Thursday, March 29, 2012

And Finally Noah's New Chair

 Noah was fitted for his new chair today.

He looks so comfortable and grown up. 

Wednesday, March 28, 2012

Noah's Day at the Horror Hotel

Every October we would take the girls to Horror Hotel. Its a museum of modern horror and classic horror.  It is something we always look forward too.  Sadly we have never been able to take Noah.  Its a guided tour and it also goes upstairs. It always been too hard to take Noah.  Last Thursday, they had an Open House where you could just go in to look around.  Scott contacted Dave Lady and asked if it would be possible to bring Noah in to see the first floor.  He said sure thing, we even have a ramp we can put out on porch so Noah can get in easier.

Noah absolutely loved it.  As soon as we got in he started looking all around.  It was really awesome to watch Noah finally be able to see Horror Hotel.  Thanks Dave for letting us bring Noah.
If you would like to visit the Horror Hotel this next October check out their website.  Its a great family event because nothing jumps out at you.

Friday, March 23, 2012

Noah's First Dance

 I know I posted these to Facebook already but, I wanted then on the blog as well for the memories.
 Noah had his first dance today. It was fun watching the kids enjoying themselves.

 Noah and Ms. Harding.  The boys love when Ms. Harding helps in their class.

 Theresa was a bit embarrassed at first to dance.  Once she got going she was having so much fun.
 Paige and Noah dancing.

 If was awesome to experience Noah's first dance with him.

 Noah with Mrs. Wilson.  She is one of the  awesome aides in Noah's classroom.
 Mrs. Wilson is one of the reasons Noah loves going to school.


 Mr. Argo is another one of the awesome aides in Noah's classroom. Noah adores him.  He is so good with the kids.
Too Cool for School

I'm so glad I made the decision to put Noah at the Shelby Middle School.
He has just blossomed and he loves being there.  Thanks to all his teachers and aides that have taken the time to show Noah that going to school can be fun and it is something to smile about.

You are probally asking?

How did it go?

  Our first appointment that day was the dietitian,  She came out with an attitude.   She weighed Noah and then went right into what we are doing wrong, I said, "Wait a minute...  what did he weigh today?" She said, "Oh 59 something." She then preceded to ask me if I was putting butter on his vegetables and sugar on his fruit.  I told her no, that I go the more healthy route like olive oil and flax seed oil.  I really must of hit a nerve because she got in my face and was telling me the benefits of butter and sugar.  I guess it was a good thing I didn't ask her how I was going know if the butter stayed on the vegetables and the sugar stayed on the fruit.  She also told me that the Cleveland Clinic wouldn't keep her around if she was making kids unhealthy.  Like I said, I must of hit a nerve....

   The next appointment was with Dr. Kaplan his GI doctor.  I just love Dr. Kaplan.  She has been seeing Noah since he was 3 years old.  She is amazing.  When she looked at Noah's weight she was so excited.  He had gained 2lbs. Did you see that?  2lbs!!!!!   Praise God!!! She was even more impressed that he had gained that in a week after being in the hospital for dehydration.  I asked if she was worried about him being malnourished.  She said, "Not one little bit"  She wants a weight check in 3months and doesn't want to see him for another 6 months.

  Before I left I made an appointment for a weight check in 3 months and the GI and the pulminologist in 6months. By the time I got home I decided to cancel the weight check.   There is no reason to drive 2hrs just to be down graded and to feel like the worst Mom for Noah, just to get his weight checked.  We'll be going to his pedetrician and they can fax it.  We will not going back to that nutrionist, period!!

Monday, March 19, 2012

I've Been Here Over a Decade

                                                                 By Cathy Anthony
a follow-up to the original
Welcome to Holland by Emily Perl Kingsley

I have been in Holland for over a decade now. It has become home. I have had time to catch my breath, to settle and adjust, to accept something different than I'd planned. I reflect back on those years of past when I had first landed in Holland. I remember clearly my shock, my fear, my anger, the pain and uncertainty. In those first few years, I tried to get back to Italy as planned, but Holland was where I was to stay. Today, I can say how far I have come on this unexpected journey. I have learned so much more. But, this too has been a journey of time. I worked hard. I bought new guidebooks. I learned a new language and I slowly found my way around this new land. I have met others whose plans had changed like mine, and who could share my experience. We supported one another and some have become very special friends. Some of these fellow travelers had been in Holland longer than I and were seasoned guides, assisting me along the way. Many have encouraged me. Many have taught me to open my eyes to the wonder and gifts to behold in this new land. I have discovered a community of caring. Holland wasn't so bad.

I think that Holland is used to wayward travelers like me and grew to become a land of hospitality, reaching out to welcome, to assist and to support newcomers like me in this new land. Over the years, I've wondered what life would have been like if I'd landed in Italy as planned. Would life have been easier? Would it have been as rewarding? Would I have learned some of the important lessons I hold today?

Sure, this journey has been more challenging and at times I would (and still do) stomp my feet and cry out in frustration and protest. And, yes, Holland is slower paced than Italy and less flashy than Italy, but this too has been an unexpected gift. I have learned to slow down in ways too and look closer at things, with a new appreciation for the remarkable beauty of Holland with its tulips, windmills and Rembrandts.

I have come to love Holland and call it Home.

I have become a world traveler and discovered that it doesn't matter where you land. What's more important is what you make of your journey and how you see and enjoy the very special, the very lovely, things that Holland, or any land, has to offer.

Yes, over a decade ago I landed in a place I hadn't planned. Yet I am thankful, for this destination has been richer than I could have imagined!

Wednesday, March 14, 2012

Its Good to be Home

Feels so good to be home and holding my napping little man.
Noah has only been in the hospital sick 2x in his 14 years of life. I guess you can say that's pretty good. It was by far the best experience we ever had while in the hospital.  Noah has been in the hospital for test, surgeries and being sick.  I have never felt like part of the team trying get him well, like I did this last weekend.  They really listened to me. The one time he fell asleep Sunday afternoon for a short cat nap a nurse came in and wanted to check something, I kindly asked her to come back. Since it wasn't a matter of life or death, she listened to me.  When the doctor was doing her rounds Sunday night I talked her into letting Noah go home and sleep in his own bed. I was so impressed and glad I was being heard. It defintlely gave me the boost of confidence I needed when I take Noah back to the Cleveland Clinic next Tuseday.  I would be lying if I said I wasn't worried.  I plan on being nice but, speaking my mine about the whole idea of Noah weighing more.  All the work I've done this last 5 weeks is now gone......
Last time Noah was at the Cleveland Clinic:                            57.8lbs.
Doctors office 2 weeks ago:                                                     59.4lbs
Hospital Sat. night:                                                                    58.9lbs.
Sunday afternoon after being pumped with fluids:                       60.9lbs.   
                   Monday morning at the Doctor office:                       57.9lbs.  

Wow looking at that all layed out in front of me, makes me want to just scream and cry out in frustration.  I am the best Mom for Noah and I'm doing everything I know possible for him. I just hope I can get my point across to them that they will undrstand.  I'm just so sick to my stomach right now. In fact I look back on the last 5 weeks and wonder if this is the reason I've not felt 100%? What did they really mean by the statement? "You have 6 weeks."  Because I surely didn't get done what I was suppost to accomplish.  Please keep Noah and I in your thoughts and prays.  I can do this!!!!


Thursday, March 8, 2012

March is Trisomy Awareness Month

March is Trisomy Awareness Month. On this day March 8th 2012, I would like to introduce our son with Trisomy 8. He is a complete joy and blessing to our family and community. We were told he would be a complete vegetable and we should just put him in a home and forget about him. Yes, he can't walk and talk yet but, he is far from a vegetable. He is true inspiration to all who have the privilege to meet him. He is a true child of God. We honored and proud to be able to say he is our son and brother. We are so glad God chose us to be his family.

   The way I see it, is that the one extra chromosome that Noah has..... Yeah that's the one that makes him Awesome.

Wednesday, March 7, 2012

Spread the Word Update

 When we took Noah to school this morning there were a lot of people waiting for us. They were there to support Noah in his campaign to Spread the Word to End the Word. This poster is signed by many people in Shelby, such as the Mayor, city workers, store owners, police officers and MTD employees. ( Where Scott works)

Noah was presented this Proclimation from the Mayor as well.

The only thing missing this morning was sharing this with Morgan. 

Thanks to the city of Shelby for helping us Spread the Word to End the Word.
I'm thankful and proud I live in the small town of Shelby, Ohio.