Saturday, October 31, 2009

Just one more "bump"...

This one isn't about V thank goodness, but it is about Daddy. You see daddy has a condition called peripheral neuropathy. His uber efficient doctor (not) still has NO clue as to where this has come from.
Lately in addition to his numbness and pain, he's been having bouts of breathlessness and becoming very overheated. Tonight he made an impromptu trip to WalMart for some nighttime goodies around 9pm. At 10:30pm I was getting pretty worried, and by 11:15pm when he pulled in the driveway I was darn near frantic.
Turns out he got way overheated and lost his breath so he sat down on a bench and proceeded to PASS OUT!!!
The manager and assistant manager wanted to call him an ambulance but my hard headed man rested a bit and chose to get his goodies and drive himself home!
Keep in mind we live in the middle of NOWHERE.. so if he hadn't of made it home we would be literally up a creek....


Well, outside of knocking him out myself and driving him to the ER, I'm hoping we get a good night's sleep and all is better tomorrow.

I love not having insurance....

Barring any major disaster, stay tuned for super cute halloween photos to come (picture me crossing my fingers).

Tuesday, October 27, 2009

Letters To God...

Sorry for the lapse in updates lately. To be honest I've been "experiencing" Facebook for the first time, and I've become a bit of an addict.
I can't believe how many people I have come back in contact with in the last few days...

Well, one thing that I found out today I wanted to share. When V was in Arnold Palmer Hospital during the summer they were filming a movie in the main lobby. Our wound care nurse explained that it was a movie about a child fighting cancer, a brain tumor. We sat and watched for a time and went on our way..

I never knew anything more about it until today. A friend posted a link to the movies website. It's finally finished production and is scheduled for release in early 2010. It was filmed at several locations including APH and Give Kids The World complex that houses children and their families during Make-A-Wish trips.

And unfortunately, it's based on a true story. The story of the filmmakers child Tyler. It is called "Letters To God".

PLEASE, PLEASE go check it out.. and spread the word!

Saturday, October 24, 2009

I Found IT !!!

Well, I finally found it. And I wasn't totally crazy, the reason I couldn't find it in this tiny little trailer is because it wasn't in here. That's right, I lost it somewhere else.. another 10 feet away in the truck. Go me.

Anyway, it's back. So guess what I have for you tonight ???

Pics of my little wild man Ryan, not so wild and feeling kind of rotten.

This was from earlier this week in the aftermath of the blue Cheeto craze!

And yet again little munchkin protests his time in the lockup.

Monday, October 19, 2009

Not Much... except Cheetos.

Not much is right, it's been blissfully uneventful the past few days. I would love to entertain everyone with some super cute pics of the V man, but I cannot find my camera.


How the heck you can lose a camera in a 26 ft trailer I just do not know. There's barely enough room in this thing to breathe let alone lose anything! But I guess if it can be done...

... it would happen to me :)

Hopefully our treasure hunt will produce something. I've always complained that it took crappy pictures, but at least I could take some. That'll teach me to complain, right?

When I do find it I'll have to show you all a picture of our latest find... color changing Cheetos.
They turn your mouth blue when you eat them! After a few my munchkin looks like he's pulled a dracula on a fountain pen!

AAhh, that's going to be my challenge to a certain stumpy little cutie we like to call Miss Pudge (Yes I mean you LC).
Tell your Mama to go to the store and buy you and Daddy some color changing Cheetos.

I bet that'll be some photo shoot.

Wednesday, October 14, 2009

Keep Reading.. It's a Two for One!

Well I missed my post for last night, poor little scooter slipped by the kitchen table and bit down on his tongue. Hard.

There was blood EVERYWHERE. It took quite a while to get him calmed down and cleaned up.
A futile measure really. Every time I looked over at him for about the next three hours his mouth was oozing blood.. ugh.

It's tough to deal with a cut in the tongue. Holding pressure sure is hard, and keeping little fingers out afterward is down right impossible.

Daddy finally figured out a way to pucker him up and get the bleeding to stop. He sprayed his tongue with sour spray candy. Even I was impressed.

He's alot better today, although his tongue still looks pretty gross when he sticks it out. But at least it isn't bothering him much anymore.
Lacey from Jaxson's Fight tagged me the other day to tell how my kids got their names so here you go :

My oldest William Lee, is now 16. When we first found out I was pregnant we never really talked much about girl names. I don't know why, but we had settled very quickly on the name Justin. When my ultrasound confirmed a boy, we were very excited. That evening we decided to tell my ex-husband's family about our "boy" when his Mom called to tell us that his grandfather had been taken to the hospital after suffering a stroke at home. They weren't sure he was going to make it. We rushed to the ER just in time to say goodbye. We never even got to tell him our news. His grandparents had raised him, and his loss hit him hard. That evening he asked me if we could name the baby after his grandpa "Bill", William.
As far as the Lee, that was for my ex-husband's middle name.

Our next son was obviously going to be our Justin. He's now 13.
His middle name is also Lee. My Mom used to joke that we just weren't all that creative, but really it's because my Dad's middle name is Lee too.

Now on to my younger set...

Ryan Thomas was my third boy, he's now 5 (almost 6) and Daddy came up with his first name. It was from one of his favorite radio DJ's children. His son's were named Ryan and Gage.
Thomas was my idea, I had always loved the name Thomas. Don't really know from where. Maybe all the Magnum PI episodes my older brothers made me watch as a kid.. "Thomas Magnum". That's the only Thomas I ever really knew of. Good looking, charismatic, what wasn't to like? Ryan Thomas just seemed to flow.

Now Vincentio, that's a whole other story. We could NOT think of a name for this kid. We couldn't agree on anything. Daddy is half Hawaiian and half Italian so we started looking through name books. His oldest daughter had been given a Hawaiian name, Kalei (pronounced kah-lay) so we thought that the youngest should have an ethnic name as well. We looked through half a dozen Hawaiian name books and just couldn't find anything we could agree on and the male Hawaiian names in his family are VERY hard to pronounce so we didn't want to go there.
We started looking at Italian names on the internet when I went into premature labor. Two days after he was born we were still looking (ha). With all the hubbub going on with his DS and heart diagnosis, my older boys took on the task of looking for a name.
On the third day after he was born, my boys called me at the hospital and announced that they had found the name Vincentio on an Italian name website.
It is a derivative of Vincent, the conqueror. It sounded exactly like the strong name our little munchkin needed. As for his middle name Albert, that is for Daddy's grandfather who raised him and my paternal grandfather who died when I was young. The only one of my grandparents I was ever really close to.

Tuesday, October 13, 2009

Flying High...

She has gone home ...

Early this morning, at 3:50am Jessica Easley took her final, painful breath on this earth.

She did get her final wish, to go to Heaven at 11 years old! Yes, she departed this life on the very day, 11 years ago, that she entered it.

She is free now. Running and playing with 2 legs, 2 healthy lungs.

The only consolation in this terrible thing is that along with her earthly body, so died the beast.
It has lost. It causes her no more fear, no more pain. It can't take any more.

Oh how I wish there were something besides death that could have conquered this.


Thank you all so much for your kind words and for putting up with my ranting of late.

It's difficult in these situations not to climb up high and scream it from the rooftops!

The saddest part is that it is not over. So many more of our friends will meet the same fate I'm afraid. And when they do, there will be no doubt in anyone's mind of how it makes me feel.

Thank you all again.

Just to pass along the information, Jessica will have visitation on October 15,2009.. burial will take place on the 16th.

Her procession will consist of one final motorcycle ride through town before she is laid to rest that afternoon. I can only imagine the huge smile she'll have from up above. She did specifically request that all in attendance wear bright, cheerful colors. No black unless you're wearing biker leather!

For the rest of her "celebration of life" plans please see her caringbridge site.

You all are the best.

P.S. I'll post later tonight with some more from the little skitterbug! He's had a busy day.

Monday, October 12, 2009

Just to clarify..

I'm a little calmer now than I was earlier. Just to let you all know, Jessica is still hanging on.

I don't want anyone to think that I have any contempt for "pink" ribbons. Breast cancer is a killer. It deserves awareness and funding. It deserves every bit of the attention it gets.

The Susan G Komen foundation has made incredible strides in their fight for women's health.

It's just incredibly maddening that our children, OUR CHILDREN.. cannot get the same.

People don't understand how insidious cancer in children can be. How such a monster of destruction can grow inside of such an innocent being. It spares no one.

Most childhood cancers are very unlike cancer in adults. It cannot be treated with the same drugs used in adults in most cases, and when a child with cancer relapses the survival rate can drop from 90% (for common forms of ALL) to a mere 10%. When it comes back, it comes back with a vengeance. A child in remision is not considered "cured" for years, so the possibility of relapse is astronomical.

There are some forms of childhood cancer that start out with survival rates of only 5%, those tend to be the "rare" cancers, like ATRT (brain tumor). So rare, and we've already lost more friends to that particular "rarity" this year than I can count on both hands. It's unbelievable.

Then there are cancers like Jessica's ARMS (soft tissue cancer). She has fought this beast for over 3 years, been in remission twice, and with every relapse the cancer seems to "outsmart" the drugs. This is unfortunately very common in many forms of childhood cancer. The beast learns to adapt and change so it lives despite the toxic chemicals that are designed to kill it. Even one cell remaining after treatment can grow an army of new, "smarter" killers.

This is why we need more funding, new drugs. In Jessica's case, she has tried all the chemo drugs. None of them work anymore, and there is nothing left to fight with. No new drug that she hasn't tried yet to kill this beast. There's nothing.

What are you supposed to do when the doctor says there's nothing left they can try???

You take your child home.
You do your best to help control their pain and fear as the beast takes over their body, robbing them of the most basic of functions.
You spend time trying to explain Heaven to your child and hope they are not afraid.
You try to make enough memories to last the rest of YOUR life without them, like that's even possible.
You help your baby to die with some sense of dignity and peace, as the beast tries it's hardest to rob them of it.

What the hell??? Ok, maybe not much calmer.

I want to see as many gold ribbons as pink. Our children deserve it.

Spread the word.

Consider this your "fair warning"...

Damn it!!! It's not fair.

She's 10 yars old, and she can't move. Since Saturday she can no longer move AT ALL. She can barely breathe, she can't open her eyes or speak. She can't even squeeze her Mom's hand anymore.

She can cry. When she is touched or moved for any reason, she can cry from the pain.

When her family tells her that it's OK to let go, to be with Jesus, she can cry.

Where is God's plan in all of this? Don't get me wrong, I am still a believer, but it's just so hard to understand how this is possible.

Where is God's mercy?

There are pink ribbons everywhere for breast cancer, as there should be, it's a horrible disease.

Where are the gold ribbons for our children ???

.. 46 children are diagnosed with cancer EVERY DAY.
.. it is the #1 killer of children, more than cystic fibrosis, AIDS, and genetic anomalies combined.
..EVERY NIGHT, 7 children fighting this beast will not live to see the next day. has been 20 YEARS!!! since a new drug was approved to fight childhood cancer.

Why don't more people seem to care ???

Where is their hope for a cure ???

Sunday, October 11, 2009

The Time Is Near...

Sweet Jessica is still here, for now.
Her Mom, Teresa, feels strongly that besides the love she has for her family, that the one thing keeping Jessica here is the fact that she desperately wants to see her 11th birthday.

That day is still three days away.. it might as well be a million....

Teresa cannot stand to see Jessica suffer any longer. In her weakened state, Jessica is a bit confused when she is awake. With the huge amount of pain meds she is on, it's amazing that she can be awake at all.

Yesterday Teresa decided that Jessica's birthday can't wait any longer. Her baby deserves to be free.

So they decided that yesterday, Saturday 10/10/2009 would be Jessica's "birthday".
They knew that she would never be able to eat a birthday cake. She can no longer swallow due to the tumors in her neck. But how could she not have one?

So they asked her what kind she wanted, carrot or chocolate. With a huge smile, Jessica ordered the chocolate birthday cake.

"Chocolate".. is the last word she spoke.

Since then she has been relatively comatose. She does sigh and make sound now and then, but her pain seems controlled so she sleeps peacefully for now.

The whole family is beyond in shock that this may be the end. Jessica has fought so hard for so many years, no one can believe it's really about to be over. The fight for her life has really ended. Now the fight is for her to gain a beautiful set of wings. To fly free.

I will post more when I know. For now please pray for this child to have a peaceful journey.

Saturday, October 10, 2009

Taking Flight

I do hate these posts.. never quite sure how to begin, just have to go for it I guess.

This one if for sweet Jessica Easley. I have posted about Jessica several times over the past month. Last time, a couple of weeks ago, they didn't think she would be with us much longer.
But true to fashion, Jessica still fights. Fighting to live, fighting for her angel wings.

Mom says her favorite saying is "i'm a rule maker, and a rule breaker". She's one tough 10 year old.

These past few days have been very hard. Jessica has been totally bedridden and unable to move her body for weeks now, but in the past few days the beast has grown drastically. The tumors in her chest and neck have begun to expand rapidly and spread upward into her face.
She has developed immense swelling in her face and throat. Although she is now on oxygen continuously, breathing is a fulltime struggle. Her fear of suffocation continues to be a constant.

She has been sleeping much of the time, when she is awake and lucid she is still giving Mom instructions about how she wants her celebration of life to be carried out. She is hoping to make it another few days to her 11th birthday. She says her one true wish, other than to die in her sleep, is to go to Heaven at 11 years old, not 10.


How on earth can there not be anything left to fight with for these precious babies?
How can we possibly be forced to stand by and do nothing but watch as the beast overtakes this child and devours her?
Where's the sense in the fact that it's been 20 YEARS since a new drug was approved to fight childhood cancer?

When we all tuck our children into bed tonight and give thanks to the Almighty for their health and safety, please remember that Jessica is fighting still..

..and that there are seven other children fighting the beast somewhere tonight that won't live to see the sunrise. And as those children end their fight on this earth, tomorrow, 46 more children will just be beginning the fight.

Spread the word.

Thursday, October 8, 2009

So I have an issue.. imagine that.


So my naughty little skitterbug is now 4 years old. Holy crap.

Last year after his 3rd birthday he officially "transitioned" from the Early Steps birth to three program to "schoolage"... scary.

We did alot of research into looking for the best fit for him in a pre k program. The local mainstream elementary school was our first option. Considering V's collection of special medical issues, along with the need for tube feeding, he needed to be placed into a "special needs" classroom. No shocker there.
The teacher was a lovely older woman who was immediately taken with my boy. She did comment on the fact that the special needs class was for kids from 3 to 5 years old, and they had never handled a child of his tiny size or with his extensive medical issues. At that point he still was not even walking yet. She admitted that he would require quite a bit of extra attention not only for teaching but to keep him safe in a classroom of typically sized children. He was not mobile to where he could participate in most class activities or even on the playground. He still didn't even have meaningful speech. She did say that she would be willing herself to make whatever accomodations were neccesary for him, but she would not be teaching the class after the start of the next year. She was retiring. The new teacher was younger than she, and new to the special education teaching position.

One option OUT.

The next and final option was our local "Easter Seals" school. I was excited about the possibilities there because my older brother, who was born with cerebral palsy had attended the ES pre school program when he was a child. He made amazing strides there.
When we first toured the facility we were very impressed with the staff. They were friendly and accomodating. They thought V would do very well in their program.
The only problem was that their 3 year old class was comprized of a group of walking, talking toddlers who dwarfed my tiny munchkin in size and ability. The head of placement thought he would fare better in the 2 year old class. It was understandable, but the 2 year old class was not a pre k class. It was more of a daycare with a therapeutic edge. Not bad, but not what we were hoping for.

You see, cognitively, V was far ahead of his physical ability. We didn't want his mind stunted by being placed in a room where he would do nothing but sit and play on a rug for 3 1/2 hours a day. He could do that at home for free.

Still, everyone felt he needed to make the move from home based intervention to a school setting so we went for it and hoped for the best. It took weeks of testing and paperwork, doctors orders and medical approvals, but we did it. And so began his first year of pre k.
The first week was rough. His room was cold, a problem with the air system, so we were asked to dress him warmly. Still, every time I picked him up he was a teeny tiny popsicle.
The second week he began to get low grade fevers and was sent home on two occasions.
By the third week they were asking us to keep him home if he even sniffled because of his medical history, and by the fourth week the school nurse called me at home and stated that perhaps he was not ready physically (immunity wise) to be in a group setting.
So ended our pre k experience. The head of the school gave me the necessary paperwork to apply for home schooling based on medical need, but before I could submit them to the school board for approval, the whole G tube nightmare began.
In and out of the hospital, infections and fevers galore. Definitely not acceptable for school visits, even at home.
Since then he's had to miss an extensive amount of therapy as well since he just wasn't able to participate in a care setting, and home visits, given our housing situation, are not optimal.. or popular with the local therapy providers.

Finally, over the past month he has begun to blossom once again, and I am attempting to find available therapy to get him restarted. He should be receiving 60 minutes per week of PT/OT and speech. Hopefully that will be up and running soon.

Now I am left with the pre k issue.

I'm not super excited about returning to the Easter Seals school again. I really don't know that his immune system is any more ready than it was last year, and with the flu craze.. don't really wanna go there. But this year and next he will still need pre k services before he can start kindergarten.
He is definitely mobile now, he started walking earlier this year. Not yet very steady, but he's getting there slowly. He still does not have meaningful speech for communication. He does sign some, but most of his interaction is because WE understand what his sounds and signs mean.

He is also still VERY small. He wears 12 month pants and 24 month shirts. Little butt, big belly :) Not even close to his school age counterparts.

All this combined with his other medical history makes a Mommy worry.

Does anyone have any helpful advise? To homeschool or not to homeschool?
What would/did you choose for your child???


Tuesday, October 6, 2009

Yes, I'm a slacker.

As you all know by now, this is Down Syndrome Awareness Month.
Many of our blogging friends are participating in the 31 for 21 this month to expose the beauty and wonder of our loved one's with Ds.

I would be participating myself if I weren't so busy chasing after my loved one with Ds.
Yep, the V man has been running us all ragged since he's healed up so nicely from his last surgery. He's into everything. Destruction on wheels.

I couldn't be happier honestly. As tired as it makes me, I still remember those days when Ms. Sue (our PT) couldn't even get him to bear weight on his legs without a shrieking chorus of displeasure.

Now, I have to resort to the "baby jail" on occasion just to brush my teeth without a major disaster.. ha!

Even his every six hour med doses are only short pit stops and a quick raise of his shirt to "shoot the button" as Daddy calls it. It's sooo nice with this new site, it works right and since there's no pain involved, he readily allows me access without any meltdowns.

Well, that's the breakdown, the runchkin is kickin my butt.

Just spending my days trying to keep up.. and enjoying the healthy while we have it.

Saturday, October 3, 2009

A quick PLEASE for all our friends.

Please, please, please.. if you have knees, now's the time to use them.

Our friend Jessica Easley, the 10 year old girl I wrote about before is nearing the end of her journey.

Jessica has been fighting alveolar rhabdomyosarcoma for the past 3 years. When she was 7, she lost her leg to the beast. After a brief remission she relapsed in her lungs. She fought unbelievably hard and achieved a second remission soon after.

Then only last month she confided in her Mom that she believed her cancer had returned.
Her heart hurt her, all the time. Mom tried hard to think she was wrong. Nothing else to go on.

Until.. a few weeks ago Jessica came down with a "cold" that caused fluid in her lungs.
A trip to the ER revealed that the beast has returned, with a vengeance. This time it was in her spine and her thoracic cavity wrapped around her aeorta.. near her heart.

Within days she was deemed "terminal" and was allowed to go home on hospice. Even for her young age, she's fought the beast so hard that she's exhausted her lifetime allowance of chemo and radiation. How does something like that happen to a 10 year old? For the last couple of weeks Jessica has been confined to a hospital bed in her living room and unable to move due to the intense pain the tumors are causing as they destroy her from within. Her spirits have remained high throughout this horrible time. A testament to the fight within her.

Her Mom says she has been diligently working on her "celebration of life" that is to come. She's been trying to strengthen her family so that they will be able to go on without her as she tries to prepare herself for Heaven. How does a kid do that?

Today, Jessica has taken a turn, her breathing is difficult. The beast has distorted her chest and is crowding her heart and lungs. One particularly nasty tumor invading her neck is impeding on her airway. She is terrified that she will suffocate.

They don't believe she has much time left with us and they are praying that Jessica gets her most important wish. To die peacefully in her sleep, without pain. A wish that up until now she's been denied.

She's only 10 years old. It's not fair.


Sorry for the lack of updates lately. It's not that there's any less happening around here, it's just been super exhausting.

Mainly V has been stable lately. He recovered well from the flu, thank goodness. I still have yet to get any photographic lovelies of his new improved belly but I haven't forgotten.

This past week Ryan has been our main area of worry. Ryan is five, almost six (Nov.2)..

(shameless birthday plug).

He got the flu also this past week but usually he's an extremely healthy kid.

For a few weeks before the flu though, we noticed a worsening nighttime cough.

Not a dry, asthma like cough, but a sort of junky sounding cough.

During the days he was pretty much his normal self so I figured it would pass.

Then the flu came.. and went, and the cough is still there. A little worse actually.

Now it's increasing a bit in the daytime and he's been much more sleepy.

.. and grumpy.

Now, keep in mind that Ryan is the type you have to promise gifts to, or threaten bodily harm to get him into bed at night. And the last few weeks he's ready for bed by 7pm.

Now the last week he's been falling asleep on the way home from school and sleeping right through dinner.

Decidedly NOT normal.

We're going to see how he is this weekend and we may be making another visit to our friendly neighborhood pediatrician.

Mucinex, Claritin and breathing treatments are helping the cough some, but not enough (Ryan has never needed breathing treatments). And this sleepy thing has thrown me for a loop.
I've already done the nervous Mommy check over. No skin rashes or lumps and bumps that I can find, and when he is up and awake he seems alright for the most part. Except for the overly grumpiness and cough. No fevers since the flu made it's leave.

So, send healthy vibes if ya got em', and hopefully we'll be back to our crazy selves soon.