A week with nothing crazy :)

Maybe the craziness is over :) I guess we need to define "crazy." Brooke's appt went well on Monday. The poor MD had never seen her before so he was a bit overwhelmed by trying to read her chart and know where to start. Steve and I gave him the cliff note version but that's not always good enough for an MD's mind. He asked if we know what gene actually caused all these problems, because he's seen these diagnosis but not all in 1 kid. hehehe! We told him if he had extra time research away, but we are at the point, to just fix the current problems at hand. We don't need a diagnosis, we just know this is how God made her and she's so cute how could you not just love her!!! So he was going to "network." That means talk to her other MD's involved, set up some ultrasounds of her kidneys and abdomen and see him again in 4 months. He is following up with ultrasounds and tests that were done when we were inpatient. That seems like so long ago. It currently isn't causing problems so, no worries :)

My doctor "claims" my reflexes are slower so my thyroid is "slowing down." Since I don't have one that would make sense, but I don't really need my reflexes right :) I refuse to slow down and claim it's mind over matter. So I carry on. I am on the thyroid supplement and get levels checked in 3 weeks. I have been able to do my running and keep up with the girls so I am happy. SOOOO, the whole running thing?!?! In February I signed up for a 1/2 Marathon in Chicago. It is for a good cause that has support my kids through all of Brooke's issues, making them feel so important and letting them know it's ok to feel sad, mad, happy etc. Great program called SuperSibs!! So, my "mind over matter" is my self talk that I can do this :) Steve told me to quit, but that didn't sound like fun. I went 5 miles this weekend and realized 13.1 miles is a LONG LONG LONG way. :) But it doesn't take coordination so I should be ok. All I have to do is talk to myself to 13.1 miles and keep moving :) My sister in law is a marathon runner, crazy loon. Just kidding Lisa! She is my inspiration and also my back up plan. If I cannot do it, she obviously can :) Thanks Lisa, Love you! But I don't plan on having you run it :) However it puts my husband at ease to know that there is a plan. I'll post the link if anyone wants to look at my "SuperSib page."

http://supersibs.donorpages.com/TeamSuperSibs2010/skoeman

Brooke's next appts are Tuesday. Have a great week. Enjoy this beautiful weather!!!

MD appts

Well, I'm over my anger management issues :) I giggle because when someone gets mad, we always try to "diagnosis" why they are mad. I love my friend that called and said, "yea, your mad! Quit taking all this in and get mad! It's not fair and it sucks. It's ok!" Thanks Missi for making me feel "Normal." :) And all the friends that were "ok" with my crabbiness. I Loved all the phone calls and talking with people. With that said, I can't stay mad long. It was over with by Tuesday :) Steve took Brooke to the MD at 7:00am today.(EARLY) He said, yes she has osteopenia, or brittle bones. He showed Steve xrays from when Brooke was in the hospital. Her bones were normal then. Normal growth, no deformities, not brittle. So he said this isn't something she was born with, it's probably medically induced. Which was suspected, but still not fair :) She see's her neuro-developmental MD June 1 and he turfed any further testing to them (watch out Jane here we come :) For now he said we might be seeing more of him. He wouldn't be surprised at all if she broke more bones. At least we are prepared for that, so if it happens it won't be so shocking. He also said they have fracture clinics. So if she has any issues or trauma to call there and we won't have to go to ER. Another answer to prayer! ER is great when you need them, but our anxiety level goes up 10 times when we walk past vomiting sick people with our kid with no immune system. I bet I'm the only parent that got in the ER room and cleaned every surface :) It brings germaphobic to a whole new level :)
Onto my endocrine appointment. I wish I would've change MD's years ago. This guy is great. He has personality and is real. It comes down to I have 2 options. 1st go let my body go into hypothyroid mode now and do the radio active iodine (which is a pill you swallow. The cancer and left over thyroid tissue sucks up the iodine and radio activity and it dies.) Or I can wait. They start me on thyroid replacement now and when we want, or if my labs change, they do the radio active iodine. It could be 6 months, it could be 4 years. The success rate seems to be the same either which way. After Steve and I discussed (people may disagree and that's ok :) we are going to wait. Because the twins are so young I'd have to be away from them for 1 week minimum. I don't see that as a good option at this time. If it was life or death, we would do it, but it's not. So I am VERY excited to live my life, work, play, camp and carry on as normal. So when the time is right we'll do the treatments. God hasn't lead us astray so far and we presume he'll show us the "right" time. Again it's His time frame, not ours.
WOW, wasn't I long winded. It's been fun to be outside and enjoy the kids and warm weather, even got some running in. Life goes on as normal, or as normal as can be. We'll just plan on the "bumps" and continue to be eternally grateful for everyone that helps us through.
Next MD visit is for Brooke on Monday and then again on June 1. I'll keep ya posted.

"how much more can the Koeman's take?" "what's next?"

Those were questions asked when I was diagnosed with thyroid cancer. I said "don't say that!" I'm not superstitious but why open up any doors for more "issues." WELL, we've been super busy! Haven't even looked at a computer, unless it's work related, for 3+ days. Sunday Steve called me at work. There was "the tone." Brooke had been "assisted" upstairs at grandma's to play with her sisters. However, sneaky Brooke went her own way, right down the steps!!!!!!! It sounds like she may have made it 1/2 down on her butt before rolling down the rest. Steve was mortified but Brooke had calmed down and was ok. On Monday yet she wasn't using her rt leg. Our sitter Dawn, also said, "somethings wrong." She just wasn't herself. So off to Spectrum for 6 hour visit in the ER. They found "residual deformity related to trauma." amongst many other things. One of the three orthopaedic MD she saw said she had old stress fractures and osteopenia. WHAT!?! Why? Her bones are weak is the bottom line. So her leg is in a splint and we hope to see orthopaedic MD next week. When is this going to stop! I have had enough and I'm done. I was mad last night! I'm sick of my dates with my husband being at Spectrum (cafeteria food is not that great.) I'm sick of just getting my arms around 1 diagnosis only to find another diagnosis. My arms aren't big enough for any more diagnosis! I told God, "I'm waving the white flag! I surrender!" My calm husband said, "at least we found this out. Now we can go to ortho and find out what we need to do." In my anger I said, "then what! WHAT'S NEXT?" He said so calmly, "don't say that. We get up in the morning and do it again. And the next morning we do it again. We just keep going." Such a simple philosophy but sometimes so hard! I have no desire to lay in bed and let the world go by, I just want my daughter to stop having to suffer. I don't want anyone's child to suffer. I still long for the day when they say, "alright Shell, she's all set. Go ahead and show her off to the world!" But she's not a car so that probably won't happen :) Instead we will keep her home, and I'm thinking wrap her with bubble wrap (kidding). We had a talk with the girls about being gentle with her and then I caught Macy sitting on her tonight. SOOOO, I can stress about this (which I have for the past day) but now it's time to release it back to God where it belongs. So it's His! She is His! He is our great protector and provider. He won't give us more than we can handle. As much as a padded room and group therapy sounds tempting :) I'll stay here at the Koeman compound and take care of my chica's. I am so blessed to have a babysitter and mom that did my laundry and picked up my house (thanks mom and Dawn), a mother in law that went with Leah to her orchestra concert, Mark and Lisa that had a total of 7 kids last night to feed supper and put to bed (they need the therapy now). And friends that show up at 10pm to pick up the pieces of our hearts and prepare us for the next day. We require alot of help, which is very humbling to me. I still like to and want to do things myself, but I've been told lately I'm stubborn. (Yes a family member called ME stubborn, I won't name names :). So thank you all for your help the past few days/weeks/months/years :) Someday life will calm down and I can return the favors. The crazy thing is, I don't want anything to change, except for Brooke to stop hurting. Everything else is ok, fun and experiences of life. God will carry us through and I am so thankful. "His mercies are new every morning." Thank you Jesus!
Oh sweet baby!!

Sometimes you just need some cake :)

The reason I smile! :) That's marker, not lipstick, hehehe

Post op appt

I saw my surgeon today. I am healing great! I have no more follow ups with him unless the swelling in my neck does not go down, but that could take about a month. There was cancer in one of the lymph nodes. So that means I will probably need the radioactive iodine. I have an appointment with an endocrinologist next week. In the midst of this I decided to change endocrinologist. It's not their problem, it's just my expectations are different. I am aware I have issues. :) We have been so spoiled with Brooke and such dynamic care, it's hard to be the "normal" patient I guess.
However, I talked to someone that has had the radioactive iodine. It doesn't sound like such a big deal. It probably won't happen for a month or so. They have to wait for my body to go into complete hypothyroid mode. So we wait. I don't feel any different right now. I'm sure I'll tell ya when I do. :) Next week Thursday I see an endocrinologist in Zeeland (alot closer than Grand Rapids). We'll see what he says. Thanks for all the cards and concerns. This really is not life threatening, it's just temporarily life altering. It's just makes our scheduling a little more tight and makes some family and friends a little busier with us being needy. I have some friends with grave concerns, which I appreciate, but I don't have the same concern on my heart. God's in control! Steve and I will take something out of this experience. We don't know what yet, but God will show us. We'll just open our eyes, and follow Him. Thanks a ton! Back to work tomorrow. YEAH!!!! Watch out home health, your 10 day vacation without me is done :)

Today is a cake eating day!!!!!!!

May 11 2009
TODAY!!

"Give thanks to the Lord, for He is good: His love endures forever!" PSALM 118:29

Why would the Koeman's eat cake? Not for breakfast this time, but today is May 11. 1 year ago Miss Brooke ventured back into our home. We had the surreal experience of, after sitting in a hospital room for 5 months, driving her home. The we had the overwhelming experience of "WHAT DID WE DO? We can't take care of her!" But we did. She's been loved, nurtured, IV's, tube feedings, meds, and for the most part, she has stayed healthy. She came home barely being able to sit up, she now crawls, pulls herself up, talks, hits, bites, rides a scooter bike and has brought joy to all of our lives. And it just became our routine, not overwhelming, not exhausting, just what God called us to do. I was accused yesterday by 1 of my 5 children of not loving them because I don't break up their fights. I giggled (which didn't help her anger), but some things in life change your view. When you have ongoing thoughts that 1 of your children may never fight with the others, somethings you let go. I am a normal mom. :) Fighting children drives me nuts, but I tell them, unless there is blood or a protruding bone you will figure it out and be a better person because of it. So, I do love my children. More every day! I love following God's plan. There is such an internal peace, even though, at times, the peace is challenged with fighting children.

Obviously you want to know about Brooke's appointment. She is up to 21#. Height slightly longer (but everyone measures differently). We were informed that our "new" best friends will be the endocrine MD, Dr. Wood. The Bone marrow team said they don't want to share us but with all Brooke's issues that's where we are headed. So our next appt with Dr. Wood is to be made yet, but it'll be this summer. We also have an appt in 2 weeks with another MD. So we'll see what happens with that. Her immune system numbers are holding their own. Her feedings are going as well as can be. We have 2 MD appt's June 1, and then we will address her developmental milestones, feedings, and BMT will start to test her T cells again. So status quo until June :)

Then me....I'm good :) Pain is fine, neck is stiff. I developed a fever this weekend and I'm still not sure what that was about. But I'm feeling better. I don't see any signs of infection so it must have been a virus. I see the MD Wednesday and I'm sure they'll have the results of the lymph nodes and further plans. I plan to go back to work Thursday. We have alot of camping plans this summer so I don't want to waste my vacation time off sitting around here :) I'll let ya know what the MD says. Thanks for all the help and meals! The girls (and Steve) are excited to come home from school and see what goodies there are :) Doesn't say much for my cooking :) I have lots of coffee and M&M's. I'm waiting to use them for the energy boost.

Day 3 post op

Besides the double chin and bruising all is well :) I can honestly say it doesn't really hurt anymore. I haven't been taking any pain meds and am bored! I've done alot of walking around the house. I even watched a movie last night. It's been years since I watched a movie. The girls (all 5 of them) went to grandpa and grandma blueberries for a sleepover. Which makes me more bored! They are my entertainment, laughter and joy but I'll guess I'll share them tonight. I told them to come back well rested and in a good mood :) We have been so blessed with so much help, play dates. cleaning and food. We are so fortunate and I am excited to be done with this so I can help others. My goal is to be back at work by the end of next week. I miss my little elderly patients and routine.

Brooke goes to clinic Monday so I hope to find out about her growth hormone and when we start that. We will probably start checking her T cell again in a few weeks. WOW, time flies. Have a great weekend. God Bless!!

The REAL George!

The best man in the world!! (besides my dad :)

The old neck.

I will now write my post. If you don't want to see the after pictures and pictures of "George" don't go to the end of the post. That's my disclaimer :) The OR nurse asked me why I wanted pictures of a cancerous goiter. My reply, "why not?" It's not something you see every day, and technically, it's mine. I grew it. Anyway, after a rough night, I am home. Didn't sleep much but that's because I refused to take anymore of the IV pain meds. They made me out of my head, and I have enough issues as it is, I don't need help. But now I'm home and feeling much better. The pain is controlled and I can once again swallow. My girls are trying desperately to be on their best behavior and Grandma Koeman is here to entertain them. Where would we be without family!! Grandma Blueberry got their dutch costumes ready today so they are all set for the parade tomorrow. I don't go see the MD til Wednesday. He said in 7-10 days I should start to feel the affects of hypothyroidism. He said I'll feel like I have 10 kids and want to nap all the time. Sounds like a great time :) By then Steve will be close to done with planting. Once again, it'll all work out. I hope for some rest tonight and less pain & swelling. Thanks for they prayers.

See it's not that gross. Even served up on a platter :)

Good bye George the Goiter. May you rest in peace.

Well it's done. The day went off without a hitch! I had some significant pain at 3pm, some nausea and then a long nap! If anyone stopped by and I was sleeping, I apologize. I sleep well on a good day. Give my drugs and I am OUT! My pain is now tolerable, my head is totally clear. I can think like normal. The girls came up for a bit. Ashley had a hard time. Her quote was, "Why does my mommy have to go through this?" With big crocodile tears flowing down her cheeks. Breaks my heart. Pray for the girls, that they have seen this valley and they will see the climb back up.
Steve and I had great talks last night about control. We both gave it up. He has a passion for farming and it's hard to let someone else in the controls. I have a passion for what I do. Home, my girls and work. It was hard to give up control, but it's also important that the girls see, we drop anything for each other. God 1st, Marriage/family 2nd, then other things.
Thanks for the prayers and thoughts today. We are so blessed. I have some great photo's of George, but I'm not sure who, if anyone want to see them :) So I won't post them. Good night all! Tomorrow is the 1st full day back to recovery :)

"Rain is a good thing"

We woke up Saturday morning to the sound of rain. Oh sweet rain! So the girls and I introduced ourselves to Steve Koeman. The poor man's been gone for 2 weeks :) He still had work to do but that meant he was home by afternoon. Last week was a little rough with the girls being sick and it seems mom gets taken advantage of when dad is gone. Either that or mom gets tired and just doesn't care anymore :) But a few days with dad home and we are back into our "Team Koeman" mode. The girls are healthy. Macy has started talking in sentences which totally makes me laugh and Brooke is standing up next to everything. She has also learned how to turn the TV off and disconnect the cable. Our front room is done and that is now our family room. My brother came and hooked up our cable and Internet. Brooke's crib is out of our dining room. The girl actually has a little space of her own. Today Megan got her cast off. All in all, a productive week.
Tomorrow is remove George the goiter day. Good riddins George!! People keep asking if I am ok, and I really am. I have my own way of dealing with "issues." Not sure it's the right way or healthy but it works for me. I just keep busy. Keep going, don't stop except to sleep. I have my lists made and schedule down. My hardest challenge is Brooke. Actually I dug that hole myself :) I like to be in "control." So I've always done her meds and most of her care. So to think about losing control makes me a little batty :) I owe my mom and dear husband A TON for letting me be my crazy self and just waiting to step in and take over when I can't do it. But they let me try. (They must really be laughing at me). I however believe in positive thinking. I was brought up being told I could be WHATEVER I wanted to be and go where ever I wanted to go. I still have that mind set. (Thanks mom and dad) So I think I will be just fine. Nothing a few pain meds and a scarf can't handle. God has a plan all laid out. So worrying about it won't change the plan, only cause me grief. Steve and I learned over a year ago to give everything to Him. We gave Him our daughter fully, and He gave her back. He is still healing her and teaching us daily to trust in Him and not fret the small stuff. This is an inconvenience but our time frame isn't His time frame. Since He's more important, I'll stick with Him. Thanks for the prayers! Thanks also for all the meals and my friend who set up a schedule and wouldn't take no for an answer. I do need help but I STRONGLY dislike having to be taken care of :) So I will try and get over myself and we'll keep ya posted after surgery. Thanks all! God is so good!!!!!!!!!!!