Monday, January 23, 2012

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.


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.


JODI said...

Ollie and your family continue to be in my prayers. Hugs from Ohio!

meghan said...

I am so sad to hear that he has those sores. Poor kid. He sure is a trooper. We pray for him and your family every day. Love to you all. <3

meghan said...

ps. So glad he got that Joy Jar. I love the picture of him holding it!! I know you said that he had already received one, but I am so happy that he was happy to get another one!

Lisa said...

It's not fair. Why does it have to be so hard? I think about you and Oliver often and continue to remember you in my prayers. I've been thinking about what it's like on the other side and the it comforts me (a little) when I remember that it's called Paradise for a reason. A place to rest from our worldly cares and sorrows. Hang in there. You will see him again.

Bobbi said...


Hope, in a hurry! said...

I think of your sweet family often and pray for you all daily. The photos of Phineas caring for Oliver and Oliver holding him so gently are precious. There's so much love in your home, even in this dark and scary time. My heart is heavy as it becomes increasingly difficult for Oliver to breathe and move around the house and you are having to make plans no parent wants to ever have to think about. Lifting you up to God and asking Him to give you strength, courage, hope, and peace.

Susan said...

Dear Ollie,
Your Aunt Janene is one of my favorite people and she posted on Facebook that you are having a hard time.
We have two things in common. One, I am a Hawkeye. I graduated a long time ago before they had a Quidditch team. And I love Harry Potter books and movies too. I even got the Harry Potter cookbook for Christmas too!
We will pray for you. It is very hard to see how we fit into a big eternal plan but your Heavenly Father loves you. Susan Denney