Our Journey With One of God's Miracles

Grab it....

2012-02-13T15:12:00.000-08:00

Do you see that little Batman in Noah's hand?
Watch what happens when we raised his hand.......

He closed his hand and didn't drop it.

Sometimes the little things seem so big.

A Day at the Cleveland Clinic

2012-02-09T11:30:00.000-08:00

On Tuesday Noah had 3appts at the Cleveland Clinic. Noah is 4ft 4in. and weighs 57.8lbs. After his doctors looked at his stats. she said you've got 6 weeks. I'm thinking, then what? I don't care what they say...We are NOT giving Noah formula only!! Like that will help anyway. Geesh!!! After looking at Noah without his shirt, her reply was "Are we sure they weighed him right?" "Yes, I know they weighed him right because he actually gained 1.8lbs in the last month. Oh. ok....he still needs to gain some more weight. Hhmmm, last time he was too fat. I think these doctors need to realize Noah is always going to be small and forget what the scales and charts say a boy his age should weigh. He is a very healthy 14 year old that is only 4ft 4in and only weighs 57.8lbs. Get over yourselves. Thanks!!!!

Old Photo Friday

2012-02-03T13:15:00.000-08:00

A fun day sledding.

This was Noah's first time sledding about 3 yrs ago.

Look What Noah Can Do

2012-01-30T15:46:00.000-08:00

Just recenley Noah has learned how to get on the floor safely.

Good Job Noah!!!!

Happy Birthday Noah/Old Photo Friday

2012-01-27T08:04:00.000-08:00

Noah was born Jan 28th 1998 5lbs 14oz.

Noah decided to come 2 weeks early we had no idea there was anything wrong with him at this time.

Although we have since found out that Noah's fingers and toes were still blue after 10min. at birth and no oxygen was given to him at that time. We believe because of this he has CP.

1 month old

Noah was such a good baby. He would hardly ever cry. He did have problems with eating. I would feed him for a hour. ( He would eat 2oz.) and we would sleep an hour. We did this for months.

6 months

At 4m old he had hernia surgery and weighed 9lbs. At this time we took him to see a endocrinologist to see if there was a reason he was having trouble gaining weight. They tested him for Parader Willie. They found nothing.

1 year old

At one year old Noah weighed 12 lbs and still could not sit or hold his own head.

18 months

When Noah was 15 months old he was diagnosed with Trisomy 8. That was the hardest day. With this diagnosis we found out that there is whole list of things that should be wrong with Noah. Such as, no knee caps, deep set eyes, full lips and there are many others. Noah has none of these. His main problem is his CP.

3 years

When Noah was 3 years old he had surgery to correct his eyes and he had his second surgery for tubes in his ears.

Noah got his wheelchair when he was 3.

He also started preschool.

5 yrs

Noah had his G-tube put in when he was 5yrs old. Besides tasting things Noah is still fed mostly by his G-Tube using a blenderized diet.

9yrs

When Noah was 8 years we were able to provide HBOT for him.

Right before Noah turned 10 years old we started ABR. By far the best thing we ever did for Noah.

Noah you are a true blessing in our family. None of us would be the same without you.

Happy birthday, Noah!!!!!!

We love you.

I'm Your Biggest Fan

2012-01-21T20:40:00.000-08:00

Noah loves going to the basketball games and getting high fives from the players.

It means a lot to us that the boys take the time to make Noah feel just like

any other kid at the game.

He absolutely loves getting high fives from all the players.

This what the boys see after they give Noah his high five,

I hope they realize how much Noah loves it.

He may sit quietly in the corner of the gym during the game but, he still is your #1 Fan.

Thanks boys for putting a smile on Noah's face and making him feel just like all the other kids on the court.

Peach's Neet Feet

2012-01-13T13:36:00.000-08:00

On Monday Noah recieved his new shoes from Peach's Neet Feet
Noah was so excited and in awe of his new shoes.

They were painted just for him

They included some of his favorite things.

This morning I was asking Noah if he wanted to wear his new shoes.

He got very excited and said yes. ( eye blink)

Noah loves his new shoes. Thank you Madison of Peach's Neet Feet.

The young lady that paints the shoes is from New Mexico.

Go check out her website: www.peachesneetfeet.blogspot.com

She finds people to sponsor a child and than paints the shoes

with the childs favorite things.

Christmas 2011

2012-01-01T08:46:00.000-08:00

Morgan, Emily and Noah on Christmas Eve.

Noah emjoyed getting his Batman gear. Thank you Aunt Beth.

Morgan and Emily enjoy helping Noah with his gifts. He is such a lucky little brother
to have two big sisters that take such good care of him.

One of the presents Noah recieved is the Big Piano.

He loved rolling all over it to make the music.

Happy 20th Birthday, Morgan

2011-12-30T13:19:00.000-08:00

On December 30th 1991 at 1:48pm Morgan was born weighing 6lbs 110z. and was 20in long.
We thank God everyday for giving us such an awesome daughter.

Morgan, you have always been a true blessing.

You are the Best big sister ever.

You are the Best daughter your Dad and I could ever ask for.

We are so proud of the young lady you have turned out to be
and can't wait for what lies ahead.

Happy birthday, Morgan!!! We love you so much.

Getting Ready for Christmas

2011-12-23T18:04:00.000-08:00

Noah made sure all the lights worked.

Morgan, Brad , Emily and Dalton attempted to build a Gingerbread house.

I love how there heads are tilted in the same direction.
Like Father , like son.

We had fun at the Make A Wish Christmas Party.

Beam me up, Scotty.

December has been a fun but, busy month. Can't wait to see what is in store for us in 2012.

Old Photo Friday

2011-12-16T16:00:00.000-08:00

A Christmas picture of Morgan, Emily and Noah when they were almost 8,6 and 2.

The Hardest and Best Decision We Ever Made

2011-12-09T14:11:00.001-08:00

Scott recently got me a new desk to do my scrapbooking on. I came across these pictures while organizing everything. What a wave emotion that followed that I didn't expect. These pictures were taken when Noah had his feeding tube place almost 9 yrs ago. I remember how I felt making the decision to have it placed. I felt I must be the worst Mom ever, I couldn't even feed my son enough to keep him from losing weight. I hated giving him a bath because he looked so horrible. You could see every bone in his little body. I would feed him for hours and still wouldn't get enough in him. He was 5 1/2yrs old and only weighed 24lbs. I thought I had failed as a Mom some how. He was was loosing the battle. I look back on it now and I'm sure he was knocking on death's door. It was that bad.... I finally went to Scott and told him something needed to be done. That was the hardest decision we have ever made. But, it was also the best decision we have made for Noah.

After it was in I wondered why we had waited so long. I no longer had to worry about Noah getting enough to eat or drink. Over the years I've changed how and what I feed him. Noah used to be fed all night long through a feeding pump and would only get Pediasure. Noah now eats Breakfast, Lunch, Dinner and a Snack before bed. I blend what we are having for meals in a Vitamix and put it through his tube and just because he has a feeding tube doesn't mean he can't eat things by mouth. He still enjoys eating applesauce, yogurt and loves cotton candy.

This is Noah just 30 days after his surgery. ( and Ben Chapman, the Creature from the Black Lagoon) He maybe had gained only about 2lbs but, he looked healthy, wasn't dehydrated and had the twinkle in his eye again.

Thanks for going down memory lane with me.

Susan

The time has come....

2011-12-01T19:29:00.000-08:00

I started out this year choosing a word, ( I was listening to KLOVE) the word I chose was Trust. I had know idea how much I would rely on that one word to get me through the year. Scott has been without a full time job for 2 years. He has been home since the first part of Sept. without a job at all but, we haven't struggled at all. The bills are being paid and there is food on the table. We have grown closer as a couple and I can say I love him more each day. He goes back to work on Monday. I'm going to miss him. There is word out there that a full time job is supposed to open up where he has been working a temporary job. I need to trust that this is true. He deserves it, he is such a good worker.

Noah and the girls are doing really well. Morgan is getting ready for finals next week. Emily has been busy with school and helping with the local play. Noah has really set into our new ABR routine really well.

I pray and Trust that good things are on the horizon.

Changes and Progress

2011-11-15T13:59:00.001-08:00

We just got home from our ABR training in Montreal. The trainers saw lots of changes in Noah's structure. They were very pleased with Noah's progress, as were we.

We were given these pictures of Noah 6 months ago and now. If you click on them they will get bigger and you can see the detail.

We were given 8 new applications. We are doing intense ball rolling and egg rolling.

We can't wait for the changes that will occur in the next 6 months.

Now to get busy rolling.....

Happy Halloween

2011-10-30T18:18:00.001-07:00

Scott and I had a great time making Noah Captain Kirk and making his wheelchair the Starship Enterprise.

When I was getting Noah out of the van at our church for the Halloween party, Emily asked me why we spent so much time and energy just for a costume that he was going to use for 2 hrs. I explained to her it was more than just a costume. It is one of the things we can do to enjoy and have fun with our son. Enjoy we did.

"Beam me up Scotty"

Our Day at the Cleveland Clinic

2011-09-23T17:34:00.000-07:00

We started out our day leaving at 6:30am. Our first appt was at 9am. Noah had a swallow study done. Thanks to ABR Noah was able to get all the way to thin liquids. Now we need to work on a more organized swallow. That will come with lots of practice.

Our next appt was with his dietitian. Noah is 64lbs 6oz. and he is 4ft.2.5in. tall. She felt he looked very healthy.

His next appt. was with his gastrologist. Dr. K was very pleased with him. She did order some blood work to check his nutrition and white blood count levels. Noah only had to be poked once and he did so without any fussing. What a champ!!

The last appt was at 4pm with his new pulminologist Dr. R. He was very easy to understand and he took time to know Noah. Noah seemed at ease with him. The only thing that bothered me was he when lifted Noah's shirt to listen to his lungs, he made the comment that someone needs to lay off a few tube feeds. I was shocked because Noah is no where near fat. I really should have pointed out to him that he was a pulminologist and not a dietitian. I decided not to bother.

In between all his appts, Noah watched Despicable Me and different You-tube videos on his Ipad. What a great investment his Ipad has been. It sure helped him not to be stressed out while waiting. I told Noah if he was good boy I would take him to the mall afterwards and we would get a Browns outfit for his animal.

That is exactly what we did. Good job Noah, I'm so proud of you!!!!

You are a true blessing from God.

We also found the perfect shoes for Noah. The strap in the back is Velcro so, you can make them snug. They stayed on all the way home from Strongsvile and they were on clearance too. What a deal.

Until next time.............

Our Blue Rose

2011-09-16T17:40:00.000-07:00

I found this on another blog I read.

A Blue Rose

Having four visiting family members, my wife was very busy, so I offered to go to the store for her to get some needed items, which included light bulbs, paper towels, trash bags, detergent and Clorox. So off I went.

I scurried around the store, gathered up my goodies and headed for the checkout counter, only to be blocked in the narrow aisle by a young man who appeared to be about sixteen-years-old. I wasn't in a hurry, so I patiently waited for the boy to realize that I was there. This was when he waved his hands excitedly in the air and declared in a loud voice, "Mommy, I'm over here."

It was obvious now, he was mentally challenged and also startled as he turned and saw me standing so close to him, waiting to squeeze by. His eyes widened and surprise exploded on his face as I said, "Hey Buddy, what's your name?"

"My name is Denny and I'm shopping with my mother," he responded proudly.

"Wow," I said, "that's a cool name; I wish my name was Denny, but my name is Steve."

"Steve, like Stevarino?" he asked. "Yes," I answered. "How old are you Denny?"

"How old am I now, Mommy?" he asked his mother as she slowly came over from the next aisle.

"You're fifteen-years-old Denny; now be a good boy and let the man pass by."

I acknowledged her and continued to talk to Denny for several more minutes about summer, bicycles and school. I watched his brown eyes dance with excitement, because he was the center of someone's attention. He then abruptly turned and headed toward the toy section.

Denny's mom had a puzzled look on her face and thanked me for taking the time to talk with her son. She told me that most people wouldn't even look at him, much less talk to him.

I told her that it was my pleasure and then I said something I have no idea where it came from, other than by the prompting of the Holy Spirit. I told her that there are plenty of red, yellow, and pink roses in God's Garden; however, "Blue Roses" are very rare and should be appreciated for their beauty and distinctiveness. You see, Denny is a Blue Rose and if someone doesn't stop and smell that rose with their heart and touch that rose with their kindness, then they've missed a blessing from God.

She was silent for a second, then with a tear in her eye she asked, "Who are you?"

Without thinking I said, "Oh, I'm probably just a dandelion, but I sure love living in God's garden."

She reached out, squeezed my hand and said, "God bless you!" and then I had tears in my eyes.

May I suggest, the next time you see a BLUE ROSE, don't turn your head and walk off. Take the time to smile and say Hello. Why? Because, by the grace of GOD, this mother or father could be you. This could be your child, grandchild, niece or nephew. What a difference a moment can mean to that person or their family.

From an old dandelion! Live simply. Love generously. Care deeply. Speak kindly. Leave the rest to God.

Our very own Blue Rose.

"People will forget what you said, People will forget what you did, but people will never forget how you made them feel!".

Old Photo Friday

2011-09-02T09:13:00.000-07:00

Morgan, Emily and Noah their first day of Pre-school.

A Love Hate Relationship

2011-08-30T09:02:00.000-07:00

I have a love/hate relationship with this not so attractive machine.

Probably for the last 10 years, every time Noah would get sick or just have a check up, a nurse or doctor would ask if we have a suction machine for Noah. We would always say "no" and that would be the end of the conversation. In the back of my mind I would always think, Noah isn't that sick. We don't need on of those machines. I hated the idea of using a machine that I would use to suck all the gunk out of Noah. How disgusting that even sounded.

Well, about January of this year the question came up again, "Do you have a suction machine for Noah?" "No" Instead of the conversation stopping there again, Noah's pulminologist decided that he would benefit from one. How devastated I felt. The machine was ordered and it was dropped by on our doorstep. I thought to myself now what do I do with this thing. It had no instructions, I was I supposed to know how to hook it up let alone know how to use this stupid thing. I wanted to throw it to the curb and never see it again!!! I took a deep breath and decided to look on the Internet to figure out how to hook it up and use it. Within an hour I had it hooked up and running. Now to actually use it......

A few weeks later Noah ended up with a cold. Well, here goes nothing. A prayer was said and I turned on that stupid machine and proceeded to suction out Noah's nose and throat. Hey, that wasn't so bad. I can do this!!!! I've since fallen in love with that stupid machine. Since I've used it on Noah he has yet had to be on a antibiotic when he gets a cold.

This last weekend Noah made himself sick by stressing out about a flat tire. (Yeah, I know what a silly thing to get stressed out about.) He ran a 104 fever and was very gunky. That stupid machine was used several times and along with his Vest and inhalers, he is now fever free.

Thanks to that stupid machine, there were no visits to the doctor or antibiotics. Noah has a reason to be his goofy self again and I've fallen in love with that stupid machine again.

I Am the Disabled Child

2011-08-26T07:39:00.000-07:00

I am the Disabled Child

I am the child who cannot talk.You often pity me. I see it in your eyes.You wonder how much I am aware of...I see that as well.I am aware of much...whether you are happy or sad or fearful,patient or impatient, full of love and desire, or if you are just doing your duty to me.I marvel at your frustration, knowing mine to be far greater, for I cannot express myself nor my needs as you do.You cannot conceive my isolation, so complete it is at times.I do not gift you with clever conversation, cute remarks to be laughed over and repeated.I do not give you answers to your everyday questions,responses over my well-being, sharing my needs,or comments about the world around me.I do not give you rewards as defined by the world's standards...great strides in development that you can credit yourself.I do not give you understanding as you know it.What I give you is so much more valuable...I give you instead opportunities.Opportunities to discover the depth of your character, not mine;the depth of your love, your commitment, your patience,your abilities; the opportunity to explore your spirit more deeply than you imagined possible.I drive you further than you ever go on your own,working harder, seeking answers to your many questions,creating questions with no answers.I am the child who cannot talk.

I am the child who cannot walk.The world sometimes seems to pass me by.You see the longing in my eyes to get out of this chair,to run and play like other children.There is much you take for granted.I want the toys on the top shelf.I need to go to the bathroom...oh...I've dropped my spoon again!I am dependent on you in these ways.My gift to you is to make you aware of your great fortune,your healthy back and legs, your ability to do for yourself.Sometimes people appear not to notice me; I always notice them.I feel not so much envy as desire, desire to stand upright, to put one foot in front of the other, to be independent.I give you awareness.I am the child who cannot walk.

I am the child who is mentally impaired.I don't learn easily, if you judge me by the world's measuring stick.What I do know is infinite joy in the simple things.I am not burdened as you are with the strifes and conflicts or a more complicated life.My gift to you is to grant you the freedom to enjoy things as a child,to teach you how much your arms around me mean, to give you love.I give you the gift of simplicity.I am the child who is mentally impaired.

I am the disabled child.

I am your teacher.If you allow me, I will teach you what is really important in life.I will give you and teach you unconditional love.I give you my innocent trust, my dependency upon you.I teach you respect for others and their uniqueness.I teach you about the sanctity of life.I teach you about how very precious life is and about not taking things for granted.I teach you about forgetting your own needs and desires and dreams.I teach you giving.Most of all, I teach you Hope and Faith.

I am the Disabled Child

~Author Unknown~

Happy Birthday Scott/ Old Photo Friday

2011-08-19T11:17:00.000-07:00

Today is Scott's 47th birthday. We have known each other for 31 of those years and have been married for 22 1/2. What an awesome husband and Dad he has turned out to be. The last 6 months I've prayed every morning to have a better attitude and asked God to help me see what a awesome person he is. I can honestly say I feel much better about our relationship today than I did 6 months ago.

Happy Birthday sweetie, I love you.

Shopping

2011-08-08T15:01:00.001-07:00

Emily, Noah and I went to Walmart. I thought I would try and put Noah in the back of the cart. I feel it worked really well. Before ABR this could have never happened. His trunk wasn't strong enough to support himself. But look at him now.....

Actually we had the check out lady ask us if he really liked being in there. With this goofy smile what do you think?

Some people just don't get it. When Emily was getting ready to check out her purse was caught on his foot. She pulled and told him, "Give that to me" ( He had a big grin on his face and was laughing.) The check out lady came over and asked if Noah was Emily's brother. I said " Yes" and she said " I thought so when she got nasty with him" Geez lady you have no idea what your talking about. Some people!!!

Angels on his shoulders.....

2011-08-03T13:56:00.000-07:00

Scott and I helped out at the Tim Hess Memorial Scramble grilling hotdogs for the golfers. It was a lot of fun helping out.

Team Clough ready to celebrate their birdie putt.

After we were finished grilling hot dogs we went out to see the bench on the 18th tee. It was made and dedicated to Keith Bloom (Scott's Uncle) and William Sheaffer ( Scott's Dad)

It's like seeing Scott's guardian angels on his shoulders.

Noah has been busy....

2011-07-30T11:02:00.000-07:00

We have been really busy this summer. Here are a few pictures of our summer. I tried to upload a few more pictures but blogger wouldn't let me. DRAT!!!

We helped Ethan celebrate his 1st. birthday.

We went to Kings Island. It sure was hot that day but we enjoyed spending time with Grandma Sheaffer.

Noah got chased by a T-Rex while walking through the dinosaur park at Kings Island.

We went to Monster Bash in Butler PA.

We helped Brad celebrate his 20th birthday.

We watched fireworks at Charles Mill.

We went camping with family.

Noah and I went for bike rides in his bike trailer someone was kind enough to give us.

Noah has had quite the busy summer. I can't believe its almost time for school to start and we still have more swimming to do.

Easter 2011

2011-05-19T06:18:00.000-07:00

Wow, its been along time since I've posted anything. Its time to get in the swing of doing it every week again. Here are some pictures of our Easter this year.

Emily had some Easter crafts for everyone who wanted to try them.

It was a raining day outside so Ethan and Noah hung out by the sliding door and watched everyone else during the egg hunt.

Until next time.....

Old Photo Friday

2011-04-15T19:32:00.001-07:00

Last weekend Morgan and Emily were each in dance recitals.

Watching them got me thinking about how they have always loved dancing.

It has given them the confidence to do anything they set their minds to.

Morgan 6yrs. and Emily 4yrs.

Old Photo Friday

2011-04-08T07:11:00.000-07:00

Twenty Two years ago today I married my best friend. Over the years we had our ups and downs but, I can still say I love Scott very much. This last week when I had to travel to Montreal without him, I realized how much I appreciate all the things he does to help out with Noah. He has always supported me in all the different things I have found to help Noah. When I first found ABR about 3 1/2 years ago he supported me even though at times he thought it seemed a little different and strange. We now have come to realize that its the best thing we have ever done for Noah.

I missed Scott so much last week while we were in Montreal. I realized how much I love him and lean on him for support when things get tough. He is the best Dad to our 3 wonderful children. Even though he didn't get to go with Noah and I, he really enjoyed spending time with Morgan and Emily by himself. Happy Anniversary Scott, I love you so much.

Our trip to Montreal

2011-04-06T18:49:00.000-07:00

After a long trip in the car we arrived at the new Ronald McDonald House. Its a lot nicer than the old one but you still had to park in the old parking lot. I'm sure glad my Mom and Dad were able to go with me and help me and stay with Noah when I needed to go get the van or take it back to the parking lot.

This is I guess you could call the lobby or entry way. This where they had computers set up for us to use.

This the one end of our room.

More views of our room.

Our bathroom.

The kitchen, this was only one half of the kitchen.

The dining room

The hall to the elevator.

These 2 pictures are of the teen room. They had several places to watch TV.

This is on the couch in the entry way.

This Leonid Blum the creator of ABR.

This Noah with two of the other families.

It was a very busy 2 days of training. It was supposed to be 4hrs of training for 2 days. It ended up being 2 days of 8 and 10 hour days. I came away from the training with mental overload and Noah came away with I believe sensory overload. He woke up at 1am the first night and Saturday he didn't sleep at all. His poor little body couldn't settle down enough to fall asleep or even rest. When Noah doesn't sleep then I don't sleep. It made for a very hard time trying to drive home on Sunday. Thank goodness he slept really well Sunday night in Niagara and we made it home safely.

The ABR team was very pleased with Noah's progress. Some of them haven't seen Noah in 2 years. It was great listening to Leonid during Noah's evaluation. He was very pleased with Noah and his progress. I really needed the confirmation that what we are doing for Noah is helping him. It gives us the drivewe needed to keep going on this journey.

52 Years of Marriage

2011-04-04T18:43:00.000-07:00

52 years ago today my Mom and Dad got married. On the way home from Montreal I stopped at Niagara Falls. The place where they went on their honeymoon. I took this picture this morning. ( not sure why the camera stamped it 4/3) It was about 53 and a bit windy. Mom remembers it being about the same 52 years ago but, she said the falls were a bit more frozen then. This the American side.

This is the Canadian side.

We got to Niagara on Sunday and walked down to the falls hoping to see them all lit up. They weren't :( On our walk back it started snowing huge snowflakes. We were all covered by the time we got back to our hotel.

Happy Anniversary Mom and Dad.

We Made it to Montreal

2011-03-31T16:40:00.000-07:00

Noah, my Mom ,Dad and I made it to Montreal about 3pm this afternoon. We are all checked in at the Ronald McDonald house. They haved moved into a new buliding. It is so big and nice here. I will post pictures soon. We have our first training at the ABR center tomorrow from 9am to 1pm. I will post tomorrow again with a update.

Old Photo Friday

2011-03-25T19:08:00.000-07:00

Our silly girls.

A Change of Plans

2011-03-24T05:51:00.000-07:00

Last week while sitting in a Cleveland Clinic waiting room, I received this email:
Good morning, Susan
After a final meeting with Annie regarding the position as ABR Technician, we regret to inform you that we are no longer pursuing this route. The main factor in changing this decision is due to the numerous complaints that we are receiving from parents. For many of them, it is difficult for many of them to accept being trained by parents rather than the professionals that we have hired int he past. We were hoping they would see the benefits as we did; already have been where they are, personal experience, knowledge of ABR technique due to daily practice on your own child, etc.
We know that this will change the fact that there will no longer be any free ABR for you and Noah. However to compensate for this change we would like to invite you to your next session with Leonid free of charge. Naturally you will need to pay for you trip and expenses, but at least training would not cost anything an you will save on the usual trainers fee from a US based satellite. We need the confirmation of your attendance to the sessions as well as your choice of evaluation/assessment within the dates and times by Thursday March 17th.

Needless to say I was a bit disappointed and upset but, it is what it is and we needed to make a decision on what we were going to do. Scott and I talked and we decided the best thing to do would go ahead and take them up on their offer. The idea if Noah being evaluated by the creator of ABR Leonid just seemed the thing we really needed at this point in this journey. Leonid hasn't seen Noah in almost 2 years. The wealth of knowledge you get from sitting and watching a evaluation with him is beyond anything I have ever experienced before. He sees the results of all the hard work we have put in and gives you the inspiration an the drive to continue on this journey of ours.
When looking at our calender for the next couple of weeks, the only time we could go is next Wednesday March 30th. and we will be back on Tuesday April 5th. At least this way Noah and I will be able to spend Easter with our family. The one thing I'm praying for is that my Mom and Dad's passports get here before we leave so they can go with us.

Until next time,
Susan

A Check Up at the Cleveland Clinic

2011-03-17T10:16:00.000-07:00

Noah had 3 appts. at the Cleveland Clinic on Tuesday. They all went really well. He saw his nutritionist, he weighs 64 lbs 13ozs. and is 4ft. 3in tall. He lost a little bit since last time but, if you remember they said he was "fat" (that still makes me laugh) so, it was good that he lost a little. He lost his love handles. We have to go back in 3 months to make sure he isn't losing anymore weight.
Next up was the pulmonogist his doctor was very pleased by the way he sounded and wants us to schedule a CT scan of lungs to make sure his lungs aren't any worse before his next appt. in three months. I really don't think his lungs will be any worse because he hasn't been sick in over a year. Oh well...we'll see.
The last appointment was with his gastrologist and she said Noah looked much better this time. He wasn't a chunky monkey this time. She wants to see him again in 6 months.
The one thing I never realized about the Cleveland Clinic is how the bathrooms are not very handicap accessiable. Scott is usually able to go with us and is able to sit with Noah when I need to use the restroom. We went by ourselves this time and I had to take him with me. It was impossiable. How sad is that? I need to find a phone number and call someone and tell them how I feel but, would it make a difference? Probally not.

Old Photo Friday

2011-03-11T08:15:00.001-08:00

This my all time favorite picture of Noah and his Daddy.

In fact it hangs on the wall of our living room.

The minute Noah was born, I remember Scott saying over and over again, " It's a Boy, It's a Boy"

Scott was so excited to finally having a little boy he could pal around with.

We soon learned that things weren't going to be the way we imagined.

I felt so bad ..... I thought I had failed Scott by not giving him a son that he could go out in the back yard and toss a ball with and all the other things a Dad can do with their son.

At first Scott was very angry with God. He asked him,"How could do this to me?" He even wondered what he had done wrong to deserve this. With a lot of soul searching and prayer he soon realized that God wasn't punishing him. He gave Noah to him because he knew that he was the best Daddy out there for him. Scott realized that yes, he couldn't run and play with Noah but, he could still have fun with his son. They have the best of times together. They enjoy watching the Cleveland Indians together. One of Scott's dreams is to be able to take Noah to a game and run the bases with him. It brings tears to my eyes just thinking about it. Maybe one day, I will be able to watch them fulfill his dream.

They also enjoy watching the old black and white movies together. Like, Frankenstein, Dracula and The Creature from the Black Lagoon.

Just thinking about my 2 guys spending time together makes me smile and I have fallen in love with Scott a little bit more.

To the best Daddy ever, I love you and thank you for our 3 beautiful children,

Susan

March is Trisomy Awareness Month

2011-03-08T07:06:00.000-08:00

On this day March 8th during Trisomy Awareness Month I would like to introduce to you our son Noah with Trisomy 8.

Noah is a true blessing. I'm glad God chose me to be his Mom. He has taught me so much. Most days this is the way I feel. But, there are days that I ask why? I think how much our lives changed after Noah. I think about my girls missing out on so much growing up. They had to grow up so fast. I also think that they have grown up to be the most loving and compassionate people I know. I'm so proud of the mature ladies they have grown up to be.

There is a statistic saying that a married couple dealing with a special needs child is more likely to fail. I'm so glad that Scott and I are still together after almost 22yrs. Unfortunately, I'm not saying that we are always happy together. I wish that our relationship was stronger than it is. Sometimes I wish that we were half as happy as people percieve us to be. One thing I can say is, I love my husband very much and I'm happy we are still together and pray that somehow we can reconnect even more than we are.

Old Photo Friday

2011-03-04T13:02:00.001-08:00

Morgan (age8) Emily(age 6) and Noah ( age2) enjoying a book on the laps of Grandma and Grandpa Sheaffer.

Morgan (age 7) Emily (age 5) Noah (age 18m) at Myrtle Beach with Grandma Bebow.
Morgan (age 6) Emily (age4) Noah (4m) camping with Grandpa Bebow.

Flood of 2011

2011-02-28T16:28:00.000-08:00

You know you live in Ohio when on Friday the kids had no school because of a snow storm. Then on Monday they have no school because of a flood.

Sadly I can say I have lived through 3 floods. My children have already live through 2. I hope Shelby can find a way that this doesn't happen again.

Under all this water is a football field.

This is the auditorium in the middle school where Noah goes to school.
The last 2 floods before this one they had to replace everything.(Stage floor, carpet and seats)

This is the door I use to take Noah into school. After the last flood 4yrs ago the Shelby school system purchased flood gates for all the doors. It looks like it worked. They are only planning a 2hr delay tomorrow. Wow, what a lot of hard work. Thanks to everyone who chipped into help.

The only thing I worry about is how good is the air quality in the schools? I don't think Noah could handle much mold.....

Thank goodness for a new high school in the very near future.

Old Photo Friday

2011-02-25T13:31:00.000-08:00

Since it was Emily's birthday this week, I decided to put some pictures up when she was a baby.

Happy 17th Birthday Emily

2011-02-22T10:58:00.000-08:00

Today Emily turned 17.

Long gone are the days of lacy dresses and pig tails.

But, what a awesome person you have turned out to be.

I'm so glad God chose us to be your parents. You are true gift from God.

I can't wait to see what God has in store for you.

I love you so much Emily.

Love, Mom

Old Photo Friday "Friends"

2011-02-18T06:53:00.001-08:00

Life wouldn't be the same without friends.

Noah, Auston and Dalton
Linda, Amber, Morgan, A.J. and Emily

Emily, Allie, Alyssa and Amber

Morgan, Ashlee, Abby and Emily

Gillian, Emily, Morgan, Janelle and Alex

Physical 2011

2011-02-15T17:11:00.000-08:00

Today Noah had his physical. His doctor was very pleased. He said Noah has never looked better. He has had a wonderful winter. He hasn't been sick at all. Boy, I sure hope we haven't jinxed ourselves. Last year Noah weighed 45lbs. and was 50 1/2in. This year he weighed 64lbs. and is 52in. He commented on how relaxed his body seemed. He then asked me if we do any physical therapy. I said no just the ABR therapy we do at home. He then told me to keep up the good work and continue what I was doing because its definitely was working. Awesome, Go Team Noah!! I have never felt so good leaving a doctor appointment before.

On Monday I took Morgan back to school and ate lunch with her. What a great morning spent with her. Since I ate lunch with Morgan, Noah needed to stay at school an extra hour. In previous years he would have made himself sick. Monday he was just fine and even seemed very happy when I picked him up. I'm so glad he enjoys going to school now. When Noah is happy this mamma bear is happy.

Old Photo Friday

2011-02-11T12:39:00.000-08:00

Starting today I'm going to try something new. Fridays will be Old Photo Friday.
These photos are when Noah and I were in Cincinnati doing hyperbaric oxygen therapy at the Cole Center of Healing.

Morgan was 14.

Emily was 12

Noah was 8.

We were having fun with The Thing feet one of the weekends Scott and the girls came to visit us.

I almost forgot......

2011-02-10T10:08:00.000-08:00

Last fall I decided it would be best for Noah that he wouldn't attend school. At the time it was the best decision for him. Towards the end of November I noticed that he was starting to be very distant and unhappy. I also was feeling very trapped and depressed.

I soon realized that Noah needed to get out of the house and be around other people. I love Noah dearly but, I too was needed a break from him. I made some phone calls to find out what our options were. Scott and I went and visited a classroom at our local middle school. (Noah's age group)
It was a mainstream multi-handicap classroom. We instantly fell in love. What a awesome stress free environment. You could feel the difference as soon as you walked in the door. By the first full week in December Noah was attending school M-F form 8:30-12:30.

Noah loves it!!!!! I even see a difference in him at home. So much happier and healthier. I know I can't change the past.... but, looking back on the last 7 years I wish I had done something sooner.
Seeing the difference in him at school and home makes me upset with myself. Why didn't I protect my baby when I should have? I guess at the time I was doing what I thought was best for my child. Never realizing at the time what it was really doing to him. At the time I thought it could be all the germs in the classroom that was making him sick. Now I know it was him being very stressed out and making himself sick.

I was visting one of my blogs that I read and the post I was reading was exactly the way I connect with Noah.
What she says is so true. I changed it a bit:Having a nonverbal child can be challenging. Noah is not good at telling me what is making him stressed out or sad. Often when Noah needs something or is upset about something. I can quiet my mind and focus in on what is bothering him. I'll get a vision in my mind, a feeling in my heart and words make their way into my head and I begin to understand what it is that is bothering Noah. I just need to learn to listen and believe in my Mommy intuition more often.Noah's teachers are wonderful with him. I can honestly say that Noah has wormed his way into their hearts. I can see that they love him so much. I thank them for taking the time in getting to Noah so quickly. He is so happy going to school and I'm enjoying my time learning what it is to be me.

Our Favorite Hero's Birthday Party

2011-01-31T07:57:00.001-08:00

A few months ago I stumbled upon http://www.icingsmiles.org/Site/Welcome.html.

Their goal is to put smiles on special needs children and their siblings faces.

Our baker was Carrie Guenther from Carries Cakes of Woosterhttp://www.carriescakes-wooster.com/default.html

We gave Noah 4 choices: 66 Batman, Phineas and Ferb, Cleveland Indians and Universal Monsters. He chose 66n Batman.

Noah's 13th birthday has meant so much to us. Years ago after his diagnosis we weren't sure we would be able to have Noah long enough to celebrate his 13th birthday. So, we decided to do it up right.

We wanted to celebrate with the people that have always been there for us through it all. Our church family. Thanks to everyone that was able to celebrate with us.

Noah loved opening all the cards he recieved. This one from Linda Bloomfield made him belly laugh.

It was great having family and friends helping us celebrate our favorite hero's birthday.

A lot of party goers also got into the fun and decorated themselves for the occasion.

Our favorite hero and his big sister Emily.

Our little hero and his best buddy Issiah.

Thanks again for helping us celebrate this milesone with our teenage miracle.

Happy 13th Birthday Noah

2011-01-27T13:05:00.000-08:00

Wow.... has it really been 13 years? He is a true gift from God. He has blessed our family more than I could ever imagine. We were told he would be a vegetable for the rest of his life. He is far from a vegetable. One day I would love for Noah to go into that doctors office and show her how wrong she was. She didn't give us much hope that day we were told his diagnosis. But, with the help of God, our family and church family we can now say we have a lot of hope. With God all things are possible.

For Noah's birthday I want him to know that he is loved unconditionally not only by his family, but by God,the one who knit him together in my womb, the one who makes no mistakes.
(Thank you Renee over at Massagermommy for the words I was looking to express some of my feelings today.)

Happy Birthday Noah

You are well loved.

Noah loves playing the Wii

2011-01-20T06:45:00.000-08:00

Noah just loves playing the Wii. He finally can play a game like all the kids his age. Yes, he needs hand over hand help.... but he still loves to play. Last night Emily and Noah played baseball, golf and tennis. Each time they switched sports, Emily would ask Noah what he wanted to play. She would go through the list and at one point she mentioned to Noah that that there was a boxing game but, they probally wouldn't be able to do it.Wouldn't you know it at the next time she asked him what game he wanted to play, he said no to everything until she finally said boxing again. They did end up boxing and they got the high score. He was so happy. I love the way he thinks.... noone will ever tell him he can't do something without him trying his hardest to prove them wrong.

Happy Birthday Leonid

2011-01-13T15:14:00.000-08:00

Today is Leonid Blyum's birthday. He is the creator of ABR ( the therapy we have been doing on Noah for over 2yrs.) I can't thank this man enough. Noah has progressed more in the last 2yrs than he ever had in the first almost 11yrs. of his life. Noah has gained 20lbs., he is very rarely sick ( When he does get sick he can fight it off easier.) , his head control is 50% better and he is starting to use his arms more to brace himself in the sitting postion.

I just made the decision to attend a training session in Montreal, Canada to become an ABR technician. In doing this we'll be able to continue to provide Noah ABR therapy for free. I can't wait to see what Noah will be like in the future. Thank You Leonid for giving us hope for Noah's future.

TRUST

2011-01-06T12:20:00.000-08:00

I was heading to Crestline yesterday morning for a meeting. I was listening to 98.7 our local K-Love station. They were talking about picking one word to pray over for the year. I no sooner was thinking how can someone pick just 1 word to pray about when, TRUST popped into my head. Wow how appropriate this one word is, TRUST. I realized I need to learn to TRUST God in everything I say and do. I need to TRUST that he does have a plan for me and my family. I need to TRUST God that things will get better for us. I Need to TRUST God that he will provide. I need to learn to just TRUST. What is your one word?

Exceptional Family Christmas Video

2010-12-29T16:00:00.000-08:00

Noah is in this video 3 minutes and 57 seconds in.

A Great Christmas with Family

2010-12-28T13:04:00.000-08:00

We had a great Christmas with family this year.The kids got the movie Despicable Me. It came with goggles. We had fun trying them on. I was uploading pictures of us with them on and realized there is no picture of me. Oh Darn!

Noah with our favorite Santa Bob.

A couple of weeks ago Noah was in the Sunday School program at church.
He even had a speaking part by using his button.

Morgan on Christmas Eve holding Lady.

Hope everyone had a wonderful Christmas and a Happy New Year.

Soul Searching and Praying

2010-12-22T05:46:00.000-08:00

The last 2-3 months I've been doing a lot of soul searching and praying. I've been trying to figure out if we should continue with ABR or not. We were unable to go to our last training in August or even November because we were unable to pay for it. I asked God over and over......"Is this what we should be doing for Noah? If it is or isn't please give us a sign."

What a blessing it was to go to the mailbox last Monday and find a check for the amount of our ABR training. I excitedly made a call to reserve our spot for the next ABR training in June.

Then..... On Wednseday I got an e-mail from the ABR Center in Montreal Canada. They were asking me if I would be interested in becoming an ABR technician in exchange for free ABR training for Noah. I would have to travel to Montreal the end of February for 2 weeks for training. Then 4x a year go to Chicgao to teach the families their new applications.

Is that answered pray or what?!!!!!!!!!

I'm now praying for Scott to get a good job so we can use the money we got to use as a deposit on the ABR machine and use Noah's SSI money every month as the $300 rental fee.

God is Good All the Time!!!!!!

Until next time........

A Kid Again Christmas Party

2010-12-15T17:42:00.000-08:00

A few weekends ago we went to A Kid Again Christmas party. Its a party for all the Make A Wish kids and their families. Noah always gets the biggest kick out of talking to Santa.
Morgan, Emily and Noah helped each other to make a picture frame. Noah was the official
placer of the stickers.

The Columbus Zoo was there with some animals. Noah loved petting them.

It was a great day spent with family. It was actually our first time in 5 years that all 5 of us were able to go together.

There may be new and exciting (and a bit scary) things on our horizon. I will let you know what it is and how things work out.

Until next time,

Susan

Wow What a Week.....

2010-12-08T18:11:00.000-08:00

Last week Noah and Emily were in the play Willie Wonka and the Chocolate Factory.

The kids did a great job. We didn't get home until 10:30 or so each night during tech week. The show ran Thursday, Friday and 2 shows on Saturday.

Noah was an Oompa Loompa. He had so much fun. But, it really wore him out.

Emily played Mrs. Beauregarde. She did a wonderful job.

Allison and Davey took turns helping Noah.
Thank you for offering to help Noah. He really enjoyed being a part of the play.

I have come to realize......

2010-11-27T19:26:00.000-08:00

I'm in desperate need of some ME time. I love Noah dearly. I'm with him 24/7. I need a break. I've been feeling trapped and very alone. Is their really a world outside my window?

I want to feel alive again. I want to know what it is to be Susan. I want to feel over the moon in love with my husband again. I do love you Scott. I'm so sorry that I don't show it much. The last almost 13 years has been so hard for our family. We've had our ups and our downs. Lately I've been wondering why us? What is Noah's purpose? What does God wants me to do from here? One thing I do know is...... Noah is such a blessing. I can't imagine what our lives would be like without him.

All About Emily

2010-11-15T14:11:00.001-08:00

What can I say..... you are the best daughter,sister and friend anyone could ever ask for.
You are kind, considerate, honest, loving and everything in between.

This year you have really come out of your shell and trying new things. You have made flag in band, melloettes, show choir, chamber choir and a part in this years play. I'm so glad you are busy doing things instead of sitting at home being very lonely.

I know sometimes you feel like this,

I may not be gorgeous, beautiful or even have the perfect body. I may not be every one's 1st. choice but, I'm ME and I don't pretend to be anyone else.

That's one of the things I love about you.
(But, I do think you are a very beautiful person.)

You are such a loving nurturing person. You put everyone before yourself.

I love how you take the time to let Noah know how much you love and adore him. Thank you for helping him to be able to do things with his friends. Like the school plays.

You are not afraid to tell anyone that you are a christian. They will know you are a christian by your love. I admire you for that. Never be afraid to keep being yourself.

Lately on facebook I have come across some great sayings.(Thanks Taylor)

That have really touched my heart. They made me think of You:

Sometimes when I say I'm ok, I just want someone to look me in the eyes, hug me tight and say "I know you're not"

I'm the girl that gets hurt for being too nice. I'm the girl who knows what she wants but doesn't know how to get it. I'm the girl who will always be there for you and never judge you.

Nobody really knows how much someone is hurting. You could be standing next to someone who is completely broken and not even know it.

Emily I just want you to know that I love you very much and I think you are beautiful person inside and out.

Love, Mom

Never thought I would ever hear......

2010-11-11T17:34:00.001-08:00

Noah Nov. 2010

Noah Dec. 2009

Wow he's fat. Let me back up about a year ago. Noah had just gotten out of the ICU at the Cleveland Clinic. He weighed 45lbs. Wore a size 8 and could still wear the largest baby diaper. Yes he was very skinny and yes he needed to gain some weight. His doctor started Noah on Bena-calorie and Bena-protein to hopefully help gain a little. By February Noah still hadn't gained anything. For whatever reason, maybe his body started processing things differently, I'm not sure but, in April Noah started gaining weight. Each time Noah went to the doctor through the summer he had gained a little bit more. I kept asking the doctor are you sure he needs to gain some more weight? He kept saying yes.(He was always wanting Noah on the growth chart) I second guessed that and fed him a little less but, he still gained. I started jokingly calling him lead butt. Because most of the weight was around his middle. Last week he had an appointment with his gastro-enterologist. The appointment went pretty well. I explained to her that Noah had gained 21lbs since April and I was wondering if his g-tube was still the right size. She asked what he was eating and commented on how good he looked. She then proceeded to lift his shirt..... she took a few seconds and then said " Wow he's fat!" I was thinking to myself..... someone just called my little boy fat. Are we still talking about the same little boy that looked so sickly a year ago? I then thanked her for understanding and seeing the same thing we have been seeing the last 6months. Noah has gained weight, he is healthier and doesn't need to gain anymore weight. He is actually still 6lbs shy of being on the growth chart. I feel (and his gastro-enterologist feels) that he doesn't need to be on the growth chart.

Happy Halloween and a trip to the Cleveland Clinic

2010-11-04T06:12:00.001-07:00

We went to the Columbus Zoo for Boo at the Zoo. Noah and his Daddy had brunch with Batman and other super heroes. They had a great time.

Noah can't enjoy the candy he would get from Trick or Treating so we go to the zoo instead.

This is the jack o lantern he helped design. He was pretty proud of it.

We colored cooked spaghetti orange and let Noah play in it. You could hear his happy sounds all the way into the living room. He rally loves yucky stuff. Typical boy I guess.

Morgan and Emily was invited to Amber and Linda's Halloween party. I used to watch them years ago. They were Morgan and Emily's first friends. It had been 10 years since they lost saw them. They were so excited to see them again.

Maddie you are such a goober.

Wednesday we went back to the Cleveland Clinic. Noah had a test done to see if his nissan had come loose. We found out yesterday that it is still intact. So, no surgery for Noah in the near future. That was good news but, now we still need to found out why Noah keeps getting sick. Talking about him getting sick...... usually when we go to the Clinic Noah makes himself sick because of the stress. We was so impressed with Noah on Wednesday. He didn't get stressed at all. Keep him your prayers that he stays well.

Our day at the Cleveland Clinic

2010-10-27T09:04:00.000-07:00

Yesterday we spent the day at the Cleveland Clinic. First off Noah was weighed. He now weighs 66lbs. A few months ago I was thinking Noah would never grow. Here we are 6months later and 21lbs. heavier. He has gone from a size 8 to a size 12. If he keeps growing at this rate we'll need to go up a size again. We haven't had to buy clothes Noah for in 5 years. Its so nice not being so stressed when he gets sick. He now has meat on his bones and I'm not too afraid if he would lose some weight .
Speaking of Noah getting sick, brings me to the real reason we went to the Cleveland Clinic. For the last 6 months Noah has been sick a lot. With no real reason why. Yesterday he had a check up with his pulmonologist. With a lot of questions being asked she suggested that Noah's nissan (wrapping of his stomach around his esophagus so he can't reflux and aspirate) may have come loose and causing him to have silent reflux again. Which may be causing him to get sick. Next Wednesday he is going to have a test done to see if the nissan has come loose. I'm not wishing another surgery for Noah but, if we can help him out by not getting sick all the time. I'm all for it. Keep him in your prayers that we can find the reason he has been sick so often lately.

Morgan is home again.....

2010-10-21T12:37:00.000-07:00

When Morgan left for college we had to learn a new normal. Things would never be the same...I was so excited the first weekend she came home. But, I had to learn how to appreciate the time I got to spend with her and not get upset with the time she spent with others. It took alot but I can now enjoy the time I do get with her. She is such a mature young lady with great morals and values. I don't have to worry about her making the right choices. She has met a nice young man that has the same morals and values as well. They are going to do great things together.

He treats her how I want my daughter to be treated. He makes her feel so special and I know when he wakes each morning he thinks of Morgan. His Mom and Dad did a great job raising a fine young man. Morgan is so lucky to have found him.

Enjoying the fall weather.......

2010-10-14T14:10:00.000-07:00

I've been so proud of our Emily lately. She has really come out of her shell and has really blossomed. She made flag corps this year. She recently tried out for the school play, show choir and Melloettes. She has made all three. Good Job Emily!!!!!

Noah loves going to the football games and watching his big sister in the band.

A few weeks ago the Alumni Band members joined the SHS band on the field at halftime.The gentlemen in the red shirt in the middle of the picture was a Shelby High School bamd member from 1968-1971. He is blind and he has marched in the SHS band as well as The OSU marching band. He has never let his lack of sight stop him from doing the things he has wanted to do.

Great job Mom Dahn. You looked awesome.

Brian Crum did a great job! It looked as if you never left the SHS Band.

Diana, thanks for being a teacher that cares about your students.

This game was the last game for Noah. It has gotten too cold for Noah to be outside for too long. I"m so excited he just worked himself through a cold with out antibiotics. Yeah!!!!!! He now weighs 63lbs. That just feels so weird to say....... he has been in the 40's for 4 years. Its great to see him filling out. But, oh my......... he is ssoooo heavy.

Really struggling.......

2010-10-13T15:19:00.000-07:00

Lately I've been really struggling...... I love what ABR has done for Noah. He has come along way in 2 years. He has gained 20lbs., better head control and he is able to fight off a cold without it going into his lungs. I want to continue with ABR but its been hard finding the money to continue going to the training sessions. I've been struggling with the idea of why bother if we can't continue with going to the training sessions every 6 months. Last Friday I brought the therapy table out to the living room..... that way I can do therapy and still be with everyone else. Noah can also see the movie we are watching on the big TV. Before we used a small portable DVD player. Noah had trouble seeing the movie and then would fight against what I was doing because he was tired of laying still with nothing to do. So far its been going a lot better. It has really helped my motivation. I pray that something will open up for us soon and we can attend the next ABR training in February.

Second Coolest Thing On Wheels

2010-10-04T07:05:00.001-07:00

On Saturday our church was having a Fall Festival and Car Show. We donated money for an award to be given to a car owner that Noah had picked. Scott and Noah looked at all the cars. There were lots of cool cars but they decided that this one:
Was the Second Coolest Thing On Wheels....

Cause, Noah is The Coolest Thing On Wheels. Don't you think.....
It is a 1940 Buick 5-passenger four-door Touring Sedan
248 cu. in, 107 hp. Straight Eight Motor
16.5 mpg at 50 mph
70 minimum octane gasoline
Owners: Don and Joann Bishop

Noah was fighting a cold, so he had fallen asleep before it was time to hand out the award.
Here is the very proud owner excepting his award.

Hallow Weekend,Remedy Drive and Casting Crowns

2010-09-22T16:36:00.000-07:00

On Saturday we went to Cedar Point. A lot of fun things were going on there. It was the first weekend for Hallow Weekends and it was the day of Pointfest. Several christian bands were playing. We had a great time. Noah watched several monsters dancing to the Monster Mash and other spooky songs.

One of the bands that played was Remedy Drive.
The girls had a great time seeing them again. ( They played at our church about a year ago)

Brad, Morgan, Noah and Emily enjoying the concert.

Noah and I on the big Ferris wheel. Its been a long time since we've taken Noah to Cedar Point. I found that there was even less for him to do there. He has out grown the little rides and not strong enough for the other rides. Although he didn't ride much he still enjoyed being out and about.

Our view from the big Ferris wheel.

The last concert of the day was Casting Crowns. They were AWESOME!!!!!!

School,sharks and bugs oh my......

2010-09-16T08:01:00.000-07:00

This morning Noah met his new teacher, Mrs. S. They asked Mrs. P. and she felt very overwhelmed with the change at the start of school. She felt she couldn't give the attention that Noah deserved. So.... they hired Mrs. S. Noah seemed to be ok with her this morning. At least he didn't growl at her or seem stressed out. She's coming tomorrow to spend time with him and get to know him.
As you can see we had a little fun while learning about the ocean last week. This week we have been learning about bugs.

His schedule will look like this......

Monday: Music with friends from 9-9:45

Tuesday and Thursday I'm hoping to get OT,PT and ST started soon.

Wednesday: music with friends from 9-9:45 confirmation class 6:30-7:30

Friday: Mrs. S. day 9-11

In between all of this ABR therapy

Noah's House Mission Week

2010-09-12T09:37:00.001-07:00

2010-09-09T08:50:00.000-07:00

Home schooling is going pretty good. This week we are learning about things that live around and in the ocean. Yesterday we learned about sea stars.

Noah loves being in the water so I decided it would be fun for him to learn what kind of things live there.

Hand over hand I helped Noah trace the sea star and we then put it under the paper and did a crayon rubbing of the texture.
Today we learned about sea anemones.

Today during our math time we talked about fractions. In order to make it more fun, we made cookies. Here Noah is telling me what one says 1/2.

He then helped me mix the cookies up. He loves to cook. Tomorrow we are going to learn about sharks.

Remember the post about Noah doing ABR therapy while watching the Indians game? We were looking for Morgan and Brad to be on TV. Well, they actually were. Here is a picture of our TV screen during the game.

Zoo Trip

2010-09-02T16:41:00.000-07:00

The Saturday before Morgan went to college, we went to the Columbus Zoo. It's a great zoo. Lots of hands on for the kids. Noah got to touch a snake, starfish and he got to feed the Lorakeets. Scott likes to feed the Lorakeets too, until one decided to take a crap all over his shirt. Emily hates to go in with the birds. She sat outside to wait on us.
Brad (Morgan's boyfriend) enjoyed feeding the birds too. It was great spending the day with him and getting to know him a little bit better.

Noah doesn't seem to mind the birds either. Although one also took a crap on his bag. Darn birds....

The Columbus Zoo has a new polar bear exhibit. It was fun watching them swim around. You can watch them from above or below the water.

I thought this mountain goat was very interesting.

It was a great family day.

College Bound

2010-08-28T13:50:00.000-07:00

On Tuesday this week some of us got together to say goodbye to Morgan and wish her luck. Grandma and Grandpa Bebow enjoyed the time with everyone
Scott, Gunner, Uncle Paul and Grandma Sheaffer enjoying some great food and conversation.

Tara, Logan and Aunt Janet was there to tell Morgan good luck.

As we were finishing packing the van before we left on Thursday, the wind chimes on the front porch started to ring. It was if Grandpa Sheaffer was telling Morgan he was thinking of her and Good Luck. What a send off for her. It gave us chills.
This Morgan after we unloaded her stuff at Capital. ( Actually some ROTC guys had the van unloaded even before I had Noah out of the car. They then carried all up to Morgan's room.) She wasn't to thrilled with me wanting to take pictures. Get used to it girl.... there will be plenty more.

She is all moved in..... now she needs some decorations to make it feel more like home.

The cookie Meredith's Mom got for them.

Morgan and Meredith

Morgan was so excited to get a awesome room mate.

Morgan is living in the Saylor Ackerman Hall

A rally to get the kids excited about the new year.

Are we at Hogwarts? I thought this was Capital University.

All the freshman going through the gates to start their new adventure at Capital U

Morgan and Meredith making their pass through the gates.

Good Luck Morgan, we are so proud of you.

You are going to do great things.

Love Your Family

Will Noah be able to use a I-Pad as a communication device?

2010-08-23T14:41:00.000-07:00

I usually make Noah food right before I feed it to him. That way he is eating the same things we are. On Saturday we went to the zoo. So, on Friday we had to make his lunch and supper to take with us. I've been really wondering if Noah would be able to use the new I-Pad as a communication device. So I made up some pictures for Noah to choose what he wanted to pack for his lunch and supper for the zoo.

I had him chose between carrots and mixed veg tables. As you can see in this picture he is choosing carrots.
To make sure he wanted carrots I asked him and he clearly said yes. I had him choose his sandwiches, fruit and whether he wanted juice or milk as well.

Here he is pouring in the carrots.

When he was all done choosing and adding he was ready to blend it all up.

I really think with some more practice with him showing what his answer is by touching it, he'll be ready to use the I-Pad. I'm so excited!!!!! A whole new world will open up for him.

The Best of Both Worlds

2010-08-20T11:58:00.000-07:00

I finally got a phone call from the Shelby School system and was able to sit down and discuss what we can both do to help Noah. Noah will be receiving in home instruction 2 days a week by Mrs P. (hopefully.... she hasn't been asked yet) On Monday and Wednesdays he will be going to school for music with his friends for 45mins. He will be getting his therapies at home as well. I think we got the best of both worlds.

He can stay home and be home schooled in a less stressful environment, be able to spend time with his friends a couple times a week, get his therapies( I was looking at trying to schedule some outside therapy) and still get time with Mrs. P.

I told Noah what was going to happen next week (school starts next Tuesday in Shelby) and he seemed pretty excited about it. I need to find some good things for Noah and I to work on.

Any ideas?

Noah goes to the fair

2010-08-11T12:54:00.001-07:00

We took Noah to the Richland County Fair the other day. He always enjoys seeing all the animals. Sometimes I even hear him trying to make the animal sounds.

He got to pet a horse.... He wasn't real sure about it. I don't think he liked the "air" coming out of its nose. Noah kept wrinkling up his nose every time the horse would do it.
He really liked the bunnies. Emily said, Noah needed a bunny to take home. I'm not real sure about that. I guess he needs to ask his Daddy.

What I want for Noah......

2010-08-07T08:01:00.000-07:00

Last spring Noah and I visited his new school he would start in the fall. With great anticipation of wonderful things in store for Noah. He got a tour of the school and he met his new teacher Mrs. P. He also got to meet his new friends that would be in his class.
I've been talking to Noah all summer about what to expect in the fall when he went back to school. Then this last Thursday everything changed.........
I got a call from the school district. The teacher we've been wanting for Noah couldn't be his teacher because of some licensing issues. To say were devastated would be a understatement.
I was asked to make a list of things I was wanting for Noah. This is what I gave them:
A calm, relaxing atmosphere: less stressful = healthier Noah
A teacher change for Noah (6yrs with any teacher is enough)
Mrs. M didn't really "know" Noah well enough (even after 6yrs)to read his cues correctly. That appeared to frustrate Noah, which led to stress, which led to him ending up sick.
His way of answering "yes" is a quick long blink. She would wait until he would blink (if he doesn't blink right away, the answer is "no"), and then say "I thought so" or mark his answer wrong. Everyone needs to blink sooner or later.
On Monday at the pool party we talked to Mrs. P for quite some time. She was very excited to find a way for Noah to learn. Her ideas on age-appropriate things was spot-on to what I've been wanting for Noah. The last several years I feel Noah's learning has become stagnant. We were looking forward to Noah having a new teacher with fresh ideas. We were seeing some real possibilities for Noah to grow and learn in a new relaxed, less stressful atmosphere.
i hated watching Noah instantly getting stressed out taking him to school. Even this past Monday at the picnic , he started with his heavy breathing when he saw Mrs. M. I told it would be okay. This was a picnic with all of his friends and that he would be able to have a new teacher , Mrs. P, when school started. In fact, I've been telling Noah all summer about what's going to happen when he goes back to school. I'm afraid of what will happen when I tell him differently.
It breaks my heart to watch Noah be so happy and healthy during the summer, and then sound so "gunky" during the school year. Its so bad his pulmonologist wants to put a camera up Noah's nose and down his throat to see how he deals with secretions. The problem is that the gunky sound is how he tries to deal with his stress and not him struggling or having trouble swallowing his saliva correctly.
In all of this , I'm just trying to relieve some of Noah's stress.

Mrs. M had a heart of gold. But, she just wasn't a good match for Noah. I believe I'm going to try and home school Noah. What would you do?

Check out this website

2010-08-06T08:44:00.000-07:00

I don't know how to do this the "easy" way but, its too cool not to share.
www.showerchair.biz/shower-chair-users-stories-of-inspiration-and-beauty/noah's-first-shower-chair/. Maybe more people will be able to learn about Noah and his story. Every little contact helps.

Its finally here!!!!!!!!

2010-08-05T09:48:00.000-07:00

We got Noah's shower chair today. I tried taking a picture when he was smiling. But, all I got was a blurry picture because, he was kicking and making happy noises. I can' wait until later when I have time to give him a shower in it. It'll definitely help with my back. No more waiting for someone to help me and don't have to carry him in and out of the shower.

Noah has had a summer cold for about a 1 1/2 weeks now. I took him the the doctor last week to make sure it was just a cold. He weighed 57.6lbs. That just blows my mind. Its so cute looking at his little belly. I'm glad he is finally gaining weight but, its making extra hard to pick him up and just love on him.

I love to see progress......

2010-07-29T17:30:00.000-07:00

Last night after doing Noah's therapy I sat him up in front of me and he actually did quite well holding his head up. He held his head for the longest time. What was he watching you ask?

The Cleveland Indians of course. He does his best work watching the Indians. Even though they're in last place he still loves watching them.

Then Scott asked him to look at Daddy....... he turned his head to look right at him.

I was needing some motivation to get me to work harder at Noah's therapy, this definitely helped. I'm still working on finding a grant to pay for ABR. I didn't have much luck today. I have all the necessary letters I needed but I have had a hard time finding the right grant. One grant only paid for things in the USA and would only help if the applicant had personal insurance. With Scott working a temporary job we only have Medicad for the kids. Another won't be available until possibly Jan. of 2011. I'm getting really discouraged. We were supposed to go for more training the end of August. We don't have enough money, so we're hoping to find a grant so we could attend in November. Its hard to stay motivated when we're not even sure if we can keep affording the training. I guess all I can keep doing is putting it in God's hands and hope for the best.

Is there anyone out there that can help with finding a grant that will pay for Noah's ABR therapy? We don't want to stop something that is working so well for him.

Day 6,7,8.9......

2010-07-20T06:35:00.000-07:00

It was every ones intentions to get everything done in 5days. But with all the snags along the way, everything didn't get done. So, Ray, Scott C. and Tom worked extra days to get it all done. I would like to thank them for all their hard work. You have made my life so much easier. Thank you so much everything. You are truly a blessing from God.

Susan

The Big Reveal.......

2010-07-16T07:59:00.000-07:00

This is our house after all the scraping, roofing, painting and a new ramp.
Our new 1/2 bath.

The Civitan group in Shelby built Noah a new ramp. This is his first ride down.

This is a wind chime Scott got from his co-workers at Herald Printing after his Dad past away. It has the Lord's Prayer all over it. The coolest thing about it is...... the last coherent thing Scott's Dad said was the Lord's Prayer. Scott's co-workers didn't know that. How cool is that.
As soon as the porch was done, Scott hung the wind chime outside for the first time. On Noah's way up the ramp I helped him ring it. I told Noah that his Grandpa was talking to him. Noah grinned from ear to ear.

The best part of all........ Noah's first shower.

When Gaye approached me about having the kids do their mission week at our house this year, I thought to myself ...... there other people more deserving than my family. Why would someone choose to help us and instead of someone else? Now that it is all done I'm so grateful they

they did choose us to help. We are now able to enjoy our front porch. Just the other day our neighbors commented that they have seen Noah more in the last few weeks than they've seen him in along time. It's just so much easier taking him outside. The new 1/2 bath is wonderful. No more leakie roof. The best part is the shower........ Noah just loves being able to get really clean. I can tell he really enjoys his new shower because he makes very loud happy sounds when I'm taking him in to get a shower. Now I'm trying to be really patient in waiting for his new bath chair on wheels.......... I just got a phone call from Caring Solutions telling me that it was finally approved. They'll order it on Monday. I can't wait!!!! I will then be able to give him a shower by myself and I won't have to carry him in and out.

We would like to thank everyone who helped out during "Noah's House" Mission. It was great getting to work beside you and getting to know everyone a little bit better. You are truly part of Noah's Earth Angel Army.

Day 5..... Painting, Painting and more Painting

2010-07-16T06:39:00.001-07:00

Gaye painting the porch....... Gaye (with the help of Doris)was one that organized the mission event at our house. We are so grateful for everything she has done to help our family. We love you Gaye. Thanks so much....

Emma painting the porch as well.
The kids worked so hard this week. I'm surprised we didn't find more of them taking a power nap.

I defintley was ready for my laundry room to be finished. The dirty laundry was starting to pile up.

Chloe. Alyssa and Emily painted the new 1/2 bath

Day 4 Fun and frustration

2010-07-15T15:14:00.000-07:00

Day 4.......

All the kids except Scott went horseback riding. Scott and Ray stayed at our house hoping to get a lot done........ They started out the day by making a list of things they needed from Home Depot and they took off on their shopping spree. Five hours later they returned. On their way home from shopping they lost some of their supplies out the back and then Ray slammed on his brakes and more flew out the front. Ray was very good about keeping his cool all week but, I'm sure Scott heard a few choice words that afternoon. They were able to salvage most of it. Part of the shower walls became wainscoting in the new 1/2 bath. They were able to get the shower room walled in.

Steve and Jodie came and worked on the porch roof.

All the kids enjoyed a much deserved day of fun and a night at the Kolb's Kabin making pot iron pizzas and roasted marshmallows.

Day 3.....Destruction, repairing, weeding, replanting, roofing and more scraping

2010-07-15T08:42:00.000-07:00

If the kids weren't scraping they were pulling weeds in our yard, the church lawn and the neighbor ladies lawn as well.

Even more scraping being done.

Scott and Ray removing the window from the shower room.

Patrick and Mr. Yeager helped repair the porch pillars.

Pastor Conner came and helped with the porch roof. He didn't look very comfortable on the ladder but, he did a great job.

Dick and and Cal working on the porch roof.

Day 2.... roofing,gutting, scraping and power washing

2010-07-14T14:36:00.000-07:00

Stacey,Zack andBrett scraping the porch.
Emily,Alyssa, Spencer,Brett, Nate,Chloe, Morgan and Emma scraping the porch. While Cal was power washing.

More scraping I believe Morgan said that between the 2 days they scraped, for 8hrs. Now thats alot of scraping. Thank you for all your hard work everyone.

Dick and Cal doing a great job on the porch roof.

Stacey and Nate working on gutting the old bathroom.

We ended up calling the old bathroom the horse barn after it was all gutted.

Cal,Emma, Spencer and Nate took turns power washing the front porch.

Day 1- Washing, plumbing and wiring

2010-07-13T17:01:00.000-07:00

Every job needs a supervisor. Noah made a great one.

Morgan, Chloe, Alyssa and Cal washing the siding.

Scott helping Ray with the wiring and plumbing.

The first day of the mission week the kids washed down walls in our back room/Noah's room. They also washed the siding on the front porch. Ray and Scott rewired and replumbed the bottom 1/2 of the house. It was a great start to the week.

Before the madness began.......

2010-07-13T16:25:00.000-07:00

This our house before the kids came last Monday.

This is the 1/2 bath/laundry room....... soon to be a shower room for Noah.
This is where we are going to put our washer and dryer. All the kids washed down my walls and moved everything to get started.
This is the closet that will soon be our 1/2 bath.
Check back for pictures of the kids and adults in action and after photos soon.

Just a few more days...........

2010-06-24T10:46:00.000-07:00

Just a few more days until the fun begins. It can't come any sooner. I had Noah at the doctor a few weeks ago and he weighed 56.2lbs. Yeah, you read that right....56.2lbs!!!!!! He has gained 7lbs since April. He is really starting to fill out. In about a week I'll be able to give him a shower. That will be such a blessing. Only a few more days of sponge baths. Yay!!!!!
I really wish I could post a picture of Noah here but, everytime I try to post a picture all I get is a bunch of words no picture. GGGRRRR! It may have to do with the computer asking for Windows disc 4 the other day. I hope I can figure it out soon. I want to post some pictures of the progress next week.

What kind of Family would we be........

2010-06-16T17:29:00.000-07:00

I don't find myself thinking too much about what our family would be like if Noah was born a typical boy. I guess because sometimes it makes me sad that Noah is unable to do what most boys do. Do I think that Noah is unhappy being who he is? By all means no..... he is the happiest boy I know. He usually has a smile on his face no matter what.
What got me thinking about this again was, in just over a week our church youth group is coming to our house and putting a ramp on our porch. They also are going to make a handicap accessible shower for Noah. I'm so excited..... I can't wait to be able to give Noah a shower. I haven't been able to do that in quite sometime. He has gotten too big to carry to our upstairs bathroom.

All the youth received papers to fill out if they wanted to participate. I was filling out Morgan and Emily's and I read the first line.... All youth starting 7th grade and older may participate. If Noah was a typical child he would be starting 7th grade!!! Wow when did my little boy get so old? It then got me thinking about what our family would be like. Its so hard to even imagine. Would Morgan and Emily still be the awesome young ladies they are today? We've all learned so much from Noah. I don't think any of us would be the same. It's just so weird to even think about it. What would Noah be doing? Would he be in the band like his sisters? Would he want to play any sports? Would he be a avid reader, music lover and a movie lover like his Daddy? We may never know the answers to these questions. The one thing I'm sure of is we love Noah just the way he is and wouldn't want him any other way. We are so blessed that God chose us to be Noah's family.

Check out this letter....... such great changes in Noah's structure

2010-06-04T15:56:00.000-07:00

Noah Sheaffer Ins Doc

He's trying so hard........

2010-05-13T17:40:00.000-07:00

Lately we have been hearing different sounds from Noah.........

The other day Noah and I were at Debbie's house and I was talking about it was time to go home and Noah said "home"

Scott's sister Kim stopped by today to visit and Noah was babbling away and she asked him what he was talking about and he said "uh know" (I don't know)

Emily just picked Noah up to take him to bed.... she put him up on her shoulder and he said "woah!"

And the best one yet...... I was doing therapy and Emily told Noah she loved him.... he lifted his head up and said " I uh you" (I love you) I instantly had tears coming out of my eyes.

My little guy is really trying to communicate..... How I longed for this. Praise God!!!!! I pray it only gets better from here.

Top 20 Reasons Moms of Kids With Special Needs ROCK

2010-05-07T06:25:00.000-07:00

Mom over at Love that Max just about nailed my life to the T:

Top 20 Reasons Moms of Kids With Special Needs ROCK

1. Because we never thought that “doing it all” would mean doing this much. But we do it all, and then some.
2. Because we’ve discovered patience we never knew we had.
3. Because we are willing to do something 10 times, 100 times, 1,000 times if that’s what it takes for our kids to learn something new.
4. Because we have heard doctors tell us the worst, and we've refused to believe them. TAKE THAT, nay-saying doctors of the world.
5. Because we have bad days and breakdowns and bawl-fests, and then we pick ourselves up and keep right on going.
6. Because we gracefully handle the stares, the comments, the rude remarks. Well, mostly gracefully.
7. Because we manage to get ourselves together and get out the door looking pretty damn good. Heck, we even make sweatpants look good.
8. Because we are strong. Man, are we strong. Who knew we could be this strong?
9. Because we aren’t just moms, wives, cooks, cleaners, chauffeurs, women who work. We are moms, wives, cooks, cleaners, chauffeurs, women who work, physical therapists, speech therapists, occupational therapists, teachers, researchers, nurses, coaches, and cheerleaders. Whew.
10. Because we work overtime every single day.
11. Because we also worry overtime, but we work it through. Or we eat chocolate or Pirate's Booty or gourmet cheese, which aren't reimbursable by insurance as mental-health necessities but should be.
12. Because we are more selfless than other moms. Our kids need us more.
13. Because we give our kids with special needs endless love, and then we still have so much love left for our other kids, our husbands, our family. And our hairstylist, of course.
14. Because we inspire one another in this crazy blogosphere every single day.
15. Because we understand our kids better than anyone else—even if they can’t talk, even if they can’t gesture, even if they can't look us in the eye. We know. We just know.
16. Because we never stop pushing for our kids.
17. Because we never stop hoping for them, either.
18. Because just when it seems like things are going OK, they're suddenly not OK, but we deal. Somehow, we always deal, even when it seems like our heads or hearts might explode.
19. Because when we look at our kids we just see great kids. Not "kids with cerebral palsy/autism/Down syndrome/developmental delays/whatever label."
20. Because, well, you tell me.

The Woman in the Mirror

2010-04-27T11:54:00.001-07:00

The Woman in the Mirror......
By Cheryl Veenstra
February 2001

I saw an unfamiliar face in the mirror today. She caught my eye as I rushed to start the day. I hardly recognized this woman. What had changed in her eyes? She was no longer young, naive and viewing the world through rose-tinted glasses. What had caused the worry lines and thoughtful brow? How could she look so fragile and weary, yet also determined and strong? Around some corner on the road of life.......she had been shaken to the core of her very being.

There was a time when only tears and fears were reflected in those eyes. A doctor's unexpected words, the future suddenly uncertain......gray, shadowy images of the vague and scary concept of her child coming into the world as "disabled". An incredible journey began that caught her by surprise and would take her places she never thought she would go. The journey had been long at times and she had shed tears of pain and tears of joy. She'd had hopes and dreams dashed in the blink of an eye. She'd asked the question WHY? She'd had friends fail her and not know what to say or how to help. She'd seen her child suffer. She'd cried silent tears into her pillow at night. Tears of exhaustion and fear. Tears of helplessness and longing. Tears of thankfulness and relief. Tears that are choked back during the day, but are unleashed like floodwaters in the safety of the night to wash away any walls being built up to protect her heart. Nights of worry blurring into days of endless responsibility. But then slowly, but surely, her broken heart begins to heal and mend.

The same pity she had once felt as she watched a mother hold her 'special child' close was now looking back at her in the eyes of strangers. But a smile tugs at her lips as she suddenly realizes that now she knew the secret! The hard-fought, carefully guarded secret that was slowly revealed in the depths of her heart.....but only after the tears and anguish of the first days and weeks of this new life. The illusive truth that mothers of special children discover as they take their first faltering steps down this
new path........It was okay. She and her child could survive, even thrive! It was not as grueling and unforgiving a road as she had imagined. The fog, confusion, despair and fear were being slowly replaced by peace, acceptance, contentment, joy and gratitude. A mother's unique, unconditional love changes the equation that may look hopeless and tough from those outside, looking in. She will fight for, live for and die for her child. These special children transform those around them into different people. Stronger people. Dare I say it......deeper people. Long gone are the days when all they had to worry about was where to vacation or what color mini-van to buy. They now struggle with life and death medical issues. They must answer their child's questions about life's unfairness and pain. What remaining strength and energy they have is spent trying to make their
'family life' as normal and happy as possible.

A twinkle returns to the eyes of the woman in the mirror as she takes a deep breath and remembers what she's been fighting for. How very worthwhile this journey has been! This child is an incredible gift and it is a privilege to be given the task of raising her. Her child is beautiful and perfect in her eyes. She longs for her child to be seen by the world through this filter of love, acceptance and potential. Could others take the time to see past this little girl's slower steps to see the life and love reflected in her eyes? Would her child be able to see herself through the filter of contentment that the woman has journeyed so long to discover?

Hope was rekindled as the woman's eyes grew brighter. The future remained uncertain, but the incredible, protective love she felt for her child through a warm blanket over the cold, dark storm clouds that used to threaten her very soul. As she threw open the doors of her heart, she felt the warm sun on her face and she beheld a beautiful rainbow of intense beauty and unmistakable peace. Hope still comforts this woman who cries in the middle of the night. Love gets her through each day. Faith takes her hand and leads her around each corner and through each deep, dark valley. Peace soothes her heart as she relinquishes control of their destiny to One wiser and all knowing. Joy brings laughter and smiles to those tired eyes once again. Each day is recognized for the gift it is.

I gave that woman a smile as I left her at the mirror today. I'll see her again soon and I'm curious to see how she will continue to change and grow. She's not the same young, carefree woman she used to be, but that is okay. I like who she is becoming and I feel comfortable in her life. The sun is shining, the day is brand new, my child is humming and God is so good!

Program and Recitals

2010-04-24T15:35:00.000-07:00

Noah participated in his spring program a few days ago. He played a drum and a xylophone while the other children played recorders, drums and xylophones. He was able to fit right in and participate with them. If you remember last year I had to fight to get him in the program. This year I didn't have to say a thing. They most know this Momma won't put up with them leaving him out.

Noah's teacher Mrs. McClish helping to play his instruments.

Morgan and Emily also had their dance recital. I can't believe Morgan had her last dance recital. All these last are really making me sad.

The whole senior dance group and her teachers.

Emily did a great job too.

Trying to schedule our day.....

2010-04-14T11:24:00.000-07:00

Noah, Susan and I had a great time in Disney. More about that another day.

Since getting back from Florida Noah and I have been catching up on sleep and trying to figure out a schedule that works for us. Before we went to Florida I was having a terrible time trying to figure out how to get everything done in a day. It has taken me almost 2 wks but I believe that I've figured it out. Here it is:

6am-get up and get Noah changed and dressed for school

6:15-7am do ABR exercise behind the SCM

7am feed Noah

7:15am put Noah in his vest for 1/2hr

8am check to see if Noah needs changed

8:15 Take Noah to school

8:40-11:00am laundry,dishes and errands

11:00am Pick Noah up from school

11:30 12:15 ABR exercise between the jaws

12:30 feed Noah

12:45-2:45 time for a break for Noah and Me YEAH!!

2:45pm pick Morgan and Emily up from school

3:15-4pm ABR exercise Lateral approach to posterior pelvis

4:00pm feed Noah

4:00-5:oopm Fix supper

6:00-6:45pm Scott's ABR exercise between the shoulder blades

7pm Feed Noah

7:15-7:45pm Put Noah in his vest.

9:30 Feed Noah and put him to bed

Collapse!!!!!

Why do I feel so guilty?

2010-03-21T05:18:00.000-07:00

I've been wondering for al ong time whether I should post about our special trip that is coming up. I was worried about what some people might think about us going. Since we just had a fundraiser for Noah's therapy. I assure you none of Noah's fundraiser money was used for our trip. I still am excited about going but, I guess at times I feel guilty about it and haven't told many people. In that being said:

Last year at this time the Shelby Whippet Band was planning their trip to Disney World to play in the Magic Kingdom Parade. Morgan and Emily are both in band and would be going. What parent wouldn't want to see their childern in a Disney parade. right? I wanted to go so bad, I didn't want to miss it. Scott and I talked.... with Scott having to take off work all the time for Noah's therapy's and doctors appts he would'nt have any vacations days left to go. Also it wouldn't cost as much with just 2 of us going instead of 3. So the saving began....... Scott, Thank you so much for making such a huge sacrifice for me. I love and adore you so much.

So, in 5days Noah,my friend Susan and I are going to Disney World!!!!!

The sad thing now is.... Scott lost his job 1 1/2 weeks ago. He can now go but, we can't afford it.

Susan

The Little Guy did what he was told.....Darn Him!!!

2010-03-13T14:20:00.000-08:00

Last weekend I could tell Noah wasn't feeling quite right. On Tuesday I told him that if he was going to be sick, now was the time. We're going on a special trip soon and he couldn't be sick then. Well on Wednesday he got sick for sure. (Darn him for listening) We went to the doctor Wednesday, Thursday and Friday for rocefin shots. He seems better today but, he's still coughing and he is still a bit grouchy. He has 13 days to be back to 100%. Please pray that he will feel better soon.

Wow, What a week

2010-03-01T07:13:00.000-08:00

Our training session in Chicago went really well. We learned 4 new excercises. They took 800 pictures of Noah for his comparison file. Better head control and a stronger trunk was noted. Wcott and I was very pleased. We're so thankful we've found something that is helping Noah. He didn't sleep well we were there. So, on Saturday during our training session Noah was very grouchy. We kept trying to do our new excercies on Noah but, he would start to cry and one point he got angry enough and hesaid "NO" After that we would just practiced on each other or our trainer Fehim. Because when the little guy says NO he means it.

Sorry its taken me so long to update about our trip. But, on the way home from Chicago I started to not feel well. I was on the couch as soon as we got home. I was sick all day Monday. On Tuesday there was a 2hr delay for school. On 2hr delay days Noah doesn't go to school. With all the extra time and with me feeling some what ok I started Noah's new exercises. He seemed to do really well with them. On Wednesday morning I went to get Noah ready for school and found him (I should say I could smell him way before I saw him) not feeling well. I weighed my options...... I decided instead of taking his clothes off, I would cut them off. It ended up being the best idea. Otherwise I would probably still being washing it out of his hair. Poor little guy...... I never wanted so bad to be able to give him a shower as I did that morning. I gave him 5 sponge baths that morning and he still didn't seem clean enough for me. It didn't help that my eyes were burning from the smell. Saddest part is he also got tired of me brushing his teeth that day. He had horrible nasty poop breath too...... After about 4x brushing his teeth he started fighting me to stop. On Wednesday Scott came home earlier from work and the girls started not feeling well. On Thursday we were all home from work or school sick. I can say that has never happened before and don't care if it ever happens again. It's definitely not my idea of quality family time.
It's now Monday again and things seems to be back to normal. Everyone is back to school and work. It's almost time to go pick Noah up from school and start therapy. I'll update with pictures soon.
I almost forgot the greatest thing about Noah being sick......... he rebounded just like everyone else. (before he would have gotten so much worse like get pneumonia and it would have taken him much longer to get better. How cool is that!!!!!

Susan

Happy Sweet 16 Emily

2010-02-22T06:26:00.000-08:00

Happy Sweet "16" Emily

Emily, I can't believe that you turned 16 today. You're growing up to be such a sweet,kind and mature young lady. I'm so glad that God chose me to be your Mom. I'm so proud of you.

Love, Mom

The Benefit was a Success

2010-02-10T11:24:00.001-08:00

Noah was a little out of sorts on Sunday during the benefit. He is such a creature of habit that anything out of the ordinary sets him off. He did although enjoy seeing everyone.

Jackie Davies (the one in the middle) offered to take care of all the food. That was such a help. Thank you so much Jackie. Thanks for being one of Noah's earth angels.

Morgan, Jackie, Linda, Gaye and Gail (Mom Dahn) did a great job singing.

Paul, Dave and Scott did a great job playing the music. Scott sang He's My Son. Always a tear jerker.

This is kinda dark but even little McCray played his guitar.

Morgan and her friend Ashlee.

Abby and Emily...thanks for taking care of the silent auction. You did a great job.

Debbie, Sandy, Maddie and Mom. Maddie ate so many black olives, I'm sure she was going to burst.

Aunt Janet, Mom Sheaffer, Tara and Paul enjoying the music.

Susan and her Mom came, it was good to see them.

I'm so glad my cousins Kim and Doug Klotz came it was so good to see them.

Noah's teacher Mrs. McClish and her daughter Julie came as well.

My cousin LuAnn, Aunt Joanne and Uncle Louie surprised me as well. It was good to see them.

When the snow storm hit us this last weekend, I was almost certain that we wouldn't get a good turn out for the benefit. But, God provided and we raised enough money to attend our next training session in Chicago. We leave a week from tomorrow. We're so excited to be able to learn our new exercises. Thanks for everyone that has helped us. Whether it was by prayers, donations or time. Thank you so much!!!!!!!

Happy 12th Birthday Noah

2010-01-28T03:36:00.001-08:00

12yrs ago today Daddy received his little sidekick. You'll always be his hero.

I can't believe you are 12. Where does the time go...... Some days it feels like such a long road and yet time still flies. I'm so glad I'm on this journey with you. I love you so much.

Emily loves to spend time with you.

Morgan loves to help you learn new things.

You are so lucky to have 2 big sisters that love you.

Happy Birthday Noah!!!!!! We love you so much.

A Benefit for Noah

2010-01-27T15:37:00.000-08:00

Februrary 7th 2010

2-4pm

First Lutheran Church

33 Broadway

Shelby, Ohio 44875

Food, Music and Silent Auction

We would love to be able to take Noah to Chicago on Feb 18th for our next ABR training.

The Sheaffers

A Punch in the stomach

2010-01-01T11:52:00.000-08:00

Shortly after Noah got home from the hospital I came across a website that calculated the life expectancy of a special needs children. Noah is a in the 5th Group. The 5th group is a child who doesn't walk,crawl, creep or scoot and doesn't feed himself and is fed by a G-tube. Noah life expectancy according to this chart is 7-14yrs. Did you hear that? 7-14yrs!!!!!!! I felt like I was punched in the stomach. Noah is going to be 12 the 28th of this month....... I feel like I'm running out of time with him. With Noah just getting out of the hospital for pneumonia (first time ever)
I was wondering if this was going to be a start of a new trend with him. Having to be in the hospital every time he gets sick. It scares me to death. I'm not ready to let him go yet. I'm tears again just thinking about it. I fell so helpless. That's why I'm desperately trying to find something to help Noah. Scott and I really feel ABR is our answer. The weekend Noah was in the hospital was the time we were to be in Chicago for our ABR training. Unfortunately even if Noah was well enough to go we wouldn't had gone anyway. Because we just didn't have the money. The next time we can go is February 18th. How I wish we could were able to go. I keep saying that if this is what God wants it will happen. I'm hoping to have a small benefit for Noah on Sunday Feb. 7th.

This is the ABR machine we would love to be able to afford. Noah could do therapy all night long and be able to make faster progress. I'm still working on trying to get a grant to help us out. Why does things have to be so hard? I just want to be able to provide a better quality of life for Noah. Now I feel like I'm also trying to save his life as well. I've said this before..... why doesn't special needs children come with the means to be able to provide for them?

Gavin (ABR trainer) and Noah in Montreal.

I pray that 2010 will be a better year for us.

Noah loves a therapy that he can fall asleep

and he still gets stronger

I'm not ready to let this smile go.

Susan

Happy 18th Birthday Morgan Ranelle

2009-12-30T05:26:00.001-08:00

Happy Birthday Morgan

You're the most beautiful person inside and out. I'm so glad God chose me to be your Mom. I'm going to miss you terribly next year but, I know you are going to make an amazing adult out in the world. You're such a blessing.

I love you so much,

Mom