#

Well I wrote a post and didn't publish it (yes there are unpublished blogs. I have MANY things running through my head :) Then Steve said, maybe we should post Brooke's numbers. They might not make alot of sense but sometimes it helps to see where she is and where she needs to be. So:

donor cells: 85%, they want better than 75% Yeah!

CD4 320, normal is greater than 500, bad is less than 200

TREC 268, normal is 800, bad is less than 78

There are many more but you get the picture. I am waiting for them to email me a graph they put it on. I'm a visual person. Now I'm not complaining about these numbers. They haven't gone up BUT they haven't gone down. And Megan's cells (donor cells) are where we want them to be. When you look at the start of the graph the numbers were 0 -94 (Jan 2009) So from there we have made MAJOR progress. The MD's are getting input to see of we can take her off some of her meds. She is on many medications to prevent her from getting different infections. It's time to venture out and see how she does with out them. But that's mama talking :) So we'll see what they say about that. Today Macy saw a picture of Brooke when she had ALL her tubes. Macy asked what was wrong with Brookie. I told her Brookie had been really sick. Macy said, "really, she's not now!" So according to her 2 year old twin, having a counter full of meds and being tube fed is normal :) She doesn't know any different.

Grandpa Blueberry's birthday party!! YEW HAW!!

On to feeding, or lack there of. If you spend anytime with Brooke, she is just a normal little girl. She does it all and has attitude to go with it. (she even pinched a little boy she didn't know! That's not cool!) What she doesn't do is eat enough to survive. I guess you can't survive off 1-2 white chedder cheez it's, every few days. Brooke's feeding therapy is done in June. This is good and bad. Good in the part that Brooke no longer needs, physical, occupational or speech therapy. She's caught up to her age, however, our occupational therapist also see's her for feeding. When she turns 3, because this is supplied through the state, this will end. An MD recommended Brooke have outpatient therapy to help us with feeding. I was really torn with this. First, we really like our therapist now. She is so patience with us and has taught us alot. So the thought of starting over is gut wrenching. Second, I don't want to. I want Brooke to eat, and I have no doubt in my mind she will eat. But to be so intense about this make me anxious. So I called a few therapist and talked to a few people. Then I saw our therapist now, Becky, and I told her, we are taking a break. A summer off! We are going to grill out, go camping, cook over the campfire, eat ice cream and have fun. If Brooke wants to join us, we will be so excited! If she doesn't, we will respect that as well. Brooke has not been given very many choices in her life. She has been forced to do many things, and she does them. So I just want to give this time. Since it seems to hurt her when she eats, and she still gaggs and dry heaves, lets just leave it alone. She will be evaluated in June for an intensive feeding clinic. If she is eligible she will be on a 15 month waiting list to get in. We will cross that bridge when we get to it. We are sad to lose Becky, but she's given us the tools to keep trying without driving ourselves nuts.

That's the Koeman update. Home improvements are under way. I'm on a roll with painting, picking out flooring and landscaping to come! This is fun!! Not sure Steve agrees. He can't wait to get into the fields so I stop bugging him :)

Have a Blessed Easter. I love Easter. It was always amazing growing up. It's what our belief is all about. How someone could sacrifice so much for us, so we didn't have to suffer. I read this today and thought I'd share.

" Jesus opened up a new relationship for us through His death on the cross and His resurrection from the dead. No longer must we go through a high priest to seek atonement for our sins, because Jesus became the final sacrifice for our sins. And He has given us free access to God the Father, to whom we can come in times of need." (from Crosswalk)

I loved the words "free access." Anytime, day or night. How comforting!!

Happy Easter!