Make a WHAT!!!

2 weeks ago I got a phone call. A very nice lady from, "make a wish." In my head I'm was like, "really a sales call, now?" (I was picking the kids up from school and dispensing them to their appropriate locations/I HAD to pay attention). But this lady got my attention when she starting naming people I knew from Devos Children's Hospital. The shortened version is, Brooke's info had been sent into Make a wish, and she was approved to have a wish granted. How exciting is that?!?! It's more exciting for the big girls than for her. She's just happy because they are happy :)
So, what does she wish for? I've been told she wants to go duck hunting, she wants to go to Hawaii and she wants a dog. She really doesn't want any of those things :) This is obviously a process, so we have sent in our paperwork and now we wait to hear from one of their volunteers. I also have emailed our Devos friends, because they are a BIG part of this. What is Brooke allowed to do?
Overall, it's just exciting!

Brooke did meet with her feeding clinic PA. In the big picture, I guess the appointment went fine. They did agree to start a medicine that will enhance her appetite (a stimulant). But I'm waiting to see if its ok to give with her other meds (hopefully I'll know that this week). My thought is, it's worth a try. Maybe if she's hungry, she'll eat. They weren't thinking it was a great idea, but they did agree to it. We also decreased her feedings. She gained another pound. Since she isn't gaining in height we decided to slow down the weight gain and try to maintain. Brooke is very happy with less food.
I'm not in the right place yet for the intensive feeding clinic. At this point, I'm not denying that she may need it someday, I'm just not sure this is the right fit for us. I know God will show us the answer, we just have to be patient and listen. We pray that she will eat and in the mean time, I am researching other feeding clinics to see what there is. It's just complicated.

Growth hormone: we aren't planning to start til the end of October, as long as her tests are ok. We found out yesterday our insurance doesn't cover growth hormone. So I had my whole day planned to argue with the insurance company. But I called the MD office 1st. They made all the calls for me and Children's Special Health is going to cover it. YEAH!!! So now we wait.

Fall is getting closer. The farmers are getting antsy! I even got a text message with a picture of a tractor. That means he's ready :) I love it that my husband loves his job! He told me before, "farming is in my blood." And I truly believe that. So, maybe a week or 2 and the fields will be busy.

The Ipod

Well, Leah has an ipod touch. It's a fun toy and convenient for us because we can text her on it (when she has wireless hookup) For the past 3 weeks it has been missing. Yes missing! I refrained from losing my mind on my 12 year old because, 1. I have a very long history of losing things. 2. I wasn't convinced she lost it. I saw the twins with it 1 day and never saw it again. Weeks ago I asked the twins where it was, they said "under the couch." So I looked under the couch, behind the couch, in the cushions. No ipod.
As the weeks went on I cleaned the toy room, the basement, I looked in the purses and bags. I emptied the book shelves. I knew it would show up, but where? This afternoon, out of the blue, I said to the twins, "where's the ipod?" And again they respond, "under the couch?" I said, "no girls we already looked there." Macy said, "you didn't lift it up." Brooke, "yea, lift it up." They both have BIG grins on their faces. What do I look like, super woman! We have a sectional couch, so I got a middle section and they both say, "NOOOO not that one!" And they point to the next section. So I lift it up, they crawl under and grab the................IPOD!! Are you serious!?!?! Steve said they've probably been hiding from us and playing with it, til the battery died. Oh boy! Maybe they can find the camera I lost 5 years ago.

Tonight I went to Leah's volleyball game. Just me, watching Leah. Each team had won a game. This was their last game, 2 more points and HC won. Leah's turn came to serve. I could see her anxiety. As a mom, you want to run, and help her, give her a pep talk. Then you remember, "bite your tongue mom!" She served 1 over, whoo hoo. Next serve, over again!! Someone got a piece of it, but not enough and they won!! I let out 1, "GO LEAH!" And then resumed my seat. I told her later, "I was so proud, I wanted to yell, that's my daughter!!" She laughed and said "Tricia would have." (Tricia's our friend that's a mom that knows sports, unlike me) So I said, "Ok next time I'm all over it." She just smile and said, "no that's ok."
I never understood. My mom always yelled at the soccer games, the softball games, really anytime she had a chance to voice how proud of us she was. I was always, "mom, seriously." But I realize now the other side and it's ok! Yell at your kids! Cheer them on! Tell them your proud! WHOOO HOOO LEAH!!! YOU THE BOMB!!!

A week in review

I'm not sure there is enough space to review the week. The beginning of school is B U S Y, but I must say I am loving it. Leah's in volleyball, she only had 1 game, but it was fun to watch. There will be more games in our future. It was fun to listen to the twins yelling for her. And when she got done Ashley hugged her and said, "great job Leah." I think they might actually like each other :) Most days I wonder.

Ashley and Megan are in Soccer. Also fun to watch. Ashley is slightly tall for her her grade (go figure). I told her this week to use it to her advantage. Steve watched her and she got a goal. That put a smile on her face! Like I've said before I am not a competitive person, so I truly do not know what teams won (I know that's bad). I just want them to play their best and have fun.

Besides that, the girls have school stuff, foot ball games, and church activities are starting up. I do like all the fun stuff.

Someone asked how I do it with 5 kids. She said I have 3 and I keep forgetting things. I told her to re train her mind. EXPECT to forget things, then you aren't disappointed when you do it. I tell my kids, I will forget lunches, homework, to wash the clothes, etc. But I will NOT forget THEM! They are important so they are tops on the list. They just have to work with me on the rest. (However I did write a sticky note once to not forget to pick them up :)
Brooke, oh Brooke. We've jumped right back into MD appointments, lab draws, phone calls from MD. As expected it seems Brooke's Growth hormone is low. Steve and I are just happy this is something we can actually fix. She does need some testing before starting her on growth hormone and that will be in October.
Then her IGG level was 389. They use to want it above 600, when she had less of an immune system. Now they want it above 400. However, they feel she is making some of her own B cell (the IGG level) and they aren't ready to give her IVIG yet, because they want to give her some immunizations and she what her body does with that. (are you following me? :) So, Steve and I agreed because the immunizations won't hurt her. Worse case scenario she doesn't respond to the immunizations and she isn't immune. On a selfish note I told them harvest season is coming up. I cannot be inpatient with a sick Brooke because we decided to "see" what her IGG levels do. If giving her IVIG will keep her healthy, I HIGHLY suggest we give it. They understand. So we give her immunizations next week. Then Oct. 12 we draw her titers to see if she is responding to them and another IGG level. Then decided about IVIG. She also has an MRI Oct 12 to make sure her pituitary gland is working well (which processes growth hormone).

So that's Brooke's current story. If it's too much information, just don't read it, I'm ok with that. I still must say, from the outside she looks perfect just like her sisters. God will mend the rest as well. In time :)

Parenting

I tell Steve the girls can go to bed without being rocked e v e r y n i t e! I don't think he cares :)
Someone asked me a question today that made me think. This couple has 2 children, close in age. I know him but not a personal level. He said to me, "you guys have alot of kids, maybe you can help me?" I laughed inside. He obviously doesn't know my family well, I am not fit to answer parenting questions :) Anyway, his question, will his 2nd child be as smart as his 1st child? His 1st child they did everything by the book. Read to him, sang, routine, structure, etc. Now they are busy and it's not the same with the 2nd child. I laughed, Leah use to listen to Baby Beethoven as an infant, had certain bath nights and a pretty strict routine. The twins listened to Lady Gaga and they take a bath when they stink. Structure flew out the window years ago. I told him, "just love them." Stop worrying, and do the best you can. I also told him to have more kids. You worry less and trust in Him more.

Brooke went to endocrine last week for growth hormone testing. We are waiting to hear from the MD yet with the plan.

Macy got her cast off today. That was a traumatic experience thanks to her sisters. Being the "big" helps they are, they prepared her by telling her they would "cut" off her cast and it "won't hurt." She interpreted that as, they are cutting off her arm and it will hurt. So after much screaming, she has her cast off but still has her arm, and no pain was involved (other than our ears and patience). She is starting to use her arm a little, but it's still weak.

Brooke went to clinic today and had her labs drawn. I was thankful our normal lab draw tech saw Brooke's name and waited to draw her before he went to his meeting. That makes only 1 poke and a happy mama :) Unfortunately one our favorite PA's is leaving the BMT clinic and going to inpatient :( Not make mama happy! I was sad and even cried when she told us. She's been such a big part of our lives and we always look forward to seeing her and trust her opinion. But she's taking care of her family and I respect that more. There is another PA that we trust and respect. I told him he can't quit and I don't want a new one (poor guy). No major news with Brooke's labs. We are waiting on her IGG level and some titers. If all looks good they might start some immunizations. Now that's a step in the right direction.

I've been taking her out more for quick stops. With all the running for the other girls and school I take her with. Otherwise she'd need a full time nanny. She does NOT tolerate being left home. The other day she wanted to go with me and I told her, "I won't leave you." She said, "you leave me to go to church." Macy was also there yelling, "YEAH." I think they ganged up on me :) So there isn't much we can slip past them anymore. But that's a sign a maturity and growth, we weren't ever sure we'd see.

We feel so blessed as school starts and we've gotten to meet the girls teachers. We realize they are surrounded by God's love in every aspect of their lives. We are so thankful for christian teachers that love their jobs and dedicate as much time to showing God's love as they do to academics.

Enjoy your week and the fall weather. Don't forget to look at the crops. I saw some soybeans turning color already. WHOOO HOOO, Harvest is in the air!!!

A lost art.......

I grew up on freezer corn, canned fruit and strawberry jam. And none of them from the store. My grandma did all of the above and I remember helping when we were young. She had tables in her basement. My mom and aunt would sit and peel peaches, or pit cherries or whatever we were doing. My grandma would be upstairs by the stove doing the canning process and my grandpa would empty out the pails of peelings and run the fruit upstairs to my grandma. Well, I've figured out the corn. Steve, Leah and I did 10 dozen ears of corn, bagged and in the freezer. I've figured out the jam. I have that done and in the freezer. For some reason, this year, I decided I wanted those peaches. I have never canned in my life. I was actually slightly scared of it. I thought something might explode or something (tells ya what I know). So I started to Google search it. I read numerous ways, printed out directions and headed out to the expert, that's right, Grandma. She read through my directions, gave me pointers, and sent me off with the supplies. Yes, that's right, she turned me loose in the canning world.

So I peeled peaches, I made sweet syrup, I filled jars, and I boiled. And now I have canned peaches :) Steve and I were talking that this is not cheaper than buying them in the store. But I pray they will taste better. I know they won't be as good as grandma's but hopefully better than Delmonte.

My other point in doing this.........I want my kids to know how. As silly as that sounds I think we take for granted what we can do for ourselves. We are so busy with life that we forget to look and truly enjoy what God has created. Likewise, it's fun to do together. I did not can with the girls this time because I had to do the trial run. (I had NO IDEA what I was doing.) But this will be future fun. And it bring out my mom and friend Missi :)

Psalm 34:8 "Taste and see that the Lord is good."

A little more camping

This is not the same camping we normally do. A LONG time ago (only 6 years ago :) we tent camped. It was fun, til it rained. Which was every camping trip. Anyway, Steve still try's to take the girls tent camping once a summer or so. Sunday night, Uncle Mark and the boys, and Steve and the girls, headed to Uncle Mark's pond for some rustic tent camping. There is no planning involved. Throw in the tent, sleeping bags and whatever food you find. No cups, no plates, no napkins. You wear the clothes you have on. (It's for less than 24 hours, and mom's at home to run things out when you need them :) We have 1 little girl that was in her GLORY!! Playing in the dirt, catching fish, eating with her hands, making forts. It's like she was in paradise!! I wish I would've taken a picture of her when she got home. She was covered in dirt and had the biggest smile I've ever seen. That makes my heart happy!! I stay home with the twins, but I'm not sure how much longer they'll allow me to do that. We went out to visit at night, and they thought they were sleeping in that tent too. Maybe next year ladies.