She Did It!!!

 Yesterday was THE DAY!  The Last scheduled day of feeding therapy.  Obviously every day at the Koeman's is a day of feeding therapy, but it's no longer scheduled.  She HAS graduated!!!

Brooke and her cake!

Macy and her cake :)

 Macy shared her cake with us!

 Brooke and our calm, consistent, patience, persistent Miss Nora. 

Miss Nora will forever hold a place in our hearts!  Feeding issues are so hard to explain.  As anyone looking in it's so easy to say, "just eat! The parents need to buckle down and lay down the law."  That's what I told Brooke for years.  It didn't work.  It's so much more complicated than that, but in the end, we have crossed the finish line.  We know what needs to be done, we just have to continue to implement it.  I have a new app on my phone that I can track everything Brooke eats and it puts the nutritional value with it.  It is such a help because at the end of the day we know if she needs a tube feeding or not (the app is actually for adults and dieting, but I tried it and decided I didn't want to track what I eat hehe).  
Miss Nora said Brooke was such a success case because she didn't need the intensive feeding therapy and did it all out patient!  I was so happy to call the intensive feeding clinic and cancel her last follow up appointment.  OH HAPPY DAY!!!!   Eat on my friends :)

I'm going out on a limb saying this out loud, but our next scheduled appointment with any doctor is April.  GET OUT!!!!  That's the longest amount of freedom Brooke's ever had.

1 John 4:16 We know how much God loves us, and we have to put our trust in him.

A humbling, sureal experience!

I don't know where to start!  So here it goes.  Last Saturday the Limo (yes I said limo) arrived at 5:45a.  At 5:30a Steve gathered the girls in the kitchen.  We talked about the AWESOME experience we were about to encounter and we had a prayer.  (I cried, as did Leah and Megan so it was ok) When the Limo arrived so did Mom and Dad K and our friends the Koops.  GET OUT, a send off crew!  (I cried)  Dad K said a prayer with us before we left (still crying).  But I got a grip and were off.  Below is the view of my ladies and gentleman in an airport.  They did so amazing!  Even in the busy airports when I was trucking for another terminal, they grabbed their carry-ons and followed.  I did tell Steve if 1 more man says "5 girls you poor guy!"  I could say something not nice back!  He is VERY lucky to have these 5 beautiful amazing ladies.  (sorry bout the tangent)

 When we arrived in Orlando we met, Roger.  He was a very kind retired man that was holding a sign that said "Give Kids the World Welcomes, Brooke Koeman!"  Our own welcoming committee!  Roger asked us the last time someone told us they appreciated us?  He then said, it's easier to give than to receive.  But this week we were going to receive.  He stated that we had been through alot in Brooke's life and all had to give, now they were giving back to us.  WOW, you guessed it, cried again.  Leah laughed at me and I promised I would get a grip.  It's so humbling to be put in that position.  We feel honored that God gave us Brooke, honored that He has in trusted us to take care of such a delicate life and that our girls have just embraced the changes in their life.  We have never felt we needed or deserve anything back.  Yet here we stood.
From there Roger took us to get our rental car, Brooke got to pick out what mini van she wanted, and we were off to Give Kids the World.  Once we arrived at this resort we met with more volunteers that explained their establishment and how our week would go. 
I will try and briefly explain Give Kids the World (GKTW) http://www.gktw.org/ .  It's a 70 acre resort with approximately 147 villas.  A villa is a 2 bedroom, 2 bathroom, living room, kitchen area, that we stayed at.  It appears it all started years ago when a family was given a name of a man that own hotels.  Their daughter was ill and they wanted to take her to Disney, but could not afford the room.  This man offered them free rooms so they could take their daughter on vacation.  Unfortunately, the little girl got ill and did not make it.  This man decided he wanted children that were ill to have a place to go, and an experience of a lifetime.  GKTW runs with approx 95% volunteers, 1000+ volunteers a day.  We met some retired people that come down in December and stay in Kissimmee til April, just so they can volunteer.  There is never a crabby person, they are always smiling, and you are constantly hearing, what can we do for you?  Can we help you?  Are you having fun?  They also never ask a medical question.  We never had to explain what was wrong with our daughter.  We were a family, just like everyone else.  If you ever want to volunteer somewhere, I highly recommend this place. 
So that's the low down.    In the mornings we had breakfast at GKTW, met with Disney characters, rode horses, and the carousel. In the evenings they had activities like Halloween, Christmas, parties, games.  Then there was the playground, toy boats, train, water park, fishing pond, putt putt golf and on and on. 
We didn't usually hit the parks til 10a.  The night before we left we showed the girls the map of the park we were going to and they picked out what they wanted to do.  When we got to the parks, we went right for where they wanted to go.  When they got sick of it, we left.  We didn't feel the pressure most people feel to "see it all."  We knew with having 5 children that was never going to happen.  The crowds and noise was VERY overwhelming for Brooke. Upon talking with other parents at GKTW, their kids with health issues (of all ages) had the same response.  However, we never had to wait in a line and we we had front row seats at all the shows.  (COMPLETELY SPOILED!)  We got to experience Magic Kingdom, Animal Kingdom, Hollywood Studio's and Sea World.  Leah, Megan and I went to Epcot for a night to see the light show and we rode all their rides (Megan did not want to visit any countries because she was on vacation and that did not entail learning anything, hmmmmm) 
It's hard to put into words our experience.  It was phenomenal!!! It was nothing we will ever experience again.  Someone told me Disney is "the happiest place on earth!"  I felt bad because I didn't see it.  Don't get me wrong Disney is AMAZING!  And if you can give your kids the experience I would recommend it. Our kids only lasted 4-5 hours and they were done.  They wanted to go back to GKTW, which we did.  There is such a peace about that place.  It just makes you smile!  (Not to mention unlimited ice cream). 
There are obviously many other stories and memories that we'd love to share.  If you want to ask any of our children or us about the trip, please do.  We would love to tell you about it. 
It's nothing we will ever experience again, nor do we want to because we understand what all those families went through to get there, and you don't wish that on anyone.  We just praise the Lord daily of the place we are at today and we understand that He will carry us all through in our future!!
Thank you for all the prayers. 

Here's a few pictures, I will post more when I get more time.

The girls after their horseback riding! They even got hats!

Breakfast!  Every morning, Ask and you shall receive.  Craziness!

Characters!  I have better pics of them I will find.  

This is me on a chicken!  Leah told me more than once I was acting like a 2 year old.  I posted this just for her, to prove I do not care that I was acting like a 2 year old.  You are never to old to be silly :)

"Let the little children come to me"

Ironic that my devotions the past 2 mornings have been about how much God loves the children.  About how Jesus had the children come to him, how he interacted and played with them.  How He got on their level.  Irony? I think not!  We have Disney coming up.  The excitement in this house is starting to peak.  The twins are EXCITED but I don't think they understand the magnitude of this.  Megan made a power point presentation for the twins telling them all the things they can do at Disney and how much she loves them and is happy for this opportunity.  (WOW that one brought me to tears). A friend asked me if I was excited.  The answer is YES!  As a parent this is not an opportunity you get.  We get to be kids with our kids.  We get to play, follow them around and laugh.  This is their vacation and we are so excited to let them lead us.  We feel so blessed and grateful!

As of last week we weren't sure what was going to happen with the vacation.  We had the stomach flu reside in our house once again.  It was fairly quick with most of us, 24-36 hours.  Then there is Brooke.  Since she cannot vomit (not that she didn't try), she had diarrhea 10+ times a day.  Surprisingly she was acting pretty well, but we were seeing her weight literally go down the toilet.  2 1/2 pounds in 5-6 days gone.  We were bummed.  I had called my mom and told her we were worried about Brooke.  The next day Brooke woke up and said, "I want bacon and ham!"  And she ate it.  Steve and I decided if we would have known grandma had a direct link upstairs we should have called earlier.  My mom just explained God was just showing us patience.  He's in control and He will take care of us. 
With all that being said we were slightly worried about going back to feeding therapy.  I even went and bought a scale so we can keep track of Brooke's weight.  But talking with Miss Nora, we have 1 more visit at feeding therapy and she has "graduated!"  The last visit is really just a wrap up, (and I said I would bring cake, go figure :)  She has done it!  She (and Steve and I) know all the tools we need for her to eat.  The only thing we are working on is endurance. That's going to take time. She seems to be eating CONSTANTLY.  (secretly it was nice when they had the flu.  It was a few days of no one saying, "I'm hungry", "I want a snack", "EWWW supper is gross")  She does eat often just not enough to keep up with her growth, so we are currently doing 1 feeding a night, which is much better than the 4 feedings we use to do.  WOW, never thought we'd see the day.

I am beginning to see a pattern.  There were so many things we never thought we'd see Brooke do. Eat, sing with the kids at church, live like a "normal" 4 year old.  A long time ago we gave Brooke to the Lord.  We asked the Lord to take her, we felt she would be safer and pain free.  We know He could provide better than we could.  Over the past 4 years He has shown us to do this with all of our children and ourselves.  Surrender to Him because He will care for us, protect us, and lead us.  We have to remember to not take the reigns back from the Lord.  He has this under control.  It's an amazing, peaceful place to be. 

Matthew 19:14 "Jesus said, "Let the little children come to me, and do not hinder them, for the kingdom of heaven belongs to such as these."

Happy 2013!

I am sitting here trying to recall what milestones we hit in 2012. 
Brooke was potty trained!  Praise the Lord!!!
We started feeding clinic.  A challenging but growing experience.
Brooke was released from house arrest.  And boy has she blossomed.
We got Jack :)  (another challenging and growing experience)
Brooke had no major set backs and is back to seeing her pediatrician (normal MD)

What an amazing year!  We have so much to be thankful for.  I love to watch my girls and imagine how they will grow up to use the gifts God has given them.  They are all so different with such amazing talents. 

In December Brooke went to her "normal" pediatrician and had a physical. She did receive another round of varivax (chicken pox shot).  We will check in April to see if this works.  If it does she will start getting caught up on vaccines for school.  If it doesn't work..........beats me.  Guess I'm not too worried about it :)  Other than that, she's growing well (with the help of growth hormone :) and all is good. (with the exception of a cold and some ear congestion.  On antibx for that)  She doesn't go back to her Bone Marrow MD til April.

At her feeding therapy session last week there was talk of "graduation."  I had to process that.  Really?  We are almost done?  Don't tease me!  Her therapist was reminiscing how far Brooke has come.  She started out doing NOTHING!  To screaming and throwing food at the therapist!  To calling the therapist names!  You get the picture................to where we are now.  Brooke goes in with her food, sits down and eats it.  This doesn't mean we are done with tube feedings.  We are down to 1 a day,  whoooo hoooo!  It's all about endurance.  She just wears out.  We'll just have to buy a scale and keeps tabs on her weight.
I explained to Brooke, hopefully she will be done soon.  Her response, "who's going to visit Adi's aunt?"  Lately when we go to clinic we go visit a friend who is pregnant and staying in the hospital.  Brooke does not want to miss that visit :)  So our new prayer is Brooke can graduate from feeding therapy and Adi's aunt can come home the same week :)

So onto 2013!  Another year of new beginnings.  We have a Make A Wish trip planned.  Our prayer is we can keep all 5 kids healthy before and during the trip.  We are thinking of keeping the twins home for a week or so before we leave.  Some sanitary precautions.   Happy 2013 everyone!  Here's to a New Year with new journeys God has laid out for us!  God Bless !!!

Who would've thunk!

 Tonight was our Christmas program at church.  It was the twins 1st program, and I realized it was the 1st time Steve and I had been to this particular service at our church.  Since Brooke didn't go to church we would alternate Sundays that we'd attend.  Sometimes we'd just stay home.  It was hard not to go together. 

Tonight we sat in church with both of our parents and Miss Dawn.  It was a candle light service, so it was dim.  The shortest kid there, was our's.  And the tall kids, were ours :)  The kids started singing and there was this LOUD, SHOUTING child giving it her all.  I laughed and laughed, then the tears started coming.  She was doing it!!!  She was there!  Miss Dawn leaned over, crying as well, and said, "she's up there!"  Brookie was so so proud of herself.  She had been practicing those songs for weeks (ask any of us, we've heard them :)  I assumed she'd be more shy when she got in front of people, but she was not.  She gave it her gusto!!!  Sometimes the smallest one's have something to prove!!

The rest of the girls did amazing as well!!!  Macy had those motions down, but she was looking for the older ones every once in awhile.  Needed the comfort of her older sisters :)  Megan and Ash weren't super excited about it (they thought they were too old)  but you are never too old to glorify our Lord!  And they smiled and did just that.  Leah volunteered to help out with the younger kids.  I said to Steve, I just got the best Christmas Present.  All 5 kids in the program!  Steve said, "I didn't think I'd ever see this day."  We are blessed by the best gift ever!  Children! 

I do have to add, Brooke continued to sing all night.  "A rat a tat tat, and a thump thump thump, Noah built a great big ark. Get on the ark is gonna rain, here come the animals to bite you."

 

Steve and I were like, "What did you say?"  So she sang it again.  We then asked her, "Isn't it, here come the animals 2 by 2?"  Nope, TOO BITE YOU!  Oh brother, we have work to do. 

And yes, the twins have matching dresses. Leah told me it was ok as long as she didn't have to match them :)  They still think it's cool so I'm going to enjoy it for a little longer.

Merry Christmas!  Hug your family, Love them, and don't get caught up in the worldly version of Christmas.  It's so much more!  What an amazing celebration of Life, Peace and Joy! God is SOOOO SOOOO Good!!

Parenthood

There is a tv Steve and I like. Parenthood.  It's about families and their lives.  Last night had many "issues" going on, as usual.  Steve and I were zoned in on 1 circumstance.  A mother of 3 has cancer.  And due to her chemo she had a bad infection and was in ICU on Christmas eve.  They told her husband she might not make it. He cried, asking God not to take her.  (That's the short version).  Steve and I sat there intently watching, I had tears streaming down my face and Brooke just STARRED at me.  You could tell she wanted to say, "what is your problem?"  
Steve laughed at her.  We talked about if she'll ever understand the magnitude of emotions we have because of her.  Will she ever understand 4 years ago, Christmas eve we uttered those same words to God.  Do we want her to understand?  She already thinks she's a princess, that information may not help the situation :)
But that's the past.  We are happy it's not now and thankful we have that situation to build off of who we are today.
Still have the stomach flu flying around this house.  I must admit my sympathy meter is getting low.  Most of my girls are not really whiny when they are sick, so that's good. It appears the last kid has it today, so hopefully we'll be good to go by tomorrow.
Brooke tends to hold onto the symptoms longer.  She is no longer dry heaving, but the other end is flowing quit freely.  We've gone WEEKS+ backwards on the feeding.  We are thankful she still has the button because it's gotten good use this week.  We were down to 2 feedings a day, but now we are back up to anything we can get in her. For some reason she will only eat ham right now (I assume it's the salt content she likes).  Maybe we'll try some bacon today.  However, she acts ok.  That's the main thing :)

(Notice there is no picture of Leah.  I was worried she would never talk to me again hehe,)

(These 2 are acting well.  Wild and crazy as always :)

 

Blessings to everyone!  Christmas is just around the corner.  Have a great time enjoying each other and remembering the reason we all gather together.  If you get annoyed with the parties/people and are too busy, please take time to be thankful you have people to get together with and love. 

A "peace" of tranquility........

 Tuesday night, I tucked in the girls.  There were MANY tears.  And the conclusion was, "mom never goes away for more than a night."  Megan was certain she was going to not get up for school, and a couple were wondering what they were going to eat.  I think they all forgot they have a VERY capable dad.  Steve just said, "go, have fun and relax."
Wednesday morning we were off!  Myself and 2 friends, left to Florida.  (I laughed because when I saw this picture I said, "I look like a banana."  When Steve saw the picture he said, "you look like a banana."  HELP we are thinking alike :)

Our car!  Yes a car! No minivan  for a few days.  I must say we didn't even get lost.  Maybe a few wrong turns but not actually lost :)

 

 Oh the view!  I called my mom one morning and said, "I am sitting on your lanai, drinking coffee and doing devotions.  I think I am in heaven!"  She agreed, it's a place of peace.

This is for my brother :)  We have an addiction to this juice in Florida.  We use to ship it home (before all the crazy regulations)  It's amazing, better than dessert

 Another favorite!  I LOVE crab!  It was not quite as much fun eating it without Steve laughing at me the whole time, but it was still good.  It just like melts in your mouth.

 A friend I found.  It looks like a worm and was the size of a worm but it was a black snake with an orange ring around it's head.  I'm easily entertained :)

 Another friend!

 What I came home too.  Our joke is every time I leave (even for a night) someone pukes.  Well, Missi and I decided Saturday we didn't want to catch the early am flight home (too early, we wanted to sleep)  So we caught the 6pm flight home.  It appears by 3:30p Steve had 2 girls vomiting (well Brooke was trying).  Oh boy!   What a man!  It was a rough night for Macy but I was glad I got to be here for her.  And she's appearing feistier. 

 As I put girls to bed last night Megan said, "you are not allowed to leave again. We need you."  Macy told me today, "Megan picked up everything around here, because no one else wanted too."  Ahhhh the truth. 

Brooke's comment was, "I had fun while you are gone.  You can go away again." 

 

It was so nice to be wanted, but it was also so nice to know the one I thought needed me, is doing ok without me.  It was amazing to rest, relax.  What a gift from my family and God. Blessed!!!