Macy eating brownie mix out of the sink. She ate all the tops off the cup cakes.

Brooke gnawing on a beef stick. She doesn't do this often, but I caught her in the act. If she bites it off, she spits it out at us. So dainty!

I haven't posted in a little bit. Time has gotten away from me. We had conferences for the girls, all smart and social (of course). Leah babysat the twins while Megs, Ash, Steve and I went to conferences. She did AWESOME!! She even did Brooke's tube feedings and meds. WOW! I am so proud of her however I don't want to take advantage of that new little perk in our life! Megan's class had "student led" conferences. It was great to have her lead the conference, pray and go through all she has been learning. All of the girls are doing great and have such a love of school and for Christ. They make us so proud!

Steve's parents came home from California Saturday and my parents returned home from Florida Monday afternoon. YEAH!! All parents home!! Grandparents are a BIG part of my girls (and ours) lives. So we are excited to play with them again.

Brooke went to clinic Monday. All looks well. Her port is working great. Since there are no major changes she doesn't have to go back for 3 more weeks. WOW, and I thought getting rid of tubes was freedom :) Unfortunately she has to see her pulmonologist before that, so we will still be there, but in the big picture, it's all good. I again asked, because I like to be annoying :), does Brooke have enough of an immune system to go out. He said, like always, "where do you want to go?" I don't want to go anywhere, I just have a problem being told I can't do something :) Sometimes is a good trait, sometimes it's a bad trait. He said because she won't wear a mask, she cannot go anywhere. Examples: stores, church, schools, anywhere with pets, any heavily wooded areas. My next question, can she go to school? Yes, I'm talking kindergarten when she's 5 years old :) He said yes!!! Thank goodness. I told him if I had to home school her she would not be intelligent. So only 3 1/2 more years to go :) I love having goals!

Macy got a kids toilet seat stuck on her head! Steve was telling her to hurry and get it off before mommy got a picture and posted it on the blog. OOPS to late :) It took some serious pulling to get it off. HAHAHA!

This is Brooke's port sight. Looks good, just some bruising. This is a great look she gave me.
And, last but not least, in true Koeman girl fashion, Brooke was discharge from speech therapy. She might be delayed but she can get her point across. Who would've thunk, the 1st thing to catch up be her speech :) Especially in this house.

Steve is gearing up for planting. I am not mentally ready for this. But I think of where we were last year, and we are in a much better spot this year. He's been working some late nights already so I better get over myself and figure it out :)

Have a great week!

"Be strong in the Lord and in His great power." Ephesians 6:10

Back at it!

We are actually uneventful! That's kind of nice. I have my LONG list of home improvements to continue. We got the big things done in the fall, now the list goes on. Brooke is still sleeping in our dining room, so I'm searching for carpet and going to paint the front room and get her back where she belongs. Then we'll go to the porch and landscaping. I'd like to express how I STRONGLY DISLIKE home improvements. To all you interior decorators and builders, kudos to you :)

Brooke is back to herself. We occasionally hear an "owie" out of her, but otherwise she's her spunky self. I do feel lazy not doing the IV's, flushes and dressing changes. I always feel like I am missing something.

Empty IV fridge :)
Medical supplies all cleaned up
Today she got a "bath" in the sink. That's the most water she's been in, She usually sits by the tub and watches her sister. It was fun for her to participate.
We also got to enjoy the weather. The girls rode in the Burley for a long time. They chatted, "sang", took off their socks and shoes and occasionally hit each other. Then they played ball with each other outside. Twins are a riot! Built in playmates! Everyone should try this :)

Little girls that don't want to come inside.

Free, free, in so many ways free!!

At 2pm we got sprung from the "spa". Nurse Sharon had everything running smoothly and early so we got out of there. THANKS SHARON! So we are free from the "spa" and we are tube free. No more boob tubes!! Brooke has had these since she was 6 weeks old. Hopefully when everything heals up she can go in the tub, maybe even a pool someday! She has her feeding button and then her new port, which is under the skin. No one will ever know :)
Last night was rough! She didn't sleep hardly at all. She was uncomfortable but being the trooper she is, she didn't really cry, just whined and tossed and turned. This morning they got her Tylenol with codeine. She likes that! She was breathing a little fast, but that seems to be from pain. Her chest xray was normal. "Help me mama"The other good news.....her STR (about of Megan's cells) are up to 85% up from 69%. Great news! They want it higher than 70%. Things are heading in the right direction.

They also started her on oral anti fungals. That means NO MORE IV'S AT HOME!!!! Only her weekly IVIG. We now have an empty fridge that we got rid of all those meds. And tomorrow I can decrease our IV medical supplies. Holy cow batman!!!!

The one thing I do wonder is, how did we do it last year? After 48 hours, Steve and I are beat! Did we age that much in a year? I think so. But we continually thank all of you for help and continued prayers. God carries us, when we can't function anymore. While we were up there we got to visit with another family that their son has SCIDS. He is post transplant and hopefully will be heading home in the next month. It's so amazing to see them living what we did last year. We pray for a speedy recovery for him and peace for their journey.

My friend sent me this verse and it's so fitting. Thanks Kristi!

Consider it pure joy my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete not lacking anything. James 1:2-4

We thank God daily for our trials, because our ultimate goal is to be mature in our faith and more like Him. Everyday is more learning and a little bit closer. Thank you!!

Sporting a new appliance

The old "wires"

Been a busy day! Steve and I appreciate all the help and prayers today. Brooke is on IV antibiotics every 6 hours to ward off infection. At 4pm they sedated her and removed the broken broviac and then placed the new port. It took an hour and a half. Not too shabby! She woke up kickin and screamin! I couldn't even hold her she was squirming so bad. She relaxed once back in her room and played with her toys and hammed it up. At about 7:30p she put her hand on her chest and said "owie mamma." My poor baby! But other than that she hasn't been to bothered by it. They are using the port already and we wait til morning and see what her blood cultures say and see what the MD's say. At this moment she is sleeping (9:30pm). We'll pray she last the night.

Cuddle time & new wires

Technical Difficulties

Well well well, here we go again. The girls had a Gems Mother/daughter night. On our way out the door Brooke's IV starting beeping, "stupid pump," (my thoughts). I re adjusted the pump, made sure nothing was clamping the lines turned it on and left. The girls were asking tons of questions about the IV on the way to church. (smart kids) I re assured them, it's no biggie, pump is a little touchy. Steve calls me 5 minutes later, tells me I need to come home now! Ok, girls get started I go home. To shorten the story we blew a hole in the side of her broviac. It seems her broviac clotted off so nothing could get through. When we hooked up the IV it created too much pressure and blew out the side. SOOOOOO, after many phone calls, I got to see the girls do their awesome skits (thank goodness for cell phones) and Steve and Brooke are at the "spa" right now. They have to start a peripheral (normal) IV and give her antibiotics. Steve just called and we discussed a port. I am all about it! A port is IV access that is under the skin, usually in the left upper chest. You can feel the access hub/pad under the skin but there aren't lines hanging out of her (unless you need them). Nice option!!! She's old enough now to explore these options. The PICU MD is coming down to see her to evaluate her for that and infections. However, like I told the girls, Brookie is not in the hospital for illness, it's "technical difficulty." They'll patch her up and send her back home. I will head up tomorrow to relieve Steve and he'll come home. In the mean time we fall right back into routine. Our helpers come out of the wood work and we roll with the punches. We'll keep ya updated!

Life in the fast lane....or NOT!

We live in a fast paced world. Life is full of deadlines, alarm clocks, fast food. We want everything NOW! We were again reminded that this life is not our time frame. Luckily we didn't have our hopes up for high numbers so I can't say we were totally disappointment, but there were no cart wheels in the hallways either (who am I kiddin, I can't do cart wheels :) Brooke's TREC numbers were 296, up from 211. Normal is 800. CD4 298, up from 246. Normal 1000. This tells us her immune system is at 35% of a normal person. Sounds depressing BUT June of 2009 her immune system was at 0%. So that is actually a pretty good jump. At least it's in the right direction. Dr Mageed was so kind and said this process takes grueling patience! It's not for the weak. (I took that as a challenge, We are NOT weak :) Brooke wasn't a candidate to have a transplant with chemo, and even now the risks to her long term health are SOOOO great if she had chemo. So if we can have patience, keep her healthy and wait, the outcome, we pray, will be rewarding. After Steve and I chatted, aired out the pro's and cons, it comes down to this......if we were told her immune system was 100% what would that change? Would we take her out? Where would we go? What would we do differently? NOTHING! We have kept her in a bubble for so long that we also need this slow process to ease her into the world. Someday she will have the party that all of our girls deserve, to tell them how awesome they are, until then we hang out. We will take the challenge of patience. I can say what I miss most is going anywhere as a family. It breaks my heart when Steve, I and the girls go away with out Brooke. I can't wait for summer so we can be outside and feel whole.

Brooke's arm seems to be healing well. She wears the splint during the day, just to protect it, and has it off at night. I looked for clothes for her this weekend. I told Steve I was mad that no one makes things that fit tubes out of your chest, a tube out of your stomach and a splint. We've resorted to scissors, we'll make them fit somehow :)

I was reminded this week how everyone has trials. Health issues, marriage issues, death of a loved one, unemployment.....it seems people we know are dealing with so much. I found myself angry many times this week at other peoples situations. Why do people have to go through this??? This Sunday we were reminded we go through this to increase our dependence on God. The pastor said "God perfects us through suffering?" Where would we be without our Heavenly Father holding us and walking us through? It brings a smile to my face to imagine but it makes my heart overjoyed to know, through Him we can all do this. It's not the situation, it's the Christian attitude we face the situation with. Peace and Patience to you all!

Ortho appt

Went to ortho appt at 7:30 am in Grand Rapids. Yes I said AM!!!! Holy cow that was early for us Koeman's. Steve had to remind me at 6:15 am my alarm was still going off :) Ooops. Brookie and I got ready in 15 minutes, we are quick, and we looked good :) (maybe not :) Ok, to my point of this post.......appt went great. MD said the radius is fractured, ulna looks good. So the ulna will act as an internal splint which is why she isn't in alot of pain. He said his "normal" protocol would be to cast it and bring patient back in 3-4 weeks then re xray. BUT, for health sake we will keep the splint on (because we like to check her skin) and no need to come back. He said "I have a feeling you'd be really mad if she got sick because she had to come here." We do what we gotta do, but we appreciate people thinking this all through. So, splint for 3 more weeks and then good to go. He said her bones look very "thin and brittle." But again he said, let her grow and get off some of these meds and you'll never know this was a problem. So again, I'm happy with that. We had a talk with Brooke and told her she's going to have to get quicker to keep up with the Koeman kids or she'll get trampled. That's all she cares about now is that she has a built in defense mechanism in this splint. OUCH!!!
Back to clinic Monday. I won't hold my breath on lab results, but they will be sending more out. Grow immune system grow!!!!

update

I thought I'd let you know how Brooke was doing with the whole arm situation. The pictures tell it all. The Splint in the cupboard

WHO ME?????

The helper in the crime.

Obviously it doesn't bother Brooke too much. We just re wrap it and carry on. (or we leave it off for awhile :) Tuesday she goes to the orthopaedic (bone) MD. We hope he just says it's not too bad and we can keep the splint. A cast sounds like a pain. We like the fact that she takes it off at least once a day and we can check her skin and make sure it's all good. We'll see what the week brings.

I got to go do Creative memories Saturday night with friend Sarah. It was a great time to hang out, talk, eat and try to be creative. I'm not the most creative person but I LOVE pictures and I want my girls to have these memories someday. So I'm only 2 1/2 years behind on pictures (slow and steady wins the race :) but I love the finished product. Thanks Sarah for giving up a night to hang out with me, and thanks to the guys for holding down the forts :)

1 year ago.....

It's hard to believe it's been a year since the Bone Marrow transplant. I looked back at our post from last year. What I find most humorous is the statement, "it usually takes 2 weeks to see if the transplant is taking." HAHAHAHA, 2 weeks + 11 1/2 months + who knows!!! We still don't know if it's working but at least we aren't at the "spa" waiting. The girls were very excited about today, as were Steve and I. I told the girls they could treat their class to donuts. So I cleaned out Family Fare bakery and bought 68 donuts. Steve and I ate one too :) We were hoping for a fun dinner but some plans got changed. (Hold plans loosely, they aren't ours). I'll back track to explain. Earlier this week Brooke got stepped on. No biggie. Someone is always getting stepped on, stubbing toes, hitting their head, bruises etc. We have 7 people living in a normal size house. We like to be close. WELL, since then Brooke hasn't been crawling on her rt arm. She won't put any pressure on it. But she'll wave and use it to pick things up. So, we all piled in the "Loser Cruiser" aka Minivan, and head to the MD office. Brooke hasn't been to Dr Golin since she was 6 weeks old. GERMS!!! So I check her in, the we wait in the van. They come out and get us. We see the MD, we go for xrays. Same thing, wait in the van til they are ready, except this time we get pizza and have a picnic in the hospital parking lot, F U N!!!! Yep, a fracture! Small buckle fracture. Take the girls home, put them to bed. Uncle Mark comes over to babysit, Steve and I go to Prime care to get a splint on it. Dr Golin called ahead of time so no wait, all clean, a calming experience. They put on 1 splint, Brooke takes it off. They put on another splint, we are good to go. 1/2 way home, Brooke is waving the splint in the back seat laughing. Seriously..........we put a splint on, for a fracture that she never cried about in the 1st place. Well, the splint is back on. She is sleeping, as are all the girls and Steve. So, I guess we had a good night. Everyone is where they need to be and happy.

Happy post 1 year Brookie, Macy, Leah, Meg and Ashley! You girls make our hearts smile!

Magnificent Monday!

That is honestly how I feel today! It is magnificent!!! Steve and Miss Brooke went to clinic, the girls and I did our work/school routine. Brooke and her daddy LOVE spending time together. This was the 1st time Brooke has been to clinic since she started crawling, so she had to show off a little. Her weight was 19# and her height was 29". Those are some pretty big jumps for our little lady that refuses to grow. They also decreased her steroids to 2.5 mg a day! That's peanuts compared to what she has been on. I feel like someone found the switch and said, "ok Brooke it's go time!" Obviously the proof is in the numbers and some of those were drawn today. Her broviac hasn't been drawing blood very well, so they thought they'd have to draw blood from her vein. Leah prayed last night that Brooke would get a good nights sleep and the blood draw would work. The power of prayer! There was some sweat but the broviac slowly worked. So in 2 weeks they will draw more T cell testing and we wait for results. The last 2 times we have waited for results I have been anxious. I run every scenario through my head and think about it alot. For some reason, it does not bother me this time. I don't care when the results come back. (That's the Lord, not my controlling nature :) And I'm ok if they haven't gone up. What's the worse thing that can happen??? We can't leave our house???? That's funny. I'm finally embracing the fact that house arrest isn't so bad.

Today when leaving clinic Brooke's feeding tube got caught and popped out! It happens every now and again but it's kinda yucky. My wonderful husband does not wish to be the medical personnel but he embraced the situation the took care of it. YEAH STEVE! He is definitely our knight in shining armor.

On to the week......1 year ago this week God gave our family another chance. Another chance to be a family of 7. This wasn't the 1st chance He's given us. Thursday will be 1 year since we watched Miss Megan literally give a piece of herself to fill her sisters void. More awesome than that, I have girls waiting in line to donate. They are ALL hero's and played such an awesome part in the past year. We are so blessed God gave us another year. We have all grown and we pray that we continue to see His plan for our life. The girls want to celebrate on Thursday, so we have to decide what we are going to do, but it's going to be a celebration of 5 wonderful girls lives and 5 never give up attitudes, that came through this past year with smiles on their beautiful little faces. Steve and I love our little ladies and are so proud of each of them.