Surgery time

Friday at 8:45a Brooke will have her feeding tube placed and the Nissen so she cannot vomit. I can't imagine it'll be that long of a surgery. Then we wait and see how she does. The MD did start a new steroid today to hopefully help with her diarrhea. He was going to wait til after surgery but she's uncomfortable, so we pray this will help. Thanks for the prayers.

Friends gave us this and we Praise God for our constant reminder. She is safe with Him!

HE IS IN CONTROL!

Yeah God!!

God sent rain, that is not always a happy thing in a farmers life but this was a good week for it. This weekend Steve and I decided (with the help of Dr. Mageed) to get Brookie scheduled for a nissen (they take the top of the stomach and wrap is around the esophagus so she can't vomit) and for a "button" (feeding tube in her stomach). The MD feels she is able to heal from surgery now so we better get this done. So Brooke and I kinda need Steve this week and God knew that. It's He amazing!!! Friday is when Brooke will have surgery, not sure on a time yet. This way she will no longer have the tube in her nose and we hope this will help her lung status. Her weight is going up, 14# ( had to do the math twice, I didn't believe it) and she graduated to size 2 diapers!! WOW she's growing and fast!! She still has problems with diarrhea and diaper rash. After surgery they will try a different kind of steroid and see if that helps.
The other girls are amazing as always. We've had school programs and softball games that have kept us busy. I asked them Sunday if they could hang on for another crazy week and they were up for it. So here we go :) Thanks for the prayers. You are all amazing! People keeping telling me that we aren't asking for help, but we feel we are. Please know how much you are all helping us. I can honestly say I do not feel overwhelming stressed at all. This is all ok. It's not in our hands and we are surrounded by the most loving people. We'll keep ya updated as of the time of surgery on Friday. It is laporscopic, so that will help recovery. Thanks all!!!!

Let the planting begin!

Steve started planting today, with a very heavy heart. He is usually very excited to plant but he has "other" things on his mind. He said good bye to Brooke on Wednesday and said "daddy loves you, not sure when I will get to see you." That broke my heart!! But there are always Sundays. God gave us a day of rest for a reason. I was brought up that it's not the situation you are in that matters it's your attitude toward that situation. I later was given something that I still have on my wall and in a nutshell it says, life is 10% our situation and 90% in how we react to it. We were given 5 wonderful daughters. It's unfortunate that Brooke is sick but He will see us through. The next few weeks will be rough without her daddy here to hug her and love her BUT we are blessed. We have the best friends and family around. I have a schedule on the wall and it says who is staying with Brooke and how they know her. She is in great hands. We are so blessed!

Brookie and her tubes! Who needs toys?
Steve in the "digger." Oh boy, scary :)

The girls hauling shrubs.

On to the week: Wednesday was cleaning day. We had fun and got alot accomplished. The house is ready for Brooke. The big hole around the house got back filled and more tile was laid. My Aunt Brenda stayed with Brooke Thursday night, they both got lots of cuddle time. So fun! Brooke also kept Aunt Brenda up til midnight. I have a GREAT Aunt!! We did get some test results back that show she is aspirating some but we don't know what they want to do about that. Dr. Mageed will talk with the GI MD and the pulmunologist. So hopefully next week some answers. She is still on many IV's so we wait for some of her labs to come up so she can get off some. She also has a crazy bad diaper rash. At times it's bleeding. We pray that gets better soon. Thank you to EVERYONE that is helping us. It extends out so much to so many people. You are all so cherished and not forgotten!

The cleaning crew.

Happy Birthday Steve, A day late.

I tried to post yesterday and I was having technical difficulties. Anyway, Steve was 36 yesterday. Can't say he really got to do anything fun. He worked, got his haircut and played Mr. Mom. The girls sang Happy Birthday to him in bed but he said if I post the picture I'm in BIG TROUBLE! His sister made him a Cheesecake and he is now the envy of all the Koeman's. (except Jon who already ate a piece :) They are the best! Thanks Lisa!!
Brooke had and EGD (scope into her stomach) and bronchoscopy (scope into her lungs). They put her to sleep and she woke up rip roaring mad! She made it known she didn't like that, but she got over it. They didn't find anything crazy, which is good I guess. Her nasal passages were inflammed, maybe from the NJ, so they put her on antibx for that (possible sinusitis) and switched the NJ to the other nostril. They took biopsies of her lung snot, her intestines and stomach. So we wait to see what those show. We are interested in the lungs to see if she is aspirating or what is going on.
Her T cells came back, the numbers are a little different because it's from a different lab. But she is at 5% total cells are Megan. AND T cells: 40% of them are Megan's. That is a good thing. It means the T cells are engrafting and at this point that is what we need to happen. So as usual we wait and see what this week brings. The air ducts have been cleaned, carpets cleaned and today my friends come to help me with the house. Then my dad and brother will move in the crib and hang the blinds. Brooke then has her own room for whenever she decides to come home. I hope she knows how loved she is and how many people it has taken to make this happen. We'll keep you posted!! Thanks everyone!!!!!

Praying for the Burgess'

Steve and I wanted to ask you all to join us in praying for the Burgess'. They are a wonderful family we met at Spectrum and Braeden went home this morning to be with the Lord. He is safe in the arms of Jesus. There isn't always complete healing here on earth but there is healing in Him. Help us to pray Kevin, Dawn and there 3 children through this valley.

Doctors, Doctors, Doctors

Brooke saw 4 doctors today. Her regular Bone marrow doctor, her pulmonary (lung) doctor, her GI (stomach) doctor, and the newest one her neuro/developmental doctor. So what has happened this week? They did an upper GI to see if there were any obstructions that won't let her eat. That showed reflux (we already knew that) and she vomited up the white chalky stuff they gave her for a long time. BUT she happened to be vomiting when the neuro/developmental MD came by, which was good. That told her Brooke has bad motility. Sounds kinda funny! Mainly things just don't pass through like they are suppose to and it took her to 8-9 month of age to say, 'forget this, I will not eat.' That stubbornness again. She said Brooke will never take a bottle and this feeding thing will be a long road. So for now, we just use the tube feedings and start by having her play with spoons and sit in a high chair.
Next week Tuesday the pulmonary and GI MD's are going to do a scope down into her stomach to make sure everything looks like it is suppose to, and then check out her lungs again to look for aspiration or any other types of pneumonia. They will also switch her feeding tube to the other nostril to give 1/2 of her nose a break :)
The "H" words comes up often so we are getting ready. But cautiously! We desperately want her home but we have a very hard time believing it's going to happen. When we see her sitting in the living room we will do the happy dance and Steve will have everyone yelling "JAZZ HANDS" and dancing around. With planting season getting closer I do get worried. Steve and I are a team and we just work so well that way, with our schedule and emotionally. But I've explained to God that planting is coming and I just keep hearing, "TRUST ME, TRUST ME TRUST ME." So we trust Him! Why spend time worrying when we have 5 wonderful girls to enjoy and a full life to live! Thanks for the prayers and all the help. We are so greatful for all of you. You are all a testimony for our girls and us! We all see God's hand at work!

Happy Easter!

Many of you have seen the picture of Brooke and her Easter dress but many of you have not, so here she is.

The GI (stomach) MD saw her today and increased one of her medicines and is talking to her primary MD about doing a couple tests to see what is going on. One is a swallow study (we would like to see them try to get her to swallow something :) and the other a scope. So we'll see what comes of that the next few days. That is about the only new news.

Our Easter was Blessed! God is so good! We were blessed to have Steve's parent's stay with Brooke while we could be together. We got to have a dinner with family and the traditional Easter egg hunt. My parents pastors wife, Maria, and her sister in law Mary came over and gave us a prayer shawl and prayed with us. That was so nice, and the perfect day.

"The digger" per Ashley.......the digger has arrived and is fixing the basement. No more water in the basement for the Koeman's. Brooke can't have any mold or mildew in the house. So the repairs have begun. Thanks Scott and Ken!!

What a night!

The Dr told us Brooke has to eat to go home. (The "H" word again :) So as a mom, I'm like, "no problem." I got up to the "spa" last night and started with the baby food. She didn't even seem to mind it. She took 3ml (that's less than a teaspoon) and she started vomiting. Projectile vomiting. And she vomited about once an hour or more for 12 hours! It broke my heart to see her like that. At one point at night I laid my head by her in her crib and she took her little hand and rubbed my face, as if to say, "I'm ok mom." She was so tired this morning, she didn't want to sit up or play. When the doctor came in I told him I couldn't do it. My heart was broken and I couldn't torture my little girl. He agreed! He said sometimes things get mixed up and instead of food going down it instantly comes up. On Monday he will consult with the GI (stomach) doctors. They will talk about another medicine for her reflux or possible put a scope down to see if anything is going on. I felt bad leaving her this afternoon, but Steve's mom called at 7pm and said she took a big nap and was then sitting, playing and laughing again. She just needed to rest (and having grandpa and grandma spoil her helps too). So, no more food for now. The doctor did say the bone marrow is S L O W L Y starting to work but it'll take another 6-8 weeks to see if it works. If it doesn't we'll try another bone marrow transplant with chemo this time. She's doing well, she's 13#, her skin looks good and she's getting stronger. So we celebrate that and wait for the rest. If we can get the feeding undercontrol we can go home and wait. We'll see what the next couple weeks bring.
Tonight we got to take the girls out to eat and we gave them "Bravery Bead Bracelets." They are beads that represent everything Brooke has been through. So her sisters and I will wear them proudly. There is even a "B" bead on them for "bravery." We say it's for Brookie. Steve is back up at Spectrum and the nurses can't wait to dress Brooke up in her little Easter Dress. God has given up so much for us!! What an amazing weekend. He has brought us so far and without His love and hope we would've given up long ago. So much to be thankful for. Happy Easter everyone!! Remember the TRUE meaning!!

Labs are back!

Brooke all dressed up!

It seems that labs can come back in 24 hours. The doctor is not sure what Steve said to the lab but we got results yesterday. Her % is at ...........6%! Bummer! Nothing gained BUT it hasn't gone down. The MD said this is a slow process. Blood has also been sent to Mayo to see how her T cell production is doing and if her Thymus is working. We will wait for those results. They are starting her on antibiotics because she has ALOT of mucous coming out her nose and vomiting it up. It's turning yellow. So hopefully that will help. I tried to feed her yesterday and she vomited. So I tried again, and she vomited. Then I stopped :) Today we try feeding her formula with a syringe. She's sleeping now because she just got done with therapy. She sat up for 3 minutes! Yeah she finally met a goal :) Steve and I aren't "aggressive" therapy people and I think we've been getting on their nerves. They are so nice and doing a GREAT job but we are a little laid back. So this was a great milestone for them (and us.) I haven't posted pictures in awhile so I will get some on here

This is and ADORABLE hat she got. Thanks Aunt Hermina!!!

Macy on her way to stardom. Maybe she should wear a shirt :)

The girls at Renucci house for the weekend.

Brooke sitting up for 3 minutes!!

Lost

That is what happened to Brooke's last labs. Lost! It seems they can't find the blood from last week. I guess we weren't meant to know those numbers. Steve's wonders how that can happen. Well I work in health care and I'm a mom, I totally understand! I'm ALWAYS losing something. It's ok, mistakes happen. However it's not as easy when it's happened to your child. Steve, being the investigative one, has called the lab to try and remedy the problem. If he could hand deliver it he would. What a good dad!!
All in all the weekend went well. The girls had alot of fun and got to ride the Gator and a pony. Plus they have play dates, sleepovers and sleeping in this week. Who can complain! Brooke is still plugging along. Tube feedings are up, TPN is going down. She is getting more active. She DOES NOT want to eat. That baffles us. Who does not want to eat! So we keep trying.
Sunday the girls and I went to church. I felt most illness' were past, or we've had them all. It was so refreshing to see everyone and feel the love! It's also the girls school, friends and community. Someone told me they liked the blog because it was like I am writing to a friend. Please know that I am writing to friends. All of you make the difference and get us through. Brooke is changing lives and making us all dig deep to find what God has made us out of and what He has in store.
Hopefully this weeks labs will come back. Steve is on it :)

Weekend Report

We are not ignoring you :) just no labs results yet. Even the MD said every week it's one more day. She is happier and sleeping better. She rolls from side to side, plays with toys and shakes her head, "no, no, no." I tried to get her to eat and she shook her head, no, no. She is still really snotty and the MD said that is the rhino virus. She doesn't have enough immune system to fight off the cold she's had for 4+ months. The pulmunologist (lung MD) will see her again next week. Steve and I are gearing up for planting season. Once Steve starts planting let the chaos begin! Luckily we work well that way and we have called in the recruits. So we will fly by the seat of our pants and enjoy the ride. We feel at peace that it'll all work out. We hoped to have her home by the end of April but she's had a few set backs and home doesn't seem to be in the near future anymore. We are still going to get the house ready, slowly. We wait for her percentage to come back and next week they will check T cells, to see if they are growing in number and maturity.

"Open for me the gates of righteousness; I will enter and give thanks to the Lord." Psalm 118:19
"Be still and know that I am God: I will be exalted among the nations, I will be exalted in the earth. The Lord almighty is with us." Psalm 46: 10-11