Patience, or not!

Steve and I had our Sunday night going over the schedule meeting last night. We just go through the weeks activities and how we are going to make it happen. Well last week seemed to have fallen apart. Harvest is getting to long and the kids are realizing it. (I'm not a very good single parent). The van took it's last voyage (which is kind of a funny story if you have another van waiting to drive, which we don't). And I have a 1 year old that has become a monkey and quite unruly. So this weeks plan was 1st to survive, 2nd to have a good attitude, 3rd no more break downs and finish harvest.

Steve was making his lunch this am and disappeared quickly. Being I have 5 kids to get ready we just carried on. Leah said, "dad got a phone call, said oh great, and left." (Yep, break down so early in the am) Brooke has had feeding issues and was gagging this am. She got sick of gagging so she yanked out her feeding tube. So had to put that back in, then she gets mad and tears off her dressing on her broviacs. So I threw tape on them and we left. Luckily I had 5 kids in the car (my mom's car), all dressed and had eaten. I got everyone where they needed to be, Brooke and I headed to GR to her Neuro-developmental appt. I was there at 9:32am. Yeah early for my 10am appt. NOPE my appt was at 9am!! I told them they could reschedule because I'm the idiot, but they were gracious and saw me! (Thanks Jane, I know you are reading this :) Then my Aunt walks in. She works there. She said "Brooke's spirit looks so good." I cried!! God always puts people in your path when you need them. What a yucky start to the week that we had planned to make better. (Notice I said "we" planned. "We" are not in control :) In the end the worldly bodies don't matter, it's the spirit.

Today the neuro-developmental team is working on a new formula for Brooke. This weekend I had to put her back on her old stuff. She was not happy, kept gagging and pooping. If at 1st you don't succeed, try, try again. Then the Bone Marrow team drew the rest of her T cells. No results yet. We ask for prays for patience. Waiting for this is difficult. Every scenario runs through our head. One biggest fear is that nothing will change and we wait again. No answers. Or that she needs another transplant. Staying at home is getting old!!! My saving grace are my parents and work. God has blessed us so richly. We are excited to see where another week takes us.

SLEEPING BABIES!!!

Happy Thanksgiving!

Were do I start? We have so much to be thankful for, not just on this day set aside but everyday. I am thankful 15 1/2 years ago God brought me to marry my best friend. Situations can be extremely stressful on marriages. God knew a long time ago what we were going to face and he danced us through this little valley.
I am thankful God brought me through nursing school and gave me a job with home health. I always wondered why I was doing this job. I loved it but what brought me to that point? God did, and the skills came in quit handy. And the hours have worked right around IV's, tube feedings and MD appts, thanks to a great job share partner.
I am thankful for 5 beautiful girls. I never dreamed I would have 5 children! Only crazy people did that :) Welcome to craziness and I LOVE it! This past year has changed my parenting forever. I can't describe the feeling when a parent is told, "we will try our best. The longer we are gone that means the treatment is working. We will come get you, wait here." There is a sick feeling in your stomach, you can't think, your heart feels like it stopped beating. You realize everything can change not just for you but for siblings, grandparents, uncles, aunts, friends. We have also learned to release our children. We so tightly cling to them as ours. We are "foster parents" on earth. They belong to the Great Provider and healer. When I released Brooke to Him I got this overwhelming peace. So why not release all the girls to Him. It helps me to enjoy them so much more. To see their inner beauty and talents. They have all amazed us this past year.
I am thankful for parents who have come along side of us and helped us parent the girls. They have been our rocks, our sounding boards, our balance to keep us in touch with reality. For Brothers and sisters that not only cooked, baked, prayed, babysat but are now re modeling our house. Brooke is little, but the projects that come with her are large. The friends that have also cooked, cleaned, laundry, talked to us, gift bags, prayed. For the doctors, nurses and PA's that entertained us with playing wii, listened to us as we complained and hugged us when we cried. They are a dynamic team. And the list for everyone and their generosity goes on and on.
Without a circle/family of believers surrounding us, this past year would have been a chore. But it was not. It's what you do when you love someone. And we have felt the love from all of you. You are all amazing! This Thanksgiving, we are thankful for each and every one of you! Thank you from the bottoms of our heart and God bless you all!
The Koemans

Free????

Brooke's last cyclosporin IV.
Well the plan was to be IV free. We were able to stop the cyclosporin. That is the IV that we gave every day. She is still on the ambisone, which is 2 hours every other day. SOOOO every other day we are IV free!! We won't complain about that. All in all, her labs look good and she's acting like a true Koeman girl. Her T cells were drawn today and she'll have more drawn next week. It'll be approximately 2 weeks til we get those results back. The next couple weeks we anticipate to be difficult because there are family gatherings we can't go to. It's hard because so many people are praying and helping us as we are hunkered down in the house. We want to visit and talk with everyone but health first. We pray her T cells will come back higher than ever :)

Brooke also started on a new formula concoction. She had been losing weight so we needed to increase her calories. She is not a fan! She is back to gagging til her face turns red and her eyes water. We pray for clear direction as to what we need to do about this. As a mom I say stop! It kills us to watch her like that. But she needs to grow.

This last week was a little challenging. We brought our van into get fixed and we were told it's not worth fixing it. I called Steve and told him the "Loser Cruiser" (our van's name) has been put on hospice care. Steve and I are sad, the girls are EXCITED!! So, I am van shopping and reporting back to Steve in the combine. I'll keep ya posted how this all goes :)

My wonderful brother in laws were once again working on our house and took out our front door to find rotten wood. So they had a bigger job than expected. If I were them I would run away, but they stick with this HUGE project. So our front room (Brooke's room) will need some TLC. I prefer to shut the door and think about it later. Brooke's crib is in the dining room and she doesn't seem to mind at all. So we'll wait til the outside is done and then tackle the rest.

All in all everything is going well. We hope Steve will be done with harvest by the 1st week of December. It's time to have him home again. It gets a little unruly over here when he is gone.

Macy got into the markers. (she needs 2 parents to watch her)

Front door and Mark

Other front door and Jon :)

Almost free?

Went to clinic today and Brooke is down to 1 hour of IV's on even days and 3 hours on odd days. WOW that is huge! If all goes as planned we might be IV FREE (yes I said Free) next week. I'm not sure how to even fathom that! Brooke would still have her IVIG infusion once a week (7 hours) but no IV's. We are working on her feedings and are on a 6 step program. She's on step #4. However her weight has slowly decreased the last 2 weeks. We will have to change her feeding regimen. I like to say she is losing weight because she is burning calories scooting around. Next week she also has T cells drawn. That makes my stomach turn, because I REALLY feel the number has gone up and I have lots of plans in my head. Family outings, vacations, parties, I bought her and Macy Christmas dresses. Last year they didn't get to wear them. Brooke is doing amazing! She has personality, gets angry when things aren't her way, gives kisses, talks, does sign language, laughs. She's acting more her age now. All we can do is wait.
Steve is working many hours and we are so happy the yields have been good. A happy farmer = a happy family. It's nice the IV's are weaning down now. I am so use to having Steve's help, so when Team Koeman isn't a team it gets hard on both sides. We are so thankful for family. My mom has been my life saver. Let alone watching the girls and laundry, I talk her ear off :) This weekend we went to Steve's parents house. Brooke hadn't been there in a long time. She loved it. She sat on the table like she owned the place. Family is a blessing.
In my devotions today it said, "God knows the answer." And I have questions, especially before the testing. It goes on to say "you may not find all the answers," (not the comfort I wanted :) and it continues "but in finding God, you know the One who does." All goes back to my post a while back "FOCUS!" So it's not about me and my "plans." He's got our Miss Brookie and all our girls in His hands, so we will follow Him and go where ever He leads us.

Brooke "eating" a cookie, sucking on it

Someone stole Brooke's cookie?

Someone stole more cookies :)
Good cookie!!! If only she'd eat more than 1/4th a cookie day. I think she's wearing most if it.

Where do I start?

So for all the people that have driven past our house......yes it is naked and ripped apart! For Brooke's health new windows were needed. We had family that had planned to do this while she was inpatient in April but that was too much for my little brain to process. So we said, "hold the phone." Well, now winter is upon us and new windows were a must. So we called our wonderful brothers and brother in laws, and said ok now. I also told them they could say "told ya so" to me :) Well, if ya get windows then we should get siding, and siding leads to new doors etc etc etc. Luckily we have a glass man, a builder, an electrician and a siding man, all in the family. I had no idea how out of style we were and I've realized I have no decorating technique's. (And I'm ok with that). I hope everyone else is. I have made my family pick out colors, windows, doors and lights. There are too many to choose from, it makes my head spin and makes me a bit crabby :) While the windows were being replaced Brooke had to be elsewhere. So we did alot of traveling back and forth to my moms. But all my little ducks are once again home and I LOVE it!! Thank you SOOO much to my parents, Brent, Lynn, Mary, Bob, Michael, Beth, Jamie, Sheri, Jon, Scott, Mark, Lisa, Bradley and Ryan. We are so blessed with family and friends.
Leah had a sleepover this weekend. We managed to get the basement finished so the kids can play down there. Watching and listening to 4, 11 years old made me laugh. The girls seemed to have fun.
So with all that said, it's been a busy weekend but good. Everyone seemed to have fun. I was only told twice I was getting crabby (those were the people brave enough to tell me :) and now everyone is back home. Steve is working like mad trying to get the crops off and the house is getting put back together.
Brooke has her butt scoot down to a science. She is a mover and a shaker. She still REFUSES to get on her knees or stand on her legs. She is able but not willing. We hope she will change her mind. She has been putting more things in her mouth. She sucked the cheese off Mac n Cheese and she sucked on a sucker. All good signs. We also realized she has been doing sign language the past couple weeks. Her speech therapist taught her. However I am not here when speech is so I couldn't figure out what she was doing. Leah and I googled sign language and found Brooke has been signing "eat" and "more". Which is funny because she doesn't want to eat :) I talked to the therapist today and she confirmed she taught Brooke that 2 weeks ago. What a smart child we have :) (She also signs "monkey". Leah and Meg taught her that).
With so many people and kids being ill the doctors have been a little protective of Miss Brooke. (As have most people we know.) Everyone fears the worst. Obviously we have to be smart, we don't take her out, and the girls are careful, but that is all we can do. I don't feel that type of fear is from God. I have utmost confidence He will care for all my little ladies. Since their future is already planned I can only pray and enjoy them. My sister in law and I have talked alot lately about peace. And the amount of peace we have when we give it ALL to Him. That is the tricky part. Giving it all. Sometimes we need reminders which is why we are blessed with surrounding christian support. WOW, have we ever been blessed with that support! Thank you all!! Thank you Jesus!!!!

Clinic Day

Brooke did well today at clinic. Dr. Mageed saw her in the hallway and said "hi Brookie" and she screamed. She has got to get over herself! However, Nurse Lacey and Amy the NP saw her and she was happy. We are still trying to get her over her frustration with people she doesn't see everyday, but that will take time. Her labs looked about the same today. She got a Synagis shot to protect her from RSV (a respiratory infection we don't want) and she got the H1N1 vaccine. All the girls got that today, so we feel very fortunate. I told myself I wasn't going to get crazy about finding that vaccine. If God wanted the girls to have it, it would show up. And I got a call today they had it for all the girls. Our wonderful pediatrician's office gave Leah and Brooke their shots in the van so we didn't have to bring Brooke in. It's like the drive up window and McDonald's. :) Thanks Nurse Nancy!!!!

Today I heard a song I've heard hundreds of times. Garth Brook's, Unanswered Prayers. I'm sure most people know it, but it says, "sometimes I thank God for unanswered prayers." I was thinking today, when Steve and I found out we were having twins everyone couldn't believe we didn't find out what we were having. We said, "we just want them to be healthy." That was our prayer. Two babies healthy babies. Obviously God didn't answer that prayer completely BUT He showed us so much more. We are blessed more because of Brooke's illness. I have gotten to meet people and witness their faith, when I had no idea that they were even Christians. I've gotten to have conversations about true faith and peace in life. Steve and I have gotten to watch our 3 little girls prayer lives become so genuine, real and true. They pray and believe from the bottoms of their hearts. God has shown us a path that we never would've been blessed to see, and I think of all the things we would have taken for granted. Thank you Lord for not answering our prayers our way.

Brooke fell asleep on the floor and Macy had to check things out :)

Grandpa Koeman took the girls to the Dunes for some Sunday fun. Thanks Grandpa!!

Happy Halloween

HAPPY HALLOWEEN! Leah (the nurse), Ash (the bunny), Meg (the Angel), Macy (the chicken), Brooke (the bear)

Carving Pumpkins. Brooke had to scoot in for a peek.

I hope everyone got their fill of costumes and candy. We did! Wednesday night we went to Trunk or Treating at church. We got some good laughs from some costumes there. Saturday night we made our rounds to family and friends. I always enjoy going to see people and chat. It's as much fun for me as it is the kids. I also enjoy eating the candy when the girls go to bed :) (my poor kids.)

Brooke had a rough beginning of the week but she seemed to recover the end of the week. She got Pentam (an IV) , flu shot and pneumonia shot on Monday. Something seemed to upset her with one of those. She was very crabby, only wanted to be held and wouldn't move around. Frustrating! I told her she had til Friday to straighten up and I was calling the MD. That must have scared her :) She's back to her old self.

Ashley had her last soccer game Saturday. A little chilly but she did great. She likes to play sports and all her sisters were there to watch.

Steve got back into the fields on Saturday. He said it wasn't as muddy as he thought it would be.

So far everyone has escaped any really bad illness'. Some colds here and there but that's it. I've been hearing of some really sick people so we don't venture out much. Brooke went outside to the soccer game and she didn't even complain of the cold (unlike her sisters.)

Enjoy the nice fall weather (when it's not raining). I was reminded this week by Leah what Fall smells like. We were outside and she said, "I like the smell of the dryer." She was right. Too fast we don't take time to enjoy the smells. Steve and his dad have the dryer running with corn/beans drying. To us, that's the smell of fall!