Saturday, January 28, 2012

No more traveling...

Saturday, January 28, 2012

Well... tonight was a difficult night. After nearly two weeks of not being able to go outside with Ollie, we borrowed a van with a wheelchair lift to go out and get some fresh air and a change of scenery for Oliver. After 10 minutes in his chair he wanted to lay down. We were going to take him to see a movie and go out to eat, but opted for dinner only and even that was difficult. It is hard for him to keep his head up without pillows now. He says that his back hurts more when he's trying to sit up and that his butt gets sore when he's in a certain position for a while. Ed has also been feeding Oliver more and more often. He just can't get his hands to grip the way he used to. Poor little man.

We had been hoping to go to Dance Marathon this year, which is an annual fundraising event for the Children's hospital down in Iowa City and a 24 hour event for the kids and families to honor those kids fighting and remember those that have passed away. We ALL look forward to this fun filled and emotional event each year. This would have been our third year attending. It is so close, but I just don't think Ollie will be able to make it. Eden is really bummed out, but understands why we aren't going to be able to go. We'll be there in spirit.

It's harder to understand him when he tries to tell us something so he doesn't talk as much. He had lots of visitors today, Grandma Young, Uncle Bryan, Uncle Chad, Grandma and Grandpa Palmer, Grandma and Grandpa Boardsen and his friend Takota came over to play for a few hours. They played video games and used the remote control helicopter that my mom, Bry and Chad brought over. The kids... well... the boys LOVE to play with it, but the charge in it doesn't last very long. Finny likes to have the helicopter take off from on the top of his head... weirdo. :O)

We got a fingerprint art book and Eden has been going to town coming up with stories and fingerprint pictures galore! It's so fun to see the kids love arts and crafts as much as I do. I need to get some other memory making things ready for the kids to do. My mom also bought her a book where she can design clothes for paper dolls which she loves. She's a girl after my own creative heart!

Jaren has been playing with more action figures, mainly superheroes... Spider-man and Captain America are his favorites and watching plenty of Spongebob on the portable DVD player in his bedroom. We've also been playing Spongebob Yahtzee, a game he got for Christmas. He still has his eating and breathing issues that we need to address soon. He has an auto-immune disease, Eosinophilic Esophagitis which has no cure. He hardly eats a thing and never has. Ever since he was a baby, he would choke, gag and eventually throw everything he ate up. He pretty much subsists on soy baby formula, crackers, cereal and baby food sweet potatoes and bananas. He may need to be placed on a feeding tube until he can eat 25 different foods. But, of course we have to wait until things calm down with Oliver's medical needs. Right now we try to get him to at least lick different things at dinner time, but even that is nearly impossible. *SIGH* Parenting is hard.

Finny has been playing a lot with Jaren and still the busy body around the house. He and Jaren play upstairs together more and he has started to play a bit by himself as well. Luckily he still has his one nap a day so he's not a complete beast for us. He is definitely into more things than all the other kids combined. He wears Ed and I out on a daily basis, but man... is he a cutie boy! I can't stay mad at him long, even when he just randomly dumps a whole cup of water on the kitchen floor.

Ed and I are just getting by. Trying to do what needs to be done and hope that all things come out for the best. What else can you do?!?

Please keep Oliver in your prayers...

24 comments:

Janene Wawro said...

I giggled out loud envisioning Finny balancing a helicopter on his head. He is cuteness1 And I'm with Eden...I LOVED paper dolls as a little girl. We will say lots of prayers for Jaren and Oliver, and two big ones for you and Ed. You guys are surviving so much - please know that you have SO MANY people who love you and are praying for you. Including us crazy Texans! :)

Emmy said...

Oh Finny you gave me a great idea! I'm going to ask my brother to get his helicopter to take off from the top of my head (: sounds pretty cool.

But, I wish you Oliver was still able to go out and could go to the dance marathon. I am not sure how it is set up or anything but maybe they can do a live cast thing and have a link up online for everyone that has to miss it? :/

My prayers never stop for Oliver and the family. Love you <3.

Mila said...

Prayers are with all of you Stacy ..You guys are in our hearts now ..

Beth said...

Definitely praying for him and all of you!

Connie Phillis said...

I am sorry Ollie is not up to going out, however it seems the time has come for him to rest and be as comfortable as possible. Thinking and praying for all of your family members and of course for Ollie to be comfortable. He is such a strong and brave child.

Daniluna said...

What an amazing blog site, so well put together! God bless you Oliver on your journey, God bless all those who so deeply love you as well. Prayers from my home to yours. Read Psalm 91, it will give you much comfort when you feel times are trying and unspeakable to go thru. God provides shelter to his children, He won't leave your side and will continue to hold you up and give you the peace to get through every single day, hour and minute. God bless you.

Krista said...

i love that life has it's ups and downs. I would not remember or appreciate the ups if it were not for the downs. I know for you and your wonderful family, there have been more downs than ups. But I also know what an intense love you have for your kids!
i pray for you and Ed...and your wonderful mom and brothers. For all your family that are supporting you! will there be more ups??? of course there will and you are doing exactly what you are supposed to to make those ups memorable. May the Lord bless you! I pray always that HE does! we love you!

em.arnols said...

Sorry to hear your family is unable to attend the fundraiser. I cannot begin to comprehend what you go through on a daily basis. I am a mother of four and I thank God everyday they are healthy after pray for other children like Ollie. We keep your family in our prayers.

meghan said...

Sending love. We prayed or all of you tonight and all of a sudden Kael broke down in tears and said he did to want Ollie to die. It was heartbreaking but we talked for a while. Kael and Cullan said they wished we could see him again. I agree. Lots of love and prayers our way.

Stephen Logan said...

Oliver has been in my prayers daily since I read about him and you early December, Can't think of a greater miracle then Lord Jesus healing Oliver and other children ill with these terrible illnesses, May God grant you strength and grace as Oliver and you continue to deal with this...

Stephen Logan
-- a survivor --

Becca said...

Your family and Ollie are in my prayers every day <3

Frisbies Forever said...

Oh, hugs, Stacy!! I didn't know Jaren had such a hard time too. Lots of hugs and lots of love. We will be praying for you all. I wish we were closer, I would love to make dinner for you guys!!

Unknown said...

I am keeping Ollie and all of you in my prayers. Hugs, Vades

Anonymous said...

I'm so sad that he didn't have a better day out. I read all your post and like so many others I am praying for you and your darling son. Take Care Mary

Amy Halterman said...

Ollie is such a great kid, and it just breaks my heart that he is enduring this, and your family with him each step of the way. You are a great Mom, and you have a great family. I have marveled at your strength (though I am sure you, at times, have not thought of yourself as strong) and how you find joy in each little thing. Ollie's art, Eden's creativity, Jaren's silliness...forever families are wonderful. Praying that our Heavenly Father wraps His loving arms around you all. Love and prayers. <3

Anonymous said...

♥ hugs & prayers ♥

Carrie Rzepka said...

Praying for you all often!! Much love!

Carrie said...

It breaks my heart and makes me cry to know Ollie is having such a harder time. I can't even begin to pretend to know what you all go through on a daily basis and how you feel. I don't think anyone can. I know that Ollie has fought and continues to fight so hard and he is so brave. Much more then I have ever been. And Stacy you amaze me. You are SUCH a great mother and you are so strong. I wish I could be there to give you a hug, I wish I knew just the right things to say and do. I'm glad he got to have so many visitors yesterday. You all continue to be in my thoughts and prayers everyday. I'm sorry that you are not going to beable to make it to Dance Marathon. I know you guys were looking forward to that. Just know I am here if you need to talk, cry, scream whatever it may be. I love you guys

Jennifer said...

You don't know me, I live in Charles City and heard about Ollie when I was subbing at school! I check Ollie's blog everyday and am so saddened at what your precious boy has to endure! As his parents, and a parent myself, I can't even begin to fathom how you do it! Give each other a hug and know that you are in my thoughts.. Give Ollie a hug from a stranger who lives in Charles City! My husband has one of those little helicopters.. has to be the same one! Will b thinking of Ollie and your family! STAY STRONG!

Anonymous said...

Stacy & Ed, I really admire your strength and courage. I think about Oliver everyday. You both are really wonderful parents.

MHefelKramer said...

Hi Stacy and especially Ollie...I read your posts everyday, and look at all the pictures, and cry, and pray...and most of all want Ollie to know he is loved by so many, and that he did make a difference, he touched so many lives...all my love.

jo said...

yep, you're right. parenting is very hard even without all you are going through as a family. You are doing the most amazing job of meeting Ollie's needs and the needs of your other children.
My heart is breaking for you all.
you are continually in my thoughts and prayers. Hugs to all from the UK
xxx

MHefelKramer said...

wanted to tell you also Stacy, I would be honored to do a drawing of Ollie for you...all I need is a close up picture of him emailed to me mhefelkramer@gmail.com...I know things are so busy for you right now,
but it would be such and honor! He is so dear to so many people, my son asks about him everyday...if there is ever anything else we can do for you, do not hesitate to ask! Our continued thoughts, prayers, and love!

The "A" Palmers said...

We love you guys. Thoughts and prayers are with you all. Aaron