. I had the new bag of food mixed up the night before so that I could just plug her in quickly. So I gave her the four meds, hooked her up and set my alarm for 35 more minutes of blissful sleep. When I went in to disconnect her and cath her, I noticed that she was hooked up to the old bag. Yet the new bag was hooked to the pump. And the medicine was still in her tube. And I could not find where the formula had gone! No wet spots anywhere. I am still really confused about that! To make matters worse for the poor little girl, I couldn't just run it again, and she had to go without food until 11.

Correction: She had to go without anything in her tummy until 11. Because at 11, they fed her barium water through her NG tube, so that they could check her anatomy and reflux. Still a funny little curve in the duodenum, which is important for Dr. Kokoska to know before he starts the surgery.


Glen is back safe and sound from Pittsburgh and the Right Online conference. He thoroughly enjoyed himself and gathered lots of information and buddies.

Thanks to Jed and Alyssa for offering to take the girls Saturday while I worked frantically to get the house whipped into shape after the tornado called a paint job swept through. As mentioned in a previous post, while I was busy painting, and then the next morning while I took Maddy to the doctor (urologist--joy, oh, joy!), the kids pretty much destroyed any semblance of neatness--discovering long-forgotten toys, and not having a lot of room to play in it. And it was so hot outside, that we didn't force them out in it. So it was a big blessing that J & A took the little ones for a while. They played in the park, swam in the kids pool, had supper and baths, and when they came back, they handed over miniature key lime pies. That's what I call a friend!

Friday and Saturday, I moved furniture back into the school/nursery/play room, rearranged furniture in the girls room, and put a LOT of junk away. Still have a bit to do, and I'm saving the best til last: hanging all the school things up and organizing it all.


I'm like a kid at Christmas, waiting on my first of two boxes from aBeka! The first box should arrive today and contains the parent kit. The one to be delivered tomorrow has all the workbooks that I hadn't yet found unused on ebay.


Sunday was a crazy busy day for me. First, Glen was still in Pittsburgh, so I got us all ready and to church on time, though not soon enough for me to sing with the choir. Then I skeedaddled after first church, to run home and change Maddy and me into less dressy clothes before heading down to Zionsville for the Annual NICU reunion picnic. I took Susan and Annie Claire along. Annie is a little friend of Maddy's. She also has spina bifida, but she also had open-heart surgery. She's so adorable.

It was a lot of fun to see several people that worked with Maddy in those 17 days in NICU, and lots of other miracle babies too. AND it was stinkin' hot. Just so you know.

Sunday night, we had church in the park. It was a huge victory for us to be able to do it, because when Pastor Leeder first contacted the city for permission to use the stage for our church service, he was told, yes, but no Scripture reading or preaching was allowed. As a church, we banded together to pray that God would work it out, and the city relented and gave us free reign! The choir sang several numbers as a prelude, and then we had our normal Sunday night service. Pastor was hoping for 500, and I was hearing rumors that there were about 600, though I haven't heard the official count. We're hoping that seeds were planted in the hearts of those that came by.


Ok, now for pics! These are still from April and May.

It takes a long time to get Olivia to look at the camera!

Kirsten Metz loves my couch! She was over here a lot at the end of her school year. She finally came back for Sunday and Monday nights. She's a huge help with the kids!

Dex Byani is Madeline's physical therapist. She's in love with him. Here he is helping her to sit.

1 comment:

Joy said...


Your girls are beautiful. Love the pictures. Also enjoy reading your blog. My son has Down's Syndrome, so it is a real blessing to me to read your blogs and to realize that other moms out there deal with tough challenges and make it!

I usually don't leave comments, but I thought I would today just to let you know that your blog is an encouragement!