by Joyce: Thank you to everyone who took the time to leave comments on our last post. Focusing on the thyroid was a very good suggestion and one of the first areas that the doctor does look at. If you have been following for a while, you might recall that Sarah has recently had two very thorough blood analyses done. They were specifically looking at the thyroid and leukemia because of some white cell abnormalities. Both came back in the normal range.
Now as simple as this might seem, there are two things we are watching: her wisdom teeth and an excessive amount of wax build up in her right ear(I can't bring myself to blog about the procedure to eliminate it-sorta gross-if you want more info google "how to eliminate wax build up in ears":). Both could make hearing an issue, which could be a reason that she is not responding to questions. Simple. Almost embarrassingly simple. Yet, I think that is what us mom's with kiddos with multiple medical issues plus the Down syndrome goes through. It is often a process of elimination. In Sarah's case, we know she hides her pain from us. She knows all too well what the consequences can be. It really was TJ's arrival back home that brought the pain in her ear to our attention.
I do want to share a video and the link to the National Down Syndrome Society webpage for Alzheimer's. Both are excellent resources. I know most of our readers have young children. Truthfully I'm not sure I would have been bothered with this topic when Sarah was their age, but as we say in our house, "it is what it is."
Click HERE to go to the National Down Syndrome Society webpage for Alzheimer's information.
My Name is Sarah
Wednesday, June 30, 2010
Sunday, June 27, 2010
Keeping It Real
by Joyce...scary looking sky in Cleveland tonight. For a few moments, I just stood watching the clouds swirl about. It got colder, the wind picked up speed, and the color changed from dark grey to yellow to pink. It was hard to tell exactly what was going to happen. It was an interesting observation.
And it reminded me of what has been swirling about in my head lately. I can't fully explain it, so I'll just throw it out there. Sarah is changing. And not necessarily in the direction one might hope. Truthfully, I have been noticing it for the past few months. It's not one major thing, just little things here and there. A blank stare. The lack of response to direct questions. Confusion. Lot's of confusion actually.
Here's an example. The Friday before TJ's graduation, I decided it would be the perfect time to have the carpet cleaned in our house. The boys were already in Columbus and once Sarah and I left, the house would be void of people all weekend. On Thursday night I moved all the little things like the trash can, the desk chair, a few containers with games in Matt's room onto his bed. Sarah must have asked at least 25 times why I did that. And every time I told her the next morning the guys were coming to clean the carpet. The next morning we got up and I did the same thing in our room , TJ's room and then went into her room. She threw a fit. At first I got a little angry with her. Then I realized she was really so confused. I told her as soon as we got home from Columbus we would put them back on the floor. She sat and sobbed for at least half an hour. Then the crew came and she sat and watched them from the room with wood floors, shampoo the carpet. When they were done, she asked me if her room was still the same color. I didn't know what to think. I assured her it was the same carpet, just cleaner. She seemed OK. Then as we were backing out of the driveway, she asked me if the carpet would still be here when we got back. I assured her it would be yet it left me with a heavy feeling.
That whole weekend she kept doing things that just seemed off. When I asked her where she wanted to eat, she couldn't remember the restaurants we usually go to. So I started verbally listing them off. That usually would trigger some response followed by, "oh ya and I want a..." This time I got nothing. No response. This had me more worried.
Then we went to The Karate Kid. She held my hand the entire time. I dismissed it as her being a little frightened. There is a lot of fighting in that movie. When we came out she seemed like her old self, posing as the Karate Kid in the parking lot. The next day we went to see Letters to Juliet. As the plot began to unravel, I thought to myself, she probably does not have a clue what is going on. And then when a certain situation happened(I won't give details in case you want to see the movie) she said something out loud that blew me away. It was on a very high level of understanding. And I dismissed my worries.
Then we had an incident at the office/store. I wrote a little about it on our store blog.
This week, I saw more of the behaviors that have me a little worried. Forgetfulness, confusion. Just a general slowing of processing ability. Nothing drastic.
I forced myself to spend some time tonight searching and reading about the early onset of Alzheimer's in adults with Down syndrome. It scares me to the core. Yet, I know we are in amazing Hands. We learned a long time ago to take one day at time. And that is what we will continue to do. It may be nothing. It may be that because I am spending more time with her now that her job training program is off for the summer, I am overreacting to little things. One thing I know for certain though, a mother's worry is never done.
And it reminded me of what has been swirling about in my head lately. I can't fully explain it, so I'll just throw it out there. Sarah is changing. And not necessarily in the direction one might hope. Truthfully, I have been noticing it for the past few months. It's not one major thing, just little things here and there. A blank stare. The lack of response to direct questions. Confusion. Lot's of confusion actually. Here's an example. The Friday before TJ's graduation, I decided it would be the perfect time to have the carpet cleaned in our house. The boys were already in Columbus and once Sarah and I left, the house would be void of people all weekend. On Thursday night I moved all the little things like the trash can, the desk chair, a few containers with games in Matt's room onto his bed. Sarah must have asked at least 25 times why I did that. And every time I told her the next morning the guys were coming to clean the carpet. The next morning we got up and I did the same thing in our room , TJ's room and then went into her room. She threw a fit. At first I got a little angry with her. Then I realized she was really so confused. I told her as soon as we got home from Columbus we would put them back on the floor. She sat and sobbed for at least half an hour. Then the crew came and she sat and watched them from the room with wood floors, shampoo the carpet. When they were done, she asked me if her room was still the same color. I didn't know what to think. I assured her it was the same carpet, just cleaner. She seemed OK. Then as we were backing out of the driveway, she asked me if the carpet would still be here when we got back. I assured her it would be yet it left me with a heavy feeling.
That whole weekend she kept doing things that just seemed off. When I asked her where she wanted to eat, she couldn't remember the restaurants we usually go to. So I started verbally listing them off. That usually would trigger some response followed by, "oh ya and I want a..." This time I got nothing. No response. This had me more worried.
Then we went to The Karate Kid. She held my hand the entire time. I dismissed it as her being a little frightened. There is a lot of fighting in that movie. When we came out she seemed like her old self, posing as the Karate Kid in the parking lot. The next day we went to see Letters to Juliet. As the plot began to unravel, I thought to myself, she probably does not have a clue what is going on. And then when a certain situation happened(I won't give details in case you want to see the movie) she said something out loud that blew me away. It was on a very high level of understanding. And I dismissed my worries.
Then we had an incident at the office/store. I wrote a little about it on our store blog.
This week, I saw more of the behaviors that have me a little worried. Forgetfulness, confusion. Just a general slowing of processing ability. Nothing drastic.
I forced myself to spend some time tonight searching and reading about the early onset of Alzheimer's in adults with Down syndrome. It scares me to the core. Yet, I know we are in amazing Hands. We learned a long time ago to take one day at time. And that is what we will continue to do. It may be nothing. It may be that because I am spending more time with her now that her job training program is off for the summer, I am overreacting to little things. One thing I know for certain though, a mother's worry is never done.
Saturday, June 26, 2010
Swimming on a Saturday
It was hot in Cleveland today. So I put my suit on and told my mom I wanted to go to the pool.
She said it was perfect timing. When we got to the pool I knew why. It was adult swim time. Everyday from 5:30 - 6:30 only adults can be in the pool. That means it is basically empty. I like it that way.
Oh the water is a little cold at first. So my mom told me to dive for the ring and then I would get used to it quicker.
There was a birthday party over in the pavilion with a DJ. I had to stop diving for the ring when he played the chicken dance. LOL!!! I've never done it in the pool before.
Back to diving for the ring.
OMG!!! My mom tossed it on my foot while I was floating on my back. Good one mom.
Time to get out. Here comes the little kids again. How do you like my beach towel? No one can take it. Well I guess if your name was Sarah you could:)
Ahh...now this is the life. Reading by the pool.
She said it was perfect timing. When we got to the pool I knew why. It was adult swim time. Everyday from 5:30 - 6:30 only adults can be in the pool. That means it is basically empty. I like it that way.
Oh the water is a little cold at first. So my mom told me to dive for the ring and then I would get used to it quicker.
There was a birthday party over in the pavilion with a DJ. I had to stop diving for the ring when he played the chicken dance. LOL!!! I've never done it in the pool before.
Back to diving for the ring.
OMG!!! My mom tossed it on my foot while I was floating on my back. Good one mom.
Time to get out. Here comes the little kids again. How do you like my beach towel? No one can take it. Well I guess if your name was Sarah you could:)
Ahh...now this is the life. Reading by the pool.Friday, June 25, 2010
Where's Oviedo...
Do you ever really study who reads your blog? Here is our map at the moment. No hits today in Africa. Doesn't look like any in South America either.
A few bloggers have commented recently that they feel bad when they loose followers. We have been lucky to not loose any followers, but we have noticed that our almost nightly reader from Oviedo, Florida has disappeared. Where are you Oviedo? Where are you? Come back...come back.
A few bloggers have commented recently that they feel bad when they loose followers. We have been lucky to not loose any followers, but we have noticed that our almost nightly reader from Oviedo, Florida has disappeared. Where are you Oviedo? Where are you? Come back...come back.Wednesday, June 23, 2010
I'll Take Mug Shots for $160
We found $160.00 today thanks to a new policy in our City of South Euclid!!! Last year when we went to get our pool passes, I got mine free because they decided to extend that courtesy to persons with a disability. This year they decided that the entire family would be free. The only requirement is we had to get I.D. cards with our picture on it instead of a metal tag sewed on our suits.
My mom said, "Heck yea! I'll take mug shots for $160." Too bad we couldn't go swimming after we got them. The weather was getting really stormy. Well maybe tomorrow. Plus I want to go back to the pool we got our picture taken at. Two of my friends from school work there. Hi Jessica and Samantha:)
My mom said, "Heck yea! I'll take mug shots for $160." Too bad we couldn't go swimming after we got them. The weather was getting really stormy. Well maybe tomorrow. Plus I want to go back to the pool we got our picture taken at. Two of my friends from school work there. Hi Jessica and Samantha:)
Monday, June 21, 2010
12 Days of Christmas
Six months from this week is Christmas.
So I have to get busy. My mom and I are going to be sewing alot this week. First, I have to unload the fabric.
I try to match them up as I take them out of the box.
Then I have to take the plastic wrapper off each bolt.
Phew...this is hard work. Last week my mom let my brother unload a collection called Fruitcake and I was not too happy about that. This is my fabric. So I took off my jacket and got back to work.
It might seem a little odd that we are unwrapping Christmas fabric in June. But that is because us quilters need time to make our projects in time for the holidays.
Cute. Now I am unwrapping the jelly rolls. They have a 2 1/2" strip of all the fabrics in the collection already precut.
And now the charm packs. They are 5" squares. I like to sew with these. I think they are my favorite.
My mom thought our customers might like this book. So she ordered six of them. We are going to make those stockings on the cover. If you look closely they are made out of this fabric collection which is called 12 days of Christmas and guess what? It was created by my favorite designer...Kate Spain!!! If you go to Kate's blog you can see a picture of her with the woman who designed these four stockings and wrote this book.
So I have to get busy. My mom and I are going to be sewing alot this week. First, I have to unload the fabric.
I try to match them up as I take them out of the box.
Then I have to take the plastic wrapper off each bolt.
Phew...this is hard work. Last week my mom let my brother unload a collection called Fruitcake and I was not too happy about that. This is my fabric. So I took off my jacket and got back to work.
It might seem a little odd that we are unwrapping Christmas fabric in June. But that is because us quilters need time to make our projects in time for the holidays.
Cute. Now I am unwrapping the jelly rolls. They have a 2 1/2" strip of all the fabrics in the collection already precut.
And now the charm packs. They are 5" squares. I like to sew with these. I think they are my favorite.
My mom thought our customers might like this book. So she ordered six of them. We are going to make those stockings on the cover. If you look closely they are made out of this fabric collection which is called 12 days of Christmas and guess what? It was created by my favorite designer...Kate Spain!!! If you go to Kate's blog you can see a picture of her with the woman who designed these four stockings and wrote this book.
Thursday, June 17, 2010
4 Awards + 1 Ticket
My job training program is over until August. At our final ceremony I got four awards.
Two for perfect attendance in April and May. An Achieving Excellence Award and The Power of One Award. I was so happy I came running in the house.
Plus I got a movie ticket from R. H. Myers, assisted living center I worked at. Sweet. I think my dad and I are going to go see Toy Story 3 this weekend while my mom and little brother are in Kalamazoo for a soccer tournament. That should be fun.
Two for perfect attendance in April and May. An Achieving Excellence Award and The Power of One Award. I was so happy I came running in the house.
Plus I got a movie ticket from R. H. Myers, assisted living center I worked at. Sweet. I think my dad and I are going to go see Toy Story 3 this weekend while my mom and little brother are in Kalamazoo for a soccer tournament. That should be fun.Tuesday, June 15, 2010
Love the AMC
On Sunday night after graduation, we went back to my favorite movie theatre in Columbus.
It's pretty empty tonight. Guess what we saw?
This might give you a clue...
or maybe this pose. LOL!!! We saw the Karate Kid. It was really good. That little Jaden Smith is a cutie pie. My mom predicts he is going to do well as an actor like his dad.
Then last night we went back again. This time we saw Letters to Juliet. Very sweet movie.
This is what the theater looks like when all the Ohio State students are gone...empty.
As I was walking out, I stopped dead in my tracks. OMG!!!!! Look. It is Zac Efron!!!!! You know I LOVE him. Right? Charlie St. Cloud. A new movie coming out this summer on July 30th. I am going to put the date on my calendar.
It's pretty empty tonight. Guess what we saw?
This might give you a clue...
or maybe this pose. LOL!!! We saw the Karate Kid. It was really good. That little Jaden Smith is a cutie pie. My mom predicts he is going to do well as an actor like his dad.
Then last night we went back again. This time we saw Letters to Juliet. Very sweet movie.
This is what the theater looks like when all the Ohio State students are gone...empty.
As I was walking out, I stopped dead in my tracks. OMG!!!!! Look. It is Zac Efron!!!!! You know I LOVE him. Right? Charlie St. Cloud. A new movie coming out this summer on July 30th. I am going to put the date on my calendar. Sunday, June 13, 2010
I'm So Proud
Today my big brother graduated from The Ohio State University.
He has worked really hard so he got to wear special cords around his neck. They are scarlet and gray. Hey those are the Buckeye colors.
I'm so lucky to have two great brothers. Oh speaking of scarlet, do you see my new shoes:)
Nice job TJ!!!
I was so happy to see Julie too. We are waiting to go to dinner. We went to the Cap City Fine Diner in Grandview.
Then we came back for dessert. We had some balloons waiting for TJ, the silly guy.
And some graduation cup cakes. They had to go back to Cleveland right after dinner because Julie starts a new job tomorrow, so they were able to take their cupcakes with them. My mom and I are staying in Columbus for a day or two. Tonight we are going to a movie.
He has worked really hard so he got to wear special cords around his neck. They are scarlet and gray. Hey those are the Buckeye colors.
I'm so lucky to have two great brothers. Oh speaking of scarlet, do you see my new shoes:)
Nice job TJ!!!
I was so happy to see Julie too. We are waiting to go to dinner. We went to the Cap City Fine Diner in Grandview.
Then we came back for dessert. We had some balloons waiting for TJ, the silly guy.
And some graduation cup cakes. They had to go back to Cleveland right after dinner because Julie starts a new job tomorrow, so they were able to take their cupcakes with them. My mom and I are staying in Columbus for a day or two. Tonight we are going to a movie. Saturday, June 12, 2010
Exempt from Candlelight Ceremony
Tonight my dad said he wanted to talk to me.
So I sat down in his lap. You know I'm still a daddy's girl.
He started giving me kisses. Then he told me that tonight he and mom were going to a candlelight ceremony with TJ and Matt agreed to stay with me to sister sit. Then tomorrow for graduation grandma and grandpa are coming to stay with me so I do not have to go out in the humid heat. That means I am exempt. You know what I said...
Hurray!!!!!! And then they left. When they came home I got to see some pictures...
Ahhh...TJ and Julie.
Oh now I see why it was called a candlelight ceremony.
Yep there's my dad. He graduated from Ohio State in 1983 and now TJ in 2010. 
LOL!! Nice picture TJ. Now those are some big buckeyes:)
So I sat down in his lap. You know I'm still a daddy's girl.
He started giving me kisses. Then he told me that tonight he and mom were going to a candlelight ceremony with TJ and Matt agreed to stay with me to sister sit. Then tomorrow for graduation grandma and grandpa are coming to stay with me so I do not have to go out in the humid heat. That means I am exempt. You know what I said... 
Hurray!!!!!! And then they left. When they came home I got to see some pictures...
Ahhh...TJ and Julie.
Oh now I see why it was called a candlelight ceremony.
Yep there's my dad. He graduated from Ohio State in 1983 and now TJ in 2010. 
LOL!! Nice picture TJ. Now those are some big buckeyes:)Friday, June 11, 2010
Packing It Up
I am always so happy to see my big brother TJ. This is a big weekend for him.
I get one more chance to sit on his bed in his apartment on Lane Ave.
Do you know why? Because he is graduating from college on Sunday.
So it's time to pack it all up to take it...???hmmm...where are we taking his stuff???Thursday, June 10, 2010
Music Therapy Share Day 2010
Tonight was Share Day for all of Bonnie's music students.
As soon as I sat down, I checkd to see where I was in the line up. I was a little more than half way down. Time to go sing now.
I think that went really well. You can watch my performance below.
Ahhh...how nice. Bonnie just brought me a certificate.
It is a music award. It says: Excellent singing Sarah. You rock!
Here we are for our annual pose after the program.
Haa, and now our silly pose. Do you want to hear something funny. My mom told me my dress was like a moo moo. I replied, "I am not a cow." She laughed and said, "No not moo like cow, mu mu like Hawaiian dress. Ohhhhh:)
As soon as I sat down, I checkd to see where I was in the line up. I was a little more than half way down. Time to go sing now.
I think that went really well. You can watch my performance below.
Ahhh...how nice. Bonnie just brought me a certificate.
It is a music award. It says: Excellent singing Sarah. You rock!
Here we are for our annual pose after the program.
Haa, and now our silly pose. Do you want to hear something funny. My mom told me my dress was like a moo moo. I replied, "I am not a cow." She laughed and said, "No not moo like cow, mu mu like Hawaiian dress. Ohhhhh:)
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