Race for the Cure

Linda, Marissa, Aunt Brenda, Linda, Rose, Dar, Leah, Shelly and Brooke. Aunt
Brenda is also a Breast cancer survivor!

We took Mom with us too :) She's not going to like that picture :) Mom walked in Florida.

Here we go mom and Aunt Brenda! All these people are for you! You know how

I LOVE crowds!

We did it! There were so many people that running with a stroller was difficult, but with Leah's persistance we ran 2 miles and walked the rest. I had a hard time keeping up with Miss Leah.
Team Rosebud!!

Thank you to everyone that sponsored Leah and I. We had a great time for a much needed cause. We are so blessed to have my mom, Steve's mom and my Aunts, all that have battled Breast cancer. Sometimes I think there are too many runs, walks etc to raise money. But to see Leah's excitement, that she is doing this for someone else makes it all worth while. Thank you Lord for all these wonderful women in our lives!!!

A little R & R

Time for a little rest and relaxation at the Koeman's. My parents headed to Florida, not by their choice. It's was God's Divine intervention to have a few condo problems and get them down there sooner than they expected. Even if they have some cleaning to do, it's Florida, what's not to love :)

Steve got to go hunting for a couple days! YEA!!!! Steve has not gone hunting or away since the twins were born. Now that is dedication! However, living with 6 women may make him crazy. I told him, if he doesn't go away the girls might paint his nails and put bows in his hair :) (he's never had his nails painted, but he has had bows in his hair :) He was excited but held on to Brooke a little longer before he left :)

The insurance company called and approved a private duty nurse to come over once a week for 6-8 hours. That means I can work and not feel like I'm burdening others all the time. I may even be able to get groceries during the day :) My mom was a little sad that one of her babysitting days got taken away BUT I reassured her I have plenty of things to do, if she's bored :)

Saturday is Race for the Cure to raise money for breast cancer research. Leah and I have done this for 3 years. The other girls are a little young yet. So my mom will walk in Florida and Leah and I will walk/run in Grand Rapids. (Leah says run!) My Aunt and friends of my mom's will also be there. We are Team Rosebud!! Leah is so excited she can't sleep. How cute is that! I'm just praying I sleep well because I need all the help I can get to keep up with that girl. I'll post pictures soon.

One more thing......Brooke ate 2 corn puffs today! WOW Brooke! It's a start. She had some juice but Macy drank it and laughed.

Koeman update

Our H.C. Girls!
Steve and Brooke went to clinic Monday. All was the same. Blood counts are acceptable. Her IGG level was up, which means the IVIG that we did at home worked. So we'll do it again the end of the week. Her feedings are acceptable. She is by no means the "big eater" of the family :) We are still working slowly to get her to put things in her mouth. Last week she sucked the salt off a chip, which doesn't seem like much, but for her this is a huge accomplishment. She is also working on her 5th tooth. Macy is sporting 10 teeth now. All the better to bite with :)

Macy got a case of the pukes Monday night. I decided Steve and I are quit comical at 1am cleaning sheets, mattress' and washing the kid. The thought of it makes me laugh. Not sure Steve is laughing. Macy had a good day today. Ate little and slept lots. She gets really angry if you tell her she can't be with Brooke, that has been a challenge. Hopefully no one else gets it.

We have realized illness comes from anywhere. Macy hasn't gone anywhere and she got sick. There is only so much antibacterial hand sanitizer will get rid of. The rest is in God's hands. Actually it's ALL in God's hands. Steve and I don't worry about Brooke getting sick. We keep her home and do the best that we can. God is in control. When we look back over the last year it's amazing how far she has come. To be totally honest, I did not think she would be where she is today. The strength she is gaining and the personality is proof that God heals.

Many of you may get the "Connections." Brooke's picture was in there for wearing the school t-shirt, along with a few other babies. I laughed when I told Steve, "it looks like there is something medically wrong with Brooke." OBVIOUSLY!!! Up at Spectrum all the kids look like Brooke, with chubby steroid cheeks and bald (she grew hair now :) At home, she's Brooke. Our cute, little chubby 1 year old. It seems we have been living in a different world. Hopefully not too much longer and the world will be introduced to Brooke. If she is anything like her sisters, WATCH OUT WORLD!!

Until the day when Brooke gets out into the world, I'll keep posting pictures.

This is Steve's FAVORITE past time. Spoiling our children.

Change in plans!

We were suppose to do IVIG at clinic but there were some insurance/law issues about getting medicine from a home care clinic and administering it at a hospital. Whatever!! They called and said we couldn't do it at clinic. So then I call Steve and tried to explain the situation but instead cried. I tend to not like it when things don't go as planned :) So my WONDERFUL husband calls the insurance company and everyone else he has to and in the end there is too much red tape. SOOOO we do it at home. I was just so frightened of reactions. If something happens I am 30-40 minutes from Spectrum. But that was not for me to worry about. Then to give it, we have to put a small, short needle in her thigh. Well, I don't want to do that to my daughter. A friend told me to show her a picture of Barney while she gets the shot so she doesn't like him. What a smart woman!!!

Thursday morning shows up, the infusion nurse comes at 11am and we get things started. The process has gone well. I don't worry about setting things up, I can read directions. But I HATE it when she screams and gags and I can't fix her. Dr. Mageed's and Duffner's nurses are wonderful. They have called through out the day to check on Brooke and her obsessive compulsive mother :) Brooke only had 2 gagging episodes and a short crying fit, then she slept for 4 hours. The infusion went in her rt thigh, so her rt thigh is bigger than her left, but they said 24 hours that will go away. She is happy and playing. My anxiety was all for nothing. So, now that it worked, they will check her numbers Monday and the plan is to do this once a week to keep her IGG levels more level. Today she ended up with 11 hours of IV's. Good thing they are portable, because I like to do things. Steve was gone tonight, so the girls and I went through take out (many different restaurants, we didn't all want the same thing :) and then we ate at a park. Have IV will travel. God once again showed me, I am not in control. It seems so easy when things aren't going as I planned to get upset. But God brought us through another day of first, and it was a good day.

"Trust in the Lord with all your heart and lean not on our own understanding: in all your ways acknowledge him, and he will make your paths straight." Proverbs 3:5-6

Brooke scooting backwards.

Brooke laying on tummy laughing. (not a sight often seen)

Brooke's leg with the IVIG runny. Brooke's "electronics." 3 IV pumps and a feeding pump.

Another busy week

Steve and Brooke went to clinic Monday. I think they were out in record time! 1 1/2 hours. Steve must scare them :) All checked out ok for the most part. She does have a cold, AGAIN, but if you think about it, she has had a cold most of her life, so she probably misses it when it's gone. Because she has a cold we are going to do IVIG this week again to boost her immune system. There is a "new" way that we can do this at home, but we need to be trained. Work was nice enough to let me work one BIG day Wednesday and then Thursday Brooke and I are off to clinic for IVIG training and to make sure she has no reactions. That'll be a long day but we are always up for learning new things. Please pray this goes smoothly for her. If things don't go perfect with her IVIG in the past she SCREAMS and is in alot of pain. Steve and I are a little nervous to try this because we hate to see her in pain.

This week she started with Speech therapy. They will work on her oral muscles and eating. I just ask they not make her talk more. 5 girls!!! OH THE TALKING!! :) So we have therapy 1-2 times a week for speech and 2 times a week for occupational therapy. + then clinic 1-2 times a week. This little lady needs her own calendar. We are so thankful our insurance approved therapy to be at home. So they come to us, since Brooke can't really leave.

We were weaning her IV meds but that has slowed down now that she has a cold. Hopefully next week we will continue to decrease her dosages. Obviously with cold and flu season coming we need to be really careful. I was hoping to get some restrictions lifted but I think I am too scared to take her anywhere. Just the girls going to school brings in more germs. We can't worry about the germs. She is in God's clean, pure hands.

Psalm 18:1-6 (NKJV) I will love You, O LORD, my strength. The LORD is my rock and my fortress and my deliverer; My God, my strength, in whom I will trust.

Breathe!

I wanted to give you an update on clinic today. Brooke's lymphocyte's are at 80% Megan's. That is good! Up from 60%. Brooke is making accomplishments. We went to visit her nurse friends on the floor and they were amazed at the improvements she has made and how much better she looks. The MD also was amazed at how alert, bright and into things she is. After the last few test results, Steve and feel like we can breathe! We have been holding our breath and living for the day for quit a while, which is ok. God gave us grace for each day. But now we feel that we can allow ourselves to think of her future. To imagine her growing up with her sisters and going to school, getting in to trouble, fighting with them and loving them. These are thoughts we haven't allowed ourselves to think, because we didn't know and why set yourself us for disappointment. But improvements are so refreshing!! The future is still unknown but there is light :)
Therapy went well! (Yes I said well.) I have nothing bad to say about therapy. She comes to our house, she has goals for Brooke and did testing on her. I no longer have the therapy stigmatism that I had while we were inpatient. Brooke is getting stronger and now things seem possible.
Now Leah is sick with a cold and this morning she got up and put a mask on. Seem's crazy when your kids get sick and know they have to wear a mask. But no complaints, she just did it! What great sisters Brooke has! We are so blessed!!! Next appt is Friday with neuro-development.

Happy Labor day!

Megan jumping off the dock
Paddle boat

Miss Brooke

I hope everyone had a great, relaxing day. As I'm writing this I am realizing it is a Holiday and Brooke is NOT in the hospital. GO BROOKE! So far she has only been home for Memorial day and Father's day. What an accomplishment :) I also FINALLY put the suit case away. I've had a suit case in out bedroom since last year. It has gotten ALOT of use but it seemed every time I put it away, we ended up back at the hospital. Now, I'm not superstitious, but that was a little crazy. It's all packed away, and we are sitting at home, all is good :)

The week went good. No new news, but no bad news. We got to go spend time with friends Saturday night and grill out. It's so great to have people you can call last minute and they accept that we have no life and need to get away. On Sunday we got to go to my parents to have a picnic with their small group. The girls got to swim, paddle boat and drive the golf cart. It's also been fun to have people see Brooke that haven't seen her in awhile. They can tell she is more alert and active. That makes parents smile :) Brooke is definitely becoming her own person. She has a little attitude that has a LOUD scream. Unfortunately because she had been so sick she is use to someone at her beck and call. Why would that change now? Macy has also caught on to that game and has this shriek that pierces your ears! What have we created! We don't help matters, but we realize the are only young once, so we hold them, carry them, play with them and just have fun.

This week is another week of therapy (yippee), clinic appts and seeing a neuro-developmental MD. At least we won't be bored.