Don't wanna say "told ya so" But????

That's Miss Brooke, in a big bed, at the SPA!!! So we thought it'd be a good idea to not give IVIG to "test" her immune system. I was uneasy about it, but it was, and still is, the logical thing to do, if you live in a bubble. Well obviously our bubble isn't sanitary enough, so here we are. She has a form of influenza, but not the form that's covered in the flu shot. Her general consensus for us is, "I don't feel good." She has had back pain for a couple days. Walks around holding her back like an old lady and very stiff. Then last night she had screamed for over an hour, I had to call Steve home. So Steve took her to ER and we ended up here. It's a nice place, very pretty, big windows. But not like home. She, however, does not feel like being at home and that's ok. The other girls have been sick to, so maybe she would've gotten this even if she was on IVIG, but there's always the guilty mom complex.

Last night before Brooke even went into ER, Leah was crying. She said, "mom, Brooke's sick, I can tell, it's not good." Smart 12 year old. I told her she's upset because she loves Brooke so much, but her job is to pray for her and give her worries to God. He'll take care of her. And she did, and slept great.

Today, the MD asked why I was here. DUH, I'm her mom! His point was, I have laryngitis. I explained I got it after her. Pretty sure it's the same thing. He was still concerned and we agreed I'd wear a mask when holding Brooke. However, I then got the guilty mom complex. "I should've used more bleach." "I should've prevented the twins from drinking out of the same cup, licking the same things, hugging, etc" Ya just feel like you failed. I didn't protect her. So I vented to my sister in law, who wrote, ""don't let them make you feel bad--Brooke is in God's hands--He will do the protecting." Thanks Lisa!! Maybe I should practice what I preach. It's so easy to fall into that trap!

Well, we're here, nothing we can do about it. Watch her, love her, and pray this virus exits her little body. They will check her IGG levels tomorrow. That will tell us if her numbers are low or if I'm over reacting. Me.....over react? :)

Have a great day! From our HUGE window it looks gorgeous outside!!! Enjoy God's creation.

Good Therapy...

I have many forms of therapy, depending on my mood. Laughter and eating cake pretty much cover any trouble. This weekend I had to run. I do enjoy running. I am not fast, I don't time myself, it's more of a mental break for me. On Friday I called the MD and asked the nurse if I could take Brooke off some of her meds. She said, "oh Dr. Duffner's right here. He's been meaning to call you." OH NO, not talking to the MD. I like and totally respect him but he never tells me everything is great. Well, he talked with his colleague's and they decided the next step is to take Brooke off her IVIG (immune system booster). We will check her blood levels in 3 weeks and we'll know if she is making her own B cells. Now typing this, it really doesn't seem to be a big deal. My reaction last week was a little of a bigger deal. (That means the run worked :) I guess I was not mentally prepared for that. Brooke's numbers have "stalled out." Which we know. But I guess deep down I was content there. It's better than it had been. I didn't like the idea of "testing" her immune system, and R E A L L Y deep down, I didn't think it would work. My reaction was, "we are setting her up for failure," "I can't do this," "what happens if her b cells don't kick in." So I called my therapist, "Steve" aka husband :) and he talked some sense into me. Then Saturday I went for a run and God REALLY talked some sense into me. It's all good. I was once again putting my trust and faith into human medicine. My Faith and Trust belong in Him. He will take care of her. If it works, then YEA GOD, whats the next step? If it doesn't work, then maybe not "YEA GOD", but "Ok God, I respect that" what's the next step? He will not leave us or her.

Unfortunately we've been sick. Good timing huh? Seems like headaches, sore throats, some fevers, I heard of a couple stomach aches. My general consensus is a virus. Brooke refused her feedings by dry heaving and streaming for 2 days. But she drank her water, stayed hydrated and is back at it. She must have some immune system. So far Steve has escaped it. I have laryngitis of all things. Why do kids NEVER get laryngitis?

The girls are making cake with Becky, Brooke's therapist. Macy just benefits from it.

Finished product!! Yes we ate it. I mean really, it IS cake :)

As I am writing this Steve is planting. YEAH!!! That is probably short lived due to the weather this week. But we'll take what we can get (as will any other farmer :) Have a great week.

Searching for answers.....

As I read the title it sounds like I am really searching for an answer to an important question. Right now this is an important question. WHERE ARE ALL THE SOCKS IN THIS HOUSE???

This is a picture of socks without a match. My socks are not in there and neither are Steve's. How can 5 children loose so many socks? I find them all over the house, under the couch, in the beds, behind the couch, on the counter (yuck), in the shoes. You name it. So I gave up looking. I even folded some of them not matched. The kids wear them. They don't care. Awhile back I bought new socks thinking we'd start fresh. That didn't work. I think they think socks are disposable. I've heard others that have this problem, so if solutions are out there and proven successful, please let me know. :)

All in all another good week at the Koeman's. Steve had a birthday last week but didn't want cake for breakfast or me to post it on the blog. Party pooper. So we ate cake for supper and I couldn't resist posting it on here. I HAVE to celebrate him, he's an amazing man that I love more than I could ever describe. Even though he didn't want to make a big deal, I do :) Because he's kinda a big deal. hehe (He has a shirt that says, "I'm kinda a big deal")

The hallway is painted with the help of my trusty 8 and 12 year olds. They did a great job rolling on paint. It took me the longest to fix the hole in the wall, but I did it :) I'm starting to feel like Bob Villa :) It's not perfect but it's better than it was.

I'm still picking out flooring. I had a slight meltdown last weekend and had to call my brother in law and 2 friends in for help. I am not an interior decorator (as you all may know). It just isn't important to me. + our motto for quite some time has been "we can't have nice things." When things are new we worry about stains, spills, chips, etc etc. With our old things it's much more laid back. With 5 kids we need laid back. So I haven't had much experience picking out and matching things. It's almost as bad as the grocery store hehe. There are so many options!! But it's all good. I have it down to 2 choices, so we will ponder it a little longer and hopefully decide soon. I am enjoying the home improvements. I always use to do 1 room a year. Then I took a break for a few years, and now its go time :) I normally try these projects when Steve is planting, but as we all know, it NEVER stops raining. So on top of my husbands job being on hold, he has to endure my home projects. Please pray for him!

Brooke went out and still is healthy!! Yeah Brookie! Even took her out for lunch this week. Aren't we getting adventuresome?!?! I haven't heard from the MD if I can take her off some of her meds yet. I'm waiting. I'm actually kind of excited when the doctors aren't in a hurry to call us. That means we are no longer an emergency. YIPPEE!! Brooke picked up her "cell phone" the other day and was having a pretend conversation with her MD. She was calling him by his name and chatting away. I told her we need to get her some friends. He's a nice guy, but really? Have a great week and we pray Spring swims on in soon.

Happy Easter

So excited today! Of all days it's Easter, what's not to love! Our Savior died for US and rose again! These are our ladies. So cute! Yes I am "the mom" that did matching dresses, but I didn't make them all dress alike :) It was fun to have everyone in the bathroom on Sunday morning getting ready. A little crowded, yes, but it's a good crowded.

OH BOY, YOU GUESSED IT, this is ALL the Koeman's (+ a couple nieces and a grandma) in church! I wish I could explain how excited we were to all be in church together. The twins have not been to church in about 2 1/2 years +. So when I asked if we could go to church and got the email it was ok," just don't sit in the middle of the crowd", that was a good day. The girls and Aunt Lynn knew but we didn't tell Grandma or Grandpa. We wanted it to be a surprise! SURPRISE~~ What a crew. Many people there have prayed for Brooke for a long time and have never actually seen her. Til today :)

Grandma Blueberry, Avery and Leah sitting in church. (I have never taken pictures in church before, seemed kinda funny)

Done with church, onto the Easter egg hunt at Grandpa and Grandma's. The dad's hid the eggs. This could take awhile.

Opening up the eggs!

Eating the candy!

AHHHHH, too much candy!!!!!!!!!!!!
All done! We had a great day of family, friends and celebrating our Risen Savior. He always deserves all the Glory and Honor! My wish is to try taking her to our church and get into a "routine." We might have to wait til summer til we feel more comfortable with that but we'll see. God's in control of the future not us, so we'll following His leading. I pray you all had a Blessed Easter!

The rooms!

The rooms are done! Last night was Brooke's 1st night of sleeping in her "big bed." It's actually a toddler bed but the rate she grows she may be in it for YEARS! Steve thought I was gonna cry, I was so sad not having a baby in the crib. It's just another stage. However we are not use to having Brooke share a room. So when she was up coughing and dry heaving I am now up too. We use to just leave her in her crib and she'd fall back asleep. Last night I was summoned to her room by Macy, "MOMMY BROOKIE NEEDS YOU!" We'll see how long she lasts sharing a room :)
Leah and Megan's room

Ashley, Macy and Brooke's room

They are all so cozy :) Sometimes they complain about sharing rooms, HOWEVER we find them in each others beds quite often. And they don't want to go to sleep til there sisters are there. We offered them their own rooms, we'd build more in the basement. Nope, they don't want that anymore. So we don't believe that complaining anymore :)

I guess I better go take down the last crib. sniff sniff

#

Well I wrote a post and didn't publish it (yes there are unpublished blogs. I have MANY things running through my head :) Then Steve said, maybe we should post Brooke's numbers. They might not make alot of sense but sometimes it helps to see where she is and where she needs to be. So:

donor cells: 85%, they want better than 75% Yeah!

CD4 320, normal is greater than 500, bad is less than 200

TREC 268, normal is 800, bad is less than 78

There are many more but you get the picture. I am waiting for them to email me a graph they put it on. I'm a visual person. Now I'm not complaining about these numbers. They haven't gone up BUT they haven't gone down. And Megan's cells (donor cells) are where we want them to be. When you look at the start of the graph the numbers were 0 -94 (Jan 2009) So from there we have made MAJOR progress. The MD's are getting input to see of we can take her off some of her meds. She is on many medications to prevent her from getting different infections. It's time to venture out and see how she does with out them. But that's mama talking :) So we'll see what they say about that. Today Macy saw a picture of Brooke when she had ALL her tubes. Macy asked what was wrong with Brookie. I told her Brookie had been really sick. Macy said, "really, she's not now!" So according to her 2 year old twin, having a counter full of meds and being tube fed is normal :) She doesn't know any different.

Grandpa Blueberry's birthday party!! YEW HAW!!

On to feeding, or lack there of. If you spend anytime with Brooke, she is just a normal little girl. She does it all and has attitude to go with it. (she even pinched a little boy she didn't know! That's not cool!) What she doesn't do is eat enough to survive. I guess you can't survive off 1-2 white chedder cheez it's, every few days. Brooke's feeding therapy is done in June. This is good and bad. Good in the part that Brooke no longer needs, physical, occupational or speech therapy. She's caught up to her age, however, our occupational therapist also see's her for feeding. When she turns 3, because this is supplied through the state, this will end. An MD recommended Brooke have outpatient therapy to help us with feeding. I was really torn with this. First, we really like our therapist now. She is so patience with us and has taught us alot. So the thought of starting over is gut wrenching. Second, I don't want to. I want Brooke to eat, and I have no doubt in my mind she will eat. But to be so intense about this make me anxious. So I called a few therapist and talked to a few people. Then I saw our therapist now, Becky, and I told her, we are taking a break. A summer off! We are going to grill out, go camping, cook over the campfire, eat ice cream and have fun. If Brooke wants to join us, we will be so excited! If she doesn't, we will respect that as well. Brooke has not been given very many choices in her life. She has been forced to do many things, and she does them. So I just want to give this time. Since it seems to hurt her when she eats, and she still gaggs and dry heaves, lets just leave it alone. She will be evaluated in June for an intensive feeding clinic. If she is eligible she will be on a 15 month waiting list to get in. We will cross that bridge when we get to it. We are sad to lose Becky, but she's given us the tools to keep trying without driving ourselves nuts.

That's the Koeman update. Home improvements are under way. I'm on a roll with painting, picking out flooring and landscaping to come! This is fun!! Not sure Steve agrees. He can't wait to get into the fields so I stop bugging him :)

Have a Blessed Easter. I love Easter. It was always amazing growing up. It's what our belief is all about. How someone could sacrifice so much for us, so we didn't have to suffer. I read this today and thought I'd share.

" Jesus opened up a new relationship for us through His death on the cross and His resurrection from the dead. No longer must we go through a high priest to seek atonement for our sins, because Jesus became the final sacrifice for our sins. And He has given us free access to God the Father, to whom we can come in times of need." (from Crosswalk)

I loved the words "free access." Anytime, day or night. How comforting!!

Happy Easter!

Another day...........

Spring break has been eventful, the closets are cleaned and organized, the girls swiched rooms, Leah's got a new bed and even did some painting with the help of Aunt Lynn, (It looks GREAT). The landscaping is in the process of getting torn out and new on the way. The half bath has been stripped and I have to sand and paint. I asked Steve "when did we fall apart?" He just laughed and said "about 2 years ago :)" The more I think about it, about 2 years ago we started picking up the pieces. We were in the process of coming home from the "spa" and we focused on what was important, A happy healthy family. We focused on 5 girls, and they are doing great. They are growing and happy. Health is what you make of it, and Brooke is coming along. She's further than I ever thought I'd see her. When we switched the rooms, that meant, there is no longer a nursery. After 13 years of having a "baby room", it's now gone. Brooke still sleeps in a crib in our old living room, but she also has a big girl bed, up and waiting for her, when the time is right. And I'm ok with it. We have a few friends that are pregnant and I'm excited to hold and love those babies, but we are onto another stage in our lives. I've realized if you ask God everyday for His plan for the Day, He'll show you. The big picture looks totally overwhelming, so don't look at it. Like my sister in law said, if we did all our projects at once, we'd have nothing to do. Somedays we do projects, other days we play. The girls have gotten to have play dates, sleep overs, we went bowling (which Macy thought she totally dominated at :), the big girls, Aunt Sarah and I went to Bodies Revealed at the museum. It's been good. I'm not ready to give my kids up to the structure of school, however summer is just around the corner. Brooke had clinic today. No changes as of yet, and I don't suspect any. They drew her blood again to check her immune system (6 vials of blood I believe). So we wait for results. I don't imagine it has changed alot, but maybe that's just experience talking. As I type this I listen, once again, to her hacking her little head off in bed. She is so good all day, a crazy, naughty 2 1/2 year old. She goes to bed and the sinus drainage takes her over. So, again with that, we wait. It's nothing major, considering everything she has been through. She has been showing signs of eating which is VERY exciting. She ate a few bites of chicken and a noodle 2 nights ago and some brat tonight. Not what you'd expect 1st foods to be, but she can eat whatever her little heart desires. It's funny because after she eats Macy praises her and says "give me 5 Brookie!" LOVE IT!! Everything in God's timing. 1 day at a time!!