Thursday, March 31, 2011

We Made it to Montreal

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.

Friday, March 25, 2011

Thursday, March 24, 2011

A Change of Plans

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

Thursday, March 17, 2011

A Check Up at the Cleveland Clinic

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.

Friday, March 11, 2011

Old Photo Friday

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

Tuesday, March 8, 2011

March is Trisomy Awareness Month


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.


Friday, March 4, 2011

Old Photo Friday

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.