Yes, Knoah is in Kindergarten…

No, I can’t believe it. It was just yesterday that he was born…just yesterday that we were in the hospital, just yesterday I thought I was going to lose him. Now today he’s in Kindergarten!

The first day was NOT what I had envisioned. He had a HARD time By Hard time, I mean, he started noticing the other kids staring at him. Then the questions started. “Are you a BABY?” asks one little girl.

“NO I AM NOT!” yells Knoah

He then packs his stuff in his bin, grabs it and turns to look at me and says “I want to go home!”

My heart breaks into pieces!

He REFUSED to have his picture taken.

Those were the LONGEST 2 hours I have ever spent…within the last two years. LOL

As of today, he still complains about going to school, but knows he has to go. I hated that he has to experience this, but at the same time, I do not want to recuse him either. I did end up sending letters to school for the parents and staff explaining what Achondroplasia is and how it affects Knoah. I haven’t heard any feed back as of yet. I did also talk to the class about Knoah, saying we don’t call him a baby and that he is the same age as they are just short. They seemed receptive, so we will see how the year progresses.

Jacob started 7th grade and Hannah started 5th…AGH, they have gotten older too quickly!

Sorry for the super duper long vacation, I needed to re-group, clear my head and take care of business.

Knoah…oh, Knoah…he is 4 and a half…5 in his mind, and he will argue the point with you. He has grown in personality so much over the last year. First, his physical proportions:

He is 34 inches tall and weights 33 pounds. He wears a 3T/4T shirt and 18 month pants. He is in a size 7 shoe. His head growth is steady and his legs are very straight. His kyphosis is still very bad and fixated, however it has not hindered his ability to get around.

Things around these parts have been crazy, hectic but it is life and I will still find the beauty in it. The kids are growing up so much and they have all adjusted to Knoah’s dwarfism and no longer see it I believe. They fight, slap, push and kick each other like there’s no tomorrow and they all three are grounded. Jacob is nearly as tall as I am. At 12 years old he is 5′2, 140 pounds…eek. Hannah is still all of 90 pounds but she is about 4′8. Super thin and works it to my dismay. Knoah has been super bossy, temper tantrums galore and will express his displeasure ever chance he gets. I guess that’s a good thing because other people tell me how strong and brave he is…I dont see it as being strong and brave. I see it as being a 4.5 year old being mouthy

See…that look…that’s the Knoah look commmonly given through out the day. Hmmm.

Anyway, I haven’t posted in awhile…shame…

I have been absent because I got a job my close personal friends know what I do, so I won’t share here, but no, it doesn’t involove my un-dressing although I would make the same amount of money lol. I am able to support my family easily and without worries, which is a welcomed change. I enjoy what I do and I am actually good at it. I hope to  make a living by doing so and I am hopeful that in a few years all my hard work pays off

I guess that’s all for now…I will try to post again within the week. I have to brush up on my blogging skills.

Yep, he is. Knoah is 4 years old today! I can hardly believe it! I mean, he’s just grown up out of nowhere….

Everytime I turn around, he’s changing more and more. Everytime I turn around, something else is changing.

Life. A never-ending cycle of changes, expected and unexpected. To re-cap, August…something marked the month my divorce was final. It was a long, rough road, but I emerged stronger, clearer and more understanding. Some may wonder what happened, other’s know the story, or at least my half of the story.

Married life was rough going, especially the last few years. The more I seemed to try, the more I seemed to feel like I was slapped in the face. I admit, I made mistakes. I am not perfect. No one is, but being married is a series of comprimises and understandings. I never thought life would turn out the way it has, I thought I would live a “normal” exsistence…but “What is Normal? right….

I filed for divorce in January of 2010. Several things came to light over the course of the last few months, things that would test anyone’s patience, trust and faith. I had decided I couldn’t do it anymore. See, about 6 years ago, my ex had made friends with a women named Paula. I, placing full faith in him, believing this friendship was just that, a friendship, soon realized there was more that met the eye. In May 2005 I confronted him flat out and asked if he was having an affair with Paula. He said “no”, “don’t be silly” etc and on I moved on. However, it was not without several run-ins with Paula. She “worked” with my ex, this was only because he brought her into his place of employment. I had to swallow whatever doubt I had and live with the fact, they “worked” together.

March 2006…I’m pregnant with Knoah.

*CONFESSION* In my earliest blog posts, you may recall me remarking how upset I was that I was pregnant. Well, it wasn’t because I didn’t want another child. It was because I felt that I was “stupid”. Here I was, pregnant with my then husband’s child, I believed he was/had an affair and I sat pregnant. Yeah, I was NOT HAPPY.

I started having complications with the pregnancy and in November 2006, Knoah was born. He ended up being one of the 3 single greatest things to happen in my life.

Fast forward a few years, Will loses his job, the same job he worked with Paula at, the same Paula that was in the building the day he was fired. We end up losing the house and moved. In 2009, the marriage started taking it;s downward spiral and there was a series of issues which lead me to ask Will to move out. We, as a family went to New York for the Little People of America Convention. I, was hoping this would help bring us closer, it instead lead us further apart. August 4, was our 12 year Anniversary. On August 12, 2009, Will confessed he did infact have an affair with Paula. Now, during all this, Paula ended up moving away, Oklahoma and she was out of our lives or so I thought.

It came to light that Will and Paula had re-connected and had been re-kindling their relationship through email and telephone.

I had had it. Enough was enough. I basically called Paula and told her if she wanted my husband she could have him and the day after Christmas, I told Will I wanted a divorce.

Life in those first few months we stressful. Will wasn’t making the best decisions. He totalled the family vehicle and on March 14, 2010, during a visitation pick-up, he assaulted me and broke my wrist. Whatever can be said. It was an accident, he didn’t mean it, whatever. It does not change the fact that he laid hands on me and caused me physical harm. I filed a police report and he was charged.

This is the gist of the story, obviously, there a ton more, but why re-hash it, ya  know. I never, again claimed to be perfect and before something else is said about not giving the full story, yes, I too had had an affair in the early part of our marriage. No excuses. It was wrong. I was 24 and it hurt a lot of people. Lesson learned.

Today, I am seeing someone. He is sweet, caring, gentle and above all, cares for me. The kids are handling everything the best thay can and with Christmas coming, thier biggest complaint is “Christmas is going to SUCK” because they know mom doesn’t have a lot of money to go all out for presents, but I don’t think they will be too heartbroken, I have done the best I could.

Will, I have learned, is in a serious relationship. He is facing some big life changes and “unexpected, unplanned” surprises…

I wish him nothing but the best and a lifetime of happiness as he faces this new chapter in his life. I just hope the new family doesn’t replace the three kids he already has.

So, there it is. I guess if you wanted to know something you can ask, no saying I will give you an answer, but it will help me to clarify any lingering questions one may end up having.

Ok then…guess I will go now…Knoah has to get ready for pre-school…hehe!

So much has happened over the last year and without bombarding you or myself to re-tell it all at once I will gradually share bits and pieces of our life as we have now come to know it. I don’t know why and won’t question it, but I knew, when I was ready to share and to blog about it, I would…I just didn’t think it would happen at 3 in the morning on a Tuesday. Guess that’s just they way it goes.

In brief, it is 3am and while the rest of the world sleeps, I am awake. I was woken by Knoah saying “Momma…” I simply asked him “Do you have to pee?” He responded with “Yes!” Ok then…it’s to the bathroom we go.

One of the things that I was concerned with when we had Knoah, was how my marriage would fair. I never blogged about it and I will find the article I read, but it basically stated that nearly half the marriages that had a child introduced to the family with a disability will fail. It was never really specific as to the reason why, but it basically summoned it up to stress, the financial issue and other reasons. We all know, if you had been a regular follower of Knoah’s ARC that, financially, we were never in the best position. When Will lost his job, everything else took a downward spiral into the great abyss of hell…

Making the decision to give up the house, while painful, was the least of my concerns. We had a home we could make our own and while it wasn’t my grand Victorian, it would do. Things never turn out the way we ever envision them too, hence the original blog name “What Is Normal?”

In short, although not officially signed yet, on June 23, 2010, Will and I attended our final divorce proceedings.

I will share my reasons for asking for the divorce, as I see it. I will share Will’s blog and the way he sees it and I will share how the children are handling it. The good, the bad and the dirty.

So, there you have it. I stopped blogging during that time because I know how I am. Blogging is a way for me to vent, share my feelings and make sense of my surrounding. I’m not going to say I kept it bottled up, I just didn’t share it here. I have a wonderful support network consisting of people around me, both near and afar! Although, I don’t routinely call on them when I have a problem, they know when I need them.

I don’t really know right now what else to say. I guess just that…I think that’s a fair start, don’t you?

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children.

Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger. “Armstrong, Beth; son; patron saint, Matthew. “Forrest, Marjorie; daughter; patron saint, Cecelia. “Rudledge, Carrie; twins; patron saint…. give her Gerard. He’s used to profanity.

” Finally, he passes a name to an angel and smiles, “Give her a handicapped child.” The angel is curious. “Why this one, God? She’s so happy.” “Exactly,” smiles God. “Could I give a handicapped child a mother who does not know laughter? That would be cruel.”

“But has she patience?” asks the angel.

“I don’t want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she’ll handle it.” “I watched her today. She has that feeling of self and independence. She’ll have to teach the child to live in her world and that’s not going to be easy.”

“But, Lord, I don’t think she even believes in you.” God smiles. “No matter. I can fix that. This one is perfect. She has just enough selfishness.”

The angel gasps, “Selfishness? Is that a virtue?”

God nods. “If she can’t separate herself from the child occasionally, she’ll never survive. Yes, there is a woman I will bless with a child less then perfect. She doesn’t realize it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says “Momma” for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations.”

“I will permit her to see clearly the things I see—ignorance, cruelty, prejudice— and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side.”

“And what about her patron saint?” asks the angel, his pen poised in midair. God smiles. “A mirror will suffice.”

While in NYC, I had several opportunities to participate in discussions that affect LPA and the dwarfism community.

I did not set out to become an advocate, more likely, I became one because I was thrusted into a world I knew nothing about with the birth of my son, Knoah.

During one of our Advocacy Meetings, we engaged in a discussion regarding a “hot topic” surrounding LPA and past historical events. We also discussed the “M” word or Midget for those unfamiliar with the reason it is now referred to as a letter in parentheses.

When “Celebrity Apprentice” aired April 5, 2009, my husband and I saw the episode. We typically don’t watch this sort of reality TV, but when we tuned in and watched the first few minutes, we knew it was not going to be good.

Repeatedly, contestants were asked to come up with a “viral video“. A video that would prompt wide spread viewing and conversation. Well, they accomplished their goal.

Using All’s Small and Mighty as their theme both groups came up with the idea to use Little People as actors. This was not an issue, it was the fact that both groups referred to the LP actors as “Midgets”. Over and over again, this word was used throughout the show, even though it was mentioned that using such a word would be considered offensive. Yet, they continued.

As a parent of a little person, I am offended on several levels. One, doesn’t a network have a responsibility to the general public to air material that is suitable for all viewing audiences? Did NBC cross the lines by airing the show?

Simply put, I am just offended that they would refer to a Little Person as a “Midget”.

To understand, lets look back into the history of the word to see how it has evolved.

Throughout history, little people have been referred to as midgets, dwarfs, circus acts,
munchkins, oompa loompas, mini-me, tiny people, and many more comments that some little
people may find offending. In the 19th century, midget was a medical term referring to an
extremely short but normally- proportioned person and was used in contrast to dwarf, which
denoted disproportionate shortness. Like many other older medical terms, as it became part of
popular language, it was usually used in a pejorative sense. When applied to a person who is
very short, midget is now often considered offensive.

Dwarf is an ancient word dating back many centuries. In the unabridged Oxford English Dictionary
(OED), the meaning of dwarf is straightforward and neutral: “A human being very much below the
ordinary stature or size.” The dictionary traces uses of the word as far back as the year 700. By
contrast, midget was coined only in 1865, and its definition goes to the heart of why it is so deeply
unpopular: “An extremely small person; spec. such a person publicly exhibited as a curiosity.” In
other words, it’s impossible to think about the word midget without placing it within the context of
the freak show, of the circus, of Midget Villages, and of Munchkins traipsing about the Land of Oz.
Then, too, the root of midget is midge. And as the short-statured artist Jacki Clipsham puts it, “A
midge is a small insect that can be killed with impunity.”

For some reason, midget has another meaning as well. It refers only to a dwarf whose limbs are
in the same proportion to his body as an average-size person’s–generally, to people whose short
stature is the result of a hormonal deficiency rather than a genetic bone anomaly, as is the case
with achondroplasia and other skeletal dysplasias. Because midget was coined at the height of
P. T. Barnum’s career, and because his most famous performers, Charles Stratton and Lavinia
Warren, were proportionate dwarfs, it is often assumed that it was Barnum himself who came up
with the word. There is, however, no evidence for that. The word midget did not appear anywhere
in Barnum’s 1855 autobiography, The Life of P. T. Barnum. In fact, he referred to Stratton
repeatedly as a “dwarf.”

The OED is cryptic as to the 1865 origin of midget, attributing it to “W. Cornw. Words in Jrnl. R.
Inst. Cornw.” Thanks a lot! But the dictionary entry also notes that, in 1869, it was used specifically
to refer to a small person in Harriet Beecher Stowe’s novel Old Town Folks: “Now you know
Parson Kendall’s a little midget of a man.” Stowe’s usage may, in fact, be the true origin of midget.

As to Barnum, to the best of my knowledge he did not coin the term “midget” &, as you know, used
the word “dwarf” when referring to the Thumbs, Nutt, &c. I have seen him use the word “midget” in
a few of his letters written toward the end of his life–the 1880s–but he must have picked it up from
someone else. He was a great reader, of course, & knew the Beechers.

The deep unpopularity of the M-word is a fairly recent phenomenon. Indeed, in the freak shows of
the nineteenth and early twentieth centuries, dwarf had a more negative connotation than midget,
according to the historian Robert Bogdan, because dwarfs were farther down the pecking order,
and were assigned more degrading roles:

The terms midget and dwarf had important social meaning in the amusement world. Small
people who were well proportioned–”perfect humans in miniature”–in particular coveted the term
midget for themselves as a way of disaffiliating from the more physically deformed dwarf exhibits.
For midgets, who were typically cast in the high aggrandized mode, to be called a “dwarf” was like
being called a “child”: it was an insult. “Dwarfs” were associated with exotic freak or circus clown
roles, and these roles “midgets” shunned.

As we have seen, the word had not fallen into disfavor even by 1957, when Billy Barty held the first
get-together for dwarfs under the name “Midgets of America.” And when it turned out that many of
the people who showed up in Reno were disproportionate, Barty’s solution was to change the
name to Little People of America–not because midget was considered offensive, but because
Barty wanted a name that both proportionate and disproportionate members, midgets and
dwarfs, could accept. Soon, little people became the preferred term.

http://www.shortentertainment.biz/LittlePeopleHistory.html

So, as far back as we can see the word “Midget” has been used medically and descriptively to describe a little person. So what’s the problem?

The problem is, that as times change, so do words. In the 50’s and 60’s as the term Midget shifted over to Little people, it also became unacceptable to call blacks Niggers or Coloreds.

According to Websters the term was commonly used to refer to a person a short stature who was physically proportionate. However, over time, people within the general public began using this word in a manner to degrade someone IE: “Mental Midget” meaning less than. You can come up with all sort of terms and phrases that that demean and belittle a person if you choose, so a word no longer becomes descriptive but a pejorative.

Medically, this word is still used to describe a person of short stature who is physically proportionate.

Following the airing of “Celebrity Apprentice” an outcry was heard from people within the dwarfism community.

Newspapers across the country started to pick on the press release and the public, voiced their opinions. Even Perez Hilton got into it and voiced his opinion of “Fight on!”

Then you look at comment by readers….

Having a child that the public would call a Midget I am curious as to why a person would refer to another person in so demeaning of a way. I haven’t done it. I wouldn’t look at a person with Cerebral Palsy and call them a Retard. I wouldn’t look at a Gay man and call him a Fag. I wouldn’t even look at someone of my own race and call them a Nigger, but I have been called it.

“Sticks and Stones may brake my bones, but names will never hurt me”….

No, your right, they are only words and we give them power if we let them.

Then we have a celebrity like Cheryl Burke who openly says “I gave you the whole Midget thing” when asked about her comments about Verne Troyer and a certain video that was released.

Why do people feel it’s “okay” to make fun of Little People? Why do people feel that they can call someone any old thing they want because it’s “funny”?

In a recent Salon.com interview I participated in, Lynn Harris asked me why I compare the “N” word to the “M” word and I told her.

Being a Bi-racial women, who father is black and mother is white, I am all too familiar with being called derogatory names. On one occasion, right before the 2008 LPA National Conference, my father came over for a visit and asked what we were doing. We were packing for the National in Detroit, Michigan. When I told him we were going to spend a week in Detroit for LPA he says “Oh, your going to spend the week with a bunch of Midgets”…..my mouth hit the floor! I was stunned.

I, internalized what I had just heard and was seeing. My father, a 6 foot 4 black man, the stereotypical man who was not invited over for dinner when my parent’s met. I asked him why he would say that. He, embarrassed, looked at me as asked, “isn’t that what their called?” I replied calmly and said “No, they are Little People, more importantly, they have names just like your grandson.”

After talking, I soon realized that in the era he grew up in it was acceptable to call a Little Person a Midget, as was calling a black person a Nigger. So, I started equating the “N” word with the “M” word.

Just because it was acceptable doesn’t mean it still is.

Calling a Little Person the “M” word is demeaning, belittling and objectifies the person. It casts the aura that Little People are not real people. They are to be made fun of, laughed and pointed at. Joked about.

My son is NONE of those things. He is a person, who as he grows will come to understand his feelings and will become more aware of the world around him.

The next time you pass a Little Person on the street, don’t stop and stare, don’t stop and ask for a picture, because they are not novelties to be shared with friends, they are men, women and children, who have jobs, have families, make a living just like you do.

A Little Person maybe lacking in height, but most were given something the rest of us were not. Understanding of differences and acceptance of all people, short, tall, black or white.

This is my son Knoah and that is what I would like you to call him.

One of the issues of having a child with a disability is making sure to have insurance to cover the massive medical tests and bills that come with such a child.

During Knoah’s first hospital confinement, in the flurry of paperwork, I filled out paperwork to get Knoah Medicaid. I don’t remember doing it, but he does have it.

So, when Will became unemployed, we also became uninsured. Although, to be fair, Will was told he would have insurance until the end of September. Then the having insurance ended up being a part of the “Release” they want him to sign. So, effectively, we are uninsured.

Illness and catastrophic medical crisis’s as most of us know can occur at anytime. One moment your breezing along life, then next your sitting in the emergency room waiting to be admitted to the hospital for one reason or another. All the specialists and doctor’s your child has seen in the past vanish and the torment of having to re-educate new ones seem daunting and cruel.

Now this raises the question, if you or your child is uninsured, what do you do?

Apply for Medicaid. Medicaid is a Federally and State supported insurance program that helps medically needy individuals attain the medical support they need.

Good health is important to everyone. If you can’t afford to pay for medical care right now, Medicaid can make it possible for you to get the care that you need so that you can get healthy – and stay healthy.

To find out if you or your child is eligible for Medicaid, please visit this website.

To find out what programs your state offers, click here.

In Knoah’s case, he is covered by Medicaid and State Children’s Health Insurance Program (SCHIP).

Having at one time, three insurance policies, what our primary didn’t cover, it would fall to Medicaid and what Medicaid didn’t cover, SCHIP did. However, there are pitfalls to this.

In the case of Knoah TLSO brace. Our insurance would only cover 50% of the brace, which left approximately $1400.00 to be paid. Since Medicaid doesn’t cover Orthotics, SCHIP covered the rest, leaving us with no out of pocket expenses.

This is all fine and well, but where do you start? You need to visit your local Department of Human Services or DHS or Department of Health and Human Services to fill out the paperwork. From their they will guide you through the steps of the information you need to bring or supply them with to help them figure out what services your eligible for.

Now, for my rant…

I am SO not looking forward to finding new doctor’s for Knoah. Medicaid should cover most of his original doctor’s, but what if they don’t? I am going to project here:

Imagine…walking into the examination room, waiting for the doctor to come in. After what seems to be hours, they walk in. The examination starts with routine questions, the first of which is, “so, his chart says he has Ach..On……

Me: Achondroplasia

Doctor: Right, what exactly is that?

Me: Blank stare

Me: Explains Achondroplasia and physical features

Doctor: Yes, I have read about that, blah….

Exam starts

Doctor: His head is rather large, has anyone ever mentioned Hydrocephulas?

Me: Tilting head to the side, determining what I want to say:

A. “Did you actually hear anything I just said or are you assuming just because I’m only a “mom” that I have no clue about my child’s condition or what complications can occur?”

B. “Hydro…what? He’s 21 months old, of coarse I wouldn’t let him participate in a sport like that! That sounds dangerous! He can’t even swin yet!”

Me, wanting to opt for a refined version of the two…

Me: Yes, we know but according to his Geneticist’s his head is average amoung achons. I do have a question though, you don’t think water entered his ears and is now stuck in his head, do you?

Oh the TERROR of having these conversations again!

Not fun!

Several hours later….Well, there is good news, I just got off the phone with Dr. Pauli’s assistant, Casey and we are good to go!!!

WOO-HOO!! At least one of his doctor’s will not change! Such a relief!

Candi left a comment that I think will be helpful to some readers:

One thing I would add is that it seems that if you are anywhere near a teaching hospital, they will usually help you out and care for your child when achondroplasia is diagnosed whether you have the ability to pay or not. It seems that the doctors that really know about dwarfism and learn about the condition truly care that these kids get what they need above all else, including payments. There can be a little difficulty when it comes to testing, etc…because unlike doctors, hospitals want their money….but the doctors themselves seem to have no problem helping these kids with what they need. So, if your readers feel they are at a dead end and can’t seem to get help – find a teaching hospital with a doctor who treats kids with dwarfism….even if you have to drive a hundred miles to do it. They will find a way to help you.

Candi
YaYa to Bryan

I was selected by Melissa Swartley who writes 3 Pretty Girls. THANK YOU!!!

My job today is to write 7 things most people don’t know about me. Well, most people know a lot about me because I usually share everything anyways, but I will try.

1. I currently have 8 tattoos and 2 piercings. I tend to lend myself to the “Alternative” lifestyle if you will. My favorite radio station is 89X and I have listened to it for the past 20 some years…I know this dates me I would have my hair crazy colors like blue, pink, and bright red of society wouldn’t look at me funny.

2. I am addicted to my phone. It is said it is an extention of my hand, which most times it is. I have a G1 and think it’s the GREATEST phone out there,

3. My favorite color is black. I most of the time wear a tee-shirt, jeans and a hoodie, along with a pair of Doc. Marten’s. I LOVE Mustang’s and they are the only cars I can force myself to buy, although I do see this changing soon . The kids are getting bigger and the car is getting smaller.

4. I HATE cold weather. I HATE the snow and understand why I am in Michigan. My ancestors have been here for hundreds of years. I am part Indian and the tribe my family comes from is the Potawatomi, which is native to southwest Michigan. That doesn’t mean my blood is. The blood running thru my vains is all southern.

5. I am taking 14 credit hours this semester, which now seems crazy. Luckily, one of my classes is a film class, so we watch movies. YEAH!

6. I live on coffee. I have to have it every day, all day.

7. Since October 2009 I have lost approximately 23 pounds!!

So, I have to select 7 bloggers to nominate and will do so now.

They are:

Destiny and Rose

Paula

Kasia

Jeff

Amy

Andrea

Laura

Rules are you must post 7 things about you that most people don’t know and provide a link back to this blog.

The verdict: It went fairly well….not as many issues as previous times, however recurrent issues are still present and new ones popped up.

So, Knoah’s Good Report!

1. His legs are still straight! YEAH!!! Typically some children with Achondroplasia will have bowing of the lower legs. This is due in part to the Tibia and Fibula. The Tibia, while not directly affected by Achondroplasia is still shorter in an LP than an AH person. The Fibula, continues to grow at a “normal” pace. At the point when the Tibia and Fibula start to pass each other in length, the Fibula starts to bow and causes the Tibia to bow along with it. The usual fix to this is surgery to brake the bones, set them in pins and rods to straighten out the legs.

So, no issues there!

2. Head size is good. He is at 56.7 cms, which puts him on the Achon growth chart in the 65% percentile. Which is good! Hopefully his head size has started to slow in growth.

3. His weight is good. He is 30 lbs, which still puts him on the smaller end of the spectrum, but compared to weight and height he is just under the 50% percentile, so he has caught up a lot!

Now, issues, which still remain plentiful…

1. Wrists: Knoah’s wrists are still very flexiable. Which means you can take his hand and bend it back toward his forearm and have the back of his hand touch his arm….BLAH. Dr. Pauli said that while this can happen it’s uncommon especially at Knoah’s age. We have to monitor this as he gets older and as he enters school. With writing, this can cause an issue with fatique of the wrists and hands. We may have to look at accomdedating him with less writing assignemnts to prevent the stress on his wrists. Worst case senerio is we can brace his wrists to prevent them from over extending.

2. Agh! He just had sugery June 22 to have his T-Tubes or ear tubes replaced for the 2nd time. We know get to do it again. One of then have already fallen out and the other is on it’s way….Nice.

3. Breathing. He is a snorter. Dr. Pauli said it at our first visit and he still hasn’t grown out of it. Even with his Tonsils removed and Adenoides removed twice, he is still a very loud sleeper. Doctor Pauli said that if his breathing starts to become worse or I start noticing an increase in his sleep apnea, to obviously get him into to have a sleep study, but for right now, as long as his sleep is not affected to not worry. His coloring has looked very good and I haven’t has any concerns other than the Achons snore, which can be quite loud.

4. Finally, his back. Agh. The “short version”. We can continue bracing therapy, with the expeectation that to see any type of measurable improvement, he will be in a brace at minimum another 2 to 3 years. I explained that *if* I saw some improvement during the last three bracing therapies, I would be more apt to continue bracing. However, with the last X-ray only showing a correction of 2 degrees, I fel I am tourturing him more than helping him. Even if we continue to brace there is no guarentee he will avoid surgery. If we do not brace, as he is doing quite fine mobility wise, he will have surgery by the time he’s 8. So, we have some decisions to make. His curve right now is hovering about 68 degrees or so with some correction of 20 degrees lying on his tummy. Personally, I think that’s the way to go, but I will leave that for another time….

So, other than that, Knoah is Knoah, just as ornary, just as bossy, just as adorable!