May 10th, So are two year olds! Levi now says "dad" and "mom". He'll yell "Daa-ee?" and look around for him. He's also learned to nod or shake his head no appropriately. It's so cute.
May 11
Saturday, May 20, 2006
10:19 PM - Guess I should post something
Current mood: lethargic
Been awhile. Hmm what to talk about? It's Saturday night, we're home, dh is passed out on the couch. He's worked 3rd and then onto first shift today then mowed our pasture all afternoon so he is out like a light. Livie is playing quietly with her new snakes. Don't worry they're only 4 inches long. And plastic. She has them coupled up breastfeeding "So they'll grow up strong".
I need to get her a tshirt that says "Future breastfeeding mommy" or "Ex breastfeeder!" Oh I like that. Don't think I've seen that anywhere on any sites.
Levi's at his grandparents just like every other weekend. He fell Friday and hit his head hard. Poor kid. Just what he needs. ANOTHER head injury. He had his helmet on ALLL day and wouldn't ya know it, he takes it off, I think "Oh grandma will be here soon" and I run inside to grab a diaper and Livie starts screaming "LEVI FELL AND HE FELL HARD!!" She freaks easily. He had a huge goose egg and it was about 1/4 inch below his suture line on the back of his head. So, it's 4:30 phew can go to the clinic not the ER. So I call the clinic, tell the doctor's nurse, who I didn't know to tell the doctor Levi BLAH fell and hit his head hard and I was on my way in. There are some perks to having a child with health issues. If it had been Livie we would have probably just gone to the ER. Anyway, didn't show any signs of fracture or messing up his fake skull. Called his grandparents today and Dee said the swelling had gone way down. Thank goodness. I sure miss him when he's gone on the weekends but Dee and Jim are blessings!
Thursday, June 01, 2006
8:01 PM - assortment of stuff
Category: Religion and Philosophy
I hope ya'll had a great holiday weekend. Mine was just *nice* as a tummy virus seemed to go around. Over the weekend, my son, grandmother, cousin, mother in law, husband were all sick at various times. I was sick Tuesday night. Dh was sick on his only evening off from work. I think it has all passed now.
Dh broke/injured his foot at work. At first the ER docs thought he broke the "talus". It's the bone in the ankle that the ?tibula? (I think I have the names right), aka leg bone rests on. First, they thought it was broke and he'd be off for like 12 weeks. He went to the orthopedic doctor and he said what happened was the tibula slid off backwards off the talus and hit the heel bone then (thankfully) popped back into place. So his bones are all bruised and tendons and stuff are bruised. Should only be off for 3 weeks. Phew.
Levi's next MRI is July 12th. Breathe deeply. His two year cancer free day is June 16th. :) I don't feel as anxious and nervous as I did for his first year one. I guess as time goes by and the less time we spend at doctors and specialists it gets easier to let go of the fear. At least for a time. That first year it was very consuming. It was hard to not get swallowed in it. One couldn't help but constantly be reminded of the horror of it all. It's plain to see that there is something different about Levi. His head is misshapen and when his hair is short the scar just glares at you.
See, was getting sucked into the living nightmare again. We use to pray that IF he lived please let it be a pain free and "normal" life. We didn't pray for him to just live. Do you know how hard it is to say "If he lives but is a vegetable please just take him. Don't let him live life without knowing he's even alive. Don't let him live just to go through daily pain. Let him enjoy life. Let him have what everybody else takes for granted." And God answered those prayers. Of course, we had to go down paths that we never would have taken in life otherwise for those prayers to be answered. Our souls needed us to to experience the pain, the heartache, the immense love and unselfishness for our children, the wonder, the lostness, the strength, the support and love from others, the fear, elatement, comfort in others and ourselves. The letting go, giving in, accepting help. We needed to experience the miracle. All that and so much more. Our souls needs us to experience all these things to fulfill our spiritual needs.
I just hope that it was enough that I won't be coming back to experience it even more. When I go Home I want to stay Home.
Friday, June 02, 2006
2:04 PM - Booger picker
Current mood: drained
Category: Life
Why does my son pick his nose then offer me the booger? What am I going to do with it? Booger picker or not he's still adorable in his own scrawny, bony lumpy headed way. Now he has the kleenex that houses the booger stuck in his mouth.
He's so scrawny. When he's standing you can see his shoulder blades, rib cage...he's like a skeleton with a round tummy. And his short hair accentuates it all. He looked a little fuller with longer hair. He does have chub on his thighs. Of course, not the chub thatfatbaby Olivia had.
It's weird to go from a fat baby who was in large diapers at five months to a 2 year old that still wears medium diapers. He still wears 12 month clothes!
Well, he's yelling now so must go. Who am I kidding? He's always yelling.
Tuesday, June 13, 2006
6:58 PM - Levi's 2nd Cancer Free anniversary!
Current mood: hopeful
Category: Goals, Plans, Hopes
In 3 days it will be 2 years since they removed the tumor from my baby boy's head! Oh the heartache and mind numbing anticipation and waiting. The hours of waiting. Trying to be busy. Walking around the strange neighborhood of the hospital. Eating just to not think about what was going on in that room where they were cutting into my 8 week old's brain. The life and future of my squirmy, cuddly baby boy in the hands of complete strangers. Every small decision made by complete strangers could be mean a future of no hope, a future full of promise or time just stopping.
I remember smoking cigarette after cigarette. Trying to lose myself in a crossword puzzle or a book. Then the pager went off and we were rushing down the stairs and across the street, down the block up to sliding doors. Gasping as we ran for the elevator. Not knowing what was waiting for us when the elevator stopped at our floor. Telling the lady behind the desk our name, being led to a small private room. The surgeon and another sitting there waiting for us. To tell us....he was fine! He came through with flying colors. His heartrate never changed, his blood pressure never dropped despite having to replace his entire blood supply. How strange that was to know that someone I'll never know, someone I'll never meet, someone who will never know what happened to the blood that they donated...that their life's blood was in my son. Keeping him alive. The surgeon cried. The other person cried. We bawled and praised God and all the powers that be for letting my son live. For not giving him a life of sorrow and pain.
Friday, July 07, 2006
11:54 AM - Damn cookies
Category: Food and Restaurants
I was packing up the camper and cleaning up outside before we headed home. I had the kids in the camper and had given them cookies to keep them busy. I hear Levi screaming (nothing new) and Livie stating that they had to put the rest up for later. In other words, when she can finish them up by herself. I hear her say there are two left. So I tell her to give Levi another. He is still carrying on and I hear her mumbling but can't catch what she actually said. So, going by the screams I'm thinking she has yet to give him another cookie so I yell out "LIVIE!" She says "I didn't say DAMN, mom!"
Ahh 4 year olds are sooo fun!
Monday, July 10, 2006
3:23 PM - Levi's squishy head
Current mood: drained
Category: Life
I called the neuro nurse today. Levi's skull where the new skull is has gone squishy. Not all of it but a small area. The nurse said if we weren't already coming up Wed she'd have us come up asap. She's hoping that it's minor but she agreed with my fear of having to have another surgery. I don't know if they'll have us stay up there longer than Thursday or not. I will update as soon as I know something.
July 26
1:29 PM - Levi update
Current mood: grateful
Category: Life
Yay! No sign of cancer. The squishy head is from the fake skull starting to dissolve. It's suppose to but for a year or so after the surgery and it's only been 2.5 months. :( So, we're suppose to call back up here to the neuro in about 4 weeks and let him know if it calcifies (hardens) or dissolves even more. If it keeps dissolving then he'll have to have another surgery and they'll put in a metal plate, which they really don't want to do. So we may be coming back up before our next usual checkup that is Nov 15.
On an interesting note, they (Dr. Goldman, Tomita and whoever else) will be doing a case study about Levi and his cancer and it will be published in the next couple of years. His cancer is so rare (inflammatory myofibroblastic tumor) that there is really no info on it so they want to share their findings. Which we totally agree with. He said that he was going to put in the paper that the parents discontinued the chemo therapy (thalidomide trial) and THEY WERE RIGHT lol. He said he'd even underline it. :)
The only other exciting events beside the 6.5 hours spent at the hospital today was trying to rescue a mama duck her babies. Levi was out of the MRI though so we had to abandon the effort. There were two young ladies trying to catch her. When she flew up on to a parking deck one of them said "I didn't know ducks could fly." Snickering....yup city born and bred!
Wednesday, July 26, 2006
1:31 PM - More catching up
Current mood: tired
Category: Life
Levi had his thyroid checked in Chicago because he's still not really growing. The levels weren't completely normal. So had them rechecked at our ped's office this Monday. Have spent two days playing phone tag with them. I'm guessing the levels weren't good again. They usually leave a message when there is good news and they didn't. Just a message for me to call them. I have them on speed dial.
Sunday, July 30, 2006
6:21 PM - Levi's thyroid
Current mood: tired
Category: Life
Forgot to update. There are three levels they check. Two were smack in the middle normal and one that's suppose to range between .8 and 2.2 was .7. So no big worries, I guess. Recheck in 6 months.
I still haven't called Chicago. Really dragging my feet on this one. Don't know why. Something is itching at me about him having another surgery.
August 1, Levi can fly!
Tuesday, August 15, 2006
4:07 PM - Levi's Surgery
Current mood: tired
Category: Goals, Plans, Hopes
Levi's surgery is scheduled for 10 am August 28th. It's a Monday. And, of course, Livie's preschool openhouse. And I'll have to miss it. :( My mom will be taking her instead. I hope we're back in time for her first day back to school.
What ya get when you ask Levi to smile. :)
Wednesday, August 23, 2006
4:11 AM - Gut instincts
Current mood: calm
Category: Life
We have decided to postpone Levi's surgery. It just doesn't feel right. I'm more of a wreck than usual and we have been doing what our instincts tell us to through this whole ordeal so I think we better listen this time too. It's not let us down so far. I feel much better now. Thank you to Julie and my husband for listening to me, thinking it through with me and holding my hand.
Tuesday, August 29, 2006
1:23 AM - Where Babies Come From
Current mood: bored
Category: Life
Livie knows where babies come from and how they get here. You go wimmin in the cuzzi and they pop out your butt. :)
Her little brother was born at home in our jacuzzi so that's where she gets that idea. Of course, I straightened her out about the vagina/butt mix up. She walked around all evening with her belly stuck out saying she had a baby in there. She really really wants me to have a baby lol. Just not a boy baby. I keep telling her we have to wait til Levi's older and her solution is to just throw him away or give him to grandma dee dee permanently.
Thursday, September 07, 2006
10:34 PM - Not so quick post
Current mood: sore
Category: Life
Last weekend had a great time. Went camping for 4-5 nights in a row. A couple kid free. We went to the bluesfest. A young harmonica player Haley Crouch was awesome. She's only 15! So check her out! She can play some blues.
We observed the Spirit of Peoria. It's an paddlewheel boat that has dinner cruises and overnight cruises where you stay at a place for the night, not on the boat. Spirit of Peoria I don't know if we'll ever go on one as it's a bit pricey and geared more towards older people.
Before we left the riverfront we decided to go on a horse drawn carriage ride.
Then we ate at Texas Roadhouse. They have the most delicious steak. hmm yummy. I "donated" an old license plate of mine to put up on their wall. It has "fatbby" on it. :)
Livie had her first day of school. :)
Levi had OT. The therapist said he's her most stubborn customer. Gee that sounds familiar!
Today we brought home a new member of the family. A pygmy goat named Duke. He's 10 months old. And he stinks. They pee on themselves. Yah. Eww. But he's cute. And friendly. He's also hung like a bull. Wonder if I can get him neutered? :)
Watched the movie "United 93" last night. Didn't really get into it but the ending just shook me to the core.
We're taking the train to St. Louis. Jason has a doc's appt. Livie and I are going with him. It'll be not only Livie's first train ride but mine too! Really looking forward to it.
Ok I think that's it. Good night.
September 25
Jason got a little upset with Levi's physical therapist today. Levi didn't want to play with whatever she was wanting him to play with and she thought the solution was to force him to do it. Well, being Levi (and just about any toddler would do the same) he just screamed. And the longer she forced him the worse he got. Finally, she gave up. Then she started in about discipline and she can understand that we don't considering his age and issues. Um hello? I didn't know she was a frequent guest in our home. She hasn't a clue has to what we do for discipline and it's really none of her business. Her job is to help him function using his left arm! I guess she expected Jason to discipline Levi in some manner for refusing to go play with a an almost stranger. I have a feeling we'll be stopping the PT and just going with OT and speech. I haven't seen the OT in action but Jason has seen all 3 and he's most impressed with the OT. She knows how to get Levi to interact. How to grab his attention and flows with his interests. If he doesn't want to do what she tries then she moves on to something else.
hursday, September 28, 2006
4:27 AM - The Constant Gardener/My husband flatters me
Category: Movies, TV, Celebrities
I watched the Constant Gardener with dh. He flatters me by saying he sees me in Tessa. And, himself in her husband. I'm the opinionated and hardheaded woman and he's the man who follows her to her death out of love. Great movie. I shed a single tear at the end. Didn't even know it was coming til I felt it on my cheek in the corner of my eye. Poor Jason didn't get to see the end. He fell asleep before it ended. I guess he should have "napped" with me when I took the kids to bed and ended up falling asleep myself. It's gonna suck when the kids wake up.
Today's Thursday, thank goodness. Just one more day til the weekend. I love my kids but I look forward to my weekends with Jason and Livie without Levi screaming and crying all the time.
I thinks he's outgrowing it a bit. Finally. He does play by himself and with Livie for a bit without tantrums. But, God help us, when he's been "wronged" the world has to come to a shuddering stop to fix the issue.
The other day he threw the most awful fit. He had gotten a small piece of glass in his foot. We were just getting ready to change his diaper and clothes. He was stinky and dirty from playing in the yard. So, Jason and I had to hold him still and Jason removed the glass. Levi screamed and cried and threw himself around. Was hitting Jason in the face and head. When we got the glass out, put neosporin and a band aid on it we then had to change his clothes. Oh Lord have mercy on the one who has to do that task. Which, this time took the both of us. I couldn't deal with it so I left him in the house with daddy and came outside. Outside and Jason are my reprieves. Jason said he just weathered the tyrant Levi til he finally calmed down enough for Jason to distract him with playing. Then, all was well. Levi's like a tornado. He blows up out of nowhere (granted this time a piece of glass did it but usually we don't have many clues to go on) and swirls past and out of sight before we can get to safety. We feel we are truly blessed with this enigma of a child. And I am blessed with Jason and happy pills to get through these young years.
I was cuddling tonight with Levi to get him to sleep. His back up against my chest, my nose in his hair. His head on my right arm and my left arm across his tiny body. My right hand in a death grip by both of my daughter's hands. Her sweet, hot breath blowing moist on my hand. I was inhaling Levi's little boy smell and thinking "God, thank you for this. This makes it all worthwhile. This is what I need to make me complete."
I will never know what caused Levi's cancer. I will never know anything about his cancer. But I do know, I have to indure this to be complete. I know God gave us Levi because we needed this. We needed to experience living hell to find heaven. Levi is my heaven. I know, before I came into this existence, in this time and place, that I chose to live this life. Knowing that, somehow, makes it bearable. To know I chose this and wrote it all out before I came here. God and I chose this for me and I know neither one of us would give me something I can't handle.
And my MIL worries about my children and their "relationship" with God. She doesn't see that they are a part of God. They are gifts from God. They will grow up knowing this. They will also grow up knowing you don't have to go to a building and give your money and blood to the people running the building to have a relationship with God. They will grow up to know that all higher beings are the same one. They will know unconditional and universal love. They will know that worshiping the Mother Earth is worshiping God. They will know we were all born of Pagans. We are all Pagans. The Gods of life, water, earth, sky, plants, flowers, bugs, dinosaurs, horses, cows....they are all God.
Wednesday, November 08, 2006
3:06 AM - Catch Up
Current mood: tired
Category: Life
Haven't blogged a real blog in a long time. Things have been crazy. Jason's been on crutches for a couple of weeks which really makes it fun around here. High needs toddler, dog and hubby! Then dh fell flat on his face and hurt his arm and wrist pretty bad so now it kills him to use the crutches. So when I'm not catering to his every thirst, hunger and want, I'm catering to Levi and when I'm not doing that I try to keep the dishes and laundry caught up. And when I'm not doing that I'm trying to sew up cloth diapers for customers. And when I'm not doing that I'm trying to update my websites and when I'm not doing that I'm crocheting items for a craft fair I'm doing in a couple of weeks. At least while I'm crocheting and I can listen to my soap.
Levi's MRI in Chicago for next week had to be rescheduled (chit need to call the RMD house again and change the date). The MRI part of the day never got scheduled. So then they wanted to do it the next week which meant we would not have been home for Thanksgiving. Which might not have been a bad thing. I hate figuring out who's house to go too. Anyway so they scheduled it for Dec 20th. We'll be home before Christmas. Also Jason and I are going out of town at the beginning of December on a trip planned a long, long time ago. We definitely need this trip.
Livie's fifth bday party is this weekend at the bowling alley. She can't wait to have her "balls and dinosaurs" party.
Time for bed. Again.
2:37 AM - Purple stripes and poop
Current mood: good
Category: Life
they really need a category for "parenting".
I went outside today to make some phone calls to levi's doctor. Can't make calls like that in the house with them running around screaming and beating each other up. So about 15 minutes later I come back in. First thing I see is a nekid Levi with some colorful designs on his nekid skin. Then I turn and Livie has the same beautiful markings. So I tell them to get up on the chair so I can take a picture. As I aim the camera I tell Livie to scoot closer to Levi. She says "NO HE HAS POOP ALL OVER HIS BUTT". Sigh. So I took the picture then cleaned up the poop, found the poopie SWADDLEBEES OUT OF THE TRASH CAN!!!
Saturday, November 11, 2006
1:04 AM - Sisterhood of the Traveling Pants OR I don't ever want him to know
Current mood: weird
Category: WEEPY Life
Well dh and I watched a cheesy, learning to grow up, teenchick flick. It wasn't too bad. Romance, comedy, life lessons, death, unmentioned loss of virginity, etc.
It made me bawl. Bailey made me bawl. I don't want Levi to ever "know", to really know, to know what it's like to have cancer. I want to him to grow up and when asked, just shrug and say "Yeah I guess I was born with cancer but I don't remember." I don't want him to wonder how long he has left, to lay in a hospital bed knowing he might not see another sunrise, to wonder why he got it, to worry about drugs working or are they doing more damage or whether he'll get sick again. I want him to be INNOCENT OF CANCER!!
The movie ends, I'm weepy, I check myspace and hey I have a message. I had sent out this bulletin. Something like describe me in one word and pass it on and see what other say about you. So this is the first (and only at this point) reply I get "
STRONG!!!!!!!
I had to say it in one word, or I'd have said unbelievably, unfaultering, blessedly, inspiringly, super-strength STRONG!!! {{{{{HUGS}}}}}
"
And I just start bawling again. I don't feel strong. I am just hanging in there. Getting through each day. Loving every moment I get with my children. Trying not to take them for granted and most importantly trying to not make it seem like Levi is more important than Livie. Both children are my breath, heartbeat and soul. It is so hard to balance the concern and worry about Levi with equal attention to Livie. It's really easy to think "She'll always be here but he might not be so I have to show him more love or more attention cause ya know, I can show her that anytime." I don't consciously think that but I realize it is something I could fall into and have at times. Then I remind myself, he may never have another health issue ever, ever again and she could be taken away tomorrow. So I try to treat each child with equal love and affection and live life with them as if it's our last together. Then I find myself screaming at them to quit beating on each other, to pick up their toys. And we sit and hug and watch tv and eat and giggle and sing and I realize we are what we are and we have what we have and that's all we need.
I'm rambling.
Good night. God Bless.
