The 8+ hour car trip!

For us to get to Grand Rapids, it’s suppose to take about 4 hours or so. With any other child, I would dread it. With Knoah, it’s a breeze, thank god!!

He was so good all the way there!! We made several stops along the way!

The first stop was to meet Amy, Jeff and Thomas for lunch!! We had a fantastic time!! We sat there for almost two hours just talking and laughing! Thomas is so cute! Whenever he talked about Knoah, he referred to him as “my Knoah”. My heart melted!

They got along so well! They sat at the table and played with Thomas’s cars. Thomas took a lot of pictures with Amy’s camera and we got a lot of pictures of the boys!

Lunch was just what we need before we finished the trek up.

Thanks Amy and Jeff!!!!

Once we left there, we headed up the road about 15 minutes to meet with an old friend of mine. We chatted about an hour and went on our way! It was great to see Libby!

We got to Grand Rapids about 6pm or so. We left Monroe at 9am!

Once we got to Larry’s (Libby’s dad’s) we settled down for an hour and then went out to eat. Sue and Jeff (Aidan’s mom and dad) met us at Malarkey’s. We also chatted and talked about our upcoming appointments.

Here is where I give my disclaimer:

Because things have been going so well and I thought we had missed the bullet, the following I am still trying to digest. It’s one of those head shaking moments that you don’t quite understand, but kinda knew was coming….kinda….

Meeting with Dr. Pauli and Casey is always a learning experience!! To be honest, *if* Dr. Pauli ever retires, I will be heartbroken! So, he is NEVER allowed to retire!

Knoah was actually pretty good considering we were at a doctor’s office! He fussed some, but not like last time. I had well prepared him beforehand!

The run down on Knoah goes like this:

1. His back.

He needs to be braced. His Kyphosis at this point is irreversible by 35 degrees. What this means is, when pushing on his Kyphosis, there is about a 35 degree curve that cannot be reduced. This means, even with bracing, he will always have a hump on his lower back. Not good!!

We made the decision that we are going to have Dr. Forness start following Knoah. Prior to this we were seeing Dr. Yassir. I really, really like Dr. Yassir!! He is knowledgeable and more than capable handling Achondroplastic patients!

The reason we are having Dr. Forness follow Knoah is that because Knoah’s Kyphotic curve is progressing at such a rapid rate (faster than it should), I feel we are running out of time. Knoah has not avoided surgery yet. If bracing doesn’t help, we could be forced into a Laminectomy or simple terms, removing of vertebra to straighten his spine out if complications from the Kyphosis occur.

So, in about 2 weeks, Feb 23rd, Knoah and I have to make the trek back to Grand Rapids to meet with Dr. Forness. We will get x-ray’s and get him fitted for a new brace.

Life is going to start getting real expensive with all the traveling.

2. Knoah’s PE Tubes have fallen out! OH NO!! They were just there a few weeks ago!! I knew he had an ear infection last week and I commented to Will that it’s odd he has fluid draining from one ear and not the other. His one ear is completely closed and the other is still open a bit. So, Knoah has to under go surgery again to have the tubes replaced with longer lasting PE tubes. I made the appointment with the ENT in Ann Arbor and we will see him the 24th, The day after we get back from Grand Rapids. Not Good!

3. Knoah has a chronic runny nose. This is common in children with Achondroplasia. Their nasal and sinus cavity is smaller than average height kid’s, so all that drainage has to come out. With Knoah, he also has, what I suspected was chronic sinus infections. You know, that green goopy snot that likes to hang out at the base of the nose. If you ever see me picking his nose, I am sorry. Sometimes a tissue just don’t cut it.

Well, Dr. Pauli said that it is true, Knoah is having chronic sinus infections. When I asked, how do you know, because this is the first time he has seen him in a year. I am curious, he said that one of the benefits with Knoah having so many MRI’s is that he can see the nasal cavity. On Knoah’s MRI’s he is seeing constant sinus changes. Knoah has thickening of his sinus membranes which tells us that a sinus infections are running rapid in his nose. So, he has recommended when we the ENT to see what he wants to do about Knoah’s snotty nose. He will either recommend a long coarse of
antibiotics, a nasal spray or surgery. NOT GOOD!!!

4. Knoah’s hearing. We have to have another hearing test to find out how much hearing loss he has. We know right now, there is probably fluid in his one ear and he may not be hearing so well. We have to find out what level the damage is at and start working with him to correct his punctuation. If it’s really bad, we may be looking at hearing aids. There is familial hearing loss on both sides of our family, so genetics are probably not helping him. Again, the ENT will help us sort through this. NOT GOOD!!!

His weight is at 23.5 pounds which puts him in the 25th percentile on the achon charts. This is very good!! He weighs less than the average achon child, so weight issues are not an issure for us right now!!!

His height is at 29 inches which is on at 50th percentile. He is the perfect height!!

His head size is 56 cms which puts him in the 60th percentile! This is also very good!! Dr. Pauli is not concerned with the growth. As long as Knoah doesn’t start losing skills, we are almost clear from the risk of Hydrocephalus!! YEAH!!!

Outside of that, Dr. Pauli saw Knoah’s temper. Knoah was getting mad and throwing things and Casey just loved Knoah’s pouting lip!

So on the outside, Knoah got a clean bill of health. On the inside, not so much!

I was not expecting everything that was thrown at us. I was, I’ll admit, expecting him to be great! We knew his back was a concern, but I was not expecting the issues with his nose and ears. I could have started crying right there, but held off. I was more in shock than anything.

Even though raising a child with Achondroplasia has it’s medical complications, I was thinking we were about done. I am upset that we’re not. I am not surprised, I mean this is Knoah we’re talking about and with him life is all about surprises, but, I had hoped, you know.

Oh well. It’s time to start juggling things around to do what has to be done! It comes with the territory of having such a remarkable and amazing kid! Unique in more ways than one, Knoah is worth it!

Rainbows = Life’s alright!

Genesis 9:8-17 (New International Version)

8 Then God said to Noah and to his sons with him: 9 “I now establish my covenant with you and with your descendants after you 10 and with every living creature that was with you—the birds, the livestock and all the wild animals, all those that came out of the ark with you—every living creature on earth. 11 I establish my covenant with you: Never again will all life be cut off by the waters of a flood; never again will there be a flood to destroy the earth.”

12 And God said, “This is the sign of the covenant I am making between me and you and every living creature with you, a covenant for all generations to come: 13 I have set my rainbow in the clouds, and it will be the sign of the covenant between me and the earth. 14 Whenever I bring clouds over the earth and the rainbow appears in the clouds, 15 I will remember my covenant between me and you and all living creatures of every kind. Never again will the waters become a flood to destroy all life. 16 Whenever the rainbow appears in the clouds, I will see it and remember the everlasting covenant between God and all living creatures of every kind on the earth.”

17 So God said to Noah, “This is the sign of the covenant I have established between me and all life on the earth.”

I have wanted to post about this for….oh, I don’t know…a year or so. I am bad, I know…throw me a bone, okay! 😉

Right after Knoah had his Tonsils and Adenoids out in late January 2008 and ended up contracting Influenza. We spent 8 or so days in the hospital. At a certain point, we transferred him from our local hospital to U of M. On the day of discharge, they were having all the kid’s make a Pewabic pottery tile for the new new C.S. Mott Children’s Hospital and Women’s Hospital. So, I took Knoah down and we made his tile.

The theme I did was the above passage.

When we chose Knoah’s name, this passage was key for me. A new life. A new beginning.

Having a child with Achondroplasia, in the beginning is scary. Doctor’s give you the doom and gloom. They encourage parent’s to abort because “this child will face difficulties and hardships”….

I consider ourselves the lucky ones, both our Perinatologist and Geneticist simply said, this child will be short. Sure they told us there would possibly be medical complications, but they never said that he couldn’t live his life. A life that would require some thought into height-based forethought, but still it was a life worth living.

Everyday I see him, I am reminded how precious life is. I hold my kid’s closer, I spend that extra moment stealing a glance when they don’t know I am looking.

About six months ago or so I received a package in the mail. It was labeled Mott’s Children’s Hospital. It was rather thick, so I opened it.

It was a framed picture of his tile, with his name and the planned location of his tile.

Because it was a spur of the moment project, I wanted do something that reflects Knoah. What was the one thing I wanted to see? His starfish hand.

I have this picture sitting on my computer desk and I often look at it to give me inspiration. The shape of his hand is different than the other kid’s. The rainbow is for “God’s Promise” to all of humanity. His name is Knoah. It’s simple, but beautiful!

On Wednesday, we will be making the semi-annual trip to see Dr. Pauli in Grand Rapids. However, prior to getting there, we will be meeting Amy for lunch!! Amy has been a great friend and I am enjoying getting to know more and more about her. I am looking forward to meeting her youngest Thomas. Thomas and Knoah are very close in age, so lunch will be fun with two toddler boys!

As for Knoah’s appointment, luckily, there are no major health concerns except his back and head. His head we basically have ruled out, but Dr. Pauli wants too see the images to make sure. I know we are having x-rays done for his Kyphosis and then hopefully, we will meet with Dr. Forness.

With all of the issues with Knoah’s spine, I hope we will be able to have Dr. Forness follow Knoah through life, or at least until his Kyphosis is resolved. I am going to take his brace just so he can see it and make a recommendation about it.

So, till I return, don’t get into to much trouble without me!

Bearing it all…AKA TMI…Tonya…WHY?

While it pains a part of me for sharing this…the other part says it is just too funny to keep to meself! I sometimes wonder what it is within me that feels compelled to share some of the things I do…

Oh well….

Forewarning:

If you are absolutely disgusted by fat, ugly, momma baby bellies, STOP READING!

There is a little (fatty) secret most mom’s share. The “baby” belly. In typical pregnancy’s, mom’s post baby belly, slowly regains it’s former shape. Albeit, it maybe a little more softer than it was but it is workable.

However, when a women’s pregnant belly expends further than it’s suppose too, well, that’s when the carnage begins!

Fair warning given!

During my pregnancy with Knoah the first real clue something was going on was the amniotic fluid. I was growing faster than I should have been and it wasn’t because I was eating to much.

First thought….Am I having twins?

No!

Five Months Pregnant, Side View

Polyhydramnios or excessive amniotic fluid is common in pregnancies where there is a skeletal dysplasia. It is most common (in skeletal dysplasia pregnancies) with lethal dysplasia. The reason for this is that as the baby grows and urinates, they are suppose to breath in or swallow the fluid build up and reproduce it or exhale it. This helps with lung development. Mind you it doesn’t happen with all skeletal dysplasia pregnancy’s but for a few, it does.

Five Months Pregnant, Front View. Isn’t your belly button suppose to NORTH of the Mason-Dixon Line and not heading toward Cuba?

If a fetus has a skeletal dysplasia, the baby is unable in intake enough fluid to keep fluid levels within normal range. Their chests are much smaller than average height babies thus lack the ability to remove enough fluid.

This fluid continues to build up, giving a women the appearance of being pregnant with multiples.

When I was 36 or so weeks pregnant with Knoah, my abdominal measurement was about 44-45 weeks. Doctor’s get the fundal height measurement by having you lay on your back and measuring the public bone to the top of your uterus. Each cm should represent about one week of gestation. So if you are 30 weeks, you should measure about 30 cms, give or take a few.

I was measuring the size of a 44 week pregnant women. Pregnancy is only 40 weeks. When I got pregnant with him, I was a size 4-6. I am 5 feet 6 inches tall. Sometime before he was born I was 220+ pounds. I stopped having the doctor tell me, the last time he told me I burst into tears.

So, as my fluid increased, so did the size of my abdomen. By the time Knoah was born, I was measuring about 56 cms. It was extremely painful. Every bone in my body hurt. It was painful to walk, sit, sleep, breath, etc.

Each day that went on was utter torture.

The night before Knoah came into this world!

When my water broke, I knew it. There was a pop and then a slow gush of fluid. How slow…my water leaked for nearly 2 hours. That’s quite a waterfall!

In the wake of Knoah’s destruction on my tummy, I will now show you what happened. It’s not pretty, nor is it comfortable. I have daily back pain because my abdominal muscles are no longer in their proper place. I was informed about a year ago that because I had so much fluid I have abdominal separation or Diastasis Recti. The amount of separation at this point is about 2.5 finger widths, which is greatly improved from where I started.

So, because I am a sucker for “unintentionally” making a fool of myself and since I am not on the market nor do I expect to be anytime soon….although after this my husband may put me up for sale to find another model….

Here is what my tummy looks like now…

OMG!! MY EYES are BURNING!!

The sight has even scared Knoah…

Oh, okay, the side view is much better, but my eyes are burnt so I can’t see well…

OMG! This is SO WRONG!!

Put IT out of it’s misery!!

That much destruction should be ILLEGAL! That is SO NOT RIGHT!

“Do you see what I did to mommy! HA!! I love it!!

Yes, he is even laughing at me!

So, for the last two years I have been pinning away for a tummy tuck. For appearance sake and self-esteem sake. When my beautiful daughter sees my tummy, she cannot help herself but want to reach out and jiggle it! REALLY?

I have tried various exercises to flatten Mount Belly Fat, but no such luck. I am now on Pilates, hoping with all hope that it does something. If not, then surgery will be my only option.

I have to keep it in perspective that right now I am about a 8-10 jean size. Which is great….then I see these pics, I am like…

“Oh! Excuse me…I just threw up in my mouth a little bit”

I wanted to share because well, if you feel the way I do, your not alone!

P.S. A lot of belly fat was harmed in the making of this post. My dignity, ability to be seen in public and self-esteem is being picked up off the floor as I go.

P.S.S. It’s okay to laugh 😉 I did.

Can you hear me now?

This is a little diddy that Knoah has been working on for all of you! I realized that many of you haven’t heard his voice yet. It is strong, deep and can be loud! 😉 Since he can’t say “Hello” yet, we changed it to “Achoo”, it works, so….

Here is Knoah singing the “Hello” song!

We also have another blog!!

Chelsea, mom to Kai has decided to share her experience with raising a child with dwarfism. Kai was born with Diastrophic Dysplasia. He is adorable!!

http://oursonkai.blogspot.com/

New Blog Alert!

We have several new blogs relating to dwarfism and I want to share them with you!!

Reenea, mom to Emma is a member of LPA and POLP. Emma has Achondroplasia. She is a cutie and we got to spend some time with them in October!! Reenea is active with her district and even runs the website for District 5!

http://reeneaehle.blogspot.com

http://lpadistrict5.synthasite.com/

Athena, mom to Tori has taken on blogging!! Athena sharing her family and the adventures they encounter!

http://tramenglish.blogspot.com

Gary Arnold, an active member of LPA and Disability Advocate started his blog Common Ground in 2008. From his website:

In general, this blog will focus on issues related to disability with an emphasis on dwarfism within the context of my position as Vice President of Public Relations for an organization called Little People of America. LPA is a national membership organization that offers support and resources for people of short stature and their families. Also, this blog will make an attempt at commentary on current issues affecting people of short stature and people with other disabilities. In addition to my role with LPA, I work as the public relations coordinator for Access Living, a disability rights organization serving Chicago.

I had a chance to meet Gary at the Detroit Regional in 2008. Gary is a fantastic guy who is passionate about advocacy and is a wonderful asset to LPA!

http://dwarfism-lpa.blogspot.com/

Elizabeth, mom to Ashley started her blog early this year! Elizabeth and her family live here in Michigan, yet we haven’t had a chance to meet! Hopefully that will change soon!

http://ashleybrookeangel.blogspot.com/

Who noses?

Honestly, can anymore drama fill my household?

This is us we’re talking about, what do you think?

Yep!

In his defense, Knoah, while absolutely entertaining, lovely and fun, he continues to be the least graceful creature on the face of the planet! He has officially surpassed Hannah by a nose!

Yesterday, while he was playing *shaking head* (wondering why I even let him wonder around) either lost his grip or footing (this is still under debate because I was the one home and I clearly saw what he was doing but it happened so fast that I was stunned he went down in a blaze of glory)…fell face first into the entertainment center.

At first, after picking him up, I looked to make sure there wasn’t a gush of blood pouring out of his mouth and nose. CLEAR! WheW!

A little blood from him gums but nothing to stress over.

Then as mommy instincts hit, I rub the tip of his nose and say “Oh, you have a boo-boo!” Thinking I was using it as a teaching moment. Nose hurts = boo-boo… clueless that this action would prompt a flurry of phone calls.

Huh! That’s weird. The tip of his nose feels like a butt….meaning, there is a long, deep crease under his skin, right up the middle of his nose.

Now, being a newly re-integrated viewer of TV, I was watching a reality TV show and moments before had thought “Really, if this is entertaining, we really would be a hit! There is ALWAYS drama….”

Bam. So, feeling his nose, I call several people and ask them to rub the tip of their noses to see if they have a crease. Jacob and Hannah don’t. My mom don’t. Another friend doesn’t.

Oh Knoah!! Did you break your nose!

UNBELIEVEABLE!!

So, after several phone calls, I call the peds. Have I mentioned how much we love her?

So, she says to bring him in….

Yep, he kinda, sort of broke his nose.

He didn’t break any bones, because well, he has a really short nasal bridge but he certainly separated the cartilage.

So much for a relaxing day at home doctor free week!

Knoah’s nose is a bit puffy, but he didn’t bruise.

Really? *While laughing* I imagine Knoah wrapped in bubble wrap until he’s 18….

New York! New York!

The LPA National conference is quickly coming upon us!! I am super excited!

Jacob has wanted to go to New York since he was little and I am hoping we’ll be able to take him!

I have been researching transportation cost, trying to figure the best way to go…drive, fly or train? I do know at this point, I am thinking about sponsors! That would certainly help with the cost, but I don’t know how to go about finding some.

I though I could “rent our back” for the week. Meaning, find someone looking for low-cost advertising on tee shirts that we (family) could wear the week in NY. It certainly would lessen the amount of clothing we have to take and lessens the stress of figuring out what to wear in one the most fasionable cities in the world!

I have also thought about creating some of those jelly bracelets to sell to fund raise.

I know the hotel block is now open, but I have yet to make the reservation. I need to do it soon or all the rooms will be booked. This year we will be at the Marriott at the Brooklyn Bridge! The rooms are beautiful as are the views, I am sure!

I know a lot of people, particularly here in my hometown maybe reading this and think “Your losing your house! Instead of thinking about going to New York, why don’t you find a way of saving your home!”

My response, we did try. The banks received a $700 BILLION dollar bailout, which their not using for homeowners! Some of that money came from our paycheck, as it did you, your neighbors, etc. It’s not going where it’s suppose too.

The kid’s have been through a lot over the last two years. They had a sibling added to their family, not to mention a sibling with serious medical complications. There are days they don’t know when I will be home with Knoah and honestly, times when they didn’t know if Knoah would come home. Their world has been flipped upside down more times than I can count. They deserve this. We deserve this.

We haven’t been on a “family vacation”. Ever! We went to the LPA National conference in 2008 and it was great! Will and Jacob left early, because Will had to work…how well that worked out. Loyalty must mean nothing now a days…but any who…Jacob has been asking since he was little to go to NYC and this is our chance!

When we came back from National I started a LPA-NYC money jar. Ever bit of spear change and money I had in my pocket I put in this jar. We have managed to save over $200.00! In coins!

So, while it’s not a lot, it’s a start. The next few months will be helpful! The cost of this home will be a lot less than our other one. I am curious to see the heating bill. An average heating bill to heat the other house during winter was about $350.00 a month. I am expecting this house to average about $150.00 at worst. So, technically, there’s $200.00 a month I could add to the NYC fund. I also am going to add the excess money from what was our mortgage payment to the fund.

I am hoping to have over $3000.00 to go. This will pay for our transportation, hotel, food and other items to see the sights of the Big Apple! Oi! Expensive!!

They deserve it.

We have decided to take the train VS. flying. The train is much less expensive than flying, by like $300+ dollars. It also helps that Knoah…ahum…is under 2….if your catching my drift.

Hey, you can’t fault me….

So, that is what is what on the home front. Life is good. It may not be what we have envisioned, but when is it ever? You just have to keep on smiling! 😉

Prayer Request

Jane, Jakey’s mom called me last night. Jakey is one sick little boy right now and I am asking you keep him and his family in your thoughts and prayers! As of last night, he was in the ER awaiting some tests and from what I could hear, he was not the happy, smiley boy I am use to seeing!!

Also, keep Jennifer and Isaiah in your thoughts and prayers. Isaiah has been having some blue/apnoea episodes. Jennifer, rightfully so, is terrified to go to sleep.

This is a scary time for these families right now. Let them know, we understand and their not alone!!

My blog has lost it!

Is it just my screen or can you see it too? The area down by the “Link” column is leaching into my post section….I mean REALLY!

Okay, any suggestions? I can’t find the problem!!

Now, it’s fixed? *eyes rolling*

Johnny Depp anyone?

Johnny Depp?

What does he have to do with dwarfism? Well, I just received an email that there is an auction going on and 10% of the proceeds will go to CoDA.

The Coalition for Dwarf Advocacy (CoDA) was formed to advocate for individuals with short stature (dwarfs) in the areas of medicine, vocation, education, adoption, and public accommodation; and work with and assist other nonprofit organizations for the betterment of the lives of dwarfs, and to increase public awareness of the needs and abilities of such individuals.

CoDA is a nonprofit corporation under IRC 501(c)(3) for a public charity under IRC Section 170(b)(1)(A)(vi).

CoDA was started to continue efforts to help short statured people live full, barrier-free lives. They focus on areas such as health care, employment issues, accessibility and adoption.

Marty Klebba, an active board member of CoDA and member of LPA, starred in all of the Pirates of the Caribbean movies with Johnny Depp.

So, with Marty being a super cool guy and did me a favor once, I want to help him out!

To visit and bid on the auction copy and paste this address into your browser:

http://cgi.ebay.com/ws/eBayISAPI.dll?ViewItem&item=280302299809&_trksid=p3907.m32&_trkparms=tab%3DBidding

Happy Bidding!!