Sunday, June 29, 2008

Look how far we've come!

Searching though old pictures is fun and I found this one of Laine. It reminded me of how far she has come with the healing of the Strawberry Hemangioma that developed after birth. This picture was taken about 2 months after it stopped growing so this isn't when it was at the largest, but, it gives you an idea from when she was 10 months old to now about 2 1/2 years. We are hopeful in the next few years she will continue to heal better. She may need some plastic surgery in a couple years but our doctors are hopeful that it will get better with more time. We have seen Dermatology, Hematology and Opthalmalogy at U of M and all are pleased with the progress. We see all the doctors again later this summer for check ups. We'll keep you posted! She also returns to her Genetic/Metabolic doctors later this summer and we are pleased with Laine's progress and health and hope they are too. She has only had one hospital stay this last winter for the year so far. We are hopeful for no more stays this year. We give God the glory for meeting our needs and answering our prayers. During the first few weeks after she was born and we were faced with her Metabolic condition and the growing Hemangioma, needless to say that I was one stressed momma. I would have never guessed our lives would return to our "normal" that it is today (although it was my prayer). I am reminded to ask by prayer and petition our desires and God is good and faithful.

Friday, June 27, 2008

My strong and brave girl

Paige went to camp this week and I so happy to see her when we picked her up. We threw our arms around each other and just hugged for a while. She came home Wednesday night (it was a 4 day camp for her age). All the campers receive a reward for qualities seen in them during the week. Paige got Humility. Paige got Humility because of her character and that just makes me so proud. I think camp was a little harder on her than she thought it would be. She said "camp was a blast...but the nights were really hard". She threw up two different nights because she was homesick. But the last night there (I think she knew she would see us the next day) she did just fine. She never asked to go home or even call even though she was homesick. She made friends, learned about Jesus, did crafts, water activities, dancing, and keeps remember more stories of the fun. The car ride home she was so exhausted she slept almost the entire way. Now since she has had a couple days to process camp...She loved it. She is thinking about going back next summer although she says she wants to wait until she turns 8 to decide for sure. She is brave!!! I am not sure I would have wanted to go at 7 years old. She really wanted to go so I encouraged her. I'll keep encouraging her. Thank you God for my strong, brave, independent little Paige.

Thursday, June 26, 2008

The hard days of being a nurse

Being a nurse for the last ten years I have seen my share of heartbreaking stories, illnesses, patients and families. I have probably been present for at least 50 people passing. Every week I take care of at least a few precious patients who have less than a week to live. I have shed a few tears for every patient that passes away (If I ever don't then it would be time to hang up my stethoscope). But, few have touched me in a way that one particular family has this last year. I cry today for her family as she is very sick and barring a miracle I have learned she probably has less than a day to live. The special thing about her is that her faith is strong in the mist of miserable circumstances. But God is good and faithful during this time. She has encouraged so many people during this time of her illness. Her family has been a shining light. I pray for them today and I know how good our God is and ask for that miracle. Our God is big enough. I have asked for miracles before (When Laine was born and diagnosed with VLCAD). So I have seen first hand how he has blessed Laine's life and our family. We give God all the glory for how good Laine is doing and so strong, sassy and feisty. So tonight I think of them and His promises. We "can do all things through Christ who strengthens us" Phil 4:13

Wednesday, June 25, 2008

PottyTraining (I should have thought of this)

OK, last night Jeff comes home with a plastic Tupperware container with lid and and bag of M&M's. He says a buddy at work did this and every time their child went potty they gave them one M&M. Duh...I should have thought of this before...Laine loves (and I mean loves chocolate with a capital LOVE). So we pour the M&M's in the container (see through so she can drool) and she says "I want some". I told her every time she sits on the potty chair she can have one M&M. Every time she goes potty she can have 3. It did not take more than just a little while and 2 potty trips to go potty on the toilet. Thank God we are headed in the right direction. Seriously, if that guy's advice gets my kid potty trained before her 3rd birthday then I am so buying him dinner (or maybe just a big bag of M&M's)!

Tuesday, June 24, 2008

Paige at camp

Well Paige and been at camp since Sunday and she did really good when I dropped her off. She was a little quiet in the car when we getting closer to the camp. But then once she saw how cool it was she was really excited and asked "If I have fun can I come again..later this summer." She has 8 girls in the cabin (it is a tree house...very cool) and 2 counselors. When we got to the camp they took the parents around the camp and showed us the lake, craft area, dining hall and also the water park, and boating area as well as the cabins. We got to meet her counselors and it was so cool. When we walked up to the cabin a college girl Beth (Middle of top row of the picture) was her counselor and I have known her since she was a little girl as her parents attend our church. She is working there for the summer and attends college at CMU. I have probably known her since she was Paige's age. It was such a relief to know her and leave Paige with her. There is another counselor named Sara and she seemed sweet too (Top row right side). She comes home tomorrow night and I will be happy to see her. It is so quiet around here and Laine keeps asking "Where's Paigeie". (just in case you don't recognize Paige she is in the second row, third from the left with glasses)

Thursday, June 19, 2008

Being needed

As mothers don't we have that place in our hearts, in our souls where we just love to be needed (especially with our kids?) I know it makes me feel important. So can you imagine what went through my mind the day we received the brochure for a Christian summer camp...for 7 year olds and Paige tells me she wants to go. She just turned 7 and apparently they have camps for kids in first grade (What??? Who knew?) I know I went to camp in like 6th grade or something and even that was pushing it for me. I told her to pray about it and maybe in a month or so we could talk about it.
Well about a month went by and she brings up the issue again. She wants to go and thinks she is ready. She doesn't know anyone but says she'll make friends and learn about Jesus. This is a conversation we had that cracked me up from our little serious 7 year old...
Me: OK, at camp if they ask any questions you don't know the answer to, just say Jesus, cuz it is always about Him.
Paige: So if they (the camp) ask "Did you bring a blankie?", "I am just suppose to say Jesus?" with a smirk on her face.
Me: "Um well...No."

I should clarify that the camp is only Sunday to Wednesday. But Paige and I haven't been away from each other that long except for the times Laine has been in the hospital (and then dad or grammie was here). But I will cope. It is the least I can do. Yes I am out of my comfort zone. I don't have control over if she brushes her teeth and if her fingernails are clean. But there are more important things I am hoping she will learn. My prayer is she will see how many kids think Jesus is cool, and learning about Him is cool too, and swimming and canoeing and hiking and games.
They should make camp for grownups. I want to go too... She leaves this Sunday. I will keep you posted. Sure would be a long 3 hour drive in the middle of the night if she needs me. That's OK honey, I wouldn't mind a bit.

Monday, June 16, 2008

Potty Training stinks...literally

OK seriously if I didn't spend so much money on cutting, highlighting and coloring my hair I'm thinking I might just have pulled it out already. First picture this...the first child Paige sat on the potty chair at 2 1/2 and we told her to tell us when she had to go and she never had a accident NOT ONCE. She was potty trained from that day forward. I know, I'm sure you are all laughing and thinking now I get what I deserve, but come on. OK, this is what my life has been like the last 5 months. Pooping on everything except the potty chair. Laine who will be 3 in August and needs to be potty trained to start preschool in September (already paid the nonrefundable deposit) has pooped on her toys, the Leapster, the living room floor, the bathroom floor and many pairs of nice Dora panties. We have tried helping her think it is her idea and she has no part of that. She just says she "doesn't want to". She is too busy playing, eating, drawing or just about anything to be bother by walking down the hall to the bathroom. We have tried the Dora Potty seat, the Potty chair, the ducks that float in the seat potty chair. We have tried using M & M candy for every time she would sit on the chair. I have tried stickers, hugs, praise and anything Dora. Paige has tried to demonstrate multiple times. Laine usually just says "it just not working mom" after sitting on the chair for 1.2 seconds. This was our story tonight

Laine: "Mom will you clean my poopy butt?"

Me: "Laine did you go potty in your pull up? " and my stern mommy look

Laine: "Mommy please clean my poopy butt."

Me: Another stern look and "Laine we don't say butt in this house."

Laine: "Mommy will you please clean my poopy bottom."

Laine: As I am cleaning her she says "it's OK mommy it's just an accident and I love you soooooo much."

Me: "I love you too Laine."

Thank you God you these precious moments with my strong willed, fiesty, sassy little girl. I wouldn't do anything to trade these times. They are so special. I just know one of these days she is going to think this was her idea and and she will be my strongwilled fiesty sassy potty trained little girl.

Sunday, June 15, 2008

Happy Father's Day

Paige and Laine with Daddy. June 2008

Jeff is an amazing dad who loves his 2 little girls. He takes time to teach Paige about science, electricity and magnets and will take time to learn about Dora, Boots, Hannah Montana, and High School Musical too (He even has been known to sing along.) He knows how to make ponytails for the girls hair, and a mean macaroni and cheese. He is calm, loving, patient, and a good teacher and example. Paige says she loves her dad "because he is funny and is the greatest dad and grills good things and teaches me how to spell", and Laine loves her dad "because I want to". I'm sure just the answer he thought Laine would say. We love you daddy! Happy Father's Day

Saturday, June 14, 2008

Good Bye Lake Michigan

Our trip to Frankfort comes to an end as we headed home today. Here is a picture of the girls and I. Laine stayed healthy the whole trip, thank God. Paige went swimming most every day, Jeff went fishing a couple times, and I tried reading some new books. I recommend the following...1) The Last Lecture, 2) Animal,Vegetable, Miracle and also 3) If you Lived Here, I'd know your name. We went to the beach in a small little town called Empire on Friday. I was so refreshed and renewed after spending an hour or so there. The girls played on the playground and Jeff and I just sat and watched them play and then walked the beach and watch the waves come in. The waves were so strong and splashing and the rough surf caused the sand to make the water an aqua/blue was so beautiful. I wish I could bottle that right up, so on days when I can't figure out how to relax I can pop that lid right off. I always get a lump in my throat when we have to leave. I loved not having a routine for a while. What do you do to relax and renew yourself? JenD

Wednesday, June 11, 2008

The views of the Mackinaw Bridge

The last couple days we went to Mackinaw Island and Mackinaw City. We also saw the Mackinaw Bridge from both places. A couple things struck me about seeing this enormous bridge that connects our Upper and Lower Peninsula in Michigan. The views stepping back were so much better than when we were on the bridge. The most interesting views were from both the mainland and the island. When we were on the bridge it was hard to see the beauty, the patterns, the uniqueness, and the enormity of this bridge. It looked ordinary, regular, and normal. The bridge didn't change though, just my perspective of it. Isn't that just like our lives..... Our normal, routine, simple, stressful, ordinary days are spectacular when we just take time to take a step back and enjoy "the view". I know we all have reasons why it is hard to take a step back (jobs, illnesses, stress, finances, and schedules). But when you can... just do it! This is as much a reminder for me as anything. Sometimes the routines of the day seem boring and normal but I know that I am blessed beyond measure with these extraordinaire moments with my husband and girls. With God I am able to appreciate all these times. What is your favorite view?

Monday, June 9, 2008

Lake Michigan

What I love about Frankfort Michigan. (It was suppose to be top ten but I had to add a couple)

1) The sunsets

2) The coffee and goodies at the Crescent Bakery (and the fritters of coarse)

3) The sand

4) Sitting on the beach with a good book (This time it is The Last Lecture by Randy Pausch)

5) Drive in movies (even though the girls fell asleep)

6) My favorite little bookstore

7) Relaxing

8) Sleeping in

9) The fog rolling in (it is mysterious and magically the way it drifts into town and down the streets)

10) Spending time with Jeff and the girls and doing it all or nothing at all....

11) Papano's Pizza

12) French Silk Ice cream

Sunday, June 8, 2008

A Trip to Holland

I read this poem a few months after Laine was born. It tugged at my heart strings as Tulips and Holland have always been special to us. We go to Holland Michigan to see the tulips every May. The tradition started before we had the girls and continues to this day.

Welcome to Holland

I am often asked to describe the experience of raising a child with a disability-to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...
When you're going to have a baby it's like planning a fabulous vacation to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum, The Michelangelo David, the Gondolas in Venice, you may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later the plane lands. The stewardess comes in and says Welcome to Holland.
Holland?!? you say. What do you mean Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I have dreamed of going to Italy.
But there has been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a new language. And you will meet a whole new group of people you would have never met.
It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you have been there for a while and catch your breath, you look around....and you begin to notice that Holland has windmills...and Holland has tulips...Holland even has Rembrandts.
But everyone you know is coming and going from Italy...and they're all bragging about the wonderful time they had there. And for the rest of your life you are going to say Yes, that's where I was supposed to go. That's what I had planned.
And the pain of that will never, ever, ever ,ever go away...because the loss of that dream is very, very significant loss.
But, if you spend the rest of your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, very lovely things...about Holland.

By Emily Pearl Kingsley 1987

We thank God for helping us to grow and learn during Laine's medical issues and VLCAD. He helped us to be stronger than we ever knew we could be. He strengthen our faith. He provided. He understands. He loves.

Friday, June 6, 2008

A picture is worth a thousand words....

Laine was playing outside a couple weeks ago and I snapped this picture of her. I love this picture. The innocence, curiosity and simplicity speak so loudly to me. I loved her natural look. The wonder and amazement that she has for every new experience is awesome. That's one thing I love about being a parent is that children help bring excitement and joy to the most simple things. Even Paige at 7 still is excited about bubbles, sidewalk chalk, rainbows, splashing in the mud puddles, caterpillars and butterflies and most recently her new tadpole that is amazingly still alive after almost 2 weeks of being "rescued" from our friend's pool. She is feeding it and watching it grow. God, help me to appreciate the simple, normal, magical, wonderful, and fulfilling moments you give me too.

Wednesday, June 4, 2008

Box of Band-aids worth a million bucks

Yesterday Laine and I went to Target. I was busy getting supplies for our vacation and she saw a travel size box of Sponge Bob band aids that she had to have. "PLeeeease I need it"... she says. I didn't know that a .99 cent box of band aids could keep a 2 year old busy for about 1 hour. Are you kidding me? All these expensive toys and she was thrilled with something so simple. She had 9 of the 10 band aids on her arms and legs by the time she was done but I got some packing done and my Blog started. Might have to try that again....

Tuesday, June 3, 2008

The Beginning....

Today I decided to begin a blog. I wanted to share our stories, pictures and happenings in the Decker Family. The simple things that occur everyday bring us much joy. We treasure how God has provided for our family and especially our youngest daughter's life during the last 2 1/2 years. I hope you find the simple things in your own life that can change your life . Let me introduce myself...

I'm Jen..nice to meet you. I'm married to Jeff a swell guy. I have a 7 year old daughter Paige and 2 1/2 year old daughter Laine. Laine was born healthy, but then had an abnormal newborn screening. She was diagnosed with a rare Metabolic/Genetic disorder called VLCAD. She also developed 2 Strawberry Hemangiomas (unrelated medical issues) and saw about 11 different doctors during the first year. Now she is doing very well and the doctors are still puzzled and can't be sure of the Metabolic issue. Our family prays that indeed she has been healed and we give God the glory for that one!

For today's post this is a picture of a Petoskey Stone Jeff found last summer. We are headed to Frankfort Michigan (Lake Michigan) this Friday for a relaxing week vacation. Our family enjoys long walks on the beach to find these treasures.