A question I hear a lot is “Is Achondroplasia or Dwarfism a disability?”

The easy answer to this is YES! Usually when a parent or guardian asks this, it is usually because they are interested in filing for Social Security Income (SSI) for their child.

Under Federal guidelines, Achondroplasia, is considered a disability and a person with Achondroplasia is eligible for SSI.

In our case, because Knoah was suspected to have Achondroplasia in-utero, I filed for his SSI when he was a month old. I did so early because I had heard it can take years to get approved.

I contacted my local Social Security office to set up an appointment. When the appointment came around, I had to bring his birth certificate, Social Security card, information about his doctor’s and information about his diagnosis. Then they contacted me for the doctor’s appointment’s.

Knoah was approved for SSI some 6 months after we applied. Most people hear this and their mouths drop open. “How?” “I have applied twice and have turned down both times. What did you do?”

What I did was this, I read everything about Achondroplasia I could get my hands on. On the application it will ask for medical complications. Most people will list their specific complications, which in reality may not mean a whole lot. However, if you list general complications associated with your disability, it puts a different spin on things. For instance, with Achondroplasia, these are “common” complications:

1. Short Stature of the arms and legs, falls below the 2% on growth charts
2. Hydrocephalus
3. Compression of the Foreman Magnum, requiring decompression surgery
4. Apnea/Obstructive Sleep Apnea, requiring removal of Tonsils and Adenoids
5. Kyphosis, which can require body casting/bracing and/or surgery to remove vertebra to straighten out the spine
6. Hearing Loss due to accumulation of fluid in the inner ear, requiring ear tubes to be placed through surgery
7. Medically Fragile, requires closer intervention during times of colds, sinus infections, and general illnesses. Typical illnesses can settle in the lungs impairing the ability to breath appropriately

These are just a few things I can think of off the top of my head.

It is important to list these items, regardless if your child has actually experienced them. These are common complications associated with Achondroplasia.

If your child NEVERS experiences these, fantastic! Your one of the lucky ones! If your child has or will, this extra money will help supplement your lost income during hospitalizations and the excessive trips to the doctor’s.

From my personal experience, had Knoah not receive SSI, we would be in trouble! This extra money allows us to keep his scheduled doctor’s appointments and allows us to travel to them. It helps during hospitalizations and during the times it’s quiet, it allows us to catch up on bills that get sacrificed during medical crisis. Which, Knoah has blessed us with our fair share.

Whatever your reason for applying for SSI, I recommend doing so as soon as possible. The Social Security office will want copies of doctor’s evaulations, specialists, treatment plans, etc. The sooner you apply, the quicker you can get approved. I kept in contact with Knoah’s caseworker at every turn. If he went into the hosptial, I called. If I thought they needed information, I called.

Achondroplasia IS considered a disabilty, even if you think it isn’t. Having the label of being “disabled” doesn’t mean you can’t live your life. You just may have to live it differently than most. The resources are out there to help you become more “abled”, even if you have to use your disability.

Knoah’s appointment with the Opthamologist went VERY WELL!! The doctor didn’t see any indication of pressure behind Knoah’s eye’s!! So, it looks like we’re in the clear! YEAH!

Another mom of an LP reminded me about a song. Even when the medical community is stumped, parent’s can look past the “rareness” and see their child. A child who laughs, cries, hurts and amazes.

Before we had Knoah, I had only seen Little People on T.V. I thought, to have a LP, you have to be an LP. OK, it’s rational. Then, being told Knoah, while in-utero, had either Down’s Syndrome or Dwarfism. My mind froze! Oh my God, the paranoia I had was unbelievable. My child is going to suffer! MY CHILD IS NOT NORMAL! This has got to be a mistake!

Yes, a simple “mistake”. A “malfunction” of a gene. A natural “accident”, helped us find our happiness. Who knew a 9 pound 6 ounce bundle of joy could remind a family of what is important in life.

It is the “unknowns” that we didn’t know about that have hurt us. I know I am blabbing again. If this weren’t an issue, I could relax.

Speaking of relaxing, Knoah certainly is…IN HIS OWN ROOM!!! Yes, we (I) have moved him into his own room! He has been sleeping there about 5 days now without any issues! I am so proud of him! I am so proud of me! I did it!! We did it!!

Well, not exactly issue free, dad is having a hard time with it. Will has elected to sleep on Knoah’s floor. So, we are all getting a good night’s sleep and I have a king size bed all to meself!

Jacob, on the other hand, has been having a rough time. I’ll elaborate in another post. I sometimes forget that other people can read this. I forget that this isn’t my personal online journal of events in our lifes and that several thousand people have a glimpse into our lives. Those who know what I am talking about, understand.

Sometimes when children act out, it’s not because of the stress the family is under. I have my suspisions about what is going on with him, but we will wait for the testing to come back.

Hannah is, well, Hannah. We’ll leave it at that. She came down stairs one day after playing quietly (Isn’t it said when kids are quiet their up to no good…) in her room and confronted me with this:

She said she’s a clown…enough said.

Listen to the song while reading the lyrics, any parent who has a child with a rare syndrome can relate, I am sure!

NATALIE MERCHANT LYRICS

“Wonder”

Doctors have come from distant cities
Just to see me
Stand over my bed
Disbelieving what they’re seeing

They say I must be one of the wonders
Of god’s own creation
And as far as they can see they can offer
No explanation

Newspapers ask intimate questions
Want confessions
They reach into my head
To steal the glory of my story

They say I must be one of the wonders
Of god’s own creation
And as far as they can see they can offer
No explanation

O, I believe
Fate smiled and destiny
Laughed as she came to my cradle
Know this child will be able
Laughed as my body she lifted
Know this child will be gifted
With love, with patience and with faith
She’ll make her way

People see me
I’m a challenge to your balance
I’m over your heads
How I confound you and astound you
To know I must be one of the wonders
Of god’s own creation
And as far as you can see you can offer me
No explanation

O, I believe
Fate smiled and destiny
Laughed as she came to my cradle
Know this child will be able
Laughed as she came to my mother
Know this child will not suffer
Laughed as my body she lifted
Know this child will be gifted
With love, with patience and with faith
She’ll make her way

Just a observation here:

We applied for a handicap permit for Knoah when he just under 12 weeks old. At the time, I had an oxygen tank, apnea monitor, diaper bag, car seat and baby to un-load from the car every time we went somewhere.

Under State statue, Knoah is entitled to have an Handicap Placard for parking. Obviously, since he is not the one driving, it is allowed to be used in the car that is transporting him, mainly my car.

Now, why is it that whenever I go out park, with him in the car, I have that 80 year old women, looking at like I have committed a crime? Since when does having a disability mean you have to have one leg removed or you have to be seated in a wheel-chair? These are obvious impairments.

With someone who has dwarfism, they are looked at as:

1. You can walk on your own.

2. You are young (under the age of 60)

3. Your just short, your not disabled!

Well, on the contrary, because Knoah isn’t walking yet, guess who is doing all of the work? Me. When Knoah is walking, how far do you think his legs will carry him without him getting too exhausted? Is it fair that we should be expected to park at the furthest ends of the parking lot because my son is younger and can walk without obvious signs of “disability”?

Still, you have to relish the looks of disgust and hatred from others when they see me getting out of the car. I actually had one older gentleman confront me saying I am not allowed to park in a handicap parking space because Knoah is just a baby and doesn’t have a disability and he (the gentleman) has every right because he is 68 years.

Since when does making you old handicap?

I had a guy, literally, pull out in front of me to take a handicap space, that I had my blinker on for.

I had another lady, walk away from her car as we pulled up to park. She stopped, came all the way back to look inside MY WINDOW to see if I had a placard, then she walks away shaking her head. WHAT?

Have you had any experiences like this?

I posted this in the comments, but wanted to post it here:

Ya know, the thing is, I don’t see Knoah as being “handicap” or “disabled”. He has a physical impairment that limits his ability to function in everyday life. The governement has labled that as a “disability”, rightfully so. There are too many people who would take advantage of that to NOT offer him a job, or use his Achondroplasia as an excuse to try to hold him back.

I want to help him, like I do my AH children, to get ahead in life. I want to provide him with the means to live a full and rich life. If that means he should park closer so it is easier for him to shop at a store, then so be it. If that means we approach our local grocer to ask for a step stool, so he can shop on his own, then so be it. He should be given every chance to live a regular life, just like everyone else.

His impairment does affect his health, physically and medically. Obviously, when not transposrting, I don’t park in the handicap parking, becuase it is for people who need it. Who’s to say, he doesn’t. Right now, I am his body. Even though he’s 1.5 years old and AH children are walking, he’s not. When he is 7, he will have to take greater strides to keep us with us, we will have to slow down for him. At school, they do a lot of walking field trips, so I realize we may have to keep a stroller or oush chair for him. He has every right to enjoy things other kids do without exhausting himself to “stay with the group”.

Okay, so I will post this entry on the blog, but gosh, the looks are so rude!

New growth charts have been created for achon children.

These are Weight to Age charts, please print off copies for your doctor’s.

Trisha, mom to Caden has ventured into the blogging world!!

Please go over and say “Hi!” to Trisha and Caden!!

Caden and his mommy!

We are back from Grand Rapids!

Knoah’s appointment went really well, but I guess it also could depend who you asked. If you ask Knoah, I am sure he’ll claim he was some how “tortured”. The amount of screaming he did from the time we walked into the examination room till about 10 minutes before we left, was enough to scare the little 3 year old in the lobby.

Dr. Pauli’s assessment of Knoah’s progress is over-all wonderful. He does agree with the Neurosurgeon’s (Dr. M.) treatment and his approach to handling Knoah’s fluid in his head. He appreciates Dr. M’s conservative medical opinion and that Dr. M isn’t rushing to treat Knoah’s Hydrocephalus. He does agree that as soon as we get the results from the Neuro-Opthamologists that it be forwarded to him. Since shunting is pretty dire, we need to be fully prepared. If the eye doctor’s results come back negative for pressure, we could be in the home stretch that Knoah’s head is fine. If the results are inconclusive, we could opt to place a pressure monitor in his head for a few days (which means another hospital stay) to see what happens. Which if you check out the link…we would not look forward too.

We arrived home today to find out his appointment with the eye doctor is Monday, so we will find out sooner than we thought!

Dr. Pauli is impressed with Knoah’s brace. Although, it’s not the traditional brace used for children with Achondroplasia, it will work. We have found thought, there are some issues with the brace. Since adding the pad in the back, Knoah is A LOT more uncomfortable than before. Yesterday, on the way up to Grand Rapids, he did nothing but fuss. He was so uncomfortable, he didn’t sleep the whole way up there. About 20 minutes out, I had to take the brace off of him, we could stand to hear him whimper anymore.

Once we were at the appointment and we took the brace off again, it was evident something is going on. Knoah had pinch marks on either side of his body and was extremely red. Dr. Pauli thinks that the pad they inserted may be a little too aggressive right now. He says that with the additional counter-pressure, it has caused the brace to shift and it isn’t fitting as well as it was before, so it is pinching and rubbing against his skin. I have to call the Orthotist to get Knoah in so they can make the corrections.

We talked about Knoah’s “spells”. He asked about them and what I thought and I replied “He keeps breathing!” “It’s amazing, he continues to breath!”. He has a nice chuckle from that.

Knoah is very proportionate for his height and weight. His head circumference is 53.4 Cm’s, which is about 60th percentile and his length is 69 Cm’s, which is about 27 inches. He is a good weight and is growing as expected.

Dr. Pauli was VERY impressed with Knoah’s flexibility. We all know how flexible he is and Pauli can see how that hurts him with regards to walking. Because he has excessive hip flexion, it is going to be harder for Knoah to remain upright for very long. His hips and pelvis, sort of shifts on him, so he will have to work harder to keep his balance. Knoah’s tone looks good and he is very strong, which is a good sign Neurologically. There were no other concerns and we are breathing a huge sigh of relief! It seems Knoah’s complications relating to his dwarfism appear to be just about done, for now!

All in all, it was a good visit! We are very happy with the way Knoah is growing, in more ways than one! THANK YOU DR. PAULI FOR YOUR DEDICATION TO OUR KIDS!!! I CAN’T FORGET CASEY. SHE IS ALWAYS ON TOP OF THINGS!!!! THANK YOU!!!

Dr. Pauli and Knoah

While we were there, we saw an old family friend! I have known Larry for almost 20 years! He is a retired State Trooper and is now teaching. We sat and talked for over 3 hours.

Larry and Knoah

Look, the Tiger’s just got another run!

We met him at a place called Uno. I must confess…(off topic, this has NOTHING to do with dwarfism)….their Chicken Spanioccoli is TOO DIE FOR!!!
If anyone wants to make this for me every night for dinner, I would be eternally grateful!!!

Anyways, we had a GREAT time and I love seeing Larry when we have a doctor’s appointment!

Dr. Pauli wants to see Knoah in about 9 months provided nothing drastic happens with the eye doctor. So we will see him again when Knoah is 2 years old. He did provide some insight into Knoah’s walking. He said he should start walking within 6 months. Which is about the right time for the typical Achondroplastic child. So be on the look out for a little, brown haired, blue eyed toddler trying to run you down.

I think everything will be okay! The scare we had from January to July 07 may not of been related to his dwarfism. *Head shaking*, we’ll have to see.

So, here are more pictures from our trip!

Knoah killed the lemon wedge. Have I ever told you how much he LOVES lemons? Pucker.

Yes, he really does enjoy lemons….

Look at his finger grip! I am so proud!!!

It wasn’t ME!! Look at my face, I’m not lying!!

I DECLARE THIS SONG OUR THEME SONG! Me, Tonya, being a bucket of positivity, live this song…DAILY!

Thursday is Knoah’s appointment with the famous Dr. Pauli! I have been running around to do appointments, calling to make sure charts have been sent and taking care of other family responsibilities.

Preparing for doctor’s appointments, we all know is a full-time job. One, that I do, happily.

I am expecting this visit to be rather, routine. We will go over Knoah’s astonishing medical history, since I am under the belief that he has hit just about every major concern in an Achondroplastic child known to man. Yet, we haven’t hit the shunting or leg surgery yet, LOL, in due time. LOL

Today I took Knoah up to have the pad inserted into his brace. The pad is to place extra pressure on his Kyphosis to help reduce it even more. We see the Orthopedic Surgeon in three months, but I think Dr. Pauli may want to get an X-ray to see for himself. I pray it is working.

We are traveling with Sue’s family to help defray the cost.

We’ll just cruise along till the next road block…

Gosh! Who’s counting! Having Knoah in our family, we are now WELL TRAVELED!

Lyrics to One Little Slip by The Barenaked Ladies

It was a recipe for disaster
A four course meal of no sirree
It seemed that happily ever after
Was happy everyone was after me
It was a cup of good intentions
A table spoon of one big mess
A dash of over reaction
I assume you know the rest

[Chorus:]
One little slip, One little slip
It was a fusion of confusion
With a few confounding things

I guess I probably took the wrong direction
Well I admit I might have missed a sign or two
I ran a light past your affection
At humiliation Avenue
Took a right turn at confusion
A left when I shoulda gone straight on through
I ran ahead with my assumptions
We all know what that can do

[Chorus]

I get the feeling in this town
I’ll never live till I live down the one mistake that seems to follow me around
But they’ll forget about the sky when they all realize this guy’s
about to try to learn to fly or hit the ground

It was a cup of good intentions
A table spoon of one big mess
A dash of over reaction
I assume you know the rest

One little slip, One little slip
It was a humble little stumble
With a big un-graceful…

[Chorus]

Do you remember a while ago when we went through the car seat fiasco?

Well, little did I know that someone would actually be interested in something I wrote. Let me explain.

When I wrote that post, I was venting. I was angry that someone would sell an expired car seat. I was willing to look past the fact that they may not of know, but to say, “too bad” and keep all of my money, irritated me. So I wrote this long winded post about all the information I found out about expired car seats, injuries, etc.

A women who I have been in contact with emailed me and asked if it was okay to allow her friend to publish the article in their local paper! She lives in British Columbia, Canada, in a little place called Kitimat. You ask where that is…


View Larger Map

Or, just under 2800 miles away!

I agreed. I then had, honestly forgotten about it. A few weeks ago, she contacted me saying she had a copy of the article for Knoah’s memory book.

She sent me a copy of the article and I can officially say I have been published? LOL

Not really! *Smile*

I wanted to share, because, well, I think it’s cool someone in Kitimat, BC wanted to publish something I wrote. Especially because I had to find a car seat that didn’t cause my son to throw up everytime we were in the car!

Thanks Rachel!

Yesterday was FANTASTIC!!!

We ate, talked, laughed, compared notes about our little ones, talked about the siblings, it was a great time!

First to arrive was Catie and her family! This is Catie with Hannah. Hannah is 3 years old and is a doll! She found a quick friend in my Hannah (more on that later!) Catie and her family have just moved to the area, so I know we’ll be seeing more of them! Click on Catie’s highlight to go to her blog!!!

Within seconds, Cat, Owen and Jennifer arrived!! Owen displayed his newly acquired skill of walking!! He is getting so big and weighs close to 22 pounds!

Then arrived Sarah and her family!! Kaela was ready to go! Right onto the floor she went and started to socialize with the other kids! Kaela’s big blue eyes look at you with curiosity! She is too precious! Mommy even fudged a bit and took her brace off so she move around easier! Once it was off, there she went!!

Then arrived Sue and her family! Adian is growing just wonderfully! He is pulling himself up and cruising around the furniture! He is drinking from a sippy cup and recieved a haircut before making his grand appearance here!

This is the circle of friends!

Now for Hannah A. and Hannah B.. They played tea party, beauty salon and watch a movie!! Hannah A. (mine) and Hannah B. (Catie’s) got along wonderfully!! A girly-girl for a girly-girl! The perfect mixed for a long friendship!

Last, but not least! Knoah certainly didn’t pass the day without his candid photo opportunity…

I am so blessed to have these wonderful people around us! Knoah is the LUCKIEST boy in the world to have so many great friend’s!!!

I wanted too add, but I ran off to church, that Char called Friday night to wish us a good time!! I am a lucky mom to have such great friends!!

Thank you!!!

Knoah’s Ortho appointment went REALLY WELL! Dr. Yassir is GREAT! While I feel sorry for the families who lost him on the East Coast, I am THRILLED we have him now!

They took an x-ray of Knoah’s kyphosis and while being braced it still is coming in at 40-ish degrees, bracing should help. Dr. Yassir said that by the time Knoah is 5 we should know what direction we are heading. If his kyphosis isn’t resolved by 5, that would be an indicator that Knoah may have to have surgery. So, it will be a long 3 years in the brace, though I am greatful he is tolerating it so well. He said that 12 hours or while Knoah is up and active should be long enough to keep him in it because while he’s sleeping, he is not putting pressure on his spine. So we need to prevent the “C” position during Knoah’s waking hours. Easy enough.

I am diligent about putting him in it as soon as he wakes up. I pray that we can avoid surgery. Though as the Dr. said, after we deal with his spine, we will have to work on his legs. Joy!

All Achondroplastic people have bowing of the lower leg. Genu Varum or in layman’s terms, Bull Legged. The reason for this is, Achondroplasia effects only the long bones. The Tibia and Fibula are the two bones in the lower leg. As person with Achondroplasia grows, there is pressure put on the legs. The Tibia slowly grows and the Fibula is growing twice as fast. When this happens, the Fibula (being attached to the Tibia) “pulls” the Tibia and causes it to bow.

The best video I have seen to explain this is a program produced by National Geographic.

It is at 1 minute and 50 seconds that describes the total affect of a little person’s leg problems.

So, his kyhopsis isn’t as well as I had hoped it would be, but it is a process and one I am determined we will win!

I will close with pictures of the man himself, we have a big day Saturday!!