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...

DIPG Kids - Sweet Valentina

VALENTINA BRAVIN

Age: 5
New York
Diagnosed on 7/21/11 at 4 1/2 yrs old.

Valentina Bravin's caring bridge site

This was taken from their most recent blog post about Valentina's health...

"Unfortunately, this most recent MRI report of 1/12 indicates disease progression as well as spreading into the cervical spinal cord and other local areas of the brain and auditory canal. Not at all what we expected to hear. Talk about being blindsided..."

"PROGRESSION" is a term that no parent wants to hear with regards to cancer. It means that the tumor is growing and usually growing rapidly. With DIPG... progression usually means there is nothing much more they can do for your child. The 'grasping at straws' portion of the journey. Whenever I hear of another child going through the different stages of the journey it really makes my heart stop. I can put myself in their shoes and can understand what they are going through at times, while other times, I can only imagine what lies ahead for Oliver.

Please keep Valentina and her family in your prayers. We ALL need something to hold us up and gift us strength to deal with so many things on a daily basis.

DIPG Kids - ANGEL Ashlyn

Ashlyn Breanna Poole

Forever 21
7/31/90 - 1/23/12

One of Ollie's original works of art!

Please continue to pray for the other children battling as well as the families that have recently lost their children. A sweet young woman that I've been following passed away on the 23rd. Ashlyn Poole was 21 years old, from Virginia and had a cat named, Oliver. Of course I felt an instant connection to her! Oliver even drew a picture of her cat for her on her birthday which is in July as well. Her mom said that she had it sitting up on her dresser so she could always see it. They ordered a Team Ollie t-shirt that she proudly wore to her check ups. She seemed like such a sweet and loving young woman. I would have liked to have met her and her family. Please pray for her family, her boyfriend and all that loved her. I know it is a devastating loss for them all.

Ollie Update - January

Finny 'helping' Oliver with his oxygen tubing.

I love the sweet look on Finny's face as he 'helps' Oliver wipe his mouth. Ollie has been so patient with him and all of his... 'help'.

I love seeing this. See his hand gently wrapped around Phineas? Makes me smile.

Jaren, 4 1/2 and Phineas, 2 -- LOVE Superheroes!

Love the looks on this kid's face AND the collar hanging out of the costume! It must be Spider-man's formal attire.

Ollie LOVES eating at Tokyo... a local Japanese steakhouse. He can still use the chopsticks like a pro when he eats his steak, although both of those abilities he's losing every day. He gets cravings at weird hours of the night and just dwells on them until we go a few days later! He'll also randomly say things that he wants us to get either from the fridge or the store. I was walking out the door for a class the other night and he yells, "French Onion Dip!" He constantly makes me laugh! He's so random sometimes!

Eden made this sign and put it on our bedroom door. She was doing 'yoga' with Jaren. These kids are too funny with all of their signs and witty comebacks.

Eden pulling Finn and Jaren all over on the blanket. Love hearing laughter throughout the house.

"CHEESY!"

LOVE the look on his face! Thank you for the JOY JAR! Sadly, Jessica, the young lady that came up with this idea passed away earlier this month from a brain tumor. Please keep her family in your prayers.

January 24, 2012

In the span of two days, we've received so much snow. There has been no snow all winter until now. Since it's been snowing Ollie hasn't been anywhere. His ability to move around has declined. We don't have a ramp for his wheelchair yet and nor do we have a wheelchair lift for our van. So we had the sacrament (bread and water) brought to us on Sunday to be blessed and passed around. It's harder for Ollie to move. He can't sit up on his own anymore and needs pillows to prop him up whether he's lying down on the couch or in bed or propped up to watch TV or try and eat. When he eats, he chokes several times throughout the course of the meal which is scary to watch because I don't know if he'll stop breathing or start to throw up. His speech is worsening as is his breathing. He's on oxygen all of the time. When his cheeks are red that means that his body is trying too hard to get oxygen. It's hard to see him hooked up to the oxygen and having to be propped up with pillows. He's gets frustrated lately because he says, "I just can't do anything anymore!" It's hard to get him up to walk even with us helping him the whole way. He uses his urinal most of the time, but Ed tries to get him to exercise his legs by helping him shuffle to the toilet. He generally sleeps with just a shirt on because his open sores are in his groin area and I think it just feels better when undies aren't sitting on the irritated area. I used a warm cloth to clean that area when I first found out that they had opened and started to bleed. I can't lie... it made my head spin and made me feel queasy. This is why I can't become a nurse. I can't deal with blood and bodily fluids and seeing open wounds. I just don't want him to be in pain and he still really doesn't complain about pain. He says he's been nauseas the last few days, but no vomiting. His speech is more difficult to understand, but he still smiles, still has his sense of humor and that laugh that I've loved since I first heard it come out of him. Please continue to pray for his health, for strength, peace, comfort and that he won't be afraid.

Ollie has been watching several movies and TV shows on Netflix, one of which we've all been watching together called 'Cake Boss'. They make these AMAZING specialty cakes and all sorts of other pastries. Since they are located in New Jersey, Ed looked online to see if they ship to different parts of the country, but they don't. Boo. That would have been fun to try some! It inspired me to bake for once. Ed loves carrot cake, but whenever I find some at local bakeries they have nuts, which Ed hates and happens to be allergic to, thus dubbing them 'poisonberries'. So Phineas and I made some from scratch last night. That kid LOVES helping me in the kitchen -- whether we are cooking or sweeping up, he's always ready to 'help'! So cute.

So we made it and then I 'dirty iced' the whole thing... I'm picking up some sweet terminology from the show! Anyways... it turned out pretty good for my first ever carrot cake!

We've also been trying to do some crafty things, designing plates, drawing, hand print crafts. It's hard to see that Oliver is losing a lot of his motor skills. He can't really draw anymore, which is something he really started to love doing, especially when he couldn't play sports anymore. It's hard seeing the loss of things he loves to do. I ordered some 'Harry Potter' games online for us to play, Uno, Clue and Scene It and so they should be here in a few days. I'm planning on making some Pumpkin Pasties, Rock Cakes and Butter Beer (Ollie got me a Harry Potter cookbook for Christmas) as well as chocolate frogs and Bertie Botts Every Flavored Beans I ordered online. Since he can still play games and cards I thought that would be a fun thing to do with him.

The other night while all the kids were in bed, Ed and I talked about funeral stuff for Oliver, which was difficult to think about. I just don't know what funerals entail since I really haven't been to that many. There was a free online planning service offered by a local funeral home that we used to figure out what things we need to plan for. It's still so hard to think about... even though it is our reality and will most likely be happening soon.



January 26, 2012

Things seem to be getting worse on a daily basis. He slept a ton today which is not a good sign, but I figure that at least he's not in any pain which is a huge blessing. Moving him around has been getting more and more difficult every day. He mainly shuffles from point A to point B with help from at least one to two people. He mainly just lays on the loveseat or is propped up a bit with pillows in order to sit up for a while. I just feel so bad for him. He does not look comfortable at all. Just not a great quality of life right now. I just know his journey is nearing the end and I hope I will be ready to accept the fact that he will be free from his earthly body that is betraying him. His body is giving up on him and he is aware of every single loss in ability which has got to be horrifically frustrating. I just watch him laying down a lot. I watch his face, his chest moving up and down and I wonder what he's dreaming about. He whimpers a lot during his sleep which makes me wonder if he's having nightmares. We have a lot of decisions to be made with regards to funeral arrangements and brain tumor donation. It's overwhelming to think about. Do we talk about all of this with Oliver? I think we will. He knows what is going on anyways. I want to make it as special as we can.

Thank you again for all of your prayers for Ollie and all the kindness you have shown him and our family. It has been difficult for me to ask for help. I am grateful for the help with dinners, cleaning and babysitting so that we can spend more time with Oliver. It has helped lift our load tremendously, so THANK YOU.