Well, the two babies met. It was so much fun! A.H. and Knoah had a blast, or I should say, their parents had a good time! We had dinner, talked, stripped the boys down to thier diapers to compare limbs. LOL. A.H. is longer than Knoah but Knoah weighs two pounds more. A.H. has this long red hair and pretty blue eyes. He is adorable. His parents are also going up to Grand Rapids for a doctor’s appointment.

That is where we are now. We left today at 1:00pm or so and we got up here at about 6. We made a detour to the hospital in Dearborn to pick up some records. We are staying at a place called Renucci Hospitality House. It is for families who have to travel further than 30 miles and it only costs $25.00. It is amazing! The rooms are like hotel rooms and they have a fully stocked kitchen, playroom, computer rooms, laundry rooms. Just wonderful. It is 1 am so I will write more at a later date. Will has Knoah and is getting him to sleep. I am lucky to have him for a husband. He loves his kids, he loves me, he is special. More later!!

I am excited!! I have to share. On Saturday, I am meeting another mom who son also had Achondroplasia! She and her family are coming up here to visit and have dinner. Her son is 14 weeks old and we meet through the POLP group. She lives in Ohio, not to far from us and we are going to get the boys together. Not so much for their benefit right now as it is ours, but we want them to grow up together. it will be nice to have Knoah befriend another Achon like himself. He won’t feel “alone”. I know he will have AH (average height) friends, but it won’t be the same as having a LP (little person) to hang out with. We are getting him involved with LPA, so he will meet people there, but he will have a LP playmate. I am so excited!! I will post pics when we get them!!!

 YEAH KNOAH!!

It is amazing how quickly and without warning life can change. I never really gave people with disabilities any additional thought other than what the may go through in life and if they needed help while out in public. I was brought up to hold the door open or help a person reach something on the top shelf if they are in a wheelchair. I never really sat down to really think. I got a chance to today. I am now fighting for basic things I didn’t think about before.

Like medical bills, before they were just paid. Now running into tens of thousands of dollars, I had to find extra help and insurance to help cover everything.

Running to the store during the day, I would just pop into the car and go. Now I have to prepare, do I have everything for Knoah, is it too cold? Is his oxygen tank filled, am I going to be able to fit him in the cart with the groceries? If not, can I handle two carts?

There are functions my husband attends for his job, naturally he wants me to attend too. Now, I can’t. I don’t have a babysitter. Someone qualified to watch Knoah. i have become a 24 hour nurse to my son. I listen to each breath, making sure it’s not raspy or wheezy. I am stressing right now because he is getting a cold…

I am going to apply for a handicap parking tag for him. Obviously, it is to my benefit. Because of his disability, I am the the one doing all the work, he just chills in his carseat. It makes for a long trip to Meijier if I have to park out in the lot. Praying I stumble across a cart before I hit the store.

I hear people with scanners, checking prices, I panic and stop to make sure it’s not his monitor. I haven’t been able to think about anything else other than his needs.

His Kyphosis is getting worse, it’s almost like his back is curving. I hope not, because that means a brace or worse, surgrey. I am hoping it’s nothing. Achon kids have this issue. I am careful with how he is picked up, held, placed. They only time he is up right is in his carseat and that could even be an issue.

Always think ahead. Always prepare for the worst, that way when it doesn’t happen, you can breath.

You never know what life will give you. It is how you react to it that matters.

Some people born toxic or do their personalities allow them to be?

Some people think being mean and nasty endure them to others like themselves?

Some people change their perspectives without really knowing someone?

People unfortunately make assumptions and judgements on others without justification or truth. You challenge their authority or question their motives and they damn you. They do it to you and expect you to sit around and take it. How can one get around in life and feel like they can do no wrong? That they can put down, abuse and disregard another person as if they were common trash? What make a person feel superior to another simply because of status or position?

I feel sorry for these kinds of people, they have no clue what life is about.

I know it seems hard to understand or you may think I am nuts, but I really do think I am one of the lucky ones. As far as how much we have been blessed. I have a great family. My mother, father, grandmother (affectionately known as Meme), aunts and uncles and yes sister and brother.

Most people are lucky if they have a family who can get together on holiday’s without someone ending up in jail. I have never experienced this, but I hear it happens often. My family is so kind and generous. They are thoughtful and most of all, loving. They love me and my family. They love my children. They accept my children without reservations. They know the little quirks the kids have. They know Jacob is sweet and sensitive. Getting his heartbroken is an easy thing to do and they approach him as such. Hannah, unruly and wild, talk to her about her loves and she’s your best friend. Or you can let her use your good check writing pen and she’ll be as quiet as a bee. Knoah, shower him with kisses and he’ll let you hold him all day, just don’t divert your attention away from him and his temper will be kept under wraps.

My family accepts us and helps us out during our good times and bad. We have to drive up to Grand Rapids for Knoah’s appointment on the 1st. We don’t have alot of money to do the things we need to do, so my family helps us. Without asking, they slip us a check and say “It’s not alot but it will help with gas”. In my world, $75.00 is alot. They don’t have to do these things. I don’t ask them to. I don’t even want them too, but they do. That money will not only fill up the tank with gas, it will also pay for our lodging and give us enough to eat at McDonald’s. A trip I am budgeting money for now will only cost us $40.00. What a blessing.

My family, loves us so much. My mom is having Jacob spend the night. Not because I want her to keep him, but because she wants him. She is upset and saddened that she can’t babysit Knoah. They only people who can stay with him are those certified in CPR. Oh, I forgot to tell you, With Knoah being an the apnea monitor, one of the condition in bringing him home is that we (Will and I) had to take a CPR class. Not something parent’s usually think of when bringing home a baby. So right now, it’s me and Will as Knoah’s full time caregivers. But, that’s okay. My family takes the kids, to give me a “break”. Even though I am still caring for a child, it gives my ears a break from “Mommy, mom, MOM, Hannah, Jacob, WAAAAAA!!! Tell him, Get her….” SMILE

I am lucky, I wouldn’t trade my life for anyone’s. God has allowed my to feel being human. He has allowed me to know love, heartbreak, give life, loss, fear and miracles.

Tick, Tick, Tick, Tick…Tick, Tick………..Tick

This is what I fall alseep listening too. Most people are comforted by sounds of waterfalls, rain, wind. I fall asleep to Knoah’s apnea monitor. It is the sound of his life, his movement while sleeping I am comforted by. Tick, Tick, Tick all night long. His apnea monitor is set to alarm after twenty seconds of no movement. No movement means no breathing.

I obviously have a problem falling asleep on my own. I am afraid to fall asleep. I try to stay up as long as I can to catch a pause in the ticking. My rational is if I can catch it that much sooner, he will be okay that much sooner. Apnea of Infancy is his Dx. He is being followed by a Pulmonologist, GI specialist and Neruosurgeon. So many doctor’s for one little baby. Yet, I still look at him and wonder who wouldn’t want him.

Will and I have talked about about the idea of more kids. He was against anymore, I think because he fears getting older and not being able to be there for them as he ages. Also the idea of having to provide for the family he has and then adding another life in this, I think scares him. I didn’t want anymore. When we found out we were pregnant, I was less than thrilled. I was more honestly, highly upset. Then over time, I accepted it and began to get excited. The trauma of the pregnancy and birth certainly had a different affect on me that what most people would have. Instead of saying NO MORE CHILDREN. I said, I can’t say no. Life is precious to me. My children are miracles to me. Each one is special. I can’t say no. If my life was meant to provide life to ten more kids, so be it. However, I also realize that my body couldn’t physically handle another pregnancy. So we are going to do the next best thing. Adoption.

We are going to look at adopting a child, bu not any child, a child affected with dwarfism. I still am just dumb founded to know parents would not want a child with dwarfism. I look at Knoah and wonder what they think of us for having him. With so many children out there needing homes and ten times as many children with special needs, I am going to adopt a dwarf. They may not be an infant, but a younger child. Maybe 1 or 2. We will see. I am beginning to believe my purpose in life was to be a mother. Nothing spectacular, just a mom. A mom to a child with dwarfism. An advocate to providing them with a chance at life. I am excited, but I know. Let’s get Knoah grown first.

He is growing! He weighs 11 lbs 4 ounces and is 20 inches long now. He is 8 weeks today! Unbelieveable. My little man is a pudgy man. So cute. So loved.

Breathe…

Here he is! A face anyone could love! Knoah is doing well. Lucky for me and him, we haven’t had any alarms since we came home. I am still nervous being home alone with him and it is quite a trip to actually go out into public. I have his oxygen, his monitor, him and his carseat and a diaper bag. That’s if it’s just us, if I have Jacob and Hannah, add another 75 pounds of stuff to carry.

I am so greatful to God that Knoah is with us. I won’t complain.

I want to Thank everyone who has prayed for him and our family over the last several weeks. I am stunned and amazed that my family means so much to people. In a world where it seems that people are out only for themselves, I am reassured and humbled that kindness and understanding still reigns.

Oh, I forgot, I have the pram. It is the coolest looking stroller I have ever seen in my entire life. Understand, most people would look at it and say “I am NOT putting my child in that ugly thing”. I know my sister would. It is this brown, mustered yellow, olive, plaid thing. It is what I am calling RETRO. It is in beautiful condition, I don’t think it has ever been used by a baby. It is from the late 60’s, early 70’s. Or as my dad referred to it today, one of the old one’s. I was born in the 70’s, does he consider me old? Hum. I will post a picture of it, I love it. Knoah is going to be the hippest infant around! 

This is a post I made to POLP2, although I use the word dwarfism, change it to disability and it is a starting primer for those parents just entering the world of their child’s disability, whatever that maybe!

Just starting down this road, I have ben forced to look at things
through from a different perspective. My hope is to give new parents
somethings to consider when experiencing the medical aspects of
dwarfism or any disablity concerning their children. Although I am just over 24 hours of
being home with Knoah, I have begun to reflect on my experience.

ALWAYS follow your gut instinct: You know your children. You know what
they do and how they act. If something is not right, you should seek
medical attention immediately. Even if it turns out to be nothing,
don’t ever chance it. You may not get another oppurtunity.

Read everything about your child’s dwarfism: Find and contact a doctor
who specializes in dwarfism. Ask for medical journals and articles that
pertain to your child’s genetic condition. Make copies for your
peditrician. Insist they read it. Look for information that deals with
growth and charting, devolopment, cognitive and devolopmental. Look for
community resources for additional information IE, Health Department,
Non-Profits, Medical Centers. Your local Health Department and
Department of Human Services or FIA can help determine if your eligible
for additional money or help with medical expenses and daily living
expenses. Also consider Social Security benefits.

If you experience a medical emergency: Do NOT hesitate to give the
hosptial doctor’s information regarding your child’s dwarfism. Do NOT
let them discount it simply because the think it has nothing to do with
why you are their. Explain to them that they cannot discard it until
they rule that out as a cause. If your doctor’s are not familiar with
your child’s dwarfism, insist they consult a doctor who is. Do not take
No for an answer.

Know that your are not trying to cause trouble: You are protecting your
child. This is YOUR child. Your brought them into the world for a
reason and you are simply trying to keep them here. Never feel guilty
for being an advocate.

Find a doctor who specializes in dwarfism: Contact a Bone Dysplasia
clinic and make an appointment to have a doctor follow your child’s
progress. You can keep your peditrician and have a specialist
concerning your child. One deals with colds, the other deals with bones.

Find a local LPA group in your state: Get active! Not only will you be
getting help for yourself and your family, but you may just help
someone in the future.

More to come, I am just trying to stay awake, it’s only 2:30am. You
know, trying not to freak out being home!

Tonya- A Very tired mom to Knoah (achon), who is only 8 weeks and
determined to give his mother a heart attack, before being a
heartbreaker to all the girls of the world. SIGH, Breath…

We are home now. I don’t know how I feel about that yet. Knoah is on 24 hour oxygen, a apnea monitor, Zantac for possible reflux and Caffine for the central apnea. Yes, in the morning when I get my cup of coffee, Knoah gets his does of caffine. It helps stimulate his central nervous system to remember to breath. With central apnea, Knoah forgets to breath. Not the most comforting thought, huh.

I have yet to really stop to think about what my life has been like the last 7 days. I have lived at the Children’s hospital and am missing the nurses. I am alone with him. I have my husband and family to help me but, it’s not the same. In the hospital, he was safe. He was close to help. Here, it is me, with Knoah.

Breath…

Apparent Life-Threatening Event (ALTE)–An episode that is frightening to the observer and that is characterized by some combination of apnea (central or occasionally obstructive), color change (usually cyanotic or pallid but occasionally erythematous or plethoric), marked change in muscle tone (usually marked limpness), choking, or gagging. In some cases, the observer fears that the infant has died. Previously used terminology such as “aborted crib death” or “near-miss SIDS” should be abandoned because it implies a possibly misleadingly close association between this type of spell and SIDS.

This decribes what happen with Knoah. So far we are doing well. He has been off the CPAP for over twelve hours and is breathing room air. They did the MRI on Monday and they had to sedate him. He sleep for hours. I tried to wake him to feed him, but he didn’t couldn’t come out of it.

What we know so far is all of his labs and a majority of his tests have come back normal…there’s that word. Or negative. The neruosurgeon read his CT and MRI and we know Knoah has a subdermal hemotoma or blood on the brain. This was caused from his tramatic birth. They said that if this is causing the problem, than it’s likely to be because of the pressure and it is causing Knoah to have seizures, which could cause the apnea. If it is causing a problem, he may need surgrey to remove the blood.

We do know he is coming home on an apnea monitor. It’s a portable machine that has leads attached to Knoah and it detects breathing and heart rhytems. If Knoah stops breathing again, an alarm will sound. It is very loud and very scary.

I don’t think it has hit me just yet that we almost lost our son. The thought is so remote, so unfathomable, that I have yet to break down and cry. I have had moments that have brought tears to my eyes, but losing it emotionally, I am waiting. I am still in shock and I am sure it doesn’t help that I am functioning on the bare minimum. I am functioning on the most primitive mode right now.

Eat-enough to stay concious

Sleep-Only enough to still hear everything around me

Breath-Automatic, I wish I could for Knoah also.