I feel like the weight of the world is resting on my shoulders and unfortunately, it’s composed of lead.

Renay basically mentioned that I haven’t been myself lately and she’s right. To make a long story short, I will tell you what has happened.

In 2006 we had our home repainted by the City using a HUD grant. We were concerned with lead based paint as Hannah several years before had lead poisoning. We wanted to prevent any exposure to the kids and we couldn’t afford to have it repainted ourselves. So by qualifying for this grant, we could get the house “abated”. They company came in scraped, sanded and power washed the house. It took forever for them to finish the work, but we had other pressing issues ( I was pregnant with Knoah at this time).

When everything was said and done, we had the house abated, but Will and I had to pick up paint chips from the yard, we weren’t happy, but it had to be done and the contractor didn’t do it.

Jacob picking up Easter eggs April 2006. In this photo being re-sized to fit, if you look closely it has paint chips speckled throughout the yard. Had we of known then what we know now.

Fast forward to March 2008, we are notified by HUD that they want to do an inspection…..

So far we have had a partial risk assessment and it confirms that there is lead based paint on the house. Our soil is contaminated. HUD and EPA regulations state that soil lead levels cannot exceed 400ppm in play areas and 1200ppm in other areas, our is 2174. Highly contaminated.

Because the contractor, nor City informed us of the risks, IE: Having the kids lead levels monitored, we can only put two and two together that they were exposed.

Remember when Knoah had the ALTE? He was 7 weeks old at the time and ended up in the hospital for 8 days. The hospital never checked his lead levels, but all of his symptoms are consistent with lead poisoning. What we do know though was he was diagnosed with Encephalopathy.

Knoah in the hospital January 2007.

Jacob has been seen by a child psychiatrist and has been tentatively diagnosed with ADHD. I am not buying it is a true form of ADHD since children who have been lead poisoned often are diagnosed with ADHD because of the way lead interacts with the body and it mimics ADHD.

Hannah is, well Hannah. She has been this way since she was 1.5 and will likely stay that way. We are just know seeing how the lead has affected her. She has a hard time reading and spelling. We are doing well in school, so far, but it’s a process, one that will take years to overcome. Even still, her body is attracted by the lead. Even if we were to monitor her levels, they will vary depending on what is going on with her body. During times of illness, her levels will raise and during times of “non-exposure” her levels will stay low. Though, as soon as you re-exposure her, her levels will climb nearly twice as fast, because her body is a magnet for the lead.

The kids have played in the lead contaminated soil for over two years. We have been dragging it into the house on the bottom of our shoes and Knoah has been crawling around in it. Obviously, I clean and mop, but I can’t clean 24 hours a day. Now that winter is past, the soil is starting to track back into the house.

So we sit, waiting for information. Waiting for the the soil to be abated and the paint to be “re-abated”. We sit, worrying about the kids and their future, our future.

The gravity of this is so insurmountable. There are so many questions, not enough answers.

The Federal government has an action plan to end childhood lead poisoning by 2010 and things like this continue to happen.

Every regulation set forth by HUD and the EPA for Title X were ignored.

And I sit here with three children. Three children who have all had medical complications in one way or another not explained by any other reason.

I know, because I have heard it before, “I lived with lead paint and turned out fine”. No you didn’t. How many IQ points did you lose because of the exposure to lead? How much smarter could you have actually been if you weren’t subjected to lead paint and dust?

In 2006 a 4 year old boy died from acute lead poisoning. He swallowed a bracelet that came with a pair of Reebok shoes. The bracelet contained high levels of lead.

If you have been exposed to lead, but haven’t died, you most certainly could have ended up in a vegetative state. When we lived in Toledo, we lived across the street from a man who suffered lead poisoning as a child. Confined to a wheel chair, unable to care for himself in any capacity, he relied on his sister for his care.

Prior to finding about about Hannah’s lead poisoning in 2002, she would have temper tantrums like you have never seen before. She was violent. I would take her to the doctor’s asking them to help to be told, don’t worry about it, she’ll grow out of it. Then we find out her levels were high. We would have to physically restrain her. She would throw her head against the wall, bite, hit and claw at you.

This is the reason I have been in a fog the last two months. I feel like our lives have been destroyed because of some one’s greed, lack of knowledge and simply not following the law.

Lead had destroyed my family more times than I can count and has ruined my children’s lives.

We have to have their levels taken at minimum two more times before the end of the year.

With it being nice out and them playing outside, I pray to God their levels haven’t gone up. Will and I have tried to safe guard their play area. We have rototilled twice now and have laid down Sod. That way they have somewhere to play. Now we are waiting on the City to “fix” this, but I don’t see how they can. The damage has already been done.

I have been slacking in the department of notifing everyone of new blogs…

they have been popping up so quickly and with my head in the clouds, here they are:

Destini, mom to Tay and Trace blogs about her son and daughter and the fun they have. Trace has Achondroplasia and has the BIGGEST blue eyes!

Keeping up with the Kunz’s pays tribute to Andrea’s family! Andrea is mom to four beautiful children, one who has Hypoachonroplasia.

Stop by to welcome them to the community!!!

To date there are 17 18 new blogs about our kids!!! I am so proud!!!!!

Edited: See, in the clouds….

Sonya, mom to Blake, JJ and Cameron, has joined us!!! JJ or Jaden, has Hypochondroplasia. Sonya lives just a few minutes up the road from us and we’ll be getting together real soon!!

Stop by and give her a BIG HI!!!

Also, if you come across any dead links, please let me know

I am very happy to report that the website that I had posted several weeks ago is OFFICIALLY DOWN!!!!

With some “PI” work, I forwarded Gary Arnold, V.P of Public Relations of LPA the information regarding who owned the site.

Please give him a round of applause for the a job WELL DONE!!!

Thank you Gary!!

*Edited: And, it’s back up. So, IF you feel the need to contact the administrator, please contact:
Registrant:

FILM FICTION PRODUCTIONS

1413 N EDGEMONT ST #3
LOS ANGELES, California 90027
United States

Registered through: GoDaddy.com, Inc. (http://www.godaddy.com)
Domain Name: M***.COM
Created on: 24-May-06
Expires on: 24-May-09
Last Updated on: 29-Oct-07

Administrative Contact:
WHORTON, WOODY nisage@gmail.com
FILM FICTION PRODUCTIONS
1413 N EDGEMONT ST #3
LOS ANGELES, California 90027
United States
3104245809

Technical Contact:
WHORTON, WOODY nisage@gmail.com
FILM FICTION PRODUCTIONS
1413 N EDGEMONT ST #3
LOS ANGELES, California 90027
United States
3104245809

Domain servers in listed order:
NS27.DOMAINCONTROL.COM
NS28.DOMAINCONTROL.COM

Registry Status: clientDeleteProhibited
Registry Status: clientRenewProhibited
Registry Status: clientTransferProhibited
Registry Status: clientUpdateProhibited

If your picture was used without your permission, please contact Gary Arnold at GArnold@accessliving.org

Websites like this are not funny, creative, in good taste, humorous or just for fun.

Edited AGAIN: I took the link out BECAUSE I don’t want to give this insensitive insert word of choice anymore publicity.

Okay, well maybe it wasn’t a cat, but it certainly resembled a chicken.

Yes, Jacob dragged home Chicken Pox!

Poor kid, he went to school with one little spot, I thought it was a bug bite and he came home with a lot more spots. The staff at school asked if I had recieved the notice that a case was reported in J’s class…nope sorry, didn’t see THAT one! I wondered where he got it.

So he will be home with Knoah and I for the next week. Luckily, he had already had the vaccination some years ago. Knoah recieved his about 2 or 3 weeks ago. The doctor said he may or may not get them and if he does, they will be mild like Jacob’s.

I have been giving him an antihistamine for the itching.

Then, last night, Knoah and I spent three lovely hours at the Emergency Room.

Last night after supper, he was suppose to be sitting at his feeding table, finishing his dinner. Will walked out of the kitchen and there followed Knoah. I, standing right there, yelled too him “Knoah! No!” He must not of heard me over the “Da Da Da Da Da Da…” as he made his way out of his seat and onto the floor. The part that was bad was he came down on his head. It hurt, I know it did, I saw it.

After I picked him up off the floor and comforted him, he settled down. I gave him to daddy as daddy was his intended goal, I noticed a little bit of blood coming out of his nose. I get him cleaned up and settle him with me in-front of the computer while I am searching for “head injury nose bleed”. The searches came up with if your bleeding from the nose after a head injury, see a doctor.

So, I wait a few more minutes too see if it stops. It doesn’t. Now it was coming out of both nostrils, at which point, I call Will back home and rush off to the hospital. (I think we hit our CPS quota, thank god most of the hospital staff know us!)

The doctor orders a CT of his head to make sure it is intact and it is, so we are cleared! He does inform me though that Knoah has an ear infection, so he is back on the antibiotics.

Quite a start to the weekend I say!

Number 20…..

K-N-O-A-A-A-A-A-H-H…..S-W-E-E-A-T-T-T-T!

Last night we took the kids to an All Star Basketball game. The FOP puts on a Charity Basketball Game every year with local police offices from the City, County and State. Who do they play?

The Detroit Lions! It really is a great time! We have gone the last four years and the Lions ALWAYS put on a good show! They do things like “steal” kids popcorn and ACTUALLY eat it! Give their shoes to a kid so they can “be in their shoes” while they play a round. They chase kids thru the stands, pull them onto the court and put the kids on their shoulders and swing them around. Entertaining things to show the kids, they like to have fun too!

It was a great time! Jacob and Hannah got to go onto the court and play with the players. Each were allowed to shot the ball to try for a basket! They both made it! Hannah had a little extra help from Luther Ellis.

They were able to get autographs and pictures with the players!

Here we are with Casey Fitzsimmons!

We got him mid-blink….sorry Casey!

Then we meet Ron Bellamy (R) and Brian Calhoun (L)!

Jacob was able to get a picture with Luther Ellis.

We also got to meet Cory Schlesinger.

Also Rob Rubick was there!

It was a great time and the kids had a blast! Knoah was a blast, especially when we got home…he vomited everywhere. He didn’t sleep well last night and woke up at 5:30 this morning for the enjoyment of dad!

Yes, we are die-hard Lions fans…raising them right, teaching them early!

Thanks guys for your support of the community!! We do appreciate it!!

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!