Knoah has been doing well the last month. Today he recieved his 4 month shots because he didn’t get them on time.

Now, his soft spot is buldging a bit. He has been sleeping off and on since 3:30 or so.

At 7:30, he woke up crying, irritable and then after 5 minutes or so of crying, he throw up everywhere. He hasn’t eaten since 4pm.

I am all prepared to go to the hospital. Now it’s just waiting…

All of Knoah’s Friends, well my friend’s kid’s. The kid’s don’t know their friends yet! LOL. They just want to know why their mom’s are always taking pictures of them!!

This is Knoah and Adian! Trying to crawl, going nowhere! Achondroplasia

This is Samuel! I Love his smile!! Thanatophoric Dysplasia

This is Bryan! He is precious! Achondroplasia

This is Knoah and Keira, the Special K’s! Achondroplasia and Average Height

Memorial Day weekend 2007. It was my birthday.

Do you know where I spent my birthday?

The Center. The whole day.

There was a Women’s Conference on Saturday morning. Will had to be there at 8:00am. So we got up, showered and left. I helped Will get everything ready for the conference. Knoah hung out in his car seat, yelling away in the gym. When everyone arrived, I helped get the tables and food ready. They had a brunch and the Pastor invited Hannah, Knoah and I to stay. We did, it was nice. The food was delicious! It was a very nice conference. It started at noon and was over with by 3:00pm. Luckily, there was enough people to help clean up and put tables away.

I went home for a bit before I had to be back at the Center by 6:00pm. There was a Wrestling show. Jacob was not going to miss this show. He loves them. I helped Will with the consessions. Knoah again hung out in his car seat, playing with his rings. I alternated betwwen getting bottled water and holding him. He enjoyed himself! I like watching all the lights and people. There had of been 100+ people there. When it was over, we finally cleaned up and left. We got home about 11:30pm.

15 hours we spent at the building. My whole birthday. Nothing special.

Getting older doesn’t make you want to scream your age. Each birthday is a reminder your one year closer to death…

On Monday, Sue and her family came up. Adian is getting so big!

Adian is now 10.5 pounds and is about 23 inches long!
We cooked out, talked, laughed. We walked down by the river and took the kids to the park. They had fun. We got lots of pictures of the two!

We decided that when we go to Grand Rapids in July, we are going to ride together to help with gas and stay at the Renucci House. We will get one one to cut the cost. She has the appointment right after ours. We are going to leave the 26th and see Dr. Pauli the 27th.

I was sitting on the back porch tonight, thinking. I do enough of it as it is…but, I was thinking, at my age, I still don’t know anything. When is this wisdow of age suppose to happen. I mean, here I am, 32…yep, I know…32. I am a wife, a mother, me. I am responsible for kids and their mine. I am responsible for Knoah. That got me thinking, what I “knoah”.

My “knoah” list:
I knoah I love my husband
I knoah I love my kids
I knoah my life is not perfect, but it is mine and I love it.
I knoah things could always be worse
I knoah I need to find a job, but will try to wait a bit longer
I knoah I have family that love me
I knoah I have be blessed to meet people who through twists of fate, have become my bestest friends in the world.
I knoah God has given me ‘this’, whatever it maybe and I will accept it openly
I knoah that when it is said and done, I was given a chance to not only give life to three miracles, I have witnessed miracles, even when it seems they are not.

Corny to use knoah for know, but it is a blog about Knoah…it works:)

The whole issue of girls came up the other day. His girlfriend, Keira came to visit him! She is almost 5 months old!

Look at him! He’s got that “guy look”.

Oh yeah! I know how to snag’em! I’m a stud! She’s sooo digging me right now. I am working the diaper!!

He loved it! She loved it! They were both grinning ear to ear! They met in the hospital in January. Heather, Keira’s mom and I have become close friends! I love her to pieces!! She is an amazing person and an even better mother! We loved seeing the two kids hold hands! They wouldn’t let go of each other. That is until Keira tried to take Knoah’s passy away. Knoah wasn’t having that. It is like the whole “you never eat another man’s fries”…

We approve of her! She is beautiful! She has these almond shaped eyes and there a crystal blue! Knoah enjoyed looking at her, I don’t blame! I enjoy looking at her!!

He is looking forward to another playdate!!

I knew it would. I guess I thought it would take some time. I mean just last week no one seemed to notice.

I was asked “how old is he?” When I responded with, “he’s almost 7 months old”, the look was “huh?”. “Why is he so little?”

I had another lady ask me, “Was he a preemie?”. Yet another asked if I was adopting him, because he’s special needs.

I know he’s small, he’s still in 0-3 month clothing. Just inching into 3-6 month onesies. I think he’s precious!

He is doing so well! He is holding his head up when he is on his tummy, he is trying to crawl, not very well, but trying is the operative word. He is giggling and snorting. Smiling! I love his smile. His eyes light up when he sees me. For that brief moment, I catch my breath. He looks at me like he is in love. He doesn’t want to take his eyes off me, even in the car. I am sure his neck can’t be too comfortable with him facing backwards. He enjoys watching me.

I know he will be watching me as I describe him to people who ask about his stature. I have tried to make a point, in making it a point, so it’s no big deal. Does that make sense?

Halloween. I LOVE Halloween! I want Knoah to go as a Turtle. Why, because, I am hoping he learns to crawl walking on all fours. How cute would that be seeing him crawl around with a turtle shell on his back! I’d love it. Or when Hannah and I were at the pet store. We were buying Will feeder fish. Hannah saw some frogs and asked what kind they were. They were “Dwarf Frogs” No Kidding! I told her and she said, “There doorfs, just like Knoah!” I laughed and said yes. She said “There little people frogs. No, they can’t be little people frogs, because there frogs, but their doorfs so there little frogs”. Very good Hannah!!

For the kids birthday last year, we had gift cards to Toys R Us. So we took them. Jacob got a soccer ball and Hannah got this stuffed dog animal that had babies in it. I forget the name, but by this point we knew Knoah has a form of a skeletal dysplasia. We knew he would be a little person. So Hannah gets into the car, rips open her toy and delivers the baby puppies.

She yells, “look I got a girl puppy and a boy puppy!” She gets quiet and says and “I got another boy puppy!” I said “Wow! Three puppies, let me see!” She passes them to me and sure enough, she had two boys and one girl. I was looking them over a realized, what a second. What’s wrong with this puppy? It doesn’t look like the other ones. Wha…”OMG! Is this suppose to be funny? Will look, her puppy had a dwarf puppy! Look at it’s arms or paws…there short!”

I carry on about this stuffed puppy, wondering in amazement, God does have a sense of humor!

I may not have a sense of humor, but God makes sure I laugh at least everyday!

We went to a Tigers Game last night. The kids enjoyed themselves! Popcorn, Hot Dogs, Soda and this timeless picture.

It doesn’t matter the Tiger’s lost. It is the Spirit of the Game that counts!!

I have the privilage to introduce you to an amazing little boy. His name is Samuel and he is almost two years old. His mother Evelyn and I have been exchanging emails and she told me today that Samuel has 6 teeth already and 4 more coming in! He has this beautiful blondish hair and a smile that lights the world! Samuel has a form of dwarfism.

Samuel was born with a form of dwarfism called Thanatophoric Dysplasia.

Thanatophoric Dysplasia or TD is greek for “Death Bearing”.

Samuel is a VERY SPECIAL Boy! He has beating the odds a number of times and continues to bring joy to his mother and father, friends and family.

TD and Achondroplasia are both gene changes in the FGFR3 (Fibroblast growth factor receptor 3).

Evelyn, Samuel’s mother wrote this:

“Samuel was diagnoised with Thanatophoric Dysplaysia/Dwarfism. If your readers read the diagnois they would find it a bit overwhelming. I know I did when I first read it. I wanted to read about a success story when I was pregnant but I couldn’t find a encouraging story. That’s what I want Samuel to be…is an encouragement. He is quite a miracle. I can’t tell you the joy we have in raising this precious son of ours. But, I suspect you understand.
 
As to our feelings, we have had a range of them. From the day we went to find out if we were having a boy or a girl only to be told that something was amiss. The doctor wouldn’t even look at Ralph. Or the day we were told we had “options”. I had a picture of Samuel’s sonogram and he was wiggling in my belly. Needless to say, we did not consider their “option”. Or the day that it was somewhat confirmed by a specialist when I was pregnant that he may have TD. Yet, the peace that passes all understanding guarded our hearts and we were totally at peace.
 
Or when he was in the NICU and we were asked to stay overnight in the hospital because they were concerned. We were Ok, by God’s grace and so was Samuel. Or when we were told he wouldn’t come off the ocillator ….and he did. Or when he was having a hard time coming off the hospital vent onto the home vent. Or when he went to the nursing home for a week. They had a pediatric wing. The nurse called us one morning and asked us if we knew our son turned blue. Yes, we knew.
 
I could go on..and on…and on. We have 24 hour nursing care in our home. That is another book we could write. But through it all God has been totally AWESOME!!. We are so thankful. It brings tears to my eyes in thankfulness. God gently leads those who have young. And He has lead us so well.”

As parents, we just expect to have that uneventful, joyful pregnancy. We arrive at the doctor’s appointment for the ultrasound, anxiously awaiting the image of our baby, only to find the ultrasound tech making that face.

Samuel is my new hero! God has given Samuel a chance to brighten up our world. Not just his families, but mine and yours! 

I have found that through this journey, we have crossed paths with people and families who have given us apart of themselves. Either through a hug, a card or words. People, who some might think are dealt a bad hand or given a bad apple. We weren’t though. It is actually the opposite. We were given a family.  A group of people who are experiencing something that very few will ever get to go through.

I have had to explain to people when they ask about Knoah’s dwarfism, “is it in your family?” That no, it isn’t. It is a genetic mutation. A 1 in 40,000 lottery. A oft, random genetic change. Writing this, it dawned on me. This wasn’t a mutation or random. God planned this, he has given us a whole new world. A chance to see things differently. Nothing about this is random. It is the way he wants it.

Knoah, Adian, Owen, Bryan, Owen W. and Samuel.- It is because of you six boys that your mommies are friends. It is because of you, you have given us a chance to look past ourselves and see a world that we never knew exsisted. It is because of you and your life, that we as people can see, feel, believe and trust in God. Everything he creates is a miracle.  
 

On Saturday we received a card. It reads:

“In God’s house, the lights are always on. When you look up into the night sky and wonder if He is truly there, may every star remind you- He is.”

The inner corner reads: “He will not let you stumble and fall; the one who watches over you…never tires and never sleeps. The Lord himself watches over you!” Psalm 121:3-5

I sit here trying to find the perfect words. Of Thanks? Of Appreciation? Of Awe.

Awe is the right word. I am sincerely and humbly grateful for you thoughtfulness. I just don’t even know if words at this point are powerful enough to express what we are feeling.

Your kindness is overwhelming! Thank You!

I would send you a Thank You card, but you forgot to sign your name!

I have Knoah’s SSI appointment in the morning. I am actually looking forward to this. With the week we have had, I need a little entertainment in my life. SSI wants Knoah to be seen by… deep breath…a psychologist!

Knoah and I had a discussion tonight. This is the list of things he is NOT allowed to tell the doctor:

1. That I hang him upside down by his toes. 2. That I ignored him for those 3.2 seconds the other day while he lay-ed in his bassinet screaming his head off. 3. He can’t not disclose to the psychologist that I make him do tummy time everyday and laugh at him when he tries to crawl and all he does is pump his legs. 4. That I snort at him trying to get him to snort. 5. Most important, he can’t not tell them what I said about them.

During Knoah’s last SSI appointment, the doctor asked me a few things. When she looked over Knoah and examined his arms, she asked me…

“Are his arms normally this short?”

Right, I am still in disbelief. I mean come on. No, he was born with retractable arms and legs. 

“Have they looked at growth hormones?” 

Did you read about Achondroplasia, BEFORE you walked into the room?

“His head is rather large…”

Really, Thank God, his brain is larger than yours…

Seriously, if they are going to deny him, just do it. Don’t make me go to these appointments with people who think they know more about this condition than I do. I had the doctor tell me “I see them ALL the time!” WHAT? There is a town FULL OF DWARFS? Please tell me where they are so we can move there!

Granted, Achondroplasia is the most common form of dwarfism. Statistically, in the City of Monroe, there should be at least one, maybe two living here. I know where one is. In the County of Monroe, there should be at least 5, including Knoah. That is all forms of dwarfism. Most doctor’s are lucky to see one person with Achondroplasia in their entire medical career. Knoah’s pediatrician said that he has seen 4 in his 30+ years. Knoah is the fourth.

I just am frustrated that I have to justify why he deserves SSI. You can tell he has a disability. You can tell he is not average height. Then you have some people who apply for SSI and get it.

So, I will attend this appointment, answer any questions they may have. I will bring all of his hospital records, growth charts and medications. I will then pray they approve him. We are only talking $280.00 a month. Not a lot to some, but to us. That would cover a lot of expenses for him.

A psychologist. A psychologist? Anyone have any idea why a psychologist?

I’ve been told it’s for me. Why? To see if I am making it up? How I am dealing with it? If there is a parent/child bond?

I just hope they have done their homework.

Too bad he isn’t walking, I’d teach him to sing “We represent the Lully Bye League, the Lully Bye League….we wish to welcome you to Munchkinland!” while skipping into the examine room.

Oh, that’s the reason for the psychologist!

We had his pulmonologist appointment this morning. I had him up and dressed at 6:30 this morning.

I knew I was pushing it. He has been sick the last two days. He has that chest cold that is going around. Yesterday was miserable. He wanted to be held all day and just moaned. Sleeping off and on, he seemed uncomfortable. His soft spot was soft, he started to not want to eat, so I gave him little bits of fluid to keep him hydrated. I bought him some Motrin and gave him Pedialyte. I figured, just get us through to this morning.

Well, he has another double ear infection. So he was put on an antibiotic and he has to get three breathing treatments a day for a month. The doctor said with Knoah’s small passage ways, a chest cold will easily land him in the hospital and he would rather see us in his office than in the hospital. I agree!

So, hopefully everything goes well and Knoah recovers quickly. He’s just not himself. Though, it is kinda cute what he does. When Jacob was sick, he wanted to sleep. Hannah was very fussy. Knoah whines and makes these sounds. “Ohhh, Awww, Ohhhh, Awwww”. Like he’s hurting. I feel so bad. Poor baby!!