Parties, picnics and PLANTING!!!

"SCHOOLS OUT FOR THE SUMMER" I use to LOVE that song when I was in school (yes it dates me). As a mom, I STILL love that song. I had to apologize to my children in mid May, when I quit school work. Megan came home and was upset with her spelling test grade. I said, "honey we studied those words everyday!?!" She proceeded to explain to me I didn't change out the spelling words and we studied the wrong words all week. OOPS. My bad! So, why not have a party on the last day of school. Megan and Leah each had 5 girls over night. That's right, 12 girls! What a riot!! I laughed and laughed. And I realize what great friends our girls have. Ashley decided she was heading out, and went to sleep at Grandma's for the night. She had big fun!!



On too picnics......my parents have a pond. The big fish were eating the little fish, so they got a bunch of guys and a net to catch them. They looked like fishers of men :) The fish they caught, they cleaned and fried. Along with burgers, hot dogs and lots of other food. A picnic isn't complete without CAKE!! Because someones turning 40, June 16 :) Yup, my big brother!! My brother is an amazing example of who I want to be. He is extremely caring and giving, with a big heart. He is a role model for a wonderful family. I remember talking to Leah awhile back and something came up where I needed help. Leah said "call Uncle Brent." I asked her why and she said, "you always call Uncle Brent." I asked her what that meant and she said, "that's family mom." I LOVE that! My brother does mean the world to me. Even if he is going to be old :) At least we get to eat more cake.

I Love these pictures :)


Planting.........OH YEA BABY!!! The tractors are running. I am LOVING seeing the tractors in the field, the dust flying, the smell of dirt. I told Steve I think this is the happiest I have ever been for planting season. He said its the happiest he's been to be planting. It seems strange that they are planting in June but it's not our timing. Once the bean planter was by our house I texted Steve a picture (Steve was in another field at the time). I almost feel that it's wrong to put the picture on here of a yellow tractor. But I did it anyway :) Isn't it pretty? Only country girls get excited about this.

The girls are keeping me busy, so don't get too much down time. That's ok, it's all in fun. Brooke did go to clinic today. Still waiting on some lab results. I wanted to take her off some of her prophylactic meds. The answer was "not yet." They want to see her TREC numbers go up first. That could take awhile. They asked the MD if we could lift some of our restrictions. He said yes, as long as she isn't in crowds or around sick people. HMMMMM, well that told me to keep doing what we are doing. We can go to a store/restaurant if it's not busy and no one is sick. So even if there is no one there, my mind goes to, what if someone in the last few hours was here and sick. So, we'll just stick to what we know. We don't need to go to stores or restaurants. We have our church routine down, where we alternate Sundays home with her. And it's summer. We can be outside and do pretty much whatever. So I thanked them, and Steve and I decided not to rock any boats. Next appointment is July 8. She has gained 2#. Praise the Lord!! Steve hadn't been home much and he told me she felt heavier (I thought he was weak from lack of sleep :) He was right. Brooke also see's endocrine MD July 8. They monitor her growth.

Have a great summer! Enjoy the beautiful weather. Oh I almost forgot!! We have landscaping!! I will have to post pictures soon. Thank you Clearbrook Landscape. I think our neighbors thank them too! We were looking pretty scary (that's a whole different post) Good night!!

True Peace

Brooke praying over her shoes. Don't ask :)

Have you ever tried to describe True Peace to someone? I did recently and it's hard. It's like explaining to someone how they know who is the right one to marry. You just know! It's a feeling you can't describe. Maybe I've blogged this before. But the subject came up again. I believe True Peace comes from God. It's this indescribable feeling that no matter what the outcome of this life here, everything will be ok.

A long time ago, 14 + years, Steve and I had to sell a farm. Financially it wasn't working out. That was a huge teaching for us. I learned how to stretch a dollar and Steve learn to hate eating spaghetti :) We actually had a lot of fun and it made us who we are today. We learned to put God first. We also learned, together and with hard work, we were going to be just fine. But I think I wasn't to the stage of life where I felt the overwhelming peace. But it prepped us for our future.

When Brooke was in the hospital and so sick, the first few weeks were rough. Uncertainty, no diagnosis, life, death. Steve and I talked last night about our true peace moments. And it was when we prayed and said to God "it's ok. You can take her and we will be ok. She was your's in the first place and we know we will be reunited again." The peace that we have both felt since that prayer is amazing. Someone said, like when we have baptism. But this is more than that.

I think the hardest thing in life is to let go. God decided it wasn't Brooke's time and we are SOOO thankful for that. But it changed us, for the better, forever. Not a day goes by that I don't see God in some form. Sometimes I have to look but that's me not Him. I want EVERYONE to feel His peace. I don't wish hardship on anyone, but God shows himself in so many ways. I just want everyone to have a piece.

So that's it for my thoughts :) I've had a lot more but no time to write. The weather has kept the farmers out of the fields and as much as that is not in our plan, I have a feeling God has a bigger plan. We are anxiously awaiting to see :) We pray the fields will dry out and they will plant like mad men.

The girls are great. Winding down with school, YEAH!! I am just as ready for summer as they are. Brooke is Brooke! I can honestly say I think she is 100% back from her last illness. Her feedings are going well (we don't say that too loud at home), her energy level is back, and she's back to trying some foods. She goes to the MD June 6. I already know what MD is seeing her, so I can tailor my questions according to his thinking, hehe.

God Bless and I hope you all find a piece of His Peace!!

Tulip Time Scrooge

You read it right!! I'm sure some people are "how could you NOT like Tulip time?" And I questioned that myself. I use to like Tulip Time. I dutch danced for quit a few years, went to parades, ate junk food. Obviously, Brooke complicated things this week. I had to get a sitter just to go to the parade. Steve says it's a phase. The phase of our life when we have kids in the parade, toddlers and Brooke. I am pulled in too many directions. (Not to mention Macy did NOT like the parade and left early with her Uncle Mark and Aunt Lisa, thank goodness for them :) This time of year I don't pray for rain but if it stormed on Thursday I wasn't going to cry. But we made it and it's done. Give me a couple years and I'll be excited for Tulip Time again. With Brooke being in the hospital and Steve working we just started the week out on the wrong foot. So we re group and try again.

Megan and Ashley are in ball so that occupies our evenings but it is entertaining to watch. Only a few weeks of school left and we are into summer. WHOO HOO! Brooke is doing well. Today is the first day I haven't heard her say "I don't feel good." She woke up happy! We are trying to get her feedings back to normal and she gets nebs 3 times a day to help with her breathing. We just have to watch her que's when she doesn't feel well. Leah's been a great help and is really in touch with Brooke (which is helpful since Steve's been working).

Taken from Jesus Calling

"Do you trust Me to orchestrate your life events as I choose, or are you still trying to make things go according to your will? "

"Do not fear your limitations or measure the days demands against your strength. What I require of you is to stay connected to me. When you face unexpected demands, there is no need to panic. Remember I am with you. Talk with Me, and listen while I talk you through each challenging situation."

2 Corinthians 12:9 "My grace is sufficient for you, for my power is made perfect in weakness. Therefore I will boast all the more gladly about my weakness, so that Christ power may rest on me."

Sometimes it's ok to get "beat down" to be reminded I am weak and I do need help from Him.

Comforts of home!

Yes, we are home!! After a LONG night last night, and a crabby mom (that'd be me) we are home. I am a nurse and back in the day I worked nights, so I understand the schedule and orders from the MD. I just think, at night, the seasoned mom's should be the nurses and not the new grads with no kids. They don't understand when you wake up a kid at 3am they are not going back to sleep and it's not cute!! So she finally fell back asleep at 6:30a and I stood watch. If anyone THOUGHT of bugging my baby they got the mean mom look and ran!! When Dr Mageed came in the bags were packed and I was ready to go. He asked if I was going somewhere :) Yep, I had all night to pack! All in all, Brooke is doing better. She had pulled out her IV yesterday and has times during the day that she perks up. She is somewhat tolerating her feedings, and we started up her nebs to ease her cough and breathing. That is all stuff we can do at home. Tonight Leah said, "Mom why did they send Brooke home if she's still sick." She gaggs alot, is quit pale and sits around. This is all going to take time. I feel if we are home, she can sleep, I can ease her back into her feedings and she can be stimulated by her sisters to get up and get moving. Virus' take awhile to get over. This was a good reminder, no matter how "normal" she looks to us on the outside, she is not on the inside. We have to be careful!
As for her IGG, it did drop to 430. Dr. Mageed explained it, she has some B cells from her transplant but she is not processing them through her thymus, so they don't mature. Dr. Mageed is still content to wait and see. He wants her back on IVIG every 3 weeks and is still discussing stopping some of her many meds.
After talking to him, I discussed with our nurse and social worker, we have 2 MD's with 2 different opinions as to what to do with Brooke. Dr. Duffner wanted to try her off IVIG and stay on meds. If being off IVIG didn't work then maybe do another transplant sooner rather than later. Dr. Mageed says, let's wait and see, and transplant later rather than sooner. We go back next week to have a follow up. I might pick their brain then. The nurse apologized that they weren't on the same page. I think it's great!! 2 minds that think differently. There are pro's and con's to both. Both MD's have Brooke's best interest in mind and I trust and respect them both. It's like getting a second opinion and not having to go anywhere. If our opinion matters, I don't see Brooke having another Bone Marrow Transplant soon. We are not mentally or physically prepared. + my heart couldn't take it now. We feel when God says it's time, He's going to make it known. And then we'll follow His advise. It's work for us this for :)
Thanks for the prayers. We're going to hunker down with Miss Brooke for a week or 2 and try to get her healthy. Pray for strength for her and for her sisters as they walk through this with her.

1 more thing.......Mother's day was wonderful!! I have best girls and husband in the whole world. I read cards, open gifts and cried. (My girls may think I'm a freak, but I'm ok with that :)

Spa day 2

In the cup Brooke is holding, it's not water. It's cold coffee :) Hehe, I think that is so gross, but I was so excited she was drinking something besides water. And I do LOVE coffee (hot not cold :)

Taken from Bible.com

"When the scriptures talk about making the bones fat or speaks of health in the marrow of the bones, it is referring to a healthy immune system that produces healthy blood. The Bible also says that the life is in the blood. Therefore, when we keep a joyful and positive attitude it helps to keep us healthy. "

Proverbs 15:30(Amp):30 The light in the eyes (of him whose heart is joyful) rejoices the heart of others, and good news nourishes the bones.

Proverbs 15:30(KJV):30 The light of the eyes rejoiceth the heart: and a good report maketh the bones fat.

I seemed to have left my devotional at home. Bummer! I swear I put it in my suitcase, but couldn't find it, so I looked up Bible.com and this came up today. It made me smile :) God sure knows how to put things in my language. Obviously we know what happens when you don't have a healthy immune system. At times it's an up hill battle. I can't change Brooke's immune system, it is what it is. (or what it's not). I can help and mold her spiritual immune system. Sitting here, we've got the time. And we know he's always listening. Even when we don't think we do have time. You cannot control your every situation, but you can control how you react. A joyful and positive attitude :) Thank you Jesus, for Brooke's life, for Spectrum being so close, for awesome family and friends, for doctors, PA's and nurses that care for her. Time to slow down and regroup :) The MD asked what we think of the "New Hospital". It's fine. It's nice. It's new. They have a slushie machine :) So it's good I guess. I'm not sure it's any better than the old hospital. We like the staff, that's why we keep coming back :) It's all about the people!

Brooke did well last night. She slept well, but did have a fever. The PA said, "she has influenza, she's entitled to have a fever." She perked up this am, was standing up and not complaining of pain. We are trying to get her feedings back to what we do at home. They are doing IVIG today. YEAH!! Not sure what her IGG numbers are yet, hopefully this afternoon we'll know that. When they drew her blood I wished good thoughts on the gold tube (the IGG one). But a boost of IVIG will make Steve and I feel better. Her cough and congestion are getting worse, but that seems to be the course of this illness. The plan at this point is to go home Monday. We can do that. We are off to a White caps game tonight with the girls. Tricia is sitting with Brooke. Grandparents have been up to visit, which she LOVES. You can tell she is older. She tells you what she wants. She told Steve to bring puzzles back up. She was mad at me for going down to get food and when I came back she said "DON"T do that AGAIN!" Ok Miss Bossy! Tough Love is going to have to break this attitude. Tomorrow is Mother's day! Hug your MAMA :) If not your mama, hug a mama!

Don't wanna say "told ya so" But????

That's Miss Brooke, in a big bed, at the SPA!!! So we thought it'd be a good idea to not give IVIG to "test" her immune system. I was uneasy about it, but it was, and still is, the logical thing to do, if you live in a bubble. Well obviously our bubble isn't sanitary enough, so here we are. She has a form of influenza, but not the form that's covered in the flu shot. Her general consensus for us is, "I don't feel good." She has had back pain for a couple days. Walks around holding her back like an old lady and very stiff. Then last night she had screamed for over an hour, I had to call Steve home. So Steve took her to ER and we ended up here. It's a nice place, very pretty, big windows. But not like home. She, however, does not feel like being at home and that's ok. The other girls have been sick to, so maybe she would've gotten this even if she was on IVIG, but there's always the guilty mom complex.

Last night before Brooke even went into ER, Leah was crying. She said, "mom, Brooke's sick, I can tell, it's not good." Smart 12 year old. I told her she's upset because she loves Brooke so much, but her job is to pray for her and give her worries to God. He'll take care of her. And she did, and slept great.

Today, the MD asked why I was here. DUH, I'm her mom! His point was, I have laryngitis. I explained I got it after her. Pretty sure it's the same thing. He was still concerned and we agreed I'd wear a mask when holding Brooke. However, I then got the guilty mom complex. "I should've used more bleach." "I should've prevented the twins from drinking out of the same cup, licking the same things, hugging, etc" Ya just feel like you failed. I didn't protect her. So I vented to my sister in law, who wrote, ""don't let them make you feel bad--Brooke is in God's hands--He will do the protecting." Thanks Lisa!! Maybe I should practice what I preach. It's so easy to fall into that trap!

Well, we're here, nothing we can do about it. Watch her, love her, and pray this virus exits her little body. They will check her IGG levels tomorrow. That will tell us if her numbers are low or if I'm over reacting. Me.....over react? :)

Have a great day! From our HUGE window it looks gorgeous outside!!! Enjoy God's creation.

Good Therapy...

I have many forms of therapy, depending on my mood. Laughter and eating cake pretty much cover any trouble. This weekend I had to run. I do enjoy running. I am not fast, I don't time myself, it's more of a mental break for me. On Friday I called the MD and asked the nurse if I could take Brooke off some of her meds. She said, "oh Dr. Duffner's right here. He's been meaning to call you." OH NO, not talking to the MD. I like and totally respect him but he never tells me everything is great. Well, he talked with his colleague's and they decided the next step is to take Brooke off her IVIG (immune system booster). We will check her blood levels in 3 weeks and we'll know if she is making her own B cells. Now typing this, it really doesn't seem to be a big deal. My reaction last week was a little of a bigger deal. (That means the run worked :) I guess I was not mentally prepared for that. Brooke's numbers have "stalled out." Which we know. But I guess deep down I was content there. It's better than it had been. I didn't like the idea of "testing" her immune system, and R E A L L Y deep down, I didn't think it would work. My reaction was, "we are setting her up for failure," "I can't do this," "what happens if her b cells don't kick in." So I called my therapist, "Steve" aka husband :) and he talked some sense into me. Then Saturday I went for a run and God REALLY talked some sense into me. It's all good. I was once again putting my trust and faith into human medicine. My Faith and Trust belong in Him. He will take care of her. If it works, then YEA GOD, whats the next step? If it doesn't work, then maybe not "YEA GOD", but "Ok God, I respect that" what's the next step? He will not leave us or her.

Unfortunately we've been sick. Good timing huh? Seems like headaches, sore throats, some fevers, I heard of a couple stomach aches. My general consensus is a virus. Brooke refused her feedings by dry heaving and streaming for 2 days. But she drank her water, stayed hydrated and is back at it. She must have some immune system. So far Steve has escaped it. I have laryngitis of all things. Why do kids NEVER get laryngitis?

The girls are making cake with Becky, Brooke's therapist. Macy just benefits from it.

Finished product!! Yes we ate it. I mean really, it IS cake :)

As I am writing this Steve is planting. YEAH!!! That is probably short lived due to the weather this week. But we'll take what we can get (as will any other farmer :) Have a great week.