Wednesday, February 24, 2010

The Dr has said the word

CP! Yep, Cerebral Palsy. I knew that it was coming. It's harder to actually hear it though. Kenny is showing definate signs that is leading the Neonatologist in the direction that she feels that she can say that he has it. The reports that will be sent out will say that he has it. This will help to speed up the referal process' due to now having more of a diagonis. It still hurts. I am optimistic, but real. No mother wants to EVER hear that something that is wrong with her child. I guess that I'm becoming numb to it because it seems that all of my kids have "something" wrong with them...minus Courtney...so far that is. Who know's, maybe she'll be my ADD child just so I can say "oh ya, one of my kids has that". I guess I fear that sometimes people will think that I'm joking when I say "ya one of my kids has this and the other has that" That people may think that it's an attention thing, or an out right lie! It's not, and I know that, and that's all that matter's to me right now. As far as to what degree of CP that Kenny will exibit is all relitive to each individual child. And how they learn and how they are intervened. No one will be able to say, he won't walk, or crawl, or move his hands in functional manner's until he's a bit older. It truely makes it hard to enjoy the baby stage because you want them to grow up so quickly so you can see what the challenge will equate to! It is a diagnosis. It doesn't change who Kenny was this morning to this afternoon after the "label" was given. He's still my baby. I love him with all of my heart. I will shed tears for him and what he has to work through. I may have to just be strong for now until he's older, and then I can be weak then when he's independant. I am greatful that I have my children. All of them. I would NEVER trade them in for anyone else's child or anything in the world. I would never have done anything differently. I pray that his Visual Impairment appointment goes well on Monday. I'm really at this point not too optimistic. I think that I'm preparing myself for the worst with that. I don't know why, I think that I just feel that way in my heart. I just think that this household has been given almost every challenge out there that needs to be. We have great friends around us that are sooo supportive. We have great early intervetionists that have been great to throw things our way to support all of my kids. We have great family member's that are always there for us! Without these people and their kind thought's, words, and prayer's we wouldn't be as strong as we are. All of these people have loving hand's helping in the success of my children. They are all truley blessings and I can never EVER repay them the appreciation that they deserve...well I could if I won the lottery...lol!

Sunday, February 21, 2010

And the Eye Dr says...

I took Kenny to the eye dr on Thursday and he has decided that it would be a good idea for Kenny to be seen by the Visual Impairment portions of Children's Hospital. I'm not too sure on how I feel about this right now. I'm glad that he's going to be followed closely incase anything does arise. The unfortunate thing is is that there is nothing that we can do at this point but wait. There is a chance that his brain can compensate the brain damage and work out. Well Kristen's did. She still has some depth perception issues and a nystagmus. But she is able to function just fine now. So we just wait with Kenny. We feel that he is seeing something. Mostly just the TV...lol. He likes hockey, but it's probably just the light that he likes. Although there are times at a distance that you can get him to smile at you after you've smiled at him!

Wednesday, February 17, 2010

Another thing that I borrowed and wanted to share with everyone

Some Mothers Get Babies With Something More
By: Lori Borgman, Columnist and Speaker

My friend is expecting her first child. People keep asking what she wants. She smiles demurely, shakes her head and gives the answer mothers have given throughout the pages of time. She says it doesn't matter whether it's a boy or a girl. She just wants it to have ten fingers and ten toes.


Of course, that's what she says. That's what mothers have always said.

Mothers lie.

Truth be told, every mother wants a whole lot more. Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes, satin skin and straight feet. Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.

Every mother wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two). Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class.

Call it greed if you want, but we mothers want what we want.

Some mothers get babies with something more.

Some mothers get babies with conditions they can't pronounce, a spine that didn't fuse, a missing chromosome, a palette that didn't close or a tiny crooked foot or two. Most of those mothers can remember the time, the place, the shoes they were wearing and the color of the walls in the small, suffocating room where the doctor uttered the words that took their breath away. It felt like recess in the fourth grade when you didn't see the kick ball coming and it knocked the wind clean out of you.

Some mothers leave the hospital with a healthy bundle, then, months, even years later, take him in for a routine visit, or schedule her for a well check, and crash head first into a brick wall as they bear the brunt of devastating news. It can't be possible! That doesn't run in our family. Can this really be happening in our lifetime?

I am a woman who watches the Olympics for the sheer thrill of seeing finely sculpted bodies. It's not a lust thing; it's a wondrous thing. The athletes appear as specimens without flaw - rippling muscles with nary an ounce of flab or fat, virtual powerhouses of strength with lungs and limbs working in perfect harmony. Then the athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler.

As I've told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echo cardiogram, there's no such thing as a perfect body. Every body will bear something at some time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, medication or surgery. The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serious disabilities, and wonder how they do it.

Frankly, sometimes you mothers scare me. How you lift that child in and out of a wheelchair 20 times a day. How you monitor tests, track medications, regulate diet and serve as the gatekeeper to a hundred specialists yammering in your ear. I wonder how you endure the clich├ęs and the platitudes, well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike. I even wonder how you endure schmaltzy pieces like this one -- saluting you, painting you as hero and saint, when you know you're ordinary. You snap, you bark, you bite. You didn't volunteer for this, you didn't jump up and down in the motherhood line yelling, "Choose me, God. Choose me! I've got what it takes." You're a woman who doesn't have time to step back and put things in perspective, so, please, let me do it for you.

From where I sit, you're way ahead of the pack. You've developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule. You can be warm and tender one minute, and when circumstances require, intense and aggressive the next. You are the mother, advocate and protector of a child. You're a neighbor, a friend, a stranger I pass at the mall. You're the woman I sit next to at church, my cousin and my sister-in-law.

You're a woman who wanted ten fingers and ten toes, and got something more.

You're a wonder.

Monday, February 15, 2010

The over 30 crowd...borrowed this and had to share!

THE SPOILED UNDER-30 CROWD!!!
If you are 30 or older you will think this is hilarious!!!!

When I was a kid, adults used to bore me to tears with their tedious diatribes about how hard things were. When they were growing up; what with walking twenty-five miles to school every morning.... Uphill.... barefoot... BOTH ways Yadda, yadda, yadda




And I remember promising myself that when I grew up, there was no way in hell I was going to lay a bunch of crap like that on my kids about how hard I had itand how easy they've got it!

But now that.... I'm over the ripe old age of thirty, I can't help but look around and notice the youth of today.

You've got it so easy! I mean, compared to my childhood, you live in a damn Utopia!

And I hate to say it, but you kids today, you don't know how good you've got it!

I mean, when I was a kid we didn't have the Internet. If we wanted to know something, we had to go to the damn library and look it up ourselves, in the card catalogue!!

There was no email!! We had to actually write somebody a letter - with a pen!

Then you had to walk all the way across the street and put it in the mailbox and it would take, like, a week to get there! Stamps were 10 cents!


Child Protective Services didn't care if our parents beat us. As a matter of fact, the parents of all my friends also had permission to kick our ass! Nowhere was safe!

There were no MP3' s or Napsters! If you wanted to steal music, you had to hitchhike to the damn record store and shoplift it yourself!

Or you had to wait around all day to tape it off the radio and the DJ would usually talk over the beginning and @#*% it all up! There were no CD players! We had tape decks in our car. We'd play our favorite tape and "eject" it when finished and the tape would come undone. Cause - that's how we rolled, dig?

We didn't have fancy crap like Call Waiting! If you were on the phone and somebody else called they got a busy signal, that's
it!

And we didn't have fancy Caller ID either!
When the phone rang, you had no idea who it was! It could be your school, your mom, your boss, your bookie, your drug dealer, a collections agent, you just didn't know!!! You had to pick it up and take your chances!

We didn't have any fancy Sony Playstation video games with high-resolution 3-D graphics! We had the Atari 2600! With games like 'Space Invaders' and 'Asteroids'. Your guy was a little square! You actually had to use your imagination!! And there were no multiple levels or screens, it was just one screen.... forever!
And you could never win... The game just kept getting
harder and harder and faster and faster until you died! Just like LIFE!


You had to use a little book called a TV Guide to find out what was on! You were screwed when it came to channel surfing! You had to get off your ass and walk over to the TV to change the channel! NO REMOTES!!!

There was no Cartoon Network either! You could only get cartoons on Saturday Morning. Do you hear what I'm saying!?! We had to wait ALL WEEK for cartoons, you spoiled little rat-bastards!

And we didn't have microwaves, if we wanted to heat something up we had to use the stove! Imagine that!

That's exactly what I'm talking about! You kids today have got it too easy. You're spoiled. You guys wouldn't have lasted five minutes back in 1980 or before!

Regards,
The Over 30 Crowd

Saturday, February 13, 2010

Two Years Ago Today

Two years ago today a miracle was born into our home. Courtney Joy Taylor. She was our first and only baby that we got to hold right after birth like a normal baby. (the other three were either too early or too fragile) She spent 6 days in the hospital and came home to her siblings. For the first little while I called her the Pide Piper...lol...because she had this high pitched whine that just wouldn't stop!! She still has it...lol...just kidding. She is such a little turkey and loves to keep up with Joe and Kristen. She continues to amaze us as we have never experience a 'typically' developing child. We look at eachother sometimes and go..."is that what their supposed to do??!!" She has really shown us that she is the boss...lol. Happy Birthday Courtney! Mommy and Daddy love you so much!

Friday, February 12, 2010

She's Four Years Old Today

Four years ago a miracle was born into my life. Her name is Kristen Marie Taylor. She joined us quickly, but silently. We were so scared for what was to happen next. We didn't really truly take the severity of what was happening to reality. We never thought that she wouldn't make it, or maybe it's that we didn't believe that it could happen to us. Well she did survive and she's here with us today. Kristen is a CDH survivor. She is our little girl. She may have lost her hearing due to the ventilation, but she's here with us. She continues to amaze me everyday. She is a beautiful little girl today. My baby is growing up. I will post her link to the previous post that has all of her story from an earlier post last year. I encourage you to read it and spread the word of CDH. Bring awareness to what it is and how devestating it really can be to families. We are very blessed that Kristen health wise has no real lung issues that can really keep these kids sick.

http://bobdoble.blogspot.com/2009/04/kristens-run-with-cdh.html

I'd also like to share the following from the founder of CHERUBS who lost her CDH angel. It is so touching and really makes me feel apart of the CDH community! I have asked her if I could repost this from her blog and I did last year, I just felt that re-posting it would be a good thing for me.

No One Knows.... by Dawn Williamson
No one knows what it's like to be diagnosed with Congenital Diaphragmatic Hernia and have your world shatter - unless they have been there themselves.
No one knows what it's like to watch your baby struggle to breathe - unless they have been there themselves.
No one knows what it's like to cry yourself to sleep at night wondering if today was the last day you had with your child and the hospital could call at any minute - unless they have been there themselves.
No one knows what it's like to have to leave the pediatric intensive care unit because you've been there so long that they kick you out - unless they have been there themselves.
No one knows what it's like to sleep on the floor of the ICU waiting room because the Ronald McDonald House is too far way at just 2 blocks from the hospital and you need to be RIGHT THERE in case your child needs you - unless they have been there themselves.
No one knows what it's like to sit in a Care Conference crying for your child's rights, begging staff to not give up on your baby and send him to a chronic care facility - unless they have been there themselves.
No one knows what it's like to have to learn how to work life support systems that your child's very being depends on - a ventilator, an oxygen concentrator, feeding pumps - unless they have been there themselves.
No one knows what it's like to ask yourself "Why my child?" so many times that even God is tired of hearing it - unless they have been there themselves.
No one knows what it's like to have to explain over and over and over and over what your child's medical condition is to family and friends and a society that has never heard of it - unless they have been there themselves.
No one knows what it's like to struggle with marriage issues because you're dealing with reality in different ways and one of you is stuck with making all the decisions while the other lives in la-la-land - unless they have been there themselves.
No one knows what it's like to scream at a nurse that they don't know what they are doing while suctioning your child's ET-tube and it's about to come out and if they don't step away from his bed you will step in and physically remove them - unless they have been there themselves.
No one knows what it's like to have to fight to get treatment for a bedsore on your child's back from being in the same position for 3 weeks - unless they have been there themselves.
No one knows what it's like to actually loudly cheer for a child to pee - just pee - unless they have been there themselves.
No one knows what it's like to never hear your child cry until they are a year old because there are tubes down his throat preventing his vocal cords from working - unless they have been there themselves.
No one knows what it's like to not hold your child until 2 weeks after he was born because he's hooked up to too many machines keeping him alive - unless they have been there themselves. No one knows what it's like to lose count of how many IVs your child has had, or what scars are from what surgery, or how many meds he's been on in his entire life, or doctors he's seen - unless they have been there themselves.
No one knows what it's like to be on your hands and knees in a surgical waiting room begging and pleading with God to take you instead of your child - unless they have been there themselves. No one knows what it's like to put a tube down your child's nose and into their stomach, or past the stomach - while making sure not to hit the lungs - so that your child can eat formula from a pump - unless they have been there themselves.
No one knows what it's like to miss a pulse ox when it's gone because then you can't sleep because you're terrified that your child will stop breathing - unless they have been there themselves.
No one knows what it's like to hook your child's ventilator up to a car battery because the power is out, while screaming at the electric company to fix the problem and talking to the doctors and ordering an ambulance at the same time - unless they have been there themselves.
No one knows what it's like to call 911 more than you call the pizza delivery place - unless they have been there themselves.
No one knows what it's like to duck from flying hearing aids because your 2 yr old can't understand that they aren't toys and need to stay in his ears - unless they have been there themselves.
No one knows what it's like to watch "normal" healthy kids and make wishes for your child that you aren't sure will ever happen, like riding a bike or going to school or playing baseball - unless they have been there themselves.
No one knows what it's like to have had more rides in ambulances in your life than in taxi cabs - unless they have been there themselves.
No one knows what it's like to go out in public and have people point and whisper about your baby, because he's in his stroller attached to a vent, oxygen tank, feeding pump, and pulse-ox - and yet you put on a cute little outfit or a baseball cap on his head in a feeble attempt to make him look less conspicuous and more normal - unless they have been there themselves.
No one knows what it's like to go into the ladies room and cry alone because you don't want your baby to see you crying beside his hospital bed - unless they have been there themselves.
No one knows what it's like to try to sing songs and read children's books to your child like everything is normal and you so desperately want all the normal things healthy families have, even though you don't know if your child will live through the week because he has a blood infection - again - unless they have been there themselves.
No one knows what it's like to be told your child's kidneys are shutting down, oxygen levels are below 50, and he won't live through the night - but he does - unless they have been there themselves.
No one knows what it's like to travel with more electric equipment in your car than the FBI - unless they have been there themselves.
No one knows what it's like to spell D-I-A-P-H-R-A-G-M-A-T-I-C H-E-R-N-I-A in your sleep - unless they have been there themselves.
No one knows what it's like to hire home health nurses and then have to oversee them and make sure that they aren't sleeping when your child's vent pops off his trach at 1 am - unless they have been there themselves.
No one knows what it's like to jump up and down squealing because your child is walking - at 2 and a half yr old - unless they have been there themselves.
No one knows what it's like to battle the school system and have an IEP for a child who has a feeding tube, hearing aids, thick eyeglasses and being told that they "can't handle all his issues" so you are better off homeschooling - unless they have been there themselves.
No one knows what it's like to consider moving to another country to get their universal health care because your child doesn't qualify for any decent insurance with all his pre-existing medical conditions and you can't afford the medical bills of the $6 million dollar baby unless you make so little money that you qualify for Medicaid - unless they have been there themselves.
No one knows what it's like to be asked "so what caused him to be sick?" while being looked at like YOU did something to cause it - and have the only answer that anyone has to that question "I DON'T KNOW!" - unless they have been there themselves.
No one knows what it's like to carry medical records with you every where you go "just in case" - unless they have been there themselves.
No one knows what it's like to perform CPR on your own child - more than once - unless they have been there themselves.
No one knows what it's like to plan holidays and vacations around hospitalizations, doctor visits, therapy appts and cold and flu seasons - unless they have been there themselves.
No one knows what it's like to not be able to go home for Christmas because your child could catch a cold that would kill him - unless they have been there themselves.
No one knows what it's like to grieve a LIVING child because your dreams are gone, then living with the guilt of feeling that way - unless they have been there themselves.
No one knows what it's like to try to communicate with a child who can't talk and struggles with sign language to the point that both of you cry - unless they have been there themselves.
No one knows what it's like to be young and have the responsibility of not only being a parent but a parent of an extremely special needs child - unless they have been there themselves.
No one knows what it's like to scream down the hospital hallway "Help! My child can't breathe!" or "Where is my son's 2:00 meds?" or "He is allergic to that!" - unless they have been there themselves.
No one knows what it's like to leave the hospital without your baby but with his bed sheets and linens instead because he's allergic to EVERYTHING and so you wash them in gentle detergent and bring them back for him - unless they have been there themselves.
No one knows what it's like to live in constant worry that another child will spill his milk on your child, sending him into anaphylactic shock if the epi pen you carry EVERYWHERE isn't given fast enough - unless they have been there themselves.
No one knows what it's like to be in the hospital so much you're on a first name basis with your surgeons, PICU doctors, nurses, secretarial staff and the cleaning crew - to the point that you double-date with your spouses, take vacations together and still send each other Christmas cards 15 yrs later - unless they have been there themselves.
No one knows what it's like to be in the hospital so long that when you come home you actually miss the cafeteria food - unless they have been there themselves.
No one knows what it's like to spend every hour that visiting isn't permitted in the PICU in the medical library, looking up your child's birth defect because NO ONE SEEMS TO KNOW WHAT THE HELL IT IS or where you can find information or support. And then spending hours beside your child's hospital bed with a medical terminology book translating it all - unless they have been there themselves.
No one knows what it's like to be told that your child won't live to be transported to the larger hospital so you should say good-bye - unless they have been there themselves.
No one knows what it's like to have a surgeon tell you "we've done this surgery so many times on him that we aren't sure how else to go in there" - unless they have been there themselves.
No one knows what it's like to watch your child's first haircut being done by a nurse to prep for an IV going into this head instead of at the barber - and still taking photos of it for his baby book - unless they have been there themselves.
No one knows what it's like to be told that your son will never see or hear or breathe on his own, and then show them that they are wrong - unless they have been there themselves.
No one knows what it's like to be so frustrated with feeding therapy, begging your child to please "take just one bite for Mommy, PLEASE" - unless they have been there themselves.
No one knows what it's like to be so excited to meet a medical professional who UNDERSTANDS what CDH is and who really, truly cares about these kids, your kid, and how that person now has your gratitude and part of your heart forever - just for caring - unless they have been there themselves.
No one knows what it's like to lose your child - unless they have been there themselves.
No one knows what it's like to lose your child in your own arms, while they look up at you and you try and try to save them but can't - and the guilt you live with every day for not being able to perform a miracle, the impossible, more than even the doctors because you're mommy and you're supposed to do the impossible - unless they have been there themselves.
No one knows what it's like to pick out the clothes your child will be in forever, buried in and what toys and books to pack with him - unless they have been there themselves.
No one knows what it's like to cry so much your heart feels like it's coming out of your throat because you miss your baby so much - unless they have been there themselves.
No one knows what it's like to mourn and grieve and try to make something good come from all the sadness without going over the deep end and trying to make a martyr out of your child's memory and turning them into a superhero instead of ... your baby .... because you want to remember them for who they were and not who you wanted them to be - unless they have been there themselves.
No one knows what it's like to ask God a different "Why my child?" question millions and millions of times until He cries with you - unless they have been there themselves. I know, because I have been there.
I didn't read it in a book or in someone else's story.
I didn't learn about this from an article or research abstract.
I don't pretend to understand things I never experienced.
I lived it all.
I cried it.
I survived it.
I woke up to every single day.
I slept with it on my mind every single night.
I was immersed in this world of CDH for 6 and a half years.
I still am.
CDH is more just a birth defect.
It's more than a day or a few weeks in the hospital. It's more than 1 surgery. It's every single moment in a cherub's life. Every single one. I know this because I lived it. And I know over 2200 other moms who have lived it too. Who understand. Who didn't learn from book or stories but who lived it. Parts of it or all of it. They understand. They are the moms and dads and children of CHERUBS.

http://www.cdhsupport.org