Happy Birthday Macy and Brooke!!

The twins are a year!! Yea Brooke and Macy! Brooke decided last night she didn't want to celebrate her birthday at home so I am up at Spectrum with her. She developed a fever last night at midnight was crying and uncomfortable. So we went to ED and since there are no easy answers with Brooke we are back on the hematology/oncology floor trying to figure out what is going on. They have run blood cultures and are doing a spinal tap now. They have started IV antibiotics and then we wait. We were told 48-72 hours and then we should be able to go back home. She looks good and is acting well now. Please pray we are home in the 48 hours and pray for our girls. Last time we went to the hospital we came home 5 MONTHS later. That is fresh in their minds.
Leah told me this morning Macy is upset because she can't spend her birthday together and they can't dress alike. How cute :) Once again God will provide us with strength and peace. Yet another little bump in the road. We'll keep you updated.

Birthdays and Parties!!

What a fun weekend. We had a party Sunday for Megan, 7 years old July 12: Ashley 5 years old July 14: Macy and Brooke 1 year old June 30! We had family and a few friends at Steve's parents house to enjoy being outside, eating and celebrating LIFE!! The weather man called for high winds and rain on Saturday night. I was not worried! I guess there were a few sprinkles, but all was dry in the am, and the winds calmed for the party. What a great God we serve!! The girls made their own cakes and they were wonderful!! Macy at 3 pieces :) Brooke decided she didn't want any.
Steve and I sat down last night and talked about the past year. Then we decided let's not relive it and just move forward instead. Looking back it has been a long year. Usually we can say time flew, but this year has been different. Memories are way to vivid in our minds and we just want to move forward to better times. What amazes us is God's love!! How He gets us up and prepared every morning is refreshing. We also decided we aren't going to look into the future either. No future plans, no what about next year. We will enjoy the day and the time God has given to us to be with our girls.
We are at clinic now so I hope for some word on tests, but as we know, it's not about our timing. I have to say I'm getting impatient. I like to know what direction things are heading, but so far it's staus quo. When I know more news I will update you. Our Internet has been down at home and that frustrates me! So I sit outside and "borrow" it from my in laws :) I will try and get some pictures posted soon. Thank you all!

Another week

Nothing much has changed at the Koeman's. The rain is gone, thank goodness! I pray for all of you digging out and riping out carpet. I also thank our friends and family that we had a dry basement. We watched the sub pump waiting for it to quit, but it kept up til the electricity went out :) As of December our basement would have been VERY wet. I also want to thank my brother and dad for the generator and getting us hooked up with electricity to keep Brooke's meds cold and run her feeding pump. It was also nice to have a toilet and T.V. :) The girls had a riot. It's not every day they get to roll around in the mud and then wash off in the ditch. People were slowing down on the road to watch them. I was laughing so hard! However you should have seen my tub when they took a bath. I actually had leaves in the drain.

Fathers Day we went to my brothers house and hung out outside and grilled. Nice and relaxing. The girls locked Steve's keys in his truck but luckily we took separate vehicles. Then his dad took him back up there later and Steve got some alone time to "crop tour." (it's a farmer thing) So it all works out for the good.
Brooke's cold is going away, PRAISE GOD!! She is coughing less, and runny nose is less. I feel bad when people see her and I say "don't touch her." We even told Ashley she can't kiss her anymore. We told her just kiss Macy more :) We are waiting on lab results (as always.) The numbers we are waiting on is the percentage of T cells in her body that are Megan and what the T cells they are. We convinced the MD we only need to come to clinic 2 times this week. Thanks to some friends pushing I got up the nerve to ask, "why are we here so much?" That freed up time for us today to do NOTHING!!!! We sat by our "kiddie pool." The girls cousins came over, they played, swam and just had fun. I got to lay out with Leah and have good talks. We had alot of fun.
A concern at this time are her feedings. She is on a new med to stop her gagging/vomiting. She had surgery to STOP the vomiting and spitting up. However she has figured out how to spit up again. If it stops here we can handle it, we just pray she doesn't start to full force vomit anymore. The MD said there are rare cases where the child will either stretch out the muscle around her stomach or learn to vomit through it. We've had enough rare situations. Your prayers for the virus to go away are working so I thought I'd add another thing to my prayer warriors list!!
I did get an email back from a mom that her daughter has Omenns Syndrome. She actually had it 15 years ago. I have her phone number and am anxious to talk to her. Hopefully we'll connect soon. Thank you all!! Hope you have a blessed day and enjoy God's beautiful day!

"Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God." Phil 4:6

Clinic day.

The weekend was fun! My friend took me for a pedicure on Saturday, that was fun! Thanks Kim!So then when I got home the girls decided it was their turn. So I gave them a pedicures. Girls are so fun!

Monday at clinic they drew blood for Brooke's T cells and another viral panel. Today we got back that she has "some" (said loosely) immature T cells. That is a good thing, because Megan's cells are mature so Brooke is making "some" on her own. Her viral panel showed the metapneumovirus is gone (yeah one virus gone) BUT she has the rhino virus back, hence all her snot and coughing. Dr. Mageed asked me who she's been around, and said she should wear a mask. SHE'S ALMOST 1, SHE WON"T WEAR A MASK AND SHE HAS 4 SISTERS. I left feeling like a failure. I can't even keep 1 kid healthy!!! I grew up a farm girl and married a farm boy, to say the least we have never been total germ freaks. Until now!!! We hear every sneeze and believe bleach is the best invention ever. I'm not sure how much I have written about Brooke's diagnosis. She has SCIDS, what we don't know and will never know is what kind of SCIDS. I was telling someone in a nutshell what she had and he said "it sounds like Bubble boy." That is it!! Brooke is Bubble girl :) So if you want interesting reading google bubble boy syndrome. I also ordered the Bubble boy movie from the 1970's. It was only 0.43 cents. I guess no one wants to watch it :) With that said, the MD's have heard from a couple other MD's and it seems they would wait 5 months post transplant to see if her T cells are taking. So that takes us to at least August +. And we can't do anything right now with her cold. There are also further lab tests out there that we are waiting for.

With no sisters home Macy and Brooke started talking to each other. It's so funny. They seem to understand each other.

The girls have been at the beach with my mom since Sunday pm. So it has just been the twins, Steve and I at home. I have been SO lonely. No one says, "MOM!!!" No one pulling at my legs, no kid hugs and the quiet is KILLING ME! I have the TV on just to make noise. Megs came home tonight and I LOVE IT!! I know why God gave me 5 beautiful children. I am lost and disorganized without them. Thank you Jesus!!!!

Day 100!!

Day 100, post bone marrow transplant is usually a really big deal. It's the day the kids get to go out to eat, get to go to stores and be "normal" again. Brooke changed those rules. We had "planned" to have some sort of party on day 100, but Brooke didn't want one, so she's at clinic with Steve getting IVIG (to help her immune system). Brooke's not the party sort of girl. My dad always told me, any day we wake up breathing it's a good day. So it's a good day! Brooke is holding her own, the weather is beautiful and all my beautiful girls are on summer vacation. We couldn't be happier!! So, no party, but greater days are ahead. I was telling friends I always wanted a baby for a long time. They grow up so fast. God gave me my baby. He actually gave me 2 babies and I LOVE watching them at their different stages. I appreciate each stage all the girls go through. I even enjoy the difficult stages because I know they won't last.

No news on Brooke. We are still waiting to hear from other physicians and next week she has more labs done to see if her T cells are doing anything. I have been searching to find parents that have children with this. I have some emails but nothing has worked yet. Thanks for all the prayers.

Phil feeding Macy brownies!

Brooke made her 1st "mess." She emptied the pencil sharpener on the couch!

Focus!

Last week went really slow! It was such a relief when Steve got done planting and I was hoping things were back to normal. However it seems I cried about every time I looked at Brooke and was not my smiley self. I told Steve on Saturday I was not going to smile, because I was all done being happy (whatever). On Sunday the girls and I went to church and sat in front of my good friend. I thought "oh great let the water works begin." It felt so good to talk to her. Then I got home and got an email from a friend I met at Spectrum. Her email in a nutshell said, Shelly don't lose focus. That was EXACTLY what I needed. I was focusing on Brooke, her future, worrying about what the outcome will be, and it ruined a few days of my life (let alone my poor kids I'm sure.) This illness does not have us. This is just part of our life, it will not control our life. We focus on Him, our great provider and healer for strength and guidance. With that said, how was Brooke's week.......physically she is doing well. She seems to have more symptoms of this virus but is rallying through. The doctors did meet and they have been in touch with other doctors and they don't really know what to do. They go back and forth, weighing out all their options. Brooke has a virus and transplant can be tricky with a virus. They have looked at a couple studies re: the type of virus she has. They also wonder if maybe the transplant just hasn't had enough time to take yet. They are waiting to hear from a couple of doctors. One in Germany and the other in the US. The consensus is at this time to wait and see how Brooke does. They don't want to rush into transplant without all the data (little as there is.) As crazy as this is, we are ok with this. We want all the information and what's best for Brooke. We get to have her home longer and she is really doing well and looks good (that's a mom talking :) We have realized there is no time frame with any of this. It's day to day on how Brooke does. God will show us his plan.
"The Lord shall guide thee continually and satisfy thy soul." Isaiah 58:11

Pictures, pictures, pictures

I found the camera, or it "mysteriously" reappeared. No changes on Friday. Next week clinic days are M-W-F. The doctors also have meetings about Brooke to hopefully come up with a plan. Brooke has a virus and they need to decide how to proceed and what is best for her. Please pray her virus goes away and that we can proceed as the doctors plan.
Macy laughs at everything!
How cute is she!

Couldn't resist! Planting is done! Yeah! Wrong color tractor :)

But it gets the job done.

My WONDERFUL planting crew!

I love my flowers! THANKS!

Megs and Brooke watching cartoons.

No new news

It's been almost a week since I posted and I apologize. I can be honest and say not much has changed. Kind of in a holding pattern. I can also be honest and say I was hoping every time we went to clinic this week they'd say, "oh Shelly you heard us wrong, she doesn't need another transplant." I think I thought by not posting I could ignore the fact Miss Brooke has to do this AGAIN! Reality check......Brooke does have to do this again. I have come to the conclusion we can't change it, so we'll roll with it. Worrying changes nothing. God doesn't want us to waste our time worrying about the future. He will take care of us. He brought us through 5 months at Spectrum and He'll bring us through whatever Brooke's future holds.
Another question I've been asked..............since Brooke needs another transplant is it time to get a second opinion or go to another hospital? Our feelings (this is just our opinion :) no. We can go to a University hospital or even Mayo but they don't know Brooke and don't care about her like Dr. Mageed and his staff does. To us, Devos is all we need at this time. The MD and his staff have such a love for Brooke and our family and want what's best. They are doing their best and as we all know they are the hands of our Great Healer. God decides how things will go and He'll prepare us daily for our journey.
Our week has been busy. Last weekend our girls had their garage sale and had so much fun! It was fun to watch them work all week to set things up and price it. My friend Chris and Steve's mom came over and planted flowers all over the house. They also cleaned up my hill and planted more flowers. What a BLESSING!! It looks so nice. (now I must water them :) I will post pictures when I find my camera, oops :)
Brooke has clinic M-W-F and I work T-TH. Craziness!!! However, Steve is almost done planting and the girls are done with school. YEAH!! Brooke's clinic visits have gone ok. No major changes. We got clearance from the surgeon to have transplant. Now the MD's need to meet with each other and come up with a plan. Brooke does have a virus but they haven't determined if that is affecting her right now. Brooke is on 2 nebulizers in the am and 3 at night, for her lungs. That gives us cuddle time. Also Leah and Megan have been doing tube feedings and nebulizers. What great help they have been.
Today we got the gift of pictures. We were so blessed to get to have the girls pictures done by Christy Pacanowski. Someone is teaming up with Christy to give us this gift! WOW!! It was so fun to watch the girls interact. I got in touch with Christy on Saturday about this and she got the girls in already this week. I am amazed how everything falls into place. Thank you Christy and "donor." :) You have all made us smile. Can't wait to see the pictures.
WOW that got lengthy. Maybe I should post more often? Thank you all for the meals, cards, gifts, calls and prayers. I don't know where we would be without all of you. I have fallen behind on thank you cards, I apologize. Please know you are all dear to us and have a very special place in our hearts. God bless!!