It's Scheduled

Vincentio's surgery has been scheduled. It's going to happen on Wednesday September 2nd.
He's going to have his GJ tube removed and the stoma will be surgically closed, since we all know that bugger won't close on it's own.
Then Dr.P will find an appropriate site to place a new stoma for a new G tube. If all goes as planned this site should heal normally and we will be able to return to gastric feedings.

Now this isn't going to be a simple process. I was hoping maybe they could do it laparascopically, but that isn't the case.
Dr.P will be opening his belly going back through the lower part of his diaphragmatic hernia repair scar. This will be the second time that this area has been reopened. He does feel that it's safer all around if he does it as an open procedure given V's history for having some tricky anatomy.

The healing will take longer for sure, he'll have to stay in the hospital for at least a couple of days, but if it works, we'll manage.
The folks at Arnold Palmer have always been wonderful to V. They are so on top of pain control and making sure he's comfy and happy all around. I have to say I really trust these people.

Still, I have to admit, I'll be crossing my fingers the whole way. We can use all the luck we can get.

P.S. Sorry I haven't posted any school pics.. to say the least it's been a "traumatic" week for Ryan. He's s l o w l y coming around to the idea so maybe I can get some happy face pictures soon. I hope.

He's Not a Baby Anymore

Oh I know he's ready, it's just that I don't think I am.
My six year old bundle of energy, Ryan, started kindergarten today.
I've known for some time now that he REALLY needed something more. School's been a callin' for months. He needs the extra stimulation, his little mind is more than ready. But today wasn't easy. He was crying when we left him in the classroom and he was crying when we picked him up after school.

*ugh*

I hope tomorrow is better. I would have some super sentimental "first day" pictures, but he wouldn't let go of me long enough to get any.

Guess I'm gonna have to try for some "second day" pics.

I know it'll get better. I know eventually he'll run off from the car without even looking back, and when he does I'll long for these days.

Don't wanna bring the post down, just please say a prayer for all those out there who's babies, excuse me, big kids, aren't boo hooing their way through the first day of school.
Because they are in Heaven, or on treatment, or just too fragile to share a classroom.

In many ways it's a tough day for us Mom's.

(I'll try to get some ultra cute, non boo hooing pics of my big boy tomorrow).

Decisions...

To update on my previous post, Annette had a fairly quiet day today. Her parents, Natalie and Kirk, have had some unimaginable decisions to make in a very short time.

They have traveled this road before. They know cancer and it's ferocity.
They have seen one child consumed by the beast already. Now Annette.

Sweet, precious Annette is heading toward home soon. Later this week her parents will be bringing her home on hospice. They feel that they have done everything possible to save her life, and unfortunately, fate has made a choice for them that no parent should ever have to make.

The painful truth is that Annette is dying.

What her family wants at this point more than anything is to allow her to live out the remainder of her young life at home, comfortable, and surrounded by those who love her the most.

They have decided to go home with Annette and in her final moments among them, create their own miracle. The kind that can only come from the strongest of loves.

I simply cannot imagine anything in this world that could be worse than what they are facing at this very moment.

No parent should ever have to bury their child... http://www.maxeyweb.com/

The Maxey Family

As much a it hurts to ask, I must request prayers and love once again for a family in crisis.
Little Annette is not yet a year old, but for most of her life she has been battling an insidious brain cancer called AT/RT (atypical teratoid rhabdoid tumor). The cure rate for this type of tumor in children is often less than 5%.
Annette's family attacked this cancer full force, with every option available to save her.
This is all too familiar for them, five years ago yesterday (August 21,2004) they were forced to say goodbye to their first daughter Madeline. She also fought and lost her battle with rhabdoid cancer. Madeline also lived for only a year.
After Annette's diagnosis her parents underwent genetic testing and found that there is a genetic link to this type of cancer. Fortunately, their older son Grant did not inherit the gene.
However, Annette has been massively attacked by this monster. Recently, after another round of radation and chemo Annette stopped responding and had difficulty breathing. It was found that she suffered swelling in her brain caused by the very medicines that were meant to help save her life.
After weeks of searching for options to reverse this damage, yesterday, on the five year anniversary of Madeline's death, they were told that Annette has virtually no brain activity.
They do not believe this to be reversible.
Annette's family has endured more than any family ever should. They are rightfully devastated.
Please visit them and their precious baby girl (at www. Maxeyweb.com) and offer some love.
They can use all the prayers we can give.
They deserve a miracle.
cancer sucks.

Bliss, I tell you.. absolute bliss.

I've never really posted about it, I guess because it's never been a blogland issue. But the fact of the matter is that after V was born I had to leave my job, we had no family capable of helping with childcare, and daycare germs were a definite no no.
So, after he was born, living on one income, we moved from our spacious 3 bedroom 2 bath home into an apartment. It was an adjustment, but we made it.
Then, thanks to an unforgiving economy, Carmen lost his job of 10 years and we were forced to give up the apartment.
Ever since then we have been existing, as a family of 8, in a 26 foot motor home.
Not exactly what one dreams of as they grow older in life, but better than a tent in someone's backyard, right?

(I try to look on the bright side and remember how many people nowadays really ARE living in tents, and worse)

Needless to say, between all of us and all of Vincentio's medical equipment, things get a bit cramped and more than a bit noisy around here.
But right now, at 12:38 am, everyone (except the dog) is sleeping peacefully.
I have to say that as much as I love the bustle of my children's lives, THIS is bliss.
Sheer and absolute quiet. Doing not a single solitary thing other than making the perfect cup of coffee to enjoy in my perfect quiet little house.

... and dreaming of the day that my "perfect quiet little house" won't be on wheels anymore.

sweet dreams :)

The Ties That Bind...

I've recently read some very heartfelt posts that my blogging friends have written regarding their connections to the Down Syndrome community.

For those of you who have read my most recent posts (ok, novels) about Vincentio's story, you know most of it already.

Still, I felt as though I needed to add a post to the topic.

You already know how V entered our lives.. with a bang.

We had no idea that he had DS, or any other congenital issue for that matter.

We were blessed from the very start that he was born in a hospital that was equipped to handle his delicate heart. They were so very supportive. Too much sometimes, every time I thought I had it together, they made me cry all over again.

The strange thing was that I wasn't crying because my son had Down Syndrome.

I was crying because I was scared to death that he might die.

You see, V was a preemie. Tiny and frail. His heart was damaged, his lungs were damaged. Something wasn't right with his blood.

The people that surrounded us those first hours, days, weeks, were amazing folks indeed.

They kept him alive, they kept us going, they gave us hope.

But somehow it always came back around to "how are you adjusting?"

Don't get me wrong, I was grateful for their consern and caring. It's just that I wasn't worried about how he was going to grow up and how we were going to deal with raising a child with Down Syndrome.

I was worried about whether or not he would live at all.

I was worried that I would never GET the chance to raise my child with Down Syndrome.

I guess the fact that he was so sick from the beginning gave me a different perspective.

I specifically remember a day when I sat in the NICU trying and failing once again to feed my son. Asking the nurse to hook up the feeding to his NG because it just wasn't happening. I felt defeated in that moment. Like there were just too many obstacles. That maybe it was just too much.

As I sat there, rocking V, a group of doctors came to give discharge instructions to a young couple a few beds down. I remember that they were very young. 19 or 20 maybe. This boy was there first child. He was big, much bigger than most of the babies in the unit. I could never quite understand why he was there at all. He seemed so normal.

The docs stood there, counseling the parents on how there son's care would work once he was discharged. Turns out he had Cystic Fibrosis. He would require weekly clinic visits, multiple daily meds and therapy. They told this young couple that it was in their best interest to not have any more children, that CF was genetic and they could pass it on. That more than likely he would, due to the severity in his case, be hospitalized often. More than likely he would need a double lung transplant within 3 to 5 years, and even then he would only live into his 20's.. if he was lucky.

How's that for a kick in the teeth. Your first and only child is going to live a miserable life and then die way too young.

I decided then and there that I could live with Down Syndrome.

Not only live with it, but be absolutely grateful for it.

If they could fix his heart, heal his lungs, make him well.. all the rest was cake.

Down Syndrome wasn't just something I could live with.

Most importantly, it was something that HE could live with.

That was all that mattered, that's all that has ever mattered.

We Were So Close

So Dr.B (GI) and I spoke about a week ago. He was interested in my opinion as to whether I felt that V's stoma would tighten up around the GJ tube. Ultimately he wants to get him back on gastric feeds like before.

I told him that V is definitely putting on weight which is great. That was a major struggle up till now. His skin is also looking better than it has in months.

However... that naughty stoma just WILL NOT seem to close.

In my opinion, I think that he is going to need a surgical revision. This stoma is not going to close. So if it's going to have to happen, we might as well get it done while he's healthy and infection free. He agreed and told me to call Dr.P (surgeon) to get him scheduled.

We have a consult scheduled for August 24th to get the surgery scheduled.

Then this morning... "IT" happened.

For once the kids slept in, I was in bliss. My five year old, Ryan woke me up around 9:45am because he wanted breakfast.

I got up to fix it and when I walked by V's bed I saw it. Bile, soaked all into his shirt.

At first I cursed the old standby, the med port. It must have opened when he rolled over.

But the med port was closed.

Wait a minute.. this tubing is way longer than it should be... Aaaahhhh!

The whole stinking button, J tube and all was pulled out and curled inside his onesie!

... OH ... MY ...GOD!

So we made it to the ER at about 12:30pm.

He was in the OR by 2:45pm.

We were on our way home by 5:00pm.

Not too bad, we made it home in time for Sunday dinner. If nothing else good came out of today, surgery was able to get a hold of a shorter GJ this time so he has one in that actually fits now.

We were so close. So close to getting this resolved without any real drama.

That would have been a first. Oh well, what would our lives be like with no drama?