Andy and Clare are going to be induce on Monday!

Their journey has been filled with many joyous experiences, but also alot of unknowns.

Please pray for them as they enter parenthood and this new life with a child with dwarfism.

Pray for Little D that he has no complications.

As soon as I get word, I will pass it on!

I have been thinking about the last year and a half.

What a ride! It has been joyous, scary, uplifting and heartbreaking.

When GOD granted us this life, nothing was certain. We may have had 77 years on this planet or 7 minutes. Each moment reminds you to ALWAYS realize this life is short. A blip in space.

Knoah is coming up on his 1st Birthday soon! WAAAAAHHH!

Knoah is coming up on his 1st Birthday soon! YEEAAAHHH!!

This time last year, I didn’t know where we would be. Instead of celebrating his birthday, we could have been having a memorial.

This time last year, I was searching for a burial outfit. I was looking at Urns and Caskets online. I was looking for photographer to take pictures of the family after he was born. Just in case he didn’t survive. I was tormented. I wanted to give him my father’s name. Knoah Franklin. Even though my dad’s name is Frank, it was close enough, but I didn’t want to give him my father’s name, only to have it end up on a tombstone.

My mind is made up, I will give him my father’s name.

November 15, 2006, for a few moments my worst fear occurred. He didn’t take his first breath for almost two minutes. Laying on that table, I knew the longer he went without oxygen, the more damage that occurred.

I felt like a mouse in a trap. Numb, forgetting to breath. Begging GOD to take my breath and give it to Knoah.

A whimper, ever so faint. It could have been mistaken for the squeal of a mouse caught in a trap and I took another breath. We were both breathing, not well but alive.

A glimpse of the child that had just left my womb. I saw him for two seconds. I only need two seconds to know GOD has blessed me with a child. A child that had a chance to live.

Achondroplasia. That sight was a blessing. A child with a physical disability, but a chest circumference compatible with life. That was blessing.

Fast forward, January 6, 2007 at 9:00am. My breasts filled with my son’s nourishment had not be relieved in over 12 hours. I was in pain. Knoah not waking for his two night time feedings, I reached over to get him. I lift him to my chest. he’s not interested. Something is wrong. I bring him to the dining room table and he is pale, very pale, then he turns blue.

The doctor’s office. What seemed to be hours were only 30 minutes. The EMT’s take my son.

“How do you want to go?” The EMT driver asked the paramedic with my son.

“Delta, don’t stop.”

My heart sank, I thought I would die right there in the ambulance. I knew if you required an ambulance, each siren had a meaning.

Alpha response: Stop for all stop lights and signs. You are no closer to dying than you were before you called. No lights or sirens.

Bravo response: Basically same as above but okay, you do need medical attention. Brief lights and sirens.

Charlie response: You need medical attention now! We don’t think you’ll die, but we don’t want to take that chance. Lights and sirens.

Delta response: Delta = Death is imminent. Full lights and sirens. Travel speed in highest legal speed, do not stop for ANYTHING! You may die in this vehicle.

Things weren’t looking good for baby Knoah. I cried the whole way to Toledo. Praying that he made it to the hospital. We get to the floor, he is stable. Not good, but they’ll figure it out.

A little after midnight, while typing a message to POLP he stopped breathing for 43 seconds. This is the first time I heard the word ALTE

We ended up in the PICU and I become even more aggressive with his medical attention.

11:30 pm January 8, 2007 my father brought me to the cafeteria. What he told me was profound in that moment of my life. He said “Tonya, we are sitting here in the hospital cafeteria. Your son is upstairs. He is breathing. You could be planning a funeral. GOD has a plan for him and if he wants Knoah, nothing you do is going to change that.”

I rejoice in the fact for the next 8 days, living in the hospital, I had my son.

We have had a few scares here and there. I still wake several times a night to listen for his breath.

Oh, the trips to the doctor’s. It’s a religion in it’s self. That’s okay. We are here, almost a year later.

I have learned, to know where you are going, you have to know where you came from. Not just give it a passing thought, but really put thought into it.

One of the things I do to remind myself, when life wants to place stress into our already chaotic days is to remember those who didn’t make it. The SIDS Network is a site dedicated to parents who have lost their children to SIDS (Sudden Infant Death Syndrome). January 6, 2007 could have been Knoah’s day.

I visit at least once a week to not only pray for those parents who were not gifted with their child’s life, but to remember that life is precious no matter what it brings you. I know I am one of the lucky ones. For that, I am eternally grateful.

As it’s said, we hit the “Gene Lottery”. We were chosen to have a child with a disorder compatible with life. Many other’s weren’t so lucky. Though, the one thing we all share is we know, we were given a gift.

The gift to experience a life that made a difference however long we have.

All of this to reflect on Knoah’s 1st birthday? Yeah. As sad as it sounds, it’s not. November 15, 2007 will be a bittersweet day. I have his party set for November 17. One of my best friend’s Kelly has been a GOD send. She has been my shoulder to cry on, she has been my ear to whisper in. Knoah isn’t just mine, he is our’s. She is the living testiment to how he has affected people’s lives. I LOVE YOU for that.

I picked up 50 invitations. Not that I am expecting 50 people, but so many people have been a part of his life in one way or the other. So many have offered prays or support. Either in words or gifts. I know this isn’t just my baby anymore, he is all of our’s. I would love for readers of What is Normal to share in this event. It is a milestone in so many ways.

Oh, the place’s you’ll go. We have and it is good.

http://members.shaw.ca/anabw/grease.htm

Again, thanks to FrenchFry for having a sense of humor I get!

Oh…and no “AWWW they kinda look like Knoah…”

We know he’s a big headed baby

When it seems all is well, the things you don’t see cause you great worry.

On Friday we went to A2 to see the Neurosurgeon. Like expected he says he is not seeing any cause for concern from the fluid in Knoah’s brain. From outer measurements, everything looks good. He did say though, “the next time he has an MRI or CT, at ANY hospital, tell them to also get images of his brain”.

Okay.

Then he says “but my biggest concern right now is his spine. He has spinal stenosis“. On face value, I wasn’t concerned with this as this is common in people with Achondroplasia. It usually, if then, presents problems later in life as you get older. It is a degenerative spinal disorder that cause loss of activity, chronic pain and nerve damage.

At 8 months old when the MRI was taken, let alone now, is unheard of!

I am still in some shock. He’s 10 months old. How is this doctor telling me my son has a problem with his spinal structure at 10 months old? If he were 45, okay. Not 10 months old.

I asked him, what can be done about it. He said that given Knoah’s age, nothing. He is too young to have the surgrey.

What type of surgery you wonder. Well, here comes the bowl of cherries. They would remove the back half of the spine, leaving the spinal cord exposed. (EYES HUGE, MOUTH OPEN)

Dr. Maher said that Knoah may never have a problem or he could start having problems in 5 years. It is going to depend on how and if his spinal cord and spine grow.

Now, being the brilliant mind I am (yeah, right) and knowing all the ins and outs of Achondroplasia, the one thing we know is what? Achondroplasia is caused because the cartilage doesn’t convert to bone as quickly as it should. His spinal cord, isn’t affected by the Achondroplasia, so basic deductions suggest his spinal cord will grow faster than his spine. (EYES WIDE, MOUTH OPEN)

I am not saying I believe or even think this will be a problem, but it could be and that to me is enough to cause concern.

Jeez. This baby has been through so much and this is just one more thing we pile on. I swear, I have seen more of this kids insides than I ever wanted to see.

I pray every night for GOD to keep my family safe, out of harms way and when he decides to bless us with that occasional (IMO, more than that) setback, I am still grateful for the blessings he has given us.

I still want to ask, why? Why Knoah? That’s wrong of me, isn’t it. *Shaking head, exhaling loudly*

We’ll just have to wait and see.

So, on a light note….I took Knoah’s brace off for a bit, too give him a little wiggle room. The first picture you saw only reveals a bit of his intentions.

This is what he wanted to surprise me with, a second time. I had to get the camera.

He is pulling himself up!! We have been working with him. I let him crawl over the seat cushions and blankets. He is doing wonderfully, but we can’t let him do this without his brace. You see his spine. Even with bracing, you can see how bad it looks.

So I got my photo opp and immediately told him “Good Boy!” and layed him back down.

Yet, with all GOD has given us and had us experience, I wouldn’t change it for the world!

If you are blogging about raising a child with dwarfism and want to share with even more people, please submit your link to me!!

Also, do forget to add yourself to Knoah’s Ark!! I am going to post about the places he has been!!!
Tonya
jannob980006@yahoo.com

Knoah’s surgery went EXTREMELY WELL!! I cannot express how thankful I am that it went well.

Dr. Green said that while Knoah did not have any fluid in his ears, he placed the tubes in anyways.

The whole thing took 10 minutes, I didn’t even have time to read half a magazine. Okay, I didn’t read it, I looked at the pictures. It was a celebrity magazine, what can I say?

The hardest part of this was recovery. Knoah screamed for 1.5 hours. Nothing I could do would settle him down. The nurses said that because of the medication used to put him asleep, that most kids wake up and act like they are having night terrors. Which he did.

Poor baby!! I finally got him into the car to go home and he fell asleep with no problems!

The rest of the day he hung out and relaxed.

Today he is feeling much better! He is crawling around and hearing a lot more. Before, he may move to a loud sound, now he does move to a loud sound!

So, because I like knowing all the details, I have posted a video of what the surgery looks like. If you don’t like body fluids, don’t watch!!

I want to THANK EVERYONE who offered prays in Knoah’s name!! They worked beautifully!!!

Also, exciting news from Andy and Clare, induction date is October 1, 2007!! Yeah!!!

There was a blind girl who hated herself because she was blind.

(Author unknown)

A poster on Monroe Talks posted this and after I asked permission (Thanks FF) I wanted to share!!

So, I think I have a problem on my hands…I have found Knoah’s addiction. It’s not what you think either. Being a baby, you would say it’s his bottle. Nope. His baby food. No!
Did I ever tell you the story about us going to Pennsylvania on vacation? maybe another time…

Knoah sees me getting out a “treat”. He, well…here

Chocolate! Knoah LOVES Chocolate…goes a little banana’s for it!

So, later on in the day I tell him we have his surgery for the tubes on Monday. Not expecting any type of reaction. Boy was I wrong…

Doesn’t stop there….

Nope, he is acting like I am torturing him…

It wasn’t the conversation that got him this way. I don’t actually remember what it was, but boy, I told you he had a temper!

For the tympanostomy tube surgery we have to check in at 7am in A2. I am okay so far, I know it is for the best. At least this is one less thing we have to worry about.

I finally got a chance to talk with Neurosurgery and they cancelled his MRI on Friday, but we still have to keep the appointment.

I have also been in contact with a women in Spain. Her name is Blanca and her son Angel is achondroplastic. He is a very handsome boy!! I asked her to write something for the blog. I enjoy reading about other’s prenatal experience with a dwarfism dx. Especially those who live overseas. Obviously the care is going to be different and I have been interested to learn the different approaches doctor’s have taken.

Talking about overseas…Clare and Andy are going to be finding out when Little D is coming!! I am so excited!! They have been blogging about their pregnancy and it has been very similar to what we went through. Stop by and offer them loads of prays! These last few weeks will be stressful and they will need the strength!!

This is a story written by Charmaine Kay of South Africa! She found What is Normal through Knoah’s YouTube video! I’ll post her video at the bottom of this post. Enjoy!!

I must say…her daughter Leah is GORGEOUS!

Thank God for all things big and small

Finding out that I was pregnant with our third child initially came as a shock to my husband and I, but once the news had settled in our ears, we were overwhelmed with joy, and excited about the fact that this could be our little boy as we have two beautiful daughters.

The thought of experiencing any problems during my pregnancy never crossed my mind, as I had sailed through my first two pregnancies and experienced natural birth with both of my daughters. Bearing all this in mind what could possibly go wrong when there was a clean history? All my prenatal appointments went well and I thought that we were on the home straight when my baby was given a clean slate after my 16 week scan. There was no need for blood tests or any other specialised scans because there were no signs of any disorders at that specific stage in my pregnancy. Life Was Good!

At my 20 week scan appointment, my doctor noticed that my baby’s femurs looked a bit short, but because baby was lying curled up in the womb he was not too concerned, but advised me to come back two weeks later so that he could take another look, just to be sure. I was not too concerned about what he had told me at that time, but when I returned two weeks later for the check up, I was told that the measurements had not changed and he therefore suspected there was a problem with my baby. I was referred to a foetal abnormality specialist to find out what could be wrong as shortened femurs could be linked to all sorts of birth defects or syndromes. My whole care free world stopped dead in its tracks, and I remembered crying all the way home, with the fear of not knowing what was wrong with my baby.

The abnormality scan was the worst experience of my life. I remember having my “bump” pushed and prodded so they could try and get a better view of baby’s body. A 3-D scan was performed to see if baby’s face was normal as a prominent fore head and slanted eyes could mean that I might be expecting a baby that has Downs Syndrome. I tried hard to be strong but when I saw my baby’s face on the monitor I could not hold back the tears.

I then knew this baby was special, and no matter what the future held, this baby was part of our family and we were strong enough to handle whatever came our way. The doctors could not conclusively say what the problem was but I was told that it may be Downs Syndrome, and that they could not determine what quality of life my baby would have and that we would have to wait until baby was born to obtain an accurate diagnosis.

As my pregnancy progressed my husband and I mentally prepared ourselves for what was to come. During the months that followed we developed an indescribable bond with our unborn baby and my daughters became more and more excited as the days passed. All they wanted was to meet their new brother or sister.

Baby Leah, yes another girl, was born the 16th October 2006 and was diagnosed with a genetic condition known as Achondraplasia, more commonly known as “dwarfism”. To our family it was the best news ever as there was no sign of Downs Syndrome and the complications that are imposed on a child with that Syndrome, instead, we were “lucky” enough to be the parents of a healthy “little person”. I remember my daughter saying that it would be no problem to find Leah a little boy friend.

Little Leah has brought so much joy into our lives and she melts hearts wherever we take her. She has brought us closer together as a family, but the most important lesson we have learnt from this experience is that the word “Normal” can be quite a harsh at times because to us Leah is quite normal, and every baby or even adult that may have a handicap or mental disability is normal and perfect in a very special way.

So to every mother who may have been blessed with a special baby, remember that God must have known that you were special enough to take care of his special angels no matter how big or small they may be.

From Charmaine Kay

Okay. This is funny. In some ways, this isn’t so funny.

Have you ever looked around and really paid attention to words.
They describe so much around us, that they define what “it” is.

For example, Little People by Fisher Price. Obviously, they are talking about toys, plastic figurines that allow a child’s mind to wander. Letting them playing in small house, drive tiny cars and everything is perfect in their world.

Another example, the Midg8t League. Could be a baseball team, football, hockey, etc. Referring to a child’s sport team. Everyone is is usually the same grade, height, age, etc. So, let’s put the word MIDG8T on a banner for the entire community to see. Yeah!

No! Would we find it permissible to use the Ni99er League to describe a team wearing all black? If the word were negro, okay, it does describe a color, but the N double g word is derogatory.

So is M-get.

At what level does sensitivity take over and being funny, stop?