The list everyone has been waiting for!!

In recommending toys, these are toys that Knoah currently has, or, I have personally seen or I am intending on getting him. Children with dwarfism has “special” considerations that need to be a factor when selecting a toy. Are they going to be able to hold it, can they lift it, can they reach it with arms extending out? Can they sit (when they start to sit!!)comfortably without falling off?

If you are interested in any of these products, click the highlighted description and it will take you to the site where they are should be available!

So, presenting…..


Myspace Glitter Text Generator

It’s a learning fiesta for your little one! This interactive, bilingual activity table engages and entertains your baby for hours. There are songs, melodies, twinkling lights and real instrument sounds, plus lots of things to spin, roll, slide, open and close. The table plays over 40 songs and melodies so your baby stays entertained while exploring. When babies turn the center page, the activity table switches modes and transforms musical discoveries into learning activities where each instrument plays a learning song. The Learn and Groove Musical Table also helps your child develop the motor skills needed for learning to stand. Contoured grips make “pulling up” a piece of cake. As babies learn to stand, their little hands can stay busy with reaching, grabbing and pulling. Measures 23″ x 5.5″ x 15.5″. Requires 3 “AA” batteries (not included). Keywords: leapfrog learn and groove musical table, activity toys for babies, baby activity toys, other learning leapfrog, learn, groove, musical, table

A cheerful play space that adapts to your growing baby’s needs and provides endless ways to play! The oversized (46″ x 38″) quilted play mat quickly folds to create an engaging environment with soft, sturdy side walls. The walls easily reconfigure to customize the play experience for a variety of developmental phases - from newborn and tummy time to crawling and sitting. Featuring colorful, high contrast patterns and a whimsical garden theme, the Bright Starts Baby’s PlayPlace comes with seven developmental toys and grows along with your blossoming baby. Winner of awards from Parenting Magazine, Dr. Toy and Parents Magazine.

I especially like this playmat! It has the option of adding extra links so infants can reach them without trying to over-extend there elbows. You can make it “within reach” and that is always nice!

A poppin’, droppin’, air-powered fun toy! Drop the colorful balls onto the track and watch them pop out the top!

They can play with this on the floor or in a sitting position. it also helps with fine motor skills. It allows the child to pick up the ball and munipulate their fingers to figure out how they work.

This soft roomy car (with ample leg room for future use) keeps baby comfy AND busy, thanks to its baby-safe mirror and removable electronic dashboard that honks, lights up and plays music. There’s a cup holder for baby’s bottle and even a mesh “trunk” in the rear for toy storage. It’s the ideal place to “park” your little one.

A car children can sit in without us worring about them toppling out! Soft and cozy, it surrounds them while allowing them to play. It provides back and side support!

The Arm’s Reach Co-Sleeper is a great multifunctional product. It can be used as a co-sleeper and it converts into a playyard, changing table and free standing bassinet. This is a great value! Used as a co-sleeper it keeps your infant close to you while sleeping or resting in bed. Rest easily knowing your baby is near. You can check on your child quickly without leaving your bed. It attaches to your bed under the mattress.

The best Co-Sleeper!! Knoah is still in our room and this co-sleeper is big enough to allow him to freely move around during sleep, but he is still within “Arm’s Reach”! It can also be used as a travel crib. Suitable for newborn’s and up! When infant’s start to pul themselves up, lower the bassinet and they can sleep in the playpen!

The Centro Completo is Peg Perego’s deluxe, full-featured stroller designed for parents who expect the very best. With a reversible hood and full-recline backrest, the Centro Completo can be converted into a carriage in one simple step. This stroller’s all-wheel suspension, swivel front wheels, and rear-wheel brakes provide safe, easy handling. And with the all-weather rain shield and warm boot, your little passenger will ride in comfort in nearly any type of weather. The Centro Completo also comes with retractable car seat anchors, front bumper with child’s tray, and height adjustable handlebar with adult cup holder. And like all Peg Perego strollers, the Centro Completo is made with quality, removable, hand washable fabric.

The ONLY stroller you’ll ever need! The Peg accomedates newborns and up. It allows for a “pram” style stroller so the infant can lay completely flat! It also has a five point harness so restrain those wiggly infants!

AND the GREATEST TOY for Infants with dwarfism!!

A soft and fun way for tots to explore and play
Big chunky blocks to build with, crawl on or climb over
Various geometric shapes and bright colors
Blocks come in a sturdy vinyl bag with handles
For ages 6 mos. and up.
A great interactive toy to increase baby’s gross motor skills!!

Peter Potty products are designed to make the potty training process easier – so that you will have more success, with less mess! Whether you are just getting started, looking for a different solution or simply ready to transition your child closer to independence, Peter Potty products are the right choice!

This item is recommended for older children. Toileting issues arise as children grow and step stools and modifications are sometimes required. This gives parent’s an alternative until a permanent solution can be found!

This zoo toy keeps kids entertained for hours with colorful and stimulating movable objects
Includes animal alphabet spinners, silly critter flip-flop puzzle, peek-a-boo doors, squiggly tracks, snake-along beads and beastie paths
For ages 12 mos. and up
18Hx13.5Wx12D”
2006 Parents’ Choice Award

Most of these items can be found elsewhere online! You can always try Ebay, Amazon.com or other places online! Look for the best price, you may have to search for it, but trust me, it will be well worth it!!

I knew Knoah’s appointment with the ENT was at 2:30pm on the 20th. I figured I would pull the kids out of school early, then after the appointment we would grab something to eat.

I drive up to A2, gather all the kids and supplies for the trip into the hospital. This is always a tedious task, as 7 and 9 years are notorious doddlers. I finally make it to the office, 15 minutes after the appointment time and the receptionist tells me “Oh, Knoah’s appointment has been cancelled. The Dr. wants him to have a sleep study.”

Oh, okay, “Um, well why didn’t someone call me? I drove up here from Monroe, with three kids!”

After a few phone calls, they decide we would see the doctor.

Long story short, Knoah is to have….what, his 18th sleep study or Polysomnogram.

I described Knoah’s (my) sleepless nights and his noisy snoring, his cesstion of breathing (he really has to STOP that) and his “brrrrrr” sounds. I explained to him that when Knoah is in a deep sleep, it sounds like he is breathing against something. He says that Knoah’s breathing concerns are likely related to his tonsils and adenoids. He takes the “gagging stick”, puts it in Knoah’s mouth and this begins the sounds of choking. The doctor retreats from the toddlers gapping mouth (Venus Fly Trap) and says “Yeah”.

He turns to his assistaint and says “Continue with the sleep study and we will just schedule him for surgrey after we get the results.”

*Sigh*

Me: “Well, what do they look like?”

Doctor: “He’s at a +2. When the study comes back postitive and I am confident it will, we’ll take his adenoids and tonsils out. if it’s negative, we’ll cancel the surgery.”

Me: *Sigh* “Okay”.

So, I get the surgery scheduled (because they make you meet with the scheduler) and we decide to do it January 28, 2008.
She said that the sleep program will contact me in the next week to schedule the sleep study. I reasonably ask “Do they come to the house?” I should have known better, no, it’s an overnight stay.

When I get home, curious as I am, I look up what “+2″ means in Otolaryngology *Side Note: Isn’t that SICK that one would even know how to spell that, let alone say it?*

Basically, it means this:

+1 or Grade 1: 0-25% of the tonsils size occupy the airway
+2 or Grade 2: 25-50% of the tonsils size occupy the airway
+3 or Grade 3: 50-75% of the tonsils size occupy the airway
+4 or Grade 4: 75%+ of the tonsils size occupy the airway.

So Knoah’s tonsils occupy 25-50% of his airway…that’s nice to know. I wondered what the flapping was that has kept me up at night.

From now until January 28, we see the doctor, at minimum, 4 times. That doesn’t include his other appointments. I am not complaining of coarse. *Eyes rolling*

Next major appointment: the Orthopedist! We will find out about a new brace.

So, to make my next entry exciting!!! Tonya’s list for the BEST TOYS of 2007 for children with dwarfism!!! Help me here I need a catchy, flashy name!! I need suggestions by November 29!! The chosen suggestion will get…VIP Mention! *smile*

Trust me, I have become somewhat of an expert in the toy department!!

LPA is holding the National Conference in Detroit, Michigan June 2008.

A private company has issued the “Most Dangerous City” report, where, we, are number 1! By passing St. Louis.

The FBI has list on it’s website the 2006 crime stats. The problem with ALL these numbers is submission of actual numbers are voluntary! Meaning, any city wishing to submit their numbers may do so, but they don’t have too. Also the old saying is “Figures don’t lie, but liars know how to figure”. Not all agencies report their crime stats and even if they do report to the FBI the definition of each crime ie: type of crime may vary greatly from location to location. Thus, cause either an over reporting or under reporting of that localities stats.

To put this in context, you have Tonyaville, ThatbeMe that has a population of 10. A raving lunatic goes out and kills 5 people, guess what, next year, controlling for population, Tonyaville, ThatbeMe has just become “The Most Dangerous City” in America!

My question is this, since a majority of us live, work and play in Detroit on a daily basis, what are some of Detroit’s highlights?

I will, with your permission, copy and paste your comments as they come in on this page. If you post a comment, I will take that as permission.

Some Little People feel, in other words, it is irresponsible for LPA to hold the National Conference in a city where Little People may be the target of crime.

Not to mention, Detroit just hosted an NFL Super Bowl (24 months ago), the Detroit Grand Prix (attendance in-excess of 100,000), the 2006 World Series and the 2006 American League Championship Series, The 2006 Major League Baseball All-Star Game, Detroit’s Annual Thanksgiving Day Parade (with attendance over 100,000), Annual “Thunder-boat” races (attendance in excess of 70,000), Annual Techno Music Festival downtown (attendance in excess of 50,000), Annually Detroit holds one of the largest Auto Show in the world (January) with the Detroit Auto Show. ALL of these event’s are held without the taint of crime so why would anyone think that the LPA conference would be different?

I have also posed this question to one of my list serve groups.

My family is excited about attending the National.

Comments?

Mike says: it is good practice not to judge a book by its cover. Detroit is not user-friendly and it is not pretty on the surface. But if you look under the surface, the city is a great place to live and visit. Please view comments to see in entirety.

I hope everyone had a wonderful Thanksgiving!

We did…to a point. It got me thinking about “Being Thankful and Feeling Thankful”. When is one enough? I mean, of coarse I am thankful for the usual things, family, friends. When is being thankful “content”?

I readily admit, I am never truly content with my life. I always strive for more, be it happiness, health or simple things, like the life God has given us.

This Thanksgiving was hard, for the whole family. The one day, we are all together as a family and there was turmoil. Turmoil that started at Knoah’s party. You may not have notice it if you were there, but the one thing Will and I were counting on, the one thing we needed to end this year on a high note didn’t happen. Why? All I want to know is why. People say that when one door closes a window opens. I do believe that, but I keep looking out the window and see nothing. No prospects, no hope, nothing.

It has been really draining on the family. A shake your head kinda moment, one you don’t understand and your not even sure how you ended up in a situation in the first place. I guess that is why I am struggling right now to write.

I don’t want a lot for my life. I look forward to the simple things. Providing a good home for the kids. Making sure Knoah has everything he needs to “fit” in a world not made for him. A 9-5 job that accomplishes the desires we have: make a difference, support the family, acknowledgement that it matters.

I guess looking at it, these things are not as simple as I want to believe. There will always be moments that drain us, it will always be take one step forward, slide back 4.

How? How do you accomplish success? How do you define success? How do you know when you’ve achieved it? Is it wrong to want better? Why do people feel it okay to take one’s generosity for advantage? I know I am speaking in circles, I am sorry. I have had 7 days to gather my thoughts and still I am at a loss of words.

No, I am not feeling “thankful”. For what? Continuation of trouble and strife? Another day of the same old, same old?

It is what it is.

AHHHGGG!

The bright side is tomorrow is another day…*sigh*

First was “Don’t roll the dice with genetics“.

Then was “Seize the day”

Follow up from previous two

Now, in our own backyard, the term “moral midgets” has been used.

Well, now that the hoopla is done and over with, let the appointments begin!

On Tuesday, Knoah has an appointment with the ENT to have his adenoids and tonsils checked. Over the last few weeks it seems everyone is asking me “How is he sleeping?” I respond, “Okay, he had been sleeping well, but lately he has been waking up 2 to 3 times a night”.

Then it hits me…he’s snoring. A light bulb moment!

Children with Achondroplasia have abnormally small airways, because of this, their adenoids and tonsils tend to get in the way in some cases. This causes them to snore while sleeping or wake up gasping for air. A *possible* reason he has been such an awful sleeper lately.

When their adenoids and tonsils start to get in the way, it cause the person to have apnea. Apnea, which we are familiar with causes the child to momentarily to stop breathing. The usual course of action is to remove the adenoids and tonsils through a procedure known as Adenoidectomy and Tonsillectomy. This helps the child breath easier and helps with the removal of CO2 in their bodies. When they can’t expel the CO2, two different machines are used: a CPAP or Bi-PAP. These aid in the removal of CO2 from the body.

When CO2 levels increase and the body cannot be rid of it, the level increases and damage to vital organs occur. The longer it goes on, death occurs.

So, hopefully, he doesn’t have a problem and he continues to be just a loud breather.

We’ll see what they have to say.

Last night we (the whole family) played in the living room. It was nice to have us all together! Will didn’t have to work, so it was nice to have some quality family time!

One of Knoah’s favorite toys is a walker my best friend Kellyanne got him. Since he is pulling himself up, he is wanting to walk. This helps him cruise around the house. He doesn’t get very far, but he can walk across the room with it!

Then when he gets tired, he starts to look like he is struggling.

After the walking, he decided to play with one of his birthday presents. It is a a motorized train that rolls across the floor!

Sweat Cinema presents:

Knoah vs. The Train….dum, dum, dum.

The Train lost it’s epic battle against Knoah! Towering a whole 2 feet, Knoah swipes at the carcass of the plastic, music maker and de-rails it!

Chaos and damage takes a toll on the toddlers tummy! The raving 1 year old is hungry!

It doesn’t end well…Knoah is MAD that he can’t eat his conquest!

I guess baby food while have to do….

The End!

He had such a good time at his party!! He was surrounded by so many people who love him that he was overwhelmed by the attention!! More about that in a minute!

The first arrival of the day was Dave (LunaPierCook) and his wife Mayor Mary!

Dave, being the considerate and thoughtful man he is, thought it best to indulge Knoah’s “drumming” addiction. They got him a Xylophone, which he will get many days of joy out of it! Thanks guys!! *Oh, my head….*

Owen, Cat and Jennifer came down from Grand Blanc, Michigan!!

Owen is ABSOLUTELY BEAUTIFUL!! His eyes just glow with happiness! He smiles whenever you talk to him!

I am so glad we all finally had a chance to meet! Sue and Adian, also made it to the party, so the three boys had a playdate!

After a few people arrived, we decided to go ahead and do his cake! He wasn’t sure what to make of it. He stared at the bright light on top of the cake as we sang “Happy Birthday”.

He looked a bit confused as to what the commotion was.

He gets his little fingers in the cake and backs off a bit. I don’t think he like the feeling of the frosting in his fingers.

After natural curiosity set in, everything gravitates to his mouth, he started digging the creamy sweetness!

Then he started to get tired and rubbed his face.

Owen also got into the swing of things! This is the first time he has ever had cake! I think he liked it! Sweets for Sweets!

After Knoah crashed for a few minutes (he literally feel asleep in the middle of his party) we opened his gifts. One of his gift’s was a Leap Frog Activity Table from Sue and Adian.

The boys really loved this! In that guy fashion, they stood around, tinkering with the toys, talking about the future of LPA and what office they were going to hold. Knoah, of coarse, will be President!

Knoah recieved a lot of great gifts! I was just happy to share this event with the many people who have been there for us! Your attendence was most appreciated!!!!!

A HUGE thank you goes out to my mom and my aunt who supplied all the food for his party! They made his party one to remember!! THANK YOU!!!

Thank You everyone for celebrating with us!!!

Edited to add:

I had forgot to check the mail yesterday, but when I did today, Knoah got a card from Samuel!! Evelyn, Samuel’s mom wrote how great it would be if we lived in Florida, so Samuel and Knoah could play together!! I agree, they would be best buds! Samuel and Knoah would have lots of fun talking with each other and playing!!

I hope one day we can pay them a visit and I can give Samuel lots of hugs and kisses!! My goodness! The friend’s Knoah has! Near and Far, everyone means the world to me!!

Thanks Samuel, Evelyn and Ralph for the card and well wishes!!!

Knoah recieved four very special birthday surprizes today!!!

A few very special people sent Knoah birthday surprizes!!

So to officially begin the event, Jacob, Hannah and I sang him Happy Birthday. Will, unfortunately had to work.

He was quite “stunned” with this attention!

I debated if I wanted him to wait until Saturday to open them or if he should open them today. I opted for today since today IS his birthday!

He recieved from Andy and Clare the cutest talking bear! It has stars on different parts of his body and when you press them they describe what it is. It sings a song! Knoah really got a kick out of it!

Then we (I say we because well, he needs adult supervision…he doesn’t quite understand yet not everything is edible.) opened up a surprize from Ann Freund.

He recieved an adorable teddy bear and a Clifford the Big Red Dog stuffed animal. Which he loves!

Knoah will really enjoy this gift as it has balls (easy to throw at people) and a hammer (easy to hit things with…toy not needed. May also be used to hit brother and sister when the approach to closely. SWEET!)

He also got two books! He will love these at bedtime!

Then we moved onto Ang’s gift.

*For clarification purposes, Ang and I debated back and forth for about 20 minutes if he should open it now or wait. After discussing it, she says to wait. Okay. She then calls me back, oh 30 seconds later and says to open it and call her back. LOL*

So, we open Ang’s gift and it’s a personalized “I See Me” book.

This book spells out Knoah’s full name in a story told by forest animals! It is so cute! The pictures are vibrant and colorful! He even decided it was appropriate to leave baby teeth marks in the corners. Ya know, something to remember the event. Baby teeth marks will be nice to see in, say 30 years!

Such a unique gift!! I can’t in good conscious let him play with this, sorry Ang! This is going to be a keepsake! I’ll let him look at it from behind the alarm-guarded glass!

She gave me the info about the book. If you go to the website and place an order, you can get free shipping!! The code for the free shipping is FSD11325. It is good for standard or 10 day shipping!

His last gift for today was a biggie!!

He recieved a call from Clare and Andy!! I was probably happier about it than he was, all he said was “ahhhhh” “blugugug”. So, I did all the talking!

It was SO GREAT to put a voice to their faces!! Clare has the sweetest accent! Her voice is very feminine and her giggle is even cuter! It was funny because she said I had a great accent. LOL.

Andy also has the British accent, I love it!!

We had a great conversation and we also talked about Theo. Precious baby.

They both were very sweet and it was very kind for them to call to wish Knoah a happy birthday! We discussed their attendance at the party and while they unfortunately can’t make, they will be there in photo’s!

Their phone call made my night!! I gave Knoah big kisses and hugs from them and he drooled on me for them. Thanks babe!

I know he enjoyed his gifts! He played on the floor with them till he fell asleep!

Knoah’s Party Information:

Saturday November 17, 2007
20 North Roessler- Social Hall
1:00pm to 5:00pm
Open House

I would like to extend an invitation to all those who have followed Knoah’s progress throughout the year. Without your support, prayers and well wishes, it would have been difficult to do this alone.

You have been great friend’s and this celebration isn’t just about Knoah turning one. It is about friend’s and family. It is about the celebration of the human spirit and freely giving information. You never know who you might help!

Thank you so much for helping us get through this year!!

When we finally left the hospital, there was only one place I wanted to go.

Meme’s house.

She wasn’t able to make it to the hospital to see him. She was confined to her bedroom, but I knew she wanted to be there with me. That drive home was the longest. I couldn’t wait to show her, her “little person”.

She was a faithful viewer of “Little People, Big World”. At one point she said to me “I love watching that show. Now here you are, your going to have a baby and he’s going to be a little person! We have our very own little person in our family!”

She was so proud!

I walked into her bedroom, placed Knoah’s car seat on her bed. I uncovered him, took him out and place him in her arms.

She was proud. You can see it in the photo’s. Her eyes gently looking at him. Her touch softly stroking his cheek. She loved him. She accepted him as her 6th great-grandchild.

The weeks went on and I feverously worked to set up appointments with his doctor’s. I started the blog about this time. I talked about the different thing that could go wrong and what to watch for. Christmas came and went.

January 5th. Was like any other night with a new baby in the house. I took pictures of Knoah. A full body pic to compare how he had changed in the last 6 weeks. Little did I know, this could have been my last photo of him.

I still see this picture and tears form in my eyes. I quietly refer to this photo as “The last one”. Had the situation taken a different road, had I not of noticed. Had I….it would have been the last one.

We ended up in the hospital the next day. That ride in the ambulance was the scariest ride I have ever taken. Delta response. My heart still, after the months that have gone by, still ends up in my throat. Seeing Knoah’s tiny body struggling for life, hearing his breaths, gasping for air.

We made it to the hospital and things settled down, or so we thought. January 7, a bit past midnight, Knoah crashed and his monitor’s went wild. Picking up my son’s lifeless body. That blue hue enveloping him. Limp. Yelling his name. Knoah, KNOAH! NO! KNOAH! A nurse taking him from me and watching him slump forward like a rag doll.

I didn’t know it at the time, but in the room with us was a girl with daughter. Heather and I would become friends and to this day, she is my. I say “my” because something happens to people when death is at the door. Whoever is near you at that moment, it is like your bonded together. It’s like the life force pulls at everyone in the room, to strengthen, to fight off death. We did that night and I am ever grateful!

They transferred Knoah to the PICU and he remained there for 6 days. I woke up that night. No longer was I just a mom. I was his advocate. I was going to have to be the one to fight for his life. I am the one to tell the doctor’s what tests he needed to find the cause. I am Knoah’s protector.

We spent several more weeks in the hospital at various times. EEG’s, EKG, Sleep Studies, Blood Work, a Spinal Tap, MRI’s, CT’s.
You lose track of the testing.

Then, something happened. I don’t know what it was or why. Everything calmed down. It was like the more he grew, the better he became. I don’t question why, I praise GOD. It is a blessing and he has showered us with miracles.

Knoah grows. He starts to crawl.

Pull himself up. His back is an issue, but we are working through that, but he keeps breathing. Pink, my favorite color on him!

He is losing his baby face. He is looking more like a toddler. He is acting like a toddler. His temper is bigger than he is. We need to watch that.

His 1st Birthday, something I couldn’t have said with confidence this time last year we would have seen. I am still worried something will happen to him. I guess when you live in crisis mode for so long, it’s hard to get out of it.

I didn’t think this blog would become what is has. A place for me to vent, sure. A place to keep all my thoughts, yep. A place that families can find a starting point for support and strength. Didn’t even cross my mind.

I have meet a lot of great people along the way! I have made some wonderful friends. Friend’s who live all over the world. Friend’s who have had different experiences, friend’s who have had the same experiences.

I have grown so much over this last year. I have become more compassionate, more considerate, more kind.

I know why Knoah was chosen for us. He has helped me!

His 1st Birthday!

Knoah Franklin Sweat
was born November 15, 2006 at 1:16am
He weighed 9 pounds 6 ounces and was 22 inches long