Romans 15:13 (New International Version, ©2010)
13 May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.
It was only fitting this week that the day of grandpa's funeral my devotions were on "hope." It talked about how people think hope is "wishful thinking." " Nothing could be further from the truth. This hope keeps you spiritually alive during dark times of adversity: it brightens your path and heightens your awareness of My Presence. My desire is that you may overflow with hope by the power of the Holy Spirit." (Jesus Calling devotional)
Obviously we are all sad grandpa is no longer with us here, but what an amazing reunion he is having. We have hope that we will again be with Him. I am even amazed at the hope our children have. The way they pray, grieve but always turn to our eternal hope that this is our temporary home. I take it for granted that this is how I grew up. I was given the gift of hope at an early age, and I am attempting to give my children the same gift. However there are so many people out there that don't have the peace and hope this Christmas. I've seen some of this 1st hand, and it's SOOO unsettling to me. I feel like I've been in my little bubble (which I have been) and haven't seen the others hurting and not even being aware of the peace and hope of Jesus. That gives me a goal. Something to strive for this Christmas. I am so blessed that I was given the BEST gift, I pray I can pass it on. HOPE!!

I pray everyone has a blessed Christmas week. It's so easy to get caught up in the busyness and schedule. We have to remember we are in charge of our schedule. We make it! If it's too much, change it! Focus on Him :)

Surreal

Well, we did it! Miss Brooke got better, we met with the MD's and then we left for Florida. It was ok to leave. The girls did good and it was fun to relax. The weather was 60's to 70's, which is perfect for Steve and I am good with that. The highlight of the trip was going fishing and going to eat at the Crab Shack! I LOVE crab but it's not something we get out to eat. So Steve took me out and I was on cloud nine!! I savored every bite. Then we took a boat about 15 miles out and went fishing. There were 17 people on the boat. It was unreal how many fish we caught. The minute we put the fishing pole down the fish were biting. Steve ended up getting the biggest fish on the boat, a 20 3/4 " grouper. We were all a little sad because that meant he got the $ pool, but at least we got to eat the prize and it was YUMMY. We got back today and it is WONDERFUL to be back and hug the girls. We missed them SOOO much. I realized so many things. 1st.......I am spoiled. I have been told this for years (from my husband, and I have not denied it :) but he is spoiled too. My parents moved into our house and took care of 5 kids for 7 days. Drove them all over, cooked, cleaned, went to concerts, loved them and tucked them in every night. Steve and I got to go to their condo in Florida with friends, hang out and have fun. We came home and I cried when I saw the girls. I missed them so much!! When my mom and dad left the girls hugged them and clung to them and my mom cried. They are SOOO loved, spoiled and BLESSED! That was the other reminder I had this week. How blessed we are! I was excited to go away but I can't say we needed to go away. We are so blessed with our life and God has brought us down such an amazing path. By being able to go away, I was reminded how richly God has blessed us with 5 amazing kids that are full of love, by jobs that we love and work well with our family, by family that work with us and care for us and that God brought us together so young that we get to be on this journey together, hopefully for a long time. I can't imagine walking this path without each other.

Steve's big grouper! Look at his friends behind him. jealousy :)

My blow fish! What a funny fish.
With all that said, we are all rejuvenated, even the kids. Grandpa and Grandma will recover this week (just kidding, they looked good) and we are excited to get back into our routine. Unfortunately Steve's grandpa passed away on Friday. The girls were so sad when we told them today. Grandma passed away 3 months ago, so they are together. We have hope, we believe and we know they are in Heaven together. God Bless you Grandpa! Thank you for all the smiles, love and hugs.

Grandpa and Grandma Together! Love you Both!!!!

Home!

We're back! Last night they tried full strength feeds on Brooke, that didn't go so well. She had some dry heaving, gagging and alot of diarrhea. The good thing they got the stool studies and she doesn't have any of the virus' we were thinking. She does have some sort of stomach virus, but the only thing to do is wait and keep her hydrated. Today we went back to 1/2 strength feeds and she tolerated those, so we will continue to try that through the weekend, then bump her up as tolerated. She also had a CAT scan. Her chest looked good. It did not show any blood clots, so the MD's have to decide if we continue with her blood thinners or stop them. We'll see what they say next week. They also did a CT of her sinus' and that showed a sinus infection. She will start an antibiotic for that.

The poor little lady has, rhino virus (the common cold), a sinus infection (probably from the cold), and stomach virus. That sucks!! When ya look at all that, she acts really well. She is happy to be home and fighting with her sisters. Our hope is by Wednesday she is back to full strength feds. That is the day we follow up in clinic.

We are blessed beyond comprehension with family, friends and caring people surrounding us. The Spa crew is amazing! So caring and compassionate. Everyone has expressed how sad it is that we were at the spa on Thanksgiving. It's really ok! First of all, Brooke hates to eat, so a big meal would not make her happy. Second, the nurses have to work and we'd feel bad if they were all alone. The only holiday Brooke has not been inpatient yet is Memorial day. She tends to like festivities up there. However, the real reason it's "ok" is because we have her! When you spend anytime on a Children's cancer floor you see devastation. You see families that don't get to keep their children. A mom told me once she would do anything to sit at the hospital and hold her son. She said, "those were the good days because we were together." So together it is! It doesn't matter where. We can make turkey any day as long as we are together. There is always something to be thankful for. Sometimes we just have to look beyond ourselves!!

Still here...

What I am Thankful for!!!!!!!!!!

Day 2.......still here. Steve and I both knew that the big man, aka Dr. Mageed :) wouldn't let Miss Brooke go home so soon. As much as we want her home and she is doing well, she has not tolerated full feedings yet. She had half strength feedings today and they went well. Tonight we tried the full strength formula. She made it through half of the feedings before she started dry heaving. So not sure what that means yet? It means she isn't 100% yet, but she's getting there. This morning Macy got up and checked Brooke's bed and the pack n play, then walked up to me and said "mom, where's Brookie?" OHHHHH!! Poor honey! Macy and Brooke did chat on the phone and we all came up this afternoon so Steve and I could switch spots. Brooke cried when they left and said "I go to!!" She loves her sisters so much. Overall she is doing well up here. She doesn't seem to mind too much. Unfortunately her IV didn't last and they had to put a new one in this morning and they had some issues getting her labs, but we hope we can prevent some of that tomorrow. They are checking into a CAT scan tomorrow. I assume it's to check her veins in her neck (because that's what they always check). So we'll see what tomorrow brings.

Steve told Brooke she was having a "picture" taken today and they did xrays. Now she HATES pictures. :)

"When your mind is occupied with thanking Me, you have no time for worrying or complaining." "Draw near to Me with a grateful heart, and My presence will fill you with joy and peace."

1 Thessalonians 5: 16-18 "Rejoice always, pray continually, give thanks in all circumstances: for this is God's will for you in Jesus Christ."

It's always a great reminder! God gives us our guides and answers in times of trials. We just need to remember to look to Him. What a perfect day to do that! Today and everyday.

Happy Thanksgiving! (almost)

Thanksgiving is around the corner. It took me a while to figure out why people kept posting on Facebook things they are Thankful for. I think Thanksgiving just snuck up on me. I can't believe the Holidays are here! When I was in middle school and high school I can remember thinking time NEVER moved! I would be stuck that age FOREVER!! Now I can't slow it down. I don't care if I age so much, but I LOVE the ages of my kids and I want to soak it all in. There is always something to laugh at, or someone. I am thankful for each and everyone of them. For teaching us daily about how to be parents and how to allow God's love and grace to lead us through each day. I'm thankful for our parents, for solid christian upbringings, unconditional love and support. My parents have been my rock! They believed in me, when I didn't believe in myself. They listened, cried and supported me. My dad always has a "phrase" (either real or made up :) telling me how I CAN do anything I put my heart and mind to. I want to be that kind of parent to my kids.

Onto Miss Brooke......I actually typed this yesterday but didn't post it. So today I must edit :) Brooke has had a virus brewing since last week. We thought she was teething, then realized when Macy was heave hoeing that is was a stomach virus. It's been a little rough the last couple days trying to keep fluids down her. She's had diarrhea and dry heaving. So we open her stomach button and out comes the goods. Today she laid around. She moved from living room to kitchen to bathroom floors and just slept. As bad as it sounds, she actually looked pretty good. So do ya call, or wait?!?!?! Macy got over it in 12 hours, Brooke was working on 6 days. OK I called but said, "she is not admission worthy." Well I don't make the final decision, I just drive her around :) So she's going to hang at the "spa" aka, Devos Children's hospital, only for a day or 2. Get some fluids and then we can restart her feedings in the morning. I was there with her and Macy all day. Macy was AMAZING! She hung out with her sister, they played and held hands. So cute!! Steve is there now and if she doesn't come home tomorrow we will switch and fall back into our routine. She really does look good. Steve said she even ate a potato chip! I still don't believe him but whatever!!

So Thanksgiving may not be as we planned but that's ok. It always works out and we are at peace by getting this taken care of. Get her a little tune up and back at it. I am so Thankful to have the Spa so close and to have MD's, PA's and nurses that care and feel like family. We love them all up there and are so blessed!!

Nappy time!
The girls hanging out! They always find something to do.

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!!

Steve's grandma went to be with the Lord on Friday. I got the privilege of seeing her a week ago Monday. She asked me how I do it? I asked her how she did it? :) She raised 8 children, 1 of them special needs! I only have 5, with 1 special needs! She said, "I just did it." Grandma was a caregiver all her life. She cared for her siblings, she cared for her children, she cared for her special needs child until Bev passed away in 2003. At that time, grandpa's health was failing, so she cared for grandpa until she got ill 3 weeks ago. She hauled wood, she canned, she made pies, she cooked, she cleaned, she was constantly going. And I never once heard her complain. Together grandpa and grandpa raised 8 amazing kids. Is was a privilege to see them all work together this week as they reminisced, made plans and took care of grandpa. They take AMAZING care of grandpa. A few things struck me this week. At the graveside service we said the Apostle's Creed and sang hymns. How many families now days can do that and know the words? Ours can! Steve and I are quite "old school" and that was a proud moment when you looked around and the old to the young knew the words and it really felt like it was from the heart. They raised their children to love the Lord and share that love.

As a family with a special needs child you wonder, how will this affect our children? Will they grow up successful, will they resent all the time we had to spend at the "spa", where will their hearts be? I obviously can't say for my family just yet, but I watched a family this week that is GREAT! They care for each other with love and compassion, they are successful in so many ways.

Love.......is it easier to loose a spouse when you are young or old? I've heard people ask that question many times. I don't think there is an answer. Anytime you lose a spouse, it just isn't right. Grandpa and grandma had been married for 65 years! What a milestone! There were postcards that were between grandpa and grandma when he was in the war. He called her his "sweetheart." To watch this sweet man hold his wife, tears streaming down his face. All I could think is, "it's not fair!" No matter what the age is, It's not fair!

Obviously grandma was an amazing woman, wife and mother. What a wonderful role model and something to strive for. God Bless you Grandma! Thanks for being a Godly woman for us to follow.

It's all good

Hebrews 11: 1 "Faith is being sure of what we hope for and certain of what we do not see."

Jesus Calling devotional said " Trust me and refuse to worry. I am your strength and song.........I can empower you to handle each task as it comes." Obviously there is more, but I think you get the point. I actually was looking up another verse this morning and I noticed I had Hebrews 11:1 underlined. When I did this I have no idea, but it was meant to be read this morning.

Yesterday Brooke had appointments (of course, when doesn't she :) 1st was the surgeon. I did apologize for canceling the tests he had scheduled. After talking to him he agreed Brooke does not need further testing. She does have a hiatal hernia, which means part of her stomach is pushing up through the diaphragm in her abdomen. Many people have this and hers is from her nissen. But she is having no symptoms, she's not refluxing more and not vomiting. We agree if she starts to have symptoms we will call him. If not, then we'll just wait.

On to clinic......she is still on blood thinners and will be until beginning of October when she has another CT. From past blood work it looks like she did have a blood clot, but the CT will be the proof. With the tantrum I had about starting her on blood thinners I guess I have no comment (hehe, what can I say) :)

On to T cells. What do you do when the MD comes in, sits down and says in his little accent, "Shelly I don't know what to say?" I just smiled :) It seems Brooke has puzzled them again. Many of her T cells are going up. Her B cells, which they thought may never en graft have made a huge jump up. However her donor cells (Megans) were at 85% and are now at 20%. Also her over all TREC was at 498 and dropped to 150 (that's not good). They are getting such mixed signals the MD's are confused and don't know what to do. There are 2 things that may be happening. She is either going to reject the transplant and start making her own T cells. Or she is going to reject her transplant and we are going to see all her numbers drop. Steve put it a good way. It's like our safety net has been taken away and now we are waiting to see if Brooke is going to soar or fall. The MD said IF she starts making her own T cells this is VERY rare. He said it's more like a miracle. We are up for miracles :) Fly Brookie Fly!!

Steve and I were discussing our child and I said, I felt worse for the MD than for us. They want so badly to have answers and fix her. It's hard for them to not know what to do. I reassured them, it's all good. Of course we want her fixed but at this point every one's hands are tied. All we can do is wait. Steve and I don't see numbers when we see Brooke, we see a perfect child made in God's image. Dr. Duffner and I also talked about treating the patient. When you look at numbers you get worried, but when you look at the patient, she looks great. She's walking, she talks, she's doing great. Until there is a change in her condition, we just need to hang tight. Of course during our 30 minute conversation Brooke had to cough a couple times. He asked when that started. I told him, "it's Brooke. She's been doing that since birth." :) So I had to promise if she has any change in her condition I'd call right away. Worry warts :)

So, I assume we will be in clinic again next week. Have a great week! This weekend is the Breast Cancer walk/run in Grandville. YEA for all the breast cancer survivors! Leah and I plan to be there for Grandma Koeman and Grandma Blueberry! We've seen fighters and survivors 1st hand. And we are so blessed by them!! Thanks mom's!!

Walking

HERE IT IS!! Hopefully our next milestone will be no more diapers :) (wishful thinking)

God's Plan

Do you ever wonder what God is doing? Friday was my work day and the "spa" needed Brooke there at 12:30 for a lab draw. It would all work out, I just had to be organized. So I had everything ready at night, diaper bag, clothes laid out, backpacks ready so all 7 of us could be out the door at 7:45a. I got up at 7a (we aren't early morning risers :) to find Miss Leah on the couch all cuddled up. She didn't look so good. She was HOT and glassy eyed. She had been hanging out since 6am. She said she had a sore throat, and wow did it look gross. Steve and I went to get ready and Steve said, "now what." I just laughed. I said, "no problem." I didn't have a plan but I have a great gift of self talk. I can talk myself into thinking anything is ok :) So in the 45 minutes we were up, a new plan came together and it all worked out. Grandma's for the girls and Leah til 11a. Steve and I worked, then Steve went to Spectrum with Brooke and I to the MD with Leah. We all met back at home. Leah is on antibiotics and we pray gets better quick. It bothers her so much when she can't be around Brooke, but today she felt so bad she didn't want to be around her.

Brooke: they are increasing her blood thinners again and we check her blood work again on Tuesday. She also see's the surgeon on Tuesday for her nissen. They wanted to do testing to see to what degree her nissen(the surgery she had so she cannot vomit) had loosened up. But Steve and I didn't feel testing is necessary. There is no need to change anything right now, so the less testing the better. We have found we need to be her voice. I think some people are getting sick of hearing us :) Dr. Mageed is also waiting on all her T cell results and then he will send them out to his posse of MD's to be reviewed.

ALSO, Brooke's neuro-developmental MD called me today. (a side note...I LOVE Spectrum because the doctors call me. Not that nurses aren't great! But sometimes I want to hear it right from the MD or PA) Anyway, I told her about the feeding issues and stopping the feedings. She said, "yeah, we aren't going to do that." She confirmed all my fears. She said Brooke will starve herself. She's done it before and will do it again. She will get dehydrated. And now is not the time for "tough love." Yea, we aren't bad parents :) She was also speaking from experience. She said she had tried this before. With "normal" kids this works, they will eat. With not "normal" kids this won't work. She said she has seen kids in renal failure due to dehydration and stress fractures from not the right nutrients. As much as Brooke looks normal (at least to her parents) she is not normal on the inside. Her insides are messed up more than we can fathom. We need to be cautious of this and move forward accordingly. That just put my mind at ease. When we see her in December we will discuss feeding options, clinics and see if it's time.

Today, Saturday, Brooke started walking for REAL!! Across the house she goes. I've been trying to download a video for an hour and it's not working. I'm bummed! She's taken steps, even gone 5-6 feet but today she went from 1 room to the next, laughing the whole time. It's a strange feeling. Steve said, "that's it, all our kids are walking." It's amazing how perspectives change. We didn't know if she'd be here, let alone walk, but it's another mile stone we got to see her and Macy do. The best is when Macy takes her hand and away they go. YEA GOD!! We are so blessed!

Brookie's belly. All those spots are where she gets her lovenox injections. She actually hardly cries at the injection anymore, just the fact it's going to happen. Now her belly looks like Uncle Jon's. Except he doesn't have a feeding tube :)

Leah on the couch sick. She will KILL me if she sees I posted this. HEHE :)

Steve's new combine. He wouldn't let me put a picture of him in but he volunteered this photo :) If anyone needs combine rides, it'll be starting soon :)

Have a great weekend. Pray for NO MORE RAIN!! Time for those farmers to use the combines.

Blood draw

The clinic visit was quick. Brooke and Macy hammed it up and showed off. Brooke's blood was not in the range they want it so they will increase her Lovenox dose and we will recheck it on Friday. The plan for Lovenox is to give it for 3 weeks and then recheck a CT scan. If the scan is unchanged we will stop the Lovenox. If the CT scan is better we will do Lovenox for 4-6 MONTHS. Yes, I said MONTHS! Not sure what to pray for so, His will be done, and I will do what is asked with a smile on my face :)

Her T cells...........she has once again stumped the BMT team. Her T cells have increased.. YEAH!! Not sure exact numbers yet, but they are higher than 3 months ago. However, her donor cells (Megan's cells) have decreased. That doesn't add up. I told them it's a lab error. Nope, they checked that. Meg's cells are down 20%. So when Meg's cells go down, in theory, Brooke's T cells should go down. Dr. Mageed did find a study where a kid eventually rejected the donor and started making their own T cells. So, maybe? They really don't know. They drew more blood this week to see if her T cells are good quality ones. Hopefully that will put some pieces together. If not, that's ok too. I trust the staff at DeVos. They are honest enough to say they don't know. I have faith enough to say, "I know." It has nothing to do with any of us. Our sermon on Sunday was about Peace. Finding peace in the circumstances we are given. For each of us that is different. Having harmony and balance in our lives. This time of year that seems difficult with the beginning of school, sports, work, kids. But when I think about it, this life was given to us. God gave us these circumstances so we can make a difference to others. Complaining about how busy and tired we are doesn't show Him glory. But once we find the peace that is always there, we also find the balance and the harmony.

So my goal is to have the peace with this craziness of life and the uncertainty of syndromes. Once again I don't know what to pray for. Donor cells, T cells???? So it's for His will do be done in Brooke's life and our life. Because what I "think" needs to be done, may be wrong. (yes occasionally I am wrong, but don't tell Steve :)

Here we go again............

Time keeps going and I'm not sure what we do :) With school, work, soccer and Brooke, our days seemed filled. We are so blessed to have an awesome babysitter 2 days a week for the school year. I can go to work and have a somewhat set schedule. And I don't feel like I'm bugging our parents CONSTANTLY!! Not to mention, I think the twins like Miss Dawn more than me :) She is much more fun!
Soccer started on Saturday. Want to see a crabby Shelly? (more crabby than normal :) put me in the rain with twins! The other parents seemed ok with it, not sure what my problem was. I'm, however, am going to go out and by an umbrella that is off limits from my children. It seems every umbrella we have gets broken, hmmmmm??? But Megan and Ashley played soccer and had fun. So, it was worth it.
On to Miss Brooke. I'll back up my thoughts to try and give you the whole picture. 2 weeks ago when this whole port issue started with bulging veins and swollen cheeks I said to the MD and PA, "I am not doing blood thinners." It was a thought that was on my mind and I told them. They smiled and said, "we were thinking Lovenox." That's a blood thinner that is giving subq (under the skin/a shot) 2 times a day. I smiled at them and said "no thanks." (notice how polite we all are). Well after all the testing was done Dr Duffner called me on Friday. The CT showed a questionable blood clot. She still has the narrowing of the vein. They aren't sure if it is scar tissue or a blood clot. So they want to start her on, you guessed it, Lovenox. I already told them no, they must have forgotten that. I don't wait to give my daughter a blood thinner when she's ALWAYS falling, for a questionable blood clot we don't even know that is there. So I called Steve. He graciously listens and says, "you better call my sister." (pawn me off) So I try to leave Lisa a message and end up crying on her voicemail. (WOW what a head case I am). Lisa calls me back and talks sense into me. A slight risk of bleeding OR a bigger risk of a stroke. After talking to Lisa the MD also called me back to "persuade" me. OK, we give Lovenox. It was actually a much longer conversation, but I'll save you all that. Lisa wishes she could have been saved :) However I am so glad God put such awesome, rational people in my life. I've been reminded how hard change is at any age. We get into our routines and we don't want to change them. I was also reminded by someone I have looked up to forever, to take off the mom hat and put on the nurse hat! As much as I want to be a mom, at times I need to be a nurse. Stop rationalizing things and feeling bad, instead just do what needs to be done and have some common sense. Do I enjoy giving my daughter 2 pokes a day? Nope! I prefer not to, but I'd rather have her with us, so I will. I think the funniest thing the MD said was "she'll bleed easier so make sure and protect her from falling." HAHAHA! SHE'S 2! The Great Healer will protect her. No worries about that. We will do the task at hand and let Him take care of the rest.
Tuesday she has an MD appt and blood draws. They did draw T cells last week. Not sure if they will be back yet, but with everything going on, not sure I care :) My brain is filled so if we have to wait another week for results I am ok with that.
We'll keep ya posted. (as for feeding, we are still doing tube feedings. She is taking baby steps towards being interested in food. We keep giving her food and will continue. Have I turned off the tube feeding for 2+ days? Nope. Not up for the challenge just yet :)

Tough Love

I'm sure many of you have heard that saying. "Gotta have tough love." Steve and I have read NUMEROUS books on parenting. We have strong willed children (hehe, I don't know where that comes from :) and, at one point, we were looking for all the answers. Can't say we found them. But anyway, Brooke had occupational therapy yesterday. Great lady and very smart (I've come a long way with therapists). She made some wonderful points for us to ponder. They keep treating Brooke for "oral aversion." Which means she won't put things in her mouth, is scared of texture and we need to "retrain" her. Steve and I didn't feel this was a problem. So we showed the therapist. Give Brooke a grape. She plays with it, brings it to her lips, but does not put it in her mouth. Give her a rubber super ball. In the mouth it goes. She chews on it! Takes it out, yells "look mom" and shoves the whole ball back in. Give her cotton candy, plays with it, brings it to her lips and back on the floor. Give her a cotton ball, right in her mouth. Stumped??? She sat and watched Brooke, coaxed her and said, "your daughter is very smart. It may just be time for tough love." Her suggestion, turn off her feedings for 1-2 days and see what she does when she gets really hungry. In theory that sounds good. As a medical minded person that makes sense. As a mom, it makes my stomach turn! I understand tough love to an extent. My children aren't that old. We've disciplined children, taken away privileges, toys, TV, go carts. I think one of the hardest things we've had to do was tell our 7 year old, who is not fond of medical things, that she HAS to be a bone marrow donor and there are no options. Through that we saw God's Grace! What a wonderful amazing experience. But now we are asked to stop feeding a child so MAYBE she will feed herself. The therapist said, "you have to be ready and strong." I don't think of myself as weak, but I've decided after 24 hours of pondering, I'm not that strong. There are too many what ifs running through my mind. My God can calm the sea's and heal the sick, I'm pretty sure He can, in His time, get a kid to eat.

With all that said, Brooke did munch on a Cheetos and drink watered down milk. She also still enjoys the super ball :) We will try but in smaller dosages.

Just before I sat down to write this I opened a book "Jesus Calling." For today it said "Walk with Me along the path of trust." And that was just the first line!! Thank you Jesus!! It talks about whispering "I trust you Jesus." Isn't He amazing! I've learned when my gut says, "I'm not sure this is right," it's probably not my gut. It's God nudging me saying, "trust in Me." We have trusted in Him to take care of her. At times we have begged Him to heal her and let us keep her and He always ceases to amaze us. Why do we think this will be any different?

Wow, I got long winded again! I need to set a limit on my "venting." :) Brooke did have her CT and did great. We will wait results. We did get a call from a surgeon about her last CT but I will fill you in next time. Lets hope this one is free and clear :)

Psalm 9: 10 Those who know your name will trust in you, for you Lord, have never forsaken those who seek you.

What a fun weekend! Sunday we climbed Mt Baldy with the Koeman family. I carried Brooke in a backpack. Every time I stopped she said "whew!" Like she was really working hard :) On the way home the girls asked if dad would take them tent camping with Uncle Mark and their cousins? I told the girls we just did something fun maybe we should wait to ask. Megan was "whispering" to her sisters and said "let's ask dad after his nap." HAHA, smart girl! Steve did not nap but he did take the 3 oldest girls tent camping by Uncle Marks pond. They were excited that they didn't have to change their clothes OR brush their teeth, and there were not toilets. Whoo Hooo. They had alot of fun and ate smores and cookies for breakfast :) The picture below is of Ashley. After camping I told her she needed to rest. She said "I am NOT napping. I DON'T nap, I'm not a baby." I agreed and said, "just read a book, please don't take a nap." hehehe. It looks to me like a "nap." :)

Onto today. Port out! Someone at the hospital said, "it kinda feels like you are cutting the umbilical cord, right?" WOW, he was SOOO right!! Brooke's broviacs/ports felt like our "lifelines." And now it's just been snatched. In reality, we don't need it. If she absolutely does need one, we find a way to put another one in. I also suggested since we have to poke her for blood maybe we should wait and check her numbers less frequently. My thinking, if we aren't going to do anything or change anything, WHY do we keep doing this. When we check her T cells, in my mind, something is going to change for the better or worse. But for the past 6+ months not much has changed. I asked again for a "plan" today. Someday they might surprise me and give me one, but today wasn't the day. They again reminded me she's healthy. She has sisters that live their lives, come home with "germs" and she's ok. When was the last time we were inpatient for an illness? Almost a year, knock on wood :) So, enough complaining and start rejoicing . God's plan is far greater than ours. Brooke did great today. She was not happy about the IV but the nurses got it 1st try, it took 45 minutes to remove the port and they also removed some scar tissue. She's back to herself. I was all excited telling Steve, "we have a new kid, no foreign objects in her." I guess I forgot she's tube fed and has a feeding tube :) That's ok, we'll take her, tubes or no tubes.



I can't help by share my devotions again. It just spoke to the way I've been feeling. "On some days your circumstances and your physical condition feel out of balance: The demands on you feel far greater than your strength. Days like that present a choice between 2 alternatives - give up or rely on Me. .......I will not reject you. You can turn to me at any point.............I will infuse my strength into you moment by moment. Trust me."
Jeremiah 31:25 "I will refresh the weary and satisfy they faint."

Obviously giving up isn't an option. So we rely on Him! Much more satisfying. Give it a try :)

The results are in.........

Steve and Brooke went to CT scan early this am. Then at 12:30p Brooke had therapy. The therapist was happy with Brooke's progress. She did say Brooke's calf muscles are under developed and was thinking she might benefit from AFO's. They are braces for her legs to help her with walking and stabilize her more. I said "ok, yep I understand," and shook my head. In the back of my head I was thinking "I am not putting those on my kid." I guess I just see Brooke's progress differently. At the end of the visit she said, "let's just wait another 2 weeks and see how she does." Ok, happy with that decision :)

MD office called in the afternoon. CT showed Brooke has inflammation in the vein that her port is in. It's also narrow, probably from the inflammation. It's not infected and they did not see a clot. The veins we see are Brooke's body making new ways for the blood to get through ( a bypass). She has made her own bypass to make sure she is still getting blood flow. (that's smart :) So her port needs to come out next Tuesday and on Friday they'll do another CT scan to see if that vein restores itself or collapses. They say even if it collapses she has made enough of her own bypasses to be fine. Hopefully then the puffiness in her cheek will go down. So, with all that being said, I was not happy. Actually the only thing they could have said to make me happy was, "she's all set, nothings wrong." So they were in a no win situation. The PA was so kind and patient with a neurotic mother :) I had a bazillion questions running through my mind. When 1 thing goes wrong, I wonder how many more are around the corner. So after my mini mental breakdown, I'm good :) They will not put in a new port just do regular blood draws monthly. After much thought and thinking something is majorly wrong with my kid (like she's normal or something :) I've come to this conclusion. It's in God's plan! We are getting rid of hardware we don't need. We are decreasing IVIG to every 3 weeks, so things are heading in the right direction. They will also draw her T cells next week. Once again BIG NUMBERS!! I will say, if they go down, you might all see a full mental break down, not just a mini one!

Sisters Sand angels

Cousins