Closer to Florida

We are getting closer to Florida and we believe it might even happen :) We are always a bit reserved when it comes to making any big plans. This is the biggest thing we've done since the twins have been born (besides spending 6 months at Spectrum or the "spa." :) I'm slowly trying to find summer clothes and get organized.
Steve and Brooke went to clinic this week. They had started her on a new med 2 weeks ago called Mepron. It was to replace Pentam (an IV they gave monthly to prevent PCP pneumonia which she had before.) The alternative to Pentam and Mepron is Bactrim which she is allergic to, and she tends to get headaches and be uncomfortable after pentam. Long story :) She got a rash 2 days after starting the new med. Being the good parents we are, we thought we'd just "watch it." It's only a rash, right? Well, the MD didn't think so and she's back on the monthly IV. So Steve had kind of a long visit with that. But her rash is gone :) go figure. There is really no good answer, so they'll just use the med that they think works best and makes her least uncomfortable. Other than that she's getting stronger and smarter.
I was home with Macy Monday because she was sick and Macy was LOST! She's not use to being alone. She brought me her shoes and yelled, "LET'S GO." I am amazed at how twins can be SOOO different. Not just medically but personality. It's a riot!
I've been asked many times, "when do you get alone time." :) Ashley told me the other day, "hey mom, if you want alone time you shouldn't have had kids." Then she smiled with a naughty smirk on her face. I get alone time like anyone else, I steal it :) I work, so I'm in the car alone, I get groceries alone and my kids go to bed at 8-9pm. So I have til midnight with Steve. We go out to eat with friends. It's not as bad as it might look. 5 kids are a blessing. When people decide to have kids, they decide they don't want to be alone. (I must have been really lonely :) If there is no one home, I am LOST! Just like Macy. I do remind my girls often, I will be old one day, and they will take care and dress me :)
Brooke's back at clinic next week and then we hope to get her on every other week visits.

Back from clinic once again. Brooke did really well. She didn't even scream this time. She likes John, the PA, alot. She laughs and plays with him. Her IGE (test that shows the B cells) has been trending down. (that's the wrong way) So we will do her IVIG weekly at home. That will hopefully help her cold that she has also. The antibiotics she was on didn't change any of her symptoms. Her pneumo titers (shows if she's responding to the vaccines she's had) were good. So the pneumonia and flu vaccine she's had should help keep her healthy. Her kidney functions (show's how her kidneys are working) were slightly elevated. That could be from the antibiotics or because she was ill last week. We'll just watch those.
So now that I told you a bunch of technical stuff, our plan is to just play til next weeks visit. We are back to weekly visits to watch her labs and cold. I've read some of the blogs from last year at this time. We have come a long way baby :) I'm glad we didn't know at the time what we were in for. It made the process so much easier.
Today Macy had a physical. She is 25 1/2 pounds and 33 inches. That is 95% for height and 75% for weight. True Koeman. Macy was excited today to go away with just me. She got out of the van and walked into the MD office like she was quite something. Crazy kid! She is always making us laugh and marvel at how a 1 1/2 year old can be so stubborn as to what she wants. She makes her wants known.
Our hope is to go to Florida in a few weeks to see my parents. The girls have calendars and are counting down the days. Steve and I are praying we get down there in 1 piece with smiles on our faces. (5 kids in 1 car, what are we thinking???) The MD won't let us fly. Please pray that this trip will happen. If anything happens with Brooke we stay home, but our girls will be so disappointed. Steve and I just want them to have fun for a week and relax. They so deserve it!

Haming it up!

I hope people are able to download these. Brooke was showing some tricks so I thought I'd try and post them.

Pictures!

This is Brooke taking her own pulse ox. She's so smart :)

Steve took the camera and computer, so I figured out a different computer and Leah's camera, yeah me :) Brooke has "perked up" today. Yesterday she didn't scoot anywhere and dry heaved alot, today she's back to her stinker self.

Busy, busy, busy

I thought I'd better post, it's been a little while. Not a whole lot is new. Dr. Mageed was happy that Brooke's lymphocytes are coming up. He said maybe her transplant is starting to take. Her next numbers are drawn in March. Her B cells look like they are not en grafting right now, so we may have to do IVIG weekly again. This will hopefully also help with her cold. She had a viral panel done on her snotty nose and it showed no virus'. She's on antibiotics and that will hopefully help her symptoms.
Steve left for hunting Tuesday. We were on pins and needles hoping all would be ok so he could leave, and so far so good. I must say Tuesday night was a little crazy. The kids were in rare form. Leah's tooth cracked in half, Macy put make up all over the floor and Brooke dry heaved all night. By 9pm I was frustrated and praying Steve didn't call or I'd cry. By the time Steve called I was under control. I was also worried how I was going to get everything done that was on the agenda for Wednesday and Brooke was still dry heaving. When I left the house I prayed, "the day is yours God!" He gave me extra time!! It was the best day!! I made all my stops, called the dentist (we'll wait with Leah's tooth til it bugs her), watch Meg's swim, made it home to start Brooke's feeding, then back to Ashley's class to help and saw patients in between. Thank goodness for a flexible work schedule, cell phones and a wonderful babysitter.
I am always amazed by the human mind. We have the ability to be frustrated, anxious, crabby and by a few thoughts we can turn it all around. I let my mind go crazy by thinking of all the what ifs..... and when you turn it around and say, it'll all work out, it's not in my control, just roll with it, life is wonderful. God is constantly blessing. We need to give up control and let Him run your life. It's so much smoother and fulfilling. I am excited Steve is getting to relax and finally have his time. He is an amazing man and my best friend. I am praying that he is having fun and not ONCE thinking about tube feedings, IV's or dry heaving :)

It's a New Year!

Brooke had clinic Monday. She has a majorly snotty nose, it's gross. And a weird tight cough. So they did a chest xray and that was good, which made me feel better. They did put her on an antibiotic and we have to go back next week. Oh well, what's one more trip to GR.

Brooke and I were in the elevator and another man came on (I usually try to get my OWN elevator. Too many germs in a small space.) Anyway, this nice man starts talking to Brooke. I told Brooke to say hi. So she said "hi" and waved at him. He was AMAZED! He couldn't stop saying "wow, I can't believe your baby talks." So after enjoying the compliments I had to tell him she's 1 1/2 year old. Then he couldn't believe she was so small :) He thought I had a very gifted 9 month old. In our eyes Brooke is very gifted.

Brooke has been on her hands and knee's scooting backwards a few times. She also chewed up a peanut that Macy gave her........then she choked. But the point is she chewed up a peanut :) Some counts came back and these showed that Brooke has 69% of certain cells are Megan's. That is good. This whole transplant thing is SOOOO confusing. Ideally she will be at 100% but they said don't plan on that. They would be happy with her hanging out at 70-80%.

Christmas break was fun but we are back into the routine. Saturday we managed some fun in the snow. Steve pulled the girls behind the Gator on a tube. Now they want to do it everyday :) Michigan snow isn't so bad. I'm trying to convince Steve we need to take them skiing, but that sounds like alot of work. I think we'll stick to the tube.

=

Happy New Year!

The pictures might scare you :)

This was a different New Year's than last year. Last year Steve and I debated who was going to the party and who was staying at the hospital. We both wanted to stay at the hospital. It was our 1st New Years apart in 17 years! This year we had friends over and an 80's themed party! Even the kids dressed up. The scary part is I really liked that style and wish I could pull it off in public :) We had fun with the kids and friends singing 80 songs, eating and dancing. The best part of 2010 so far is that Paul and I beat Cory at Euchre.

I've been thinking so much about 2009 and what a blessing this year has been to us. We spent 6 months total inpatient at Spectrum. It is such a wonderful, caring place. If that's where Brooke needs to be, that's where we will go. We have beat all "statistics" and we plan to continue. We were told most marriages don't last the stress of an ill child. Ours has grown stronger by God's Grace. Many people go bankrupt from medical bills. Brooke's expenses are over $700,000 and we have not seen one bill. Thanks to everyone that has made it possible for me to continue to work. And the BIGGEST one, we were told Brooke may not "make it." We were told that a few times, and she is here. Bigger than life (well she's kinda small but has a BIG personality). Those aren't statistics, that is our God at work. We are blessed and excited for a new year. What does God have in store for the Koeman's this year? We are praying that we open our hearts and eyes and see all that He has in store for us. Thank you Jesus for another wonderful year! Thank you everyone, for the continued prayers and support.

DOUBLE TROUBLE! I now understand that saying :) (Macy has M&M's drooling out of her mouth)

May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit. Romans 15:13