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)