Brooke had a non eventful clinic day. She has a cold so they tested her snot again just to make sure it's her friend rhino virus. They decreased her anti-rejection med again. We are still on track to have her off IV's by Christmas. Last night she was crabby!! She had an IV med at clinic yesterday and it seems she just doesn't like it. So she cried and itched and complained. She seems to itch more but the MD doesn't seem too concerned about it. She stays at about 17# and 26" long. She's having some major behavioral issues with the therapist. The minute she see's them she SCREAMS until they leave. I have NO IDEA what to do! We've gone into the other room so she doesn't see us and then she just stares at the door and screams. We've held her to try calm her and she screams. It is so frustrating! I tend to think I understand strong willed children. We have a few of them but how do you out smart a 1 1/2 year old with the body of a 6-9 month old. If anyone has ideas let me know.
The girls are back at school and into their routine. I miss not having them home (last week they had off school). Schedule is good. Macy and Brooke keep each other company. They have their own little language they seem to understand. Hopefully the weather will cooperate and Steve can return to the fields. Since he was home tonight I went out for supper with a friend and our farmer husbands hung out with the kids and ate pizza. That was a good time. Thanks Sarah!!
Being in the house with this weather is a bit different for us. We spent alot of time outside this summer and now the reality of illness and yucky weather has us home. This is not exactly easy for me especially. This weekend I had my niece and nephew with me at church. Steve was home with the twins. So many people commented "5 kids, wow that's alot." I realize people don't think of us as having 5 kids. We only ever get out with a few of them. I so badly want to prance around with all 5 of them and show the world, "I HAVE 5 KIDS, AREN'T THEY BEAUTIFUL!" But I can't. So, we will stay home and do God's work there. He has so greatly blessed us. And I must say, I do have some good looking kids :)

"Stand firm. Let nothing move you. Always give yourselves fully to the work of the Lord, because you know that your labor in the Lord is not in vain." 1 Corinthians 15:58

Rain, rain, go away!

HAPPY BIRTHDAY LEAH!! 11 YEARS OLD

Wow, is this yucky weather or what??? It's not good at all for the farmers and it can get even the happiest people down. I've read many times you need to find something to laugh at every day. Good thing for kids. Thursday the home nurse came and the girls had off school. So, off to Crazy Bounce we went. All I can say is I am OLD!! I hurt, but it was SOOO much fun! We laughed and laughed. Macy even went zooming down the slides.
Brooke's week has gone well. She has a little runny nose but it hasn't turned into anything to be concerned about. She scoots all over and has found a personality. You see I wrote "A" personality. We are not sure we like it yet. She cries when ever the therapist come or she doesn't like something. Not a little cry, but a mad, mean cry. It's manageable at 1 year old, not so much at 13 years old. So, we have some training to do :) Many people say her "fight" is why she made it this far. There is always a positive side. Her feedings are going. She does not like them, still gags and vomits. She had an appointment with the nutritionist and developmental MD but that got cancel because the office was sick. So, we wait. Eventually she'll figure it out, right?? It is so much fun to watch her and Macy play. They are really starting to interact.

Steve worked as much as he could the past week but rain and a broken combine delayed him. Due to the weather he is home this weekend. He did get to go hunting which is good (as long as I don't have to cook any of that stuff.) Any my dad is here finishing the baseboards in our basement. Tonight the girls will have their playroom back. Out comes the doll houses and kitchenette's. (my dad also brought donuts which TOTALLY made my whole weekend :)

Next week is just clinic again and back to our routine. Thanks for the prayers, support and food that has been brought it. You would think I should have time to cook. Some days yes, some days no. You have all been such a blessing in our lives!

Aren't Grandparents the BEST!!!!

I wish I could show you all our pictures! Steve and I LOVE taking pictures!

Calgone....take me away!!

OUR LADIES!!

At about 3 pm today I was wondering why someone did not tell me after I had Leah, "STOP HAVING CHILDREN." 5 children seemed like too many. Brooke is a full time job, then there are 4 more. Steve is working alot (which is what has to be done) and my children take advantage of that. Ashley is amazing! She talks and talks and talks and yells and teases and is obnoxious (we have more children like this, it was just her day). So by 7pm it was off to see dad in the combine. WOW was it time. All children are in the car singing a different song LOUDLY. So I turned on the radio: one song, one singer. Ashley breaks out into a 1980's big hair dance. Shaking her head, her hair: shaking everything she had and laughing like crazy! I was laughing so hard I almost had to pull the car over. So I know why I have 5 children! They are all pure joys!! God knew exactly what He was doing and I feel so blessed. Sometimes we just have to look for the blessings and not get bogged down.

Steve came home tonight and the older girls were in bed (they are usually his greeters). The door opened and there were 2 little one year olds yelling "da da, da da." Macy bee lined to meet him and Brooke was doing her butt scoot toward the door. Like I said, PURE JOY! Thank you Jesus.

Meg cuddling with her Brookie!

Brooke's bath time

Harvest time!

Steve has started combining! Yea for him and all farmers. The weather isn't really cooperating. We keep hoping for warm/dry days but not so much. As long as they get done. My goal now is to get our ducks in a row. We seemed to have had a good schedule going before we went to the hospital. Then we went to the hospital for a week and that threw everything off. I told Steve I have no idea how we did it for 5 months. Now that we are back home I need to find the groove again. I'm sure it'll come back :) Brooke is back on bolus feeds and she usually tolerates them. She's had a couple episodes of dry heaving and trying desperately to vomit.
Macy had to have her physical. She's a true Koeman. 75% for weight and 100+% for height. I didn't have a sitter so I took Brooke with. What a sight we were!! Brooke sat in the jogging stroller with the rain cover over her (I call it the sneeze guard), she wore a mask for part of the time, and there was a note on the stroller that said "Please don't touch me, I don't have an immune system." WOW, what has happened to me!! I remember Megan eating worms off the cement when she was young! Oh how an illness can change things. I realized, our home is our safe haven. It doesn't help all the craziness on TV about the flu. Stop the madness. (just for the record I'll still let my other kids eat off the floor and even off the cement if that makes them happy, just not Brooke :)

Jumping for joy!

What a weekend! Work was busy (job security)but I wanted to get my weekend out of the way before Steve started combining. Like always, God provides and we all had a good weekend. Brooke is a funny little lady! She plays, shakes her head "no" at us, scoots all over on her butt and pulls IV's and tube feeding tubes behind her. Saturday she had 11 hours of IV's so I was glad to get that done. Now she's back to her 4-6 hours. She had some med changes so that took a little bit to get use to.

Today we went to clinic. Her labs all looked good. The decreased her cyclosporin (IV anti rejection med). If all goes as planned she will be off this by the 1st week in December and hopefully off all IV's by Christmas. What a present that would be!! Her tube feedings are still continuous, but I hope tomorrow to start doing a bolus again. Please pray she tolerates this. It's nice when we can have her "free" of tubes at least for a few hours a day. Due to this past illness we are still on house arrest. It doesn't seem she is going to get any "freedom" this winter. That's ok. We have a couple places we can go. We just pray those people don't get sick of us :) Plus staying home is good for the budget. Her next T cells will be looked at in November/December. That will show us how things are going. Until then we enjoy each day.

HOME!!!

We are home! Steve got to take Brooke home this afternoon. It only took 7 phone calls with the nurses for me to get it all straight :) But, oh so worth it. We had a crazy weekend planned with the girls having things to do and me working. I was getting a little nervous about Brooke being up at the "spa." To be honest, I didn't have time for it. If I can do it at home, I want to be home (as you can see it's all about me :) Not really, but, her labs were stable last night and today so there was no reason for her to stay. We can do the IV's and meds at home. So here we are again. Brooke was so happy tonight. She was playing, laughing and getting into cupboards. Unfortunately Macy has a cold so we have to keep them away from each other. It feels so right to have her home. We will all sleep well. We just pray this is not how Brooke's winter is going to go. We can't predict the future so we'll just enjoy the days. God once again carried us through another trial. He is so amazing!
One other amazing thing......I got home last night and was looking through papers (a pile of them on the counter :) I came across a permission slip for Meg and Leah to go on a Gems outing tonight. I mentioned it to them. They said "yeah we know about it." I asked if they wanted to go. They both said they wanted to go. I told them if I wouldn't have seen the paper they would have missed it. They told me, "it's ok mom. We don't have time for everything." I was amazed! No complaining, no begging, no "it's not fair." They just roll with it. They are at their Gems outing, and boy do the deserve it. What great kids!!

Health 1st, then home :)

THE VIEW! NOT BAD.

Last nights Brooke's potassium level went up, so they had to give her lasix to get it back down. They feel that earlier in the week, when she was dehydrated, they gave her fluids with extra potassium, she just hung onto them. They also decided to start a new formula today, which I was excited about. It has been running for 4 hours and after the MD calculated the potassium he said, "that's too much, try again." So the neuro-developmental MD came up with another formula. I am hoping we get to try the new formula yet today. I looked it up on-line and it cost $185 per can! WOW, that is a gourmet meal! Brooke has always had problems with her potassium, so this isn't a new problem, it was just kept at bay when things were normal. However.........does this delay us coming home?? ABSOLUTELY!!! We want to come home, but health comes 1st. We can still hope for tomorrow, but won't be surprised if it's Saturday or Sunday.

Brooke is doing really well. She is happy again, chatting, playing and the great little girl we know. A test did come back with adenovirus. A common virus that causes diarrhea. We are waiting on 1 more viral panel on her blood. Her nose swab showed she no longer has rhino virus. Yea! For not having an immune system, she has been able to get rid of these virus'. Not in a timely fashion, but in Brookie fashion. Thanks for the prayers. I'll post some pictures.

Macy eating Subway. Brooke was so excited her sisters were here.