 |
 |
 |
|
 |
|
 |
|
|
Well, the blog roll continues to grow!
Our Three Girls written by Danielle. She blogs about her gorgeous girls, her youngest has Achondroplasia.
The Hall Family is about Amanda and her son Parker. He’s a cutie and had his First Birthday in March!! Parker has Achondroplasia.
I haven’t been able to get any photo’s or video’s of Knoah and his elusive walking. He’s too busy walking holding that death grip on my finger. Hard to capture video that way. He is becoming more confident though. I am hardly holding his hand at this point, but he doesn’t realize it yet. So, we walk with him holding my finger.
I have though captured photo’s of him and his mischief….
Apparently I don’t feed him enough….
So he decided to drop a half of box of cereal on the floor and eat that. Yes, I am letting him eat off the floor.
He doesn’t care. He feels that there is a bonus, not only does he get to eat, but he gets to share a snack with the dogs. He will pick up a piece, feed himself, then grab another to feed the dog. It’s a Win-Win situation!
I have also decided on a stroller…I won’t share now, I’ll wait till it comes in…but I must confess, I am awful excited!! It is a nice looking stroller, it wasn’t the one I originally bought. I mean, I bought it, but it turned out it wasn’t the one I planned on getting. So I’ll leave it at that. I also got a super fabulous deal on it! Details later.
Then, I found out we had an unwanted house quest this afternoon.
Imagine sitting in the kitchen, eating a lovely lunch of Mostaccioli when you hear this buzzing. The window is open and the (finally) warm spring breeze is coming through.
Buzzzzzz. What is that? A few minutes later, Buzzzzz.
Geeze. So you get up and look out the window. Nothing. Hum, okay. Buzzzzzz. Wow! What is it and how big is it to make that loud a buzzzzzz?
WOW!!!
Now, I don’t routinely advocate termination of insects, but I do, like everyone, have to make concessions.
After a few brief moments with “The Bee”, I introduced him to my little friend.
And, he was no more.
*WARNING* If you have a sensitive stomach, please look away.
Okay, you can look again.
I had to do it. I am sorry. What if it had landed on Knoah? What if it had landed on me?
I had too. I don’t show up over their house and camp out. What do you think would happen if I did that? Do ya think they’d share their honey with me? NO!!!
So, other than that, no ER visits, no Chicken Pox as of yet, no colds, lots of thick mucus dripping from the nose, it’s an average day in our not so average life!
Well, now that it’s almost over, I have received some wonderful gifts from my family!
The kids got me a whole bunch of bath items, which will make mommy smell good and not like spit up 
Will bought me a beautiful Seiko watch!
We had a brownie cake, cooked out and had a lot of fun at the parade, but the one gift I wasn’t expecting….
Knoah took his first’s steps by himself!!!
He did, he really did!!! I wish I had it on video! He was so cute! I set him in front of me and let go, expecting him to fall forward, but he didn’t! He took 4 steps toward me and fell into me! I screamed!!
I went on and on about how proud I was of him and he got so excited that he tried it again only to stumble and fall. That’s okay!! He took his first steps, ON MY BIRTHDAY!!! What a present!! I’ll post pics on Tuesday and hopefully get a video of him in the afternoon!!
Yes, I am a Memorial Day baby.
I have always had a love/hate relationship with this weekend.
Because my birthday usually falls on a long weekend, I am always reminded that we are remembering those who served. Those who gave there lives so that I may have been born.
So I don’t know that I can consider it “Happy”. I am eternally grateful to the men and women who chose to protect our country. My heart goes out to the families who have lost a loved one through the years of war and conflict.
No, we haven’t done anything more than spend time with the kids. We are taking them to the parade today and we will cookout, but nothing truely exciting.
Thank you to those who have served and lost their lives. I will never forget!!
I realize that most of the older parents of little people feel there’s no need for extravagant, end of the world searching, pricey items for a dwarf child.
I agree, to a point. My need for extravagant, end of the world searching and pricey quest to find the most suitable toys for Knoah is two-fold.
First of all, I want him comfortable with the toys and items he needs and secondly, he MAYBE my last (we are still considering adoption, so I won’t say will be) I want him to have it all.
Which brings me to Exhibit A:
The PERFECT Diaper.
With Jacob, we used a diaper called Bumpies. I LOVED Bumpies, but sadly, they stopped making them by the time Hannah was born. Hannah we used Luvs. They worked great! No complaints.
Knoah is wearing Pampers. We could never of afforded them with the older two and well, Knoah’s behind is rather expensive (by a medical standpoint of coarse) he is rollin in the Pampers, BabyDry and Cruiser’s. At least I can say one of my kids were spoiled!
Exhibit B:
The PERFECT Trike.
After searching high and low for the lowest bottom to floor ratio, I decided to do what other POLP do and buy, what is now vintage, a trike!
A vintage Radio Flyer scooter!
I search, I bid, I win! Knoah is now the brand new owner of a hot little set of wheels!
The only flaw I have found and I see why they discontinued making this particular item is that the wheel base is really small. Meaning, it is top heavy and when your son is also top heavy, it doesn’t make for a light landing.
We are going to modify it a bit by taking off the wheels and adding a longer piece of wood for the axle. By moving the wheel base out, it will hopefully stabilize it.
There is suppose to be another piece of wood in between the seat and frame, but we removed it to bring his bottom to floor ratio down.
We have to change out the screws because the originals are too long. As you can see, it’s perfect fit for him! He has only had it a few days, but is taking to it nicely!
Exhibit C:
The PERFECT Swing Set:
I fell in love with the Little Tikes Swing Along Castle! I found one for a reasonable price on Craigslist. Craigslist and I have a love affair going on. I check them 70-80 times a day and they in return help me save money. Who could ask for a better relationship?
Any-who, I find one and bring it home!
I should have known better…I can’t keep Knoah off of it! He wants to climb up and slide.
Which is GREAT! That’s why I bought it, however, I have realized it is a ER visit waiting to happen. So, I will be placing it outside for use.
Babies who are unsupervised for more than 2 seconds can hurt themselves, which he hasn’t yet, THANK YOU Lord, but we want to avoid any trips to the ER. It’s summer! Let’s try to be boo-boo free!!!
So, I have been looking for a new stroller for Knoah.
I have been researching for a few weeks online, but have found seeing the strollers in person difficult, so I am requesting help.
Currently we have the Peg Perego Pliko P3.
It is a great stroller! It had the feature of a full recline that we needed during Knoah’s first TLSO bracing, however, I have found that now, we are in need of a stroller that has a more upright back.
Right now, Knoah is pulling himself up to sit, but his back isn’t supported. It looks uncomfortable to me so I can only imagine what he must feel like. His new brace is much more rigid than the last one and it doesn’t allow for much flexing of his spine.
I have narrowed the list down too these.
1. Bugaboo -
On face value, it appears to have the most upright seating position. It seems to allow for proper seating without having Knoah to position himself upright. It does have the option of the reversible seat, which in our case, is a bonus. I thought his…indiscriminate after eating fiasco had ceased, but it has not. Really blows me away…LOL
The Bugaboo is rated too be the top of the line for strollers, with a hefty price tag to go along. I concur, the bank does not. Ranges in price from $799.00 to over $1,000.00!
2. Mia Moda Cielo-
Is a nice looking stroller. Weighing in at just 15 pounds, it is very light. It also features one of the smallest folding options available. It does not appear to have the most upright of seats though. Until I can see it and put Knoah in it, I am hesitant. This stroller ranges in price from $99.00 to $199.00.
3. Fisher Price Infant to Toddler Stroller
Similar to the Bugaboo, without the price tag, it features many of the essential benefits of a good stroller. It will carry up to 33 pounds, but appears large and bulky. I question the size of it when it comes to putting it I the trunk. Retails for $150.00
4. I’coo Rock Star-
This stroller is the brain child of super cool rock musicians Jon Bon Jovi and Tico Torres. The seat seems well supported but lays back further than I would like. It is also hefty at 24 pounds and doesn’t lay completely flat for truck storage. Retails for $499.99.
This is a cool stroller! With a super hot price tag! Retails in the mid $890.00’s, the Stokke allows the child a line of sight view of the world. I wonder how well this would fit Knoah?
Thankfully there is Ebay and Craiglist!! You can find ANYTHING there!
If anyone has experience with any of these strollers or you have found one that works especially well, please leave a comment!!
With the last post of Knoah’s death-defing feat, he has become even more daring!
Climbing into the refridgerator, cabinets, stairs….if he can climb it, he will!
alt="" />
Notice his feet, hanging off the drum….
He is also picking up new skills, which greatly help reduce the diaper bag load momma has to carry!
He is now drinking out of a straw!
He is wearing the latest and greatest fashions. This one is MY FAVE!!! It is called “Courtesy of Kim” Bright, colorful, but not too overwhelming. You have to have a BIG personality to pull this chic look off!
Last, but certainly not least…
“Two Buddies”
This is Knoah and our Shitzu, Simon. Simon is 10 months old and weight 6 pounds.
We Mom’s often wonder “Why don’t I ever have enough time?”
I have thought about it enough, then I walk into the living room and catch a glimpse of this……
It’s no wonder our medical expenses are piling up….:)
Andrea, age 4, Undiagnoised Dwarfism
Mandy, mom to Andrea sent me an email sharing Andrea’s happenings.
I wanted to share them here:
Andrea is getting big. She was a micro preemie born at 27 weeks.
She is 4 now. She goes to an Early Intervention Preschool, it is 3 half days a week. She will be doing the same thing next year. She isn’t quite ready to go to K4. Not because of her dwarfism . It is because of her maturity level. Her attention span isn’t quite where it should be.Her health is good. Just the minor colds that go with the weather. She is still not measuring on the growth chart. Because she is undiagnosed typeof dwarfism they don’t chart her on the achon chart. She is measured on the regular growth chart.
We have an appointment to see Dr. Bober and Dr. Mackenzie in September. We are hoping to get a diagnosis then.
Andrea loves to color, being read to, and eating. Pizza is her favorite food and her favorite place to eat is Pizza Hut!.
Isn’t she a doll! Actually funny story, Mandy and I crossed paths several years ago. My husband and her husband worked together. We met up again after we had Knoah! They have sinced moved out of state, but we keep in touch often through email. Funny that someone we knew before we became POLP would have such close ties to each other!!
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.
