A long long time ago......

Steve and I use to be youth group leaders for high school kids. I was probably 20 or 21 years old when we started that endeavor. During those years 4 boys hung out at our house daily. (1 of those being Steve's little brother) I'd come home from work and they were over, watching TV, eating, playing ping pong, playing Playstation (that was long before wii :). Many times I'd go to bed and they were still over. When Leah and Megan were babies it was a common sight to see one of the boys sleeping in the recliner with a baby or toddler in their arms. We LOVED it! There was never a dull moment at our house and our door was always (and still is) open to them.

Obviously they've grown up, they all have amazing wives (which we use to wonder who would actually marry them :) and many have kids of their own. Leah even babysits for some of them. For some reason it struck me this weekend. Michael came to pick up Leah, he got out of his car, said "hi" to the little girls and him and Leah were off. I turned to Steve and said "we're not old, are we?" He laughed and said, "yep, we are." Our baby is babysitting for their babies. That's not right!! I don't want my kids to stay little, I'm raising them to be independent young ladies, but I think 10 years went by, and I missed it.

Anyway, I'm over it. I looked in the mirror and I still think I'm young, hehe. I will think I'm young til the day I die. Leah is an amazing young lady and I am so happy she can venture out and help others. And our boys, will always be our boys!

Reasons why its nice to be small :) Brooke cleaning under Leah's bed. Her sisters claim she wanted to. Yeah right!

Ash A Roni!!

You guessed it......another birthday!! Summer is our time to shine :) I wish I would've posted yesterday but time escaped me. Yesterday, July 14, was Ashley's birthday and what a day it was! She got to go to Grandma's Blueberry's, which meant, picking blueberry's, playing with cousins, we ate her FAVORITE (ham, mashed potato's, beans), and of course, cake for breakfast and after supper :) And she got to stay overnight at her cousins, WHOO HOO sleep over!

Ash is the most versatile out of the bunch. She LOVES to hang with the big girls and can still play with the little girls :) She claims she's not a fan of being "stuck" in the middle, but overall, she does pretty well sharing a room with 3 year old twins. Ashley has enough spunk to make us all tired and that's what's going to get her places someday, and we love her all the more for it.

Happy Birthday, Sweet Sweet Ash A Roni!!! WE LOVE YOU TO THE MOON AND BACK!!!

To grow or not to grow....

Steve and I took Brooke to her endocrinologist last week. She has grown about an inch in height and about 2# in weight. That doesn't sound bad, but when you look at the growth chart, it's not good. Brooke consistently grows when we increase her feedings. If we keep her rate the same, she doesn't grow. Her little body and tummy can only take so much food, so we can't increase her feedings again. The end result seems to be, she does not make her own growth hormone. The MD has an unofficial theory, which made sense in our minds.
You need growth hormone to not only grow in height but also to reproduce cells. So is it possible that if Brooke is given growth hormone her immune system will also start to get better? He said there is no research on it but it does raise flags in his head. And it sounds alot better than another bone marrow transplant to us.
We also talked about how SCIDS kids are small/short. He agreed but stated that is from failure to thrive and being sick. The MD said, "she does not look like a chronically ill child." We agree but she's our kid, so we see her through parent eyes.
Our best guess at this point is she doesn't make growth hormone. She will have blood work done in the next month or 2 and more testing after that if needed. (so this is not a quick process either). But we started the ball rolling.
Brooke did not have her immune studies drawn this week due to timing of them all. They have to be sent out, so they have to be drawn the beginning of week. Our next appt is July 27 and they will drawn blood for her immune system and if they can draw more they will start to draw for her growth hormone.
With all that being said, it is a little scary to give up our baby :) As much as we want Brooke to grow up, it's nice to have her at this little cuddle size. She actually wears out infant clothes and shoes. I know alot of it is her personality. She is just a cuddler. I loved my sister in law said, "let her go Shelly, let her grow up." So true! And so hard!! But it's time.

Meg a licious!!

Not sure she likes that nick name but I sure do :) 9 years ago today, I got up at 4am, paid all the bills, cleaned the house and thought, oh boy we are going to have a baby! So I brought Leah to the babysitter, went to work, drove to Grand Rapids for meetings at work. Picked up the employees pay checks. Drove back to Holland and distributed that paychecks and then called then MD. We had a baby by 4:30p! What a productive day!! Even had time to get Leah from the babysitters (we'll not me, I was busy :)
Megan is such an amazing joy in our life. She's full of laughter and mild mannered. Her Uncle use to call her "silent thunder." Megan is quiet and takes it all in, UNTIL she gets mad, then watch out! She makes me smile daily and will still sit and cuddle. She's just so huggable!!! HAPPY BIRTHDAY MEGAN MICHELLE!!! WE LOVE YOU MORE THAN YOU CAN EVER IMAGINE!!!!!!!!!!!!!!

The "big kids" doing double dutch. They couldn't let the little kids show them up :)

The early morning cake. Leah was upset we didn't get her up for the picture.

Dressed and hair brushed with her cake.

17 YEARS!!

Where does the time go? 17 years ago, July 8, Steve and I got married. I was 19 years old and Steve 21, when we got married. I've had people ask, "will you let your daughters do that?" I think that's a funny question because when I think of our daughters being that age, I think "they wouldn't get married that young." But we did, and we don't regret it one bit. I'm don't think it's my decision at that point if they get married :) I'm not sure what my parents thought but I know they love Steve and they knew we'd be ok. I feel like Steve and I have grown up together. We've shared every kind of emotion. We've been through financial issues, health issues, lots of kids, jobs . . . and we always come out on the other side stronger. God has everything to do with that, not us.
Usually for our anniversary we don't go anywhere. Sometimes it seems like more work to leave, than to just hang out at home and grill out. Well, my parents said they would take the girls for the weekend. We tried to make plans but the weather and the farm looked like it needed attention, so I told Steve, we'd have a date in the tractor. No biggie! Well Thursday night he got done side dressing (fertilizing corn) and said, "what should we do?" We had a sitter and no where to go. I had wanted to go to a Nascar race (yes fast cars intrigue me) but it was all sold out by then. Steve goes a farming website, AgTalk. I mock him that it's Facebook for farmers. When he was on there he found someone with Nascar tickets, to the Saturday night race in Kentucky. He asked if I wanted to go, and of course I did, so he booked a hotel and we left Friday. Being the skeptic, I was unsure if this AgTalk fella was actually going to have tickets for us. But we met him Saturday (his wife thought we wouldn't show up :) and we were off to the races, literally :) It was fun! I LOVE watching people and there was ALOT of watching to do. Plus we had a riot driving all over the country side, even got lost. My hubby did good, and I will try not to mock him about AgTalk :) I said try, I make no promises.

normal

I am part of a SCID email group (yes there is such a thing). People put questions on there, other people answer. Sometimes I read them, usually I don't. A question came up this week about if anyone had oral aversion with their child and any suggestions. Well, I thought, I can understand this problem, so I email out and told them Brooke's issues, her button, nissen, therapies, feeding clinic wait list and what she will eat. What I did not know is what I would gain from this question or my statements. I found out Brooke is normal, or normal for a SCIDS patient. There are so many SCIDS kids out there with undiagnosed feeding issues and tube feedings. I guess they aren't undiagnosed, its SCIDS.
One particular woman emailed, she has SCIDS herself. She called it a sensory disorder and she still struggles with feeding trouble. Textures and consistency's are very difficult to overcome. She has to physically tell herself at times, not to gag on certain foods. She knows they won't hurt her but the textures are over powering. She also said if she gets congested she about has panic attacks at times. The feeling of the mucous makes her anxious.

She remembers when she was 4, everyone just called her a picky eater and at times she wouldn't eat because she just couldn't.
I feel like my eyes have been opened. I feel like maybe I caught a little glimpse of what Brooke is feeling. That's all Steve and I want is to understand what she is going through so we can help her and not do something that will be an obstacle. My faith is renewed and we will have patience and wait on Him. Someday Brooke will eat her birthday cake. Until then, Macy and I will enjoy it :)

Oh boy, Birthday Presents!!! 2 very happy ladies!