Good News/Bad News.....

I haven't written much in a few weeks. Life has been busy & a bit difficult. But in the end, I know in my heart it is all going to be ok.

The last few years with Paige have been good & on the quiet side. Her walking is really good. She was up to running...in her own way. She has graduated from PreK. In September she will be in kindergarten. She is a loving, happy little girl. We push her physically & mentally....she just keeps on trying & smiling.

But the last few weeks, this is where it has been difficult. It can make you realize, that things happen for a reason. Paige's physical therapist has wanted me to take her to an orthopedist at A.I. Dupont in Delaware. I had to wait over 6 months for an appointment. We saw Dr. Miller this past February. He had us take her for a Gait Analysis. This is a 3 hours test were the child is hooked up to a computer, they take measures & test flexibility. The techs can see how your child is walking, what muscles are doing what, at each step she takes. It is amazing!

When that report came back, an MRI was ordered. Plus I was eligible for a large size stroller.
I took Paige for the stroller evaluation. It is a stroller/wheelchair. That was hard. Seeing my daughter in a stroller/wheelchair. We need it desperately, she is a tall & heavy child. She is getting tired walking any distance. And the falling down on the ground ever few steps is constant.
The falling down was becoming less & less.....now we are watching our little girl deteriorate at a rapid pace. My husband Doug & I are having a hard time watching this happen. We worry that she is going to get hurt, and the frustration of not being able to help her. Paige is also complaining that her left foot hurts. She is starting to crawl around the house, because she is tired of falling too.

The MRI.....I am happy to say her spinal cord is not tethered, there is no tumor or cancer. What Paige has is a cyst. The cyst, is either in the spinal cord or a pocket running down her spinal cord. I am not sure. What it is doing, is filling with fluid & pressing the spinal cord against her vertebrae. This is what is causing the loss of her motor functions.

The next step is taking her to see a neurosurgeon on June 8th 2007. We will be able to talk to a doctor in person & asked all the questions that we have. We can also find out what options we have to fix the problem. Dr. Miller when he called, gave me the test results. He told me there are only 2 options. Watch it for 6 months & do another MRI or put in a drain. Putting in a drain or what is referred to as a shunt seems to be a last resort I am told. The shunt is not perfect. The shunt is commonly used in children with hydrocephalus. But they can get clogged or kinked. The child would then have to have another operation to replace it. It is an on going fix.

I wonder if there is a possibility of removing it, without doing damage to the spinal cord itself?
I also wonder if this pressure on the spinal cord is going to cause unreversible damage?

I wonder if I can beg someone at Aetna to push the allowance through on the stroller. I need it now...not 4 months from now. This is how long it can take for the insurance to "OK" the payment.

The Exploding DoDo Bag

So my first few weeks in the joys of motherhood are like a little slice of hell. But not going to get me down. I am going to be strong & remain positive. I am also going to get my mother to bring danish over.

At about 12 weeks old Paige's doctor suggests that we give her a colostomy bag. I argue to not break what isn't broken. I have a hard time of knowing doctors are cutting into my baby tender flesh. I mean come one...she is so little & precious. I have got to protector her.

But I sign the papers & set up a date for the operation. I know in my heart this doctor is right.
I have to be strong & make the right decision for her. My mom is with me this trip. My husband is at work. I don't know if he realizes what condition our daughter is in. I at this point don't really understand or know either.

When the doctors explain all this medical stuff....I just shake my head & pretend to know what they are talking about. Later I go home & google all the big words. I don't want the doctors to know what a noob I really am.

So we go to surgery. Basically what they do is take part of her colon, snip it in half. Drop one part back into her body & sew the other part so it is just sitting at the top of her skin (a stoma). When she poops the waste will fill up in a bag attached to her body.

Ok that doesn't sound too nasty. The part that sucks.....are the damn bags.
The bags are held onto the body with sticky. You have to cut a hole into the sticky just big enough to go around the stoma. But if you cut to hard through the sticky part you cut the bag. So my husband, made a template to slide up into the bag so he had somewhere to lean on & not cut through the bag when using an Xacto knife to make the openings for me.
If the hole is to big, then the fluids that come out of the stoma are very acidic & eat the flesh/ glue away from your child's body. This is so much fun.....can't you tell?

The other end of the bag is done like the old chip ahoy bags....they roll up & have a twist tie that you fold back on either edge. When you baby fills the bag....which is during the day & night....you have to empty the bag, into something & dispose of it. It is not like you can just keep putting on a new bag when needed. There are only 15 bags in a box. The insurance company feels they should last you a month. The cost for the bags is about $55.00.

This is where I fight with the insurance company & feel some gratification, when I win this battle. I get them to agree to letting me have 2 boxes per month for my daughter...Yipppeeee!

Now here is the kicker with the bags.....my child has a lot of gas. So the bag fills up like a balloon. And if you do not let the gas out of the bag, it pops off. So the waste just runs out.
Does it get everywhere...and it stains!

And this waste does not smell like normal baby poop. It smells like a sewer backed up somewhere. It is really nasty.
Just take it from my experience....do not let the gas out of the bag in a crowded diner down the New Jersey Shore.
I cleared the dining room that day.....got to grab my fun when I can get it....^_^

Paige

I have a wonderful daughter. Her name is Paige. She was born July 5, 2002.
My life has been rough the last 5 years. I started this page to get stuff off my mind & free up some space to go on. I guess I have hit a wall. I am tired & frustrated.

I guess I should just start with a few weeks before July 5, 2002. I was enormous. My belly was soooo big I looked like I was carrying triplets. But just one baby, a little girl, my second child.

Paige arrives at 36 weeks. Her skin tone is very blue & purple to the eye. She doesn't pink up quickly like my son did.
I start asking what is wrong with her. Little do I know that my life will change dramatically in the next few hours. I found out Paige was born with something called Vaters Syndrome. Here is a definition.....The initials in V.A.T.E.R. syndrome refer to five different areas in which a child may have abnormalities: Vertebrae, Anus, Trachea, Esophagus, and Renal (kidneys). There may also be cardiac and limb conditions, which changes the acronym to V.A.C.T.E.R.L. A child diagnosed with one of these syndromes will not necessarily have a problem in every area, but a constellation of birth defects involving many of the areas.

Paige receives her first of four operations before she is 24 hours old. Her esophagus is still attached to her lung. But it is long enough to be pulled down to her stomach. Before she is 48 hours old, we receive a call in the wee hours of the morning to come to the hospital right away. She has been in cardiac arrest for a hour an hour & the doctors do not know why. They are about to call her time of death. My husband & I make the 45 minute trip in about 20 minutes. All I can remember on that car ride is me telling God not to take her. I would do whatever was needed. I wasn't going to blame anyone or ask why me? My husband & I can't even speak to each other....we are trying to keep ourselves together.

At the hospital we find out the cause of the cardiac arrest. Her IV moved & caused fluid to build up around her heart, causing it to stop. Doctors do not know what damaged has been caused during this episode. Before we get to bring her home at 12 days old, they do all kinds of testing. Her brain mass & brain waves are abnormal. They do not know what the future holds for her.

I am taught by her team of doctors how to dilate the fistula that is open underneath her vaginal opening. This needs to be stretched so in a few months they can close it & move it to were her anal opening should have been. My husband will not do it. So this is left up to me to handle. I learn & do it for the next 5 months.

We feel very lucky. She is going home, she is beautiful & alive. We read about the syndrome on the internet. I join one of those groups for parents with Vaters children. I read the stories of the children who are born so much worse off then my child. I quit the group. I cannot type that my daughter is alive & doing well. I am lucky, I got to take mine home. So many others are not so lucky.

I am tired. We have a baby, she has colic, she cries constantly her bowels are so acidic it is eating the skin off her girl parts. I have a 2 1/2 year old little boy that doesn't understand what is going on. My husband is the bread winner. My mom comes over after work so I can shower, cook dinner or take a turn rocking the baby. Paige doesn't sleep more than 2 hours at a time. When she urinates it burns the raw skin in her diaper. No cream can help this. When you have to clean her she screams in pain, using just warm water wash clothes. When you touch the delicate skin it just bleeds.

For 4 weeks we try & find a formula that doesn't make Paige gassy or constipated. Finally, a formula that works! The only problem, it is $30.00 a can. I need 6 cans a week to feed her. I can get it discounted if I buy it through the company. $99.00 a week in formula is a lot of money. Money is flying out the door between co pays, diapers, formula, medicine, gas & parking at the hospital. I try to get some help from the hospital...there has to be some kind of program that can help us.

I found out that we are eligible for none. I call our health insurance....maybe they can cover the cost. Or at least help. I am told that if it was medically necessary for her to have this formula they could pay for it. I tell the person, this is what's keeping her alive. It is her only source of nutrition. My daughter cannot tolerate any other formula. Bottom line, if she had a feeding tube, they would cover the cost of the formula.

Alright....this is what I learn the first few weeks.
So if my child had a feeding tube, I would have help. Yes
If I wasn't married, I could get help. Yes
If I lie & say I am separated from my husband I would get some kind of assistance. Yes
If my husband did not have a job I could get some kind of assistance. Yes

My daughter is not mentally or visually handicapped, so she is not eligible for any state or federal assistance. Yes...again

I speak English & was born in the United States. I am not any type of minority...does fat count?

Ok so besides being a wife & mother, I am now my daughter's advocate.