Monday, January 30, 2012

Valentine's Day - "Let's SHARE THE LOVE"

Valentine's Dinner 2007

Valentine's Day is the one of best times of the year to let someone know that you love them. Our annual Valentine's Day dinner is one of Oliver's FAVORITE family traditions that we started when he was probably 3, so for the last 7 years, every Valentine's Day dinner is spent with our family... the ones we love the most. We go all out and have candles, rose petals, dim lights, light classical music playing in the background and fancy Italian foods.

I think it would be fun to challenge everyone to tell at least ONE person in your life how you feel about them... good feelings... we are trying to spread the love here!!! Sometimes we let life get too crazy, we are too stressed and overworked to say those three simple words. People need to know that you love them because you never know when life will no longer give you that chance to say it. It doesn't matter how you do it, face to face, in a card, poem, song or through a gift of service. Be nicer to one another and the love will more easily flow. Anyways... just a thought. Oliver has inspired me to be kinder to people and has made me realize that they may need the love that someone is not giving to them. You never know the pain someone is hiding behind their smile.

If you'd like to send Ollie a Valentine's Card and tell about the effects of your challenge that would be great! I don't know if he will make it to see Valentine's Day or not. Things have been happening more and more that lead us to believe that he may have weeks to days left. I'd love to see his face when he gets the 'love' notes from people that he's inspired to do better, to be better and to keep trying no matter what. I know it makes a difference to hear it from someone other than just mom and dad. :O)

The Lovable Oliver Palmer
417 Oaklawn Ave.
Waterloo, IA 50701

I'm trying to think of other special things to do this year to make it a little more special for him since it may be the last holiday we get to spend with him... if we are to be so lucky. Thank you for sharing the love!!!

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...

Friday, January 27, 2012

DIPG Kids - Sweet Valentina

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..."

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.

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.

Sunday, January 22, 2012

Music and Lyrics

I've been listening more intently to music lyrics lately, mainly the music of The Killers since those are the CD's that are in my van and my kids are always requesting their songs and I happen to love them. One thing I love about music is that the same song can mean so many different things to different people. We tend to hear things that trigger memories of our own lives and bring all sorts of emotions up. So many songs have so many verses that just stir something in me, especially with the struggles of this journey.

There is one part of a song that hits close to home when I feel like a failure... that I'm not living up to what other people think I should be doing. "And I'm sick of all my judges, so scared of what they'll find..." No one is perfect. I think we are all scared of the skeletons in our closets... the things that we don't want anyone to know about... the things that we struggle with in our daily lives. We all have short comings and we aren't here to judge anyone. I still need to learn this. I think at times I'm learning it the hard way. I just hope in time I can be okay with myself. To let go of things I can't control and give up on trying to be perfect for the people that have no authority to judge me.

Most people that know me know that I struggle with a mental illness and with that comes the sick and twisted thoughts of suicide. One thing I wish people could understand is that we DON'T like to feel this way. We don't say we feel this way to get attention. It is a horrible thing to truly feel like a failure and be so miserable with life, lost, alone and sad that sometimes you really feel that death is the best option. It's such a consuming thought at times when emotions are raging and it feels like you can't physically deal with things anymore. I've felt as though every episode I can get through is a battle that is won. And spiritually speaking I feel that I am up against the devil every day. "I saw the devil wrapping up his hands, he's getting ready for the showdown..." He wants us to be miserable like him and I think that having a mental illness allows him easier access into our minds and helps to distort our thoughts about ourselves and about the reality of life. I can relate to Cinderella in this song... "Now Cinderella don't you go to sleep, it's such a bitter form of refuge. Why don't you know the kingdom's under siege and everybody needs you..." I can see 'sleep' meaning two things for me personally. Sleep as in sleeping excessively as those who suffer from depression often do. It is the only time we can get away from life, from our thoughts and emotions. It is a refuge... a safe place. I can also see 'sleep' as meaning death. Dealing with suicidal thoughts and thinking of 'going to sleep' as a way to shelter myself from the pain of dealing with the emotions and reality of the difficult things in life. The kingdom is under siege... my household and family is under fire from Satan and my family needs me. My kids still need me. My husband still needs me. I don't know... it gets me through my difficult times. It helps me to truly see that I need to keep 'fighting' the devil and his crafty ways. I need to 'endure to the end'. This song makes me cry every time and I think I know what it is truly about which makes me cry as well. Ah... life is hard for so many people... "If you can hold on...
If you can hold on... hold on........................."

"God gives us hope but we still fear what we don't know." This makes me think of Oliver dealing with what he has to think about on a daily basis. He knows what is going on. He knows he's dying and he has hope that he will live again, but he's still scared. I'm still scared of the unknown.

Anyways... there are so many other songs of theirs that stir something in me... these are just a few that I've been listening to a lot.

I'm so grateful for music.

Breakdown city limits... ramblings of life.

Well... life is hard. Period. Oliver's health continues to decline. I've been feeling like I'm on the edge of a nervous breakdown. I feel as if I just can't deal with everything that is happening in my life. My mind races with so many emotions that I'm seemingly fine one minute and wanting to pull a 'Thelma and Louise' and drive off a cliff the next. I however wouldn't be flying over the edge in a sweet convertible with a crazy friend... it would just be myself in a light blue minivan. And... there really aren't any cliffs to speak of around here. All kidding aside, I feel calm enough now to joke about things, but really there are times that I just feel like I can't handle all that this life is throwing at us. Most people who know me know that I deal with things with humor most of the time. I think if I didn't I would be bawling every second of every day.

I'm so tired of being angry. I'm tired of feeling lost, alone, confused, exhausted. This has been such a trying time in life. I really hope this eventually has a happy ending. I don't want to be bitter. I don't want to live life jealous of the families whose children have survived their cancer. I want to be happy for them. Happy that their scans say "NED" (No Evidence of Disease). I'm jealous... I want Ollie's scans to show that the tumor has disappeared... that the cancer is gone. I don't want to be planning a freaking funeral for my 10 year old. I don't want to see his lifeless body laying in a child sized coffin. I don't want that picture imprinted in my memory. I don't want to walk into my living room and remember that 'he died here'. It's not fair. It's NOT fair. I don't want to hear, "He's in a better place." I don't want to hear "It's all part of the plan." I'm sick of hearing that. I'm sick of hearing what I 'should' do and how I 'should' feel. I'm sick of feeling like a failure because I have no control over my life. I have no control over what is happening to Oliver. I'm angry.

What is the right decision? We've chosen to have in home Hospice care and have him pass away here, but I don't know if I can handle being reminded that he died in a certain spot in our home, but I know that he is more comfortable here so I want to do what he wants to do. Obviously if there comes a time when he has to be in the hospital, we'd go there, but I just go back and forth with our decision. There is also the hospice house or the hospital, but we also have three other children. I just don't know what to do.

What is the right decision on funeral plans? I don't even want to have a funeral. I hate funerals. I know sometimes they are called a 'celebration of life', but I don't think I'd feel like celebrating anything. We are debating whether or not to have a private funeral just for family and close friends, but then... the people pleaser in me risks pissing off massive amounts of people. Oh well. I need to get over it. As a good friend said the other day... no matter what you do... you can't please everyone... someone is always mad about something. So true... in our own little world... someone is always mad that I gave them the wrong color sippy cup or made the wrong thing for dinner. UGH... life is hard.

Everyone has their opinion and sometimes... I just don't want to hear people's opinion. Maybe that's why I've been more of a hermit the last two years. I'm just sick of the advice people give without me asking for it. I'm sick of all the 'well you should...' and 'I know exactly how you feel...' stories. I know I 'should' have a thicker skin, but it's hard for me to let things just slide off my back. It's so much easier said than done.

Ed is sleeping on the love seat and Oliver is actually sleeping in his hospital bed with his oxygen on. Usually Oliver is on the love seat and Ed is either on the couch or in the hospital bed. Oliver wants Ed to sleep in the living room with him and be around at all times. I can no longer lift Oliver up to help him use the restroom so Ed is here all of the time now. He's almost used up all of his vacation for the year and will be starting his Family Medical Leave soon. Ahhhh... no paychecks for us... fantastic. Yeah... so financially speaking... we are pretty much at a loss. I just don't know what to do. Cash out our 401 k... I think that is the only way we can live for the next few months. Everything medical is out of pocket now for several thousands of dollars and we have to come up with the thousand dollar monthly premiums. Awesome. Then... to top it all off, Ed tells me that you can only have FMLA for like 3 months... so if Oliver miraculously hangs on until May or June, he may be out of a job. I hope they wouldn't do that to him, but they could if he's missed a lot of work. So... mentally, physically, spiritually, financially... I'm spent. It's not like we live in a nice house that we could downsize... we live in 'a bad part of town' and our house payment is less than what we would pay in rent right now for a rental house or apartment that would house us all. I'm just at a loss. Where do we go from here??? I now see why people drink themselves into oblivion. I just want to be numb. I know that it doesn't help the problem in the long run... but man... it would be nice not to be in so much pain and worry all the time. I'm just at a loss.

It's been hard because Ed and I never have time to spend alone because Ollie always wants us near. It would be nice to get to spend some time with Ed and we NEED to get together and discuss funeral plans. I hate talking about things like that in front of Oliver. We need to do it sooner rather than later, but there is always someone around in need of one thing or another. It feels like we've been living in a haze for the last two years. Nothing is ever planned out in stone because we never know what tomorrow brings... how Ollie will be feeling. We just fly by the seat of our pants all the time. I'm so tired of living in a fog, but who knows if life will ever be how it was before. I'm sure it won't be... I can already feel the change. I'm always feeling sick to my stomach just wondering what is around the next corner. No matter how hard I dig my nails in... the inevitable will happen. Life continues to go on.

I started going to a class at church that will hopefully be able to help me deal with certain things. I didn't feel so alone in struggling with certain things in life. I need to learn to give myself a break... to not be so hard on myself... to keep trying... to hold on. I need to be okay with feeling the feelings that I have. I'm angry... okay... it's okay to not like what is happening in life. Hopefully this class will help sort out some things and uncloud things for me. I need all the help I can get.

Monday, January 16, 2012

The 'What ifs"...

So, what has been on my mind lately???


Opening wounds in his groin area.
Always on oxygen. When his cheeks are really red that means that he's having trouble so we need to get him on oxygen.
I can't lift him anymore because of my own back problems.
Can't walk without assistance anymore, but tries to because he wants to be as independent as he can be. We are just worried about when he tries and then falls because he's just too weak.
His skin is so stretched out and thin in places because of the steroids that he's on. I'm scared that more areas will rip open and I've heard that it takes a while to heal.
He cries out of the blue and asks about death and heaven. This is a daily occurrence now. I know he's scared of being separated from us and scared of the unknown. He doesn't want to be alone and he doesn't want us, me in particular to be sad. We've been reading him lots of books about death and heaven and hope that it helps to calm him and reassure him. It's been rough because at times, even I don't know what I believe anymore.
He chokes on more and more things, which worries me.
The big question now is when to stop the steroid. Steroid side effects VS. Benefits of steroids. I just don't know how much it's helping. It could be helping him in his ability to still eat, speak, move, walk, not have headaches, etc. On the other hand, the steroids cause massive weight gain in such a short time that the areas of the skin can't handle it and stretch marks can split wide open. It also makes them more irritable and angry with other people. It really is an evil drug. I just don't know what to do. I know we'll talk with Ollie about it since we are always up front and honest with him about everything. We'll see.

Who wants to even begin to think about this at any age, much less for a child that hasn't even begun to really live their life yet. It isn't right. It makes me sick just thinking about having to find a funeral home and pick out a casket and burial plot. I don't even know what all goes into planning a funeral anyways. I'm completely clueless and numb at this point, but I know we need to get things planned before Ollie passes because then I will be COMPLETELY useless and wrought with too many emotions to do anything. I really wish I could be at peace and find some shred of strength. I just want to scream. I want to plan some special things for it, but don't know what yet. I'll have to think about it like I'm planning a party. A celebration for Oliver I guess. I don't know... *sigh*

IN HOME CARE VS. Hospice House or inpatient Hospital care
Right now we have nurses coming into our home once a week to check Ollie's vitals. I'm not a nurse, but there are some things that I know to possibly expect to see in Oliver when the time draws near. Thank goodness for the DIPG Yahoo support group where I can ask questions and get real answers from other parents who have been through similar things... been through a similar hell at times. I just want his needs and wants met. For him to be comfortable and pain free in the end. I just don't know how much more I can take, seeing him failing so much... just deteriorating daily. It makes me sick.

Friday, January 13, 2012

Post Christmas Gingerbread Houses and other January Randoms

January 2012

First of all, I would like to say THANK YOU to the family that donated their table and chairs to us. We've never had a new table or chairs. Our first table was given to us by a church friend and we bought some slightly mismatched and scratched chairs for it at a going out of business sale. Throughout our nearly 12 years of marriage we've had to say goodbye to several of our chairs. Many slow motion falls have happened throughout the years resulting an a pile of wooden rubble beneath our not so skinny behinds. So for a family of six, down to three chairs, we've been using upside down laundry baskets and Oliver's shower chair for our family dinners and the like. A wonderful stranger heard of our need and gladly gave us her table and six chairs. Bringing to mind a line from the movie Robots 'See a need... Fill a need'. I'm in love with the table already because it has a leaf in it and is so much bigger than our other one. We do so much at our kitchen table that I am thrilled to have gotten it. It will be in good hands... well... crafty hands. It will be well used. :O) So... here are some pictures of us actually making Gingerbread Houses... er... Graham cracker... er... candy houses! I don't have the patience or time to make my own gingerbread so graham crackers it is! ENJOY!!!

We invited Ed's brother, Danny and his wife, Jamie over with their little ones.

I dyed the 'glue' pink this year. Eden getting ready to add some goodies!

Oliver putting his house together with dad.

Someone sent Oliver this awesome Cubs shirt with his name on the back!

Laughing at his house. Not sure if he liked it or not. I'm sure Ed was probably making fun of his own building skills.

Daddy helping Finny with our house.

"Yes, Finn... please wipe that frosting right on your jammies... go ahead."

Mine and Finny's finished house. I think he's saying "CHEESE!"

Eden would do a nice smiling pic for me so here she is in all her geeked out glory!

Carson, age 2, Jamie, Phineas, age 2

Kaylee and Daddy's house looks like it was condemned... hence the boo hoo look on Danny's face!

Darling pic of my nephew, Carson, who is 3 months older than my Phineas.

Ed showing us all the sweet houses. And no... we do NOT eat the candy off the houses.

The boys all fell asleep together on Ollie's bed in the living room. I love how Jaren's hand is ALWAYS in his pants...

Oliver sitting at the table drawing in a Harry Potter sketchpad I got him for Christmas.

Playing with play dough. Making pizzas.

A nice balloon bouquet someone sent Oliver.

Finn trying to do some pull ups with Daddy.

"Show me your muscles, Finny!!!"

Brotherly love...

Going for a walk with the boys on a beautiful, sunny January day where there is no snow on the ground or in the skies. Craziness.

This is what a glasses thief looks like. I LOVE his face in this picture!

Thursday, January 5th

Tonight Oliver ate dinner and then complained of some stomach pain. He went to the restroom and had a bowel movement, but we didn't know if it was impacted bowels, kidney stones or his appendix or what it was. We called Hospice, but I just wanted to get him to the ER immediately because you could tell that he was experiencing a lot of pain and the children's dose of Tylenol wasn't doing much to help. So Ed and I drove him to the ER where we waited in the waiting room at least 15 to 20 minutes watching him writhe and groan in pain. We held his hands, held a wet towel on his head and sang him some songs to try and help him get through the pain until they could get him in a room and see him. We got him into a room and they did blood work and vitals and such and then he had a CT scan to check for what was possibly causing his pain. After a bit, his pain went away with no meds and the doctor came in later and said that he's full of crap. They said it was impacted bowels, gave us a laxative drink to get into him and told us to take cover because it can go through ya fast! Anyways... I'll leave the nasty stuff out... he feels much better now. I can't hardly stand watching him in pain. When I was singing to him I couldn't hardly get through some of the words without choking up. I'm going to need a lot more strength to be able to deal with all the things that are lying ahead.


Sunday, January 1, 2012

Happy New Year from HOGWARTS!

December 31, 2011 - January 1, 2012

I wasn't sure if Ollie was going to make it to the new year, but I wanted to make it special and memorable if he did, so we went all out for a Harry Potter New Year's celebration! I only had a day and a half to plan, but was lucky enough to have many decorations because of his new Harry Potter bedroom. Two of my good friends and their families came over for the festivities and helped me out so much throughout the night.

Oliver had gotten me the Unofficial Harry Potter Cookbook for Christmas and I was wanting to make some things from there, but just didn't have the time. Our house has been a constant disaster because we just haven't had time to clean. Our living room is a makeshift hospital room with all of Ollie's medical needs set up. We tried the best that we could to squeeze everyone in and make it a fun night. Ollie wasn't feeling well and stayed in his bed the whole time, but helped out in potions class and told me where to hide the snitch. He also got to have some butterbeer and was placed in Gryffindor House by the sorting hat, a gift he gave to Eden this Christmas. He was in and out of sleep, but hopefully had fun when he was awake.


Each child would sit on a stool and we'd place the sorting hat on their head and the hat would actually tell them, in a pre-recorded voice, what house they were in. Then they would receive a matching scarf to symbolize their house and the next child would come up. Oliver was first and I placed the hat on his head while Ed helped him lean forward. Of course he was placed in Gryffindor and so I put his scarf around him and he laid back down. Everyone clapped and cheered and he had a big smile on his face. It was so fun to see the kids reactions to what house they were placed in. Too funny! The hat would say one of these three things.

"Plenty of courage I see, not a bad mind either. There's talent, oh yes, and a thirst to prove yourself, but where to put you??? Mmmmm... difficult, very difficult... GRYFFINDOR!!!"

"I know... HUFFLEPUFF!!"


Gryffindor - Oliver, Meghan, Kaden, Kael
Slytherin - Jaren, Briea, Cullan
Hufflepuff - Eden (She's Cho Chang and loved being in the same house as 'Edward Cullen')
Ravenclaw - Phineas, Ayla (ages 2 & 1)

After the sorting ceremony we had a buffet set up of all sorts of finger foods. Drum sticks, a relish tray, chips and dip, little smokies, cheese and crackers and of course, Butterbeer. Amy made it with cream soda, Redi-whip, and butter flavoring. It was so good! Some of the little kids couldn't even lift up the mugs because they were so big! Ginormous... as Ollie would say. I wanted to make pumpkin juice, pumpkin pasties and rock cakes, but just didn't have the time. I'm sure we'll do it this week as I have all the ingredients.

After we cleared off the food, we set up the potions class on the table where Ollie could see it as well. We had lots of old glass bottles filled with some potion ingredients. For example, white vinegar and baking soda which of course had cooler names like 'goblin pee' and 'crushed dragon bones'. The kids would take turns coming up and helping us add the ingredients. Briea, who will be 3 in March, gasped in amazement when one of the potions started bubbling and foaming up. So funny! Oliver even got to make his own potion.

*The First Task - Successfully brew your own potion. The kids were having a hay day with this! They used their wands, chopsticks, to stir their concoctions together.

*The Second Task - Create and draw your own crest. I printed off a downloadable coloring page off of the internet so they could fill it in themselves. They were excited about it and Eden ended up making two of them.

*The Third Task - Find the Golden Snitch. Since I knew Ollie wouldn't be able to participate in the hunt, I asked him where I should hide it and he pointed to a wall sconce with a candle inside of it. I perched it on the glass that covered the candle. We then told the kids that someone had stolen the golden snitch and Harry needed it for his next Quidditch match so we had to find it fast! They looked around the dining room and living room until Eden finally found it! It was fun watching the kids using their wands to look for it. Meghan had hers out and was using it to peek under Oliver's blanket trying to locate it. "Accio, snitch" didn't seem to work.

After each task I would give them Galleons, Sickles, and Knuts from Gringott's bank (chocolate gold coins) to spend later on. They were each awarded with their very own Tri Wizard Cup, a tiny gold trophy I got from the party favor section of the Dollar Tree. I wrote each name on the front along with the year. They loved it! I heard "I'm a REAL wizard now!" from the kids when they received them!

HONEYDUKES Candy Shop & ZONKOS Joke Shop

We set up a small area in the kitchen for the kids to go shopping and spend their wizards money. Dollar Tree had tons of candy and fun jokes and gag gifts to make it fun for the kids. We got large glasses, magic tricks, fake spilled ketchup and nail polish bottles, fake snakes and cockroaches and all sorts of fun tricks and gags. They could each pick out one thing they wanted from Zonkos and then off to Honeydukes where we had Bertie Botts Every Flavor Beans (Jelly Belly jelly beans), chocolate frogs and broomsticks, Licorice Wands, Cockroach Clusters (Hersey's crunch bar clusters), lemon drops, pop rocks and all sorts of other goodies to choose from. They filled their bags and their tummies!

Since Ollie couldn't make it out to the kitchen, I grabbed his bedside table and filled it up with all sorts of goodies, like the candy cart on the train that Harry Potter loves so much. I wheeled it over to him, but he still wasn't feeling well, so I just put some things in a baggy for him if he felt up to something sweet.

It was a memorable New Year's Eve for many reasons. We had fun with some good friends although it was a bittersweet night. Some of my friends where only visiting here from out of state and I knew when they said goodbye it would probably be the last time they saw Oliver. Difficult to watch and take in. It will be a fun memory of a Harry Potter New Year, but also the start of a year which will most likely bring lots of sadness and grief. So many different emotions.

After our company left, around 10 o'clock or so, I got in Ollie's bed with him and had some snuggle time. After a while he started gagging in his bed and so Ed ran and got a garbage can and I leaned him forward on the bed and he threw up. Poor kiddo. I don't know if he got the flu or if it is a symptom of the brain tumor. He said he had a headache the day before. I just don't know what to expect on any given day. He felt a little better after that and sucked on a candy cane to help settle his stomach and get the nasty taste out of his mouth. I laid there and ran my fingers through his hair for a bit while we talked. It's getting so hard to understand him now. He used a white board to write on for the first time today so it's definitely getting worse. I layed in bed and read a chapter in the fourth book, Harry Potter and The Goblet of Fire. We are nearly done with that book. I've been reading a chapter every night to the kids for the last several months. It's nice to have some relaxing time at the end of the day to unwind and have our minds wander to someplace magical. We also iChatted with Ed's brother, Jared and his family who live in California. They called us when the ball was about to drop, in our neck of the woods, and wished Oliver a Happy New Year. So... the night was filled with mixed emotions, but overall I think everyone had fun. I pray that Oliver will feel better and continue to have his sense of humor and handsome smile. We wish you all had a Happy New Year!

***for some reason blogger won't let me post pictures right now. I'll have to try again later!