God's Plan

Do you ever wonder what God is doing? Friday was my work day and the "spa" needed Brooke there at 12:30 for a lab draw. It would all work out, I just had to be organized. So I had everything ready at night, diaper bag, clothes laid out, backpacks ready so all 7 of us could be out the door at 7:45a. I got up at 7a (we aren't early morning risers :) to find Miss Leah on the couch all cuddled up. She didn't look so good. She was HOT and glassy eyed. She had been hanging out since 6am. She said she had a sore throat, and wow did it look gross. Steve and I went to get ready and Steve said, "now what." I just laughed. I said, "no problem." I didn't have a plan but I have a great gift of self talk. I can talk myself into thinking anything is ok :) So in the 45 minutes we were up, a new plan came together and it all worked out. Grandma's for the girls and Leah til 11a. Steve and I worked, then Steve went to Spectrum with Brooke and I to the MD with Leah. We all met back at home. Leah is on antibiotics and we pray gets better quick. It bothers her so much when she can't be around Brooke, but today she felt so bad she didn't want to be around her.

Brooke: they are increasing her blood thinners again and we check her blood work again on Tuesday. She also see's the surgeon on Tuesday for her nissen. They wanted to do testing to see to what degree her nissen(the surgery she had so she cannot vomit) had loosened up. But Steve and I didn't feel testing is necessary. There is no need to change anything right now, so the less testing the better. We have found we need to be her voice. I think some people are getting sick of hearing us :) Dr. Mageed is also waiting on all her T cell results and then he will send them out to his posse of MD's to be reviewed.

ALSO, Brooke's neuro-developmental MD called me today. (a side note...I LOVE Spectrum because the doctors call me. Not that nurses aren't great! But sometimes I want to hear it right from the MD or PA) Anyway, I told her about the feeding issues and stopping the feedings. She said, "yeah, we aren't going to do that." She confirmed all my fears. She said Brooke will starve herself. She's done it before and will do it again. She will get dehydrated. And now is not the time for "tough love." Yea, we aren't bad parents :) She was also speaking from experience. She said she had tried this before. With "normal" kids this works, they will eat. With not "normal" kids this won't work. She said she has seen kids in renal failure due to dehydration and stress fractures from not the right nutrients. As much as Brooke looks normal (at least to her parents) she is not normal on the inside. Her insides are messed up more than we can fathom. We need to be cautious of this and move forward accordingly. That just put my mind at ease. When we see her in December we will discuss feeding options, clinics and see if it's time.

Today, Saturday, Brooke started walking for REAL!! Across the house she goes. I've been trying to download a video for an hour and it's not working. I'm bummed! She's taken steps, even gone 5-6 feet but today she went from 1 room to the next, laughing the whole time. It's a strange feeling. Steve said, "that's it, all our kids are walking." It's amazing how perspectives change. We didn't know if she'd be here, let alone walk, but it's another mile stone we got to see her and Macy do. The best is when Macy takes her hand and away they go. YEA GOD!! We are so blessed!

Brookie's belly. All those spots are where she gets her lovenox injections. She actually hardly cries at the injection anymore, just the fact it's going to happen. Now her belly looks like Uncle Jon's. Except he doesn't have a feeding tube :)

Leah on the couch sick. She will KILL me if she sees I posted this. HEHE :)

Steve's new combine. He wouldn't let me put a picture of him in but he volunteered this photo :) If anyone needs combine rides, it'll be starting soon :)

Have a great weekend. Pray for NO MORE RAIN!! Time for those farmers to use the combines.