Today, Abby had another spinal tap. Her intracranial pressures were 3 times normal, again. They drained off excess spinal fluid (17 plus ml.). The plan is to double the medication that is supposed to decrease the pressure and then wait and watch. At this point it looks like this is going to take a while for this problem to be solved. Our choices are to stay in the hospital, where they can manage her pain, or try to go home. If we go home, we will be giving her the same type of pain medicine, but we will have to go to the ER of hospital if they aren't working. We will also need to go to the hospital every 2-3 days for a spinal tap.
Her doctors are changing her to medication that can be given at home and we are at least trying to move in that direction. If we go home, we will not be bringing home the same daughter we left with.
It's hard to accurately describe this to people. Abby is simply not the same Abby. She is in constant pain, migraine headaches and discomfort. So she comes across as grouchy and hard to please even though we are consistent parenting her (manners, treating people politely, etc). I can't imagine having that bad of a headache for a 2 weeks non-stop. Loud noises are grating and lights make the pain worse. We normally have a fun and active home but Abby just swings in and out of complete impatient and irritability. Brent has migraines sometimes, so he can relate a little bit to how she feels. Please pray that we have the wisdom we need to make adjustments and to help her learn to cope with this.
It is never easy to watch a child in pain. The last 13 days have been very hard and frankly lonely. When my children are hurting, my focus is on them. Writing is never something that is easy for me and when I am stressed it is much harder. I don't think to pick up the phone until the nurses and doctors stop parading through our room, unfortunately that is usually about midnight.
When friends have asked me about visiting, I told them that Abby was in a lot of pain, and that it wasn't easy to witness. A week ago, Brent and I filmed a few minutes of Abby crying in her sleep, but decided not to post it. Even that few minutes was more than we wanted to burden people with.
Three friends in particular politely listened to me when I described to them how hard things were for Abby and then told me that they were coming to visit us anyway. Toni,
Phyllis and Candy (who blogged about her visit
here ) I will always love you for coming to see us when we were hurting. And yes, Stacey we would love to see you too. But, it would be much more fun for Maggie when Abby is not hurting so much. Abby is not even close to her "normal" self.
Others stopped by to say hi and to pray with us. Old friends and new were a blessing to us.
Our Christian family and friends from Wildwood Church in Norman continue to bless us in many ways. Someone took the time to arrange for a builder to donate the wood laminate materials to replace the carpet in our house to help Abby with allergies. Another dear couple found out that our living room wood laminate floors had been water damaged from an A/C leak the first time Abby was in the hospital, and they went right down to Lowe's and bought flooring for our living room! We had a whole team of people help finish laying the floors, and clean the house top to bottom to get rid of all the sawdust and dirt, as well as put the house back together (everything had to be moved to put the flooring in). People from our church pray for us, bring us meals and groceries.
(Note from Brent: I've received some emails from people who have felt left out and lonely when in need or enduring a trial. I will have something on my blog about this late Tuesday night... Here's an exerpt:
I've received some emails from people telling me that they have experienced, or are experiencing a grievous crisis, and they are all but ignored by their Christian family. There is no intention to make us feel guilty about being helped, they just feel discouraged and let down not to receive the same. I can feel the sadness and frankly, I don't have any magic answers for them. Read the entire post:
http://www.brentriggs.com/ )
We continue to be overwhelmed, thankful and grateful for all the prayers, visits and practical help. It is hard to overstate how loving and kind our family at Wildwood Church has been.

Kya and Abby having a tea party.

Kya was an absolute doll. Candy you have a beautiful girl, inside and out. Thank you so much for taking hte time to visit Abby. I really enjoyed talking to you. You both were a blessing.

Abby and Kay, Abby's favorite volunteer.

Abby's coach, Bob Stoops and Samrawit. Coach Stoops makes Abby feel so special.
If you haven't seen it yet, you should read the article about Abby and Coach Stoops
in Serious.Life Magazine:
http://www.seriouslifemagazine.com/
Kya and Abby painting.