I've been trying to post a video of the twins singing "Jesus Loves Me," SO CUTE, but I can't get it to work. I'll have to have my tecky husband try :)
It's been an uneventful couple weeks. It doesn't seem like I have alot of down time these days which is ok. 2, 2 year olds keep us busy, let alone 3 other girls :) Leah has been babysitting. I even got a call from a mom about what an awesome babysitter she is. Ashley laughed and said, "whatever!" Sisterly love! Where did the time go!! By baby, is babysitting? And why does she clean up other people's houses but not ours??? So many questions :) But she LOVES it! She loves kids! (wonder where she gets that from)
This week we got introduced at church. I SO MUCH wanted to take the twins! I can handle not taking them to stores, schools, or anywhere: but not going to church as a family bugs me. So, in my head, I thought we'd all go. Even the PA at clinic said, just take Brooke in with a mask on, once you are introduced go out with her. Steve was like, "NO WAY! GERMS!!" So I was thinking, at least we'll take Macy. Wednesday Brooke came down with a low grade temp and crabbiness. Thursday night she was up for 3 hours, dry heaving and crabbing about everything! Friday we went to clinic. All seemed pretty well. No surprises. Saturday Macy starts puking!! Saturday night I felt like I was running a race, the minute I heard the heaving I RAN from Macy to Brooke!! Oh the puke :) So to say the least, God had other plans. The twins did not go to church. It just isn't the right time. It's amazing how the 2 ladies that stay home so they don't get sick, get sick!! Being exposed to germs is what builds your immune system. Obviously for Brooke that isn't possible, but poor Macy is along for the ride. So the wash is done, and the puking is at bay, for now. Steve was hunting for a few days, so I felt bad for him when he had to come back to this mess. He said he didn't mind :) I like to have it all "under control" so he doesn't worry when he's gone and just relaxes. Sick kids is not under control :) He said he still had fun, and we were all excited to have him back home.
Brooke's next clinic visit is the week after Thanksgiving. They plan to see her Monday and Friday that week to draw blood for T cells. They have to draw so much blood they need 2 separate draw days. Please pray for 1 poke. This week they had to poke her 4 times to get blood. She was a trooper but we HATE to have to do that. As always, pray for BIG NUMBERS. We hope to get numbers back before Christmas. I still have to get ingrained in my head "this is LIFE LONG." So we don't plan on complete healing, but stability would help us to be at peace.
Have a great Thanksgiving! Don't forget to give thanks to the Great Provider for all He has done for us. Things big and small. We so easily take life for granted!!

We've been trying to post pictures and it hasn't been working. FINALLY Steve got it to work. YIPPEE
Bruiser ! Brooke took a tumble and got a beautiful black eye! Steve and I were at Small group and Leah called that Brooke fell. I came home to see if everything was ok. Leah had everything under control, ice on it and had Brooke laughing. Poor Leah felt so bad. She said, "I feel like it's my fault." I asked her if she punched her or pushed her. Leah started laughing, and said "no why?" THEN IT'S NOT YOUR FAULT!!! We all try so hard to protect these little ladies. We can't! Brooke is a two year old on blood thinners. What a dumb combination! So this is a prize! The 1st black eye of the Koeman ladies! Whoo hoo!!

Halloween pictures. Brooke was a Rooster. She says a mean "cockadoodle doooo"

The ladies with Great Grandpa and Grandma Brouwer!

Great Grandpa Lubbers

My devotions again really hit me and I wanted to share. It said, "People tend to think their circumstances determine the quality of their lives. So they pour their energy into controlling those situations. They feel happy when things are going well and sad or frustrated when things don't turn out as they hoped. " "It is possible to be content in any and every situation." "Put more energy into trusting me and enjoying my presence."

Philippians 19 : 12 I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. 13 I can to everything through him who gives me strength."

I just thought how this relates to everyone! The mom with busy kids, school things, house duties: the busy work schedule: health issues: etc, etc. Things that are out of our control. So why try and control it. All we can do is our best. And if that is done, then we will be at peace. The peace that God gives us for a job well done!

Time goes on........

Not much new at the Koemans. Steve is done with harvest! WHOO HOO!! That is a huge relief. This is earliest he has ever been done. Everything cooperated, even me :) (that's unusual :) The girls were excited to have him home. Since Steve was home and he says he's NEVER been trick or treating in his LIFE (poor boy), we took him trick or treating. Steve's grandpa recently moved into an assisted living so we went there to visit everyone. The girls had a riot. There was even a haunted house. Oh boy!! From there we went to my grandparents and my parents. Halloween for me when I was young was about visiting people. We'd go to a house and talk for awhile, then onto the next. As a child you want CANDY, but you realize when you get older how the visits mean so much more. So I hope to instill some of that in our children. That maybe we can bring a little joy to others on this silly little hallmark holiday.

Other than that, Brooke is doing well. She had a little fall, so she has a black and blue eye. Steve took her to her appts today. Blood draw in 1 try, YIPPEE!! Then Steve took his ladies (Macy and Brooke) through the McDonald's drive through, french fries in the truck, and then to their next appt. The endocrinologist didn't have much to say. He said, yup she's small. He claims they can catch her up at any time, and now is not the time. It seems lately NOW is never the time. This kid has things wrong with numerous systems, but we need to wait because the system she needs the most (immune system) is taking it's own sweet time. So we wait. We can do that. We are really good at it. :)

Steve and I are planning a vacation. Yes, that's right, leaving the chaos for a week. I must say this has tugged at my heart, but I have been informed, it's time. My parents are planning on moving in and taking over with the help of some friends, aunts and more grandparents. :) This is a group effort. It's hard to give up responsibility. We have been responsible for all of our children since birth, actually before. When your children are healthy you take it for granted. You go about your business and assume everything will be fine. When you have a special needs child, you error on the side of caution. Your mind is always going, what's next, what hurts, what's broken, what's wrong now. I can't say it makes us anxious or bothers us. It's just our new role as parents and we are completely at peace with this. However to hand that responsibilty to someone else is difficult. First of all, because we feel it's our job and we love it. Second, because it's our routine. It's what we have done for 2 years. We are a team and we've been married so long we actually don't have to speak and know what the other is thinking :) So, this team is taking off. We are heading to Florida in December. The girls are excited and we know they will be well cared for and loved. This will be good and fun. (I'm convincing myself, hehe) And I guarentee we will be ready to come back home and hug them all. We've already started talking to the MD's so that we can get things done before and after we leave. This little girl takes alot of planning :) We are just a flight away.

Happy Birthday Sweet Girl!

Today is Leah's birthday! 12 years ago today she came into our lives and rocked our world. She has brought is more joy and laughter than I ever thought imaginable. We enjoyed her so much we went on to have 4 more :) I hauled out the baby book today. We all gathered round and LAUGHED!! I don't feel like I have changed a bit. The pictures show differently. The girls love our hair styles, mainly mine :) They laughed at my glasses. I remember the feeling of inadequacy bringing home a new baby. I remember telling Steve that, and he reminded me, I was a pediatric nurse. I worked for the pediatrician. That still didn't change the feeling of, what if I screw her up! This is a LIFE I am in charge of. Not sure that was a good idea. Leah stormed into our world with a take charge attitude. She was in charge and was not afraid to let us know. Our goal was to channel her ambition for good and not evil :) I look at her 12 years later, and I am SO PROUD!! She is growing up into a beautiful young lady, with such a love and passion for life. We have a few other girls that are "storming" our world, at this time. I am much calmer this round, because I see what they have potential to become. And I see wonderful paths in Leah's future.
Have you ever wanted to beat someone up? At Crazy Bounce you can :)
Yes, we bought the girls a B B gun! Say some prayers, hehehe


With that said, guess what we did today. ATE CAKE! For breakfast, snacks and in between. We went out to lunch with their cousins, Bradley, Ryan and Seth and to Crazy Bounce. I encourage anyone to go there. It's great fun! And as parents, DON'T SIT AND WATCH!! Heck, leave the kids home and go with your friends. It's a great time :)

I LOVE picture of sunsets and harvest!! It's the best view around!


This is how the girls and Steve told the MD from Spectrum where the field was.
The rest of our day consisted of a MD from Spectrum and his son coming to ride in the combine. Doesn't that sound funny. It struck me as funny, but we told them, if you ever want to come out, we'd love to have you. Bring your kids! Now I am not one to get nervous about people coming over. I don't clean my house when people come over, (not even my mom, sorry mom). We try just to be ourselves. I use to get uptight about things like that. My husband has since in grained in my head, if people come to see our house and snoop around, they aren't our friends. We are who we are. However, this made me nervous! The people that gave us our daughter back are coming to our territory. So Steve said, I better get pizza. I also made cookies. No wine and cheese for our guest. Just pizza, pop and cookies. We are who we are; simple people :) It was fun. The girls made a sign and put it by the road so he could find us. When you aren't from the country what combine do you pick! There's LOTS of them. He and his son ate pizza with us and rode with Steve for the night. He's a normal guy, a wonderful dad. Like my dad says, "puts his pants on one leg at a time." It was fun to hear his story and about his family. Everything is always about Brooke when it comes to MD's, so it's fun to see the other side of them. Brooke wasn't all that thrilled about him coming out. I told her that the doctors kept her here with us so she can live a long life. And I am not kidding at all that she looked at me and said, "that's nice." WHAT!! Was she serious or sarcastic?!?! I don't think 2 year olds can be sarcastic, but she heard someone say it. Oh boy, we have our work cut out for us :)

This is what Brooke spends alot of time doing these days. Nebs, or smoking her pipe, we call it :) But her cold is getting better and the MD said the virus' they tested for were good. Yippee!

Blogging Neglect :)

I have had great intentions of updating the blog but farming comes first :) As Steve is out raising and harvesting wonderful crops and I am at home raising a crop of our own, kids :) Steve's dad asked today, "how's it going?" "good," I said. He questioned me and I laughed. OK it's CHAOS!! But all good for the most part. We have our share of tantrums with Steve being gone. Girls wondering how far can they push mom before she breaks, but I've been trying to be creative this year. Stay one step ahead of them before the take me over. Overall we've had fun, and the weather has been great for farmers. Happy farmers happy families :) Every morning Brooke and Macy get up and say, "daddy bombine?"

Last week we got to go apple picking with friends. The kids had a riot and Ashley pulled out a tooth! The tooth fairy even came! I'm glad she remembered, sometimes she forgets the Koeman house and then has to make up a ridiculous story about where she was :)

This week Thursday is Leah's birthday. We had a party last week with the Baumann side for her and her cousin Avery. Oct 21, we get to eat cake for breakfast, YIPPEE!! Not sure if I should buy an ice cream cake or make one. We'll see what Leah chooses and what the day entails :)

We do try and get out to be farm girls once in a while. So we head out to the fields to play and ride with Steve. I wonder every year why my children INSIST on wearing flip flops or no shoes in the field. It's dirty and they LOVE it. All you can do is laugh.

Other than that things just carry on. Brooke goes to clinic weekly and gets blood drawn. This weekend she came down with a bad cold. She's been wheezing and coughing alot. She still acts fine, so we started up her nebs again and keep pushing in the feedings. The other night Leah, Megan and I were talking (imagine that, talking in a house FULL of girls :) The conversation lead to Brooke and how sick she had been. Megan said to Brooke, "Hey Brooke, thanks for staying alive." Brooke looked up at her and smiled and said, "you're welcome." She acted like she understood and maybe she did. I laughed and thought, this conversation is wrong on sooo many levels. I typically blog about Brooke, her progress, her declines, her achievement's. When you stop to think, the rest of girls are enduring just as much if not more. They are amazing sisters. They love unconditionally when it must be hard. They see all the places that everyone goes as family's and they don't complain. They don't even ask! They know Brooke can't go and they are ok with that.

So nothing much is new. We have the everyday funny's like beanie babies in the toilet, highlighter on the baby's head, golf balls down the register and the list could go on. But that's good. I thought a year ago I would never see the mischief, so I will welcome it with open arms. I got into an online group with all SCIDS patients, thanks to another SCID parent (thanks Aaron). It's good to see how other parents are coping. It made me realize, this isn't going away. This will be a life long battle. But it also made me realize it can be done. Brooke will go to school, because we want her too. We will be neurotic parents and we will protect her the best we can. That's what this deficiency does and it can be done. Brooke isn't "normal" but as a family and community we will embrace her, her illnes and her siblings and carry on. Thanks to God for His grace and mercy every day.

The results are in....

MY LADIES!!

A day of testing and IV's. Poor kid! After the 3rd try an IV was put in and her testing accomplished. Luckily her IV stayed and they were also able to draw her blood work off if after her test. This round of T cells is complete. The last test was normal. Yes I said n o r m a l :) That seems abnormal in so many ways. Nothing of Brooke has been normal yet. That is a good sign. It means that the immune system Brooke has is working as it should be. This is still just a piece of the puzzle. She still doesn't have the whole puzzle, but the small piece she has is working. Steve and I gage our excitement on how the MD's react. I didn't see anybody that was over joyed today. I saw happiness mixed with reservation. Maybe even slightly perplexed. This isn't normal and there is no book to go by so we learn as we go. In actuality I'm not sure when or if we will ever feel "safe." We are constantly waiting for "what's next."

I did ask about restrictions. I am starting to think I am paranoid and I told them that today. We are ok at home protecting her, BUT if we are turning into psycho parents I need to be steered in another direction. As of today the doctor was not ready to let her free into the world. He said, let's stick to what has worked so far. She hasn't gotten sick so why test it. They test her again in about 6 weeks. So a step in the right direction.

CAT scan: that showed some slight changed. The fibron sheath they had seen in the previous studies was gone. However her vessels still had some narrowing. Her blood work that showed is going down (which is the right direction.) It still looks like she had a clot of some sort and the lovenox injections are working. So we stay on the shots for 3+ months. Can't say I'm excited about it, but things could be worse.

Her new tricks are "running." She says, "watch mom watch," and she takes off across the living room. She's so small it's funny to watch. She also ate some hot dog tonight. Let me define "some." It was like 2 bites, baby bites :) So she can't live off what she eats, but she ate food, not fuzzies, marbles, bouncy balls or anything else non edible, she actually ate FOOD. My nephew calls hot dogs, "barf on a a stick." hehe, oh well, it's a start. Slow and steady wins the race.

1 Thessalonians 5:18 "give thanks in all circumstances: for this is God's will for you in Christ Jesus."

Oct 7 Jesus Calling " Accept each day just as it comes to you, remember that I am sovereign over your life. Rejoice in this day that I have made, trusting that I am abundantly present in it. Instead of regretting or resenting the way things are, THANK ME IN ALL CIRCUMSTANCES. Trust me and don't be fearful."

What a great reminder of how to live our lives. THANK YOU JESUS!! We see improvements and we thank YOU for making them possible!!

Another week down....

Harvest is in full swing :) I wanted to post pictures of the girls on the combine but I'm not sure where they put the camera. What's new?!?! Steve is working like mad and enjoying the weather. The dry weather has been a blessing. I figured out tonight how difficult it is on 2 year olds to have dad gone all the time. The twins get into trouble on a good day but tonight was AMAZING!! We had friends over to talk about a small group. So, of course, I want to be part of the conversation. Macy and Brooke were in the toilet, on the counter, writing with markers, at one point Macy was trying to cut Brooke's IV line with a safety scissors (good thing that didn't work :) Brooke had been telling us for hours the IV was done and she wanted it off, smart kids. Anyway, I was having a hard time figuring out what their trouble was, they never act THIS crazy. They usually ham it up. Once everyone left, Macy calmed down and cuddled, Brooke calmed down (took her a little longer :) snuggled in dad's arms and feel asleep. I figured it out! We took their dad away from them. They get to see him 1 day a week and they had to share him. To say the least they got their point across. Steve's mom always said, she use to have kids potty trained and once harvest hit they'd regress. What do you expect! A few more weeks and they'll have their dad back. I'm just happy those combines are big enough to hold a few kids at once :)
This week: Brooke has testing on Wednesday. CAT scans and ultra sounds. If her stenosis in her veins is getting better we have to do the shots for 4-6 months (not the end of the world, she's getting use to them.) If it's not getting better then we stop the shots and she has narrow veins. So it seems we want the treatment to work. His will be done! We will do whatever is asked. They should give us the rest of her T cell numbers to. They did call and say the numbers were up, so Dr. Duffer was "very very happy." :) Ok then, I'm "very very happy too." Brooke is her own woman, perfect and feisty in every way. Along with her partner in crime, Macy :)
Have a great week! We'll keep you posted!!