My Name is Sarah

MY NAME IS SARAH. I am a quilt designer and the sewcial director of Sarah's Sewcial Lounge. I also have a business called Down Right Charming. I sell my quilts mostly on etsy and I make pillowcases to donate to patients in the hospital in memory of my friend Kristen Kirton. I am a young adult living with Down syndrome. I hope you enjoy reading about my journey.

Saturday, February 28, 2009

Late Breaking News

(Originally posted on 3/5/09) Here I am sitting in the library of the Union Club in Cleveland earlier today. I am waiting for the arrival of Dr. E. Gordon Gee, President of The Ohio State University.

I will give you a report of our meeting later. It went very well. Thank you to everyone for commenting, emailing and sending me information to use.

Presenting Angelina and Brad...

...Just kidding...It's Julie and my big brother TJ...I just had to share this picture of them at the winter dance tonight. Don't they look amazing!!!!

I love you Julie and TJ

Big Ten Tennis ~ OSU vs. Penn State

After the Disney show we went to our favorite cafe on Lane Avenue, Camilles. While we were in there the girls tennis team came in. They invited us to their match at 5:00. I have never been to a Big Ten tennis match.

This is a very nice facility. It is off campus on Henderson Road. I always wear the team colors when we go to an OSU sporting event.

Cool. Even the tennis courts are scarlet and grey.

Those are the girls that we met at the restaurant. They play doubles first. That means two of them are on the court at the same time.

Well that was fun. I am glad we came.

Disney on Ice ~ A Disneyland Adventure

We are at Nationwide Arena in downtown Columbus.

We came in a different door this year, so we have to go up this big escalator.

And another escalator. This is a pretty cool arena.

We have already seen this show before. It is a tradition that we go every year though. If we have already seen the show we sit in different location. This year we are at the top of the club section.

I bought 3 chocolate chip cookies and my mom is trying to take a bite.

Here comes the show...

Yea, It's Mickey and Minnie Mouse, Pluto, Daffy Duck and the gang. It's just like being at Disney.

It's a Small World is playing. Do you see the Incredibles down there?

Even the Electric Light Parade is magical.

That's it until next year. I wonder what show it will be?

Friday, February 27, 2009

WHAT a Weekend!!! Starting with Friday Night

I was feeling so much better by Friday afternoon. I got dressed and my mom took me to the Food Bank to work my afternoon shift.

Where is my work crew? They are going to be surprised to see me.

After dinner, my mom and I loaded up and headed for Columbus.

We pulled out of the driveway in Cleveland at 9:17...

...and into the driveway in Columbus at 11:51.

I knew my mom was going to take a picture so I pretended I was asleep.

And then I couldn't help myself. I started laughing and laughing. I love when we do just us girls weekends.

HELP...Do you know a college offering a program for persons with Down syndrome?

Next Thursday, March 5th, I am going to be sitting down with the President of The Ohio State University. Yes, that's right. Just Dr. Gordon Gee, me and my mom. I would like to tell him about programs at universities or community colleges that are already in motion. If you know about one will you let me know, soon. I need to do my research. It is not everyday you get to sit down with the President. I'm off now to find a new outfit. I have to look my best.

Wednesday, February 25, 2009

Guess Who's Back?

It's me, Sarah. I got the IV line out of my hand and I am feeling much better, so I am back on my blog:)

I missed a lot of days. So it is going to take me a while to catch up.

I was afraid I would forget how to type. But I didn't. Thank you for all the get well wishes.

Check This Out ~ We're In!!!

I opened this email earlier. Hello, I was just wondering how Sarah was feeling. We are thinking about her and miss her here at work. Also, I wanted to share that she has been accepted into the summer work program for CCBMRDD. When you get a chance, please call me and we can discuss how the program works.

And I just got a phone call that they need a copy of her State ID, so it really might just happen.

I have not written to much about our lengthy ordeal with the Cuyahoga County Board of Mental Retardation and Developmental Disabilities(CCMRDD), mostly because my blood pressure rises just thinking about it, but more importantly because I don't want to discourage young families. The fact is: it has not been a pleasant experience.

When Sarah was approaching her 18th birthday, we started a strategic and detailed process for life planning. For an adult in the State of Ohio, that usually involves one of the 88 County Boards of Mental Retardation and Developmental Disabilities - they basically control all Medicaid Waiver monies, job placement programs, and assisted living arrangements. Sarah did receive services from birth to 3 from this entity, which was a fabulous experience. Then the school district took over until graduation. Then it is back to CCBMRDD.

I called intake thinking it would be a simple process. Not so. I completed all the paper work they mailed to us, supplied copies of IEPs, job skill evaluations, and report cards. We continued to get rejection letter, after rejection letter - Does not qualify for services. It was so frustrating. But you have to forge ahead. Talk to everyone you can. I even started going to the Board meetings downtown, to just try to figure the system out.

Finally I asked our school district to complete the entire battery of tests, PT, OT speech evaluations and an IQ test. For years, I had signed off on additional testing when it came time for the multi-factored evaluation renewal because Sarah does not perform well on tests and by the fifth grade we pretty much knew what services she needed, and her teachers had a good handle on her ability. This final time, as a Senior in High School, I needed all the tests completed, and I realized that for the first time I wanted the scores to be low, at least low enough that she qualifies for services.

We finally made it through the initial intake process, just so we could have an OEDI completed and then found out there is a waiting list. We have already been through three Support Administrators(new title for case managers) in less than two years, so to be approved for the summer work program is HUGE in my mind. I'm not even sure exactly what the program entails yet. I guess that it doesn't really matter - WE'RE IN!!!

We've had a few cheerleaders working on our behalf - thank you Sarah K. and Dan H. and anyone else who has been pushing things along. We appreciate your efforts.

It's Time to Go...

...and pack up this beautiful office... (originally posted on 3/3/09)

...with a great view in downtown Cleveland...

...a nice physical environment...

...and a bully of a boss... Seriously, I resigned from my job a few weeks ago. Last Friday was suppose to be my last day, but with Sarah's hospital stay with pneumonia, I wasn't in at all last week. So today is the day I am going to go finish up that last report.
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I had only been in this job for one year. It was what some would consider a dream job: beautiful office on the executive floor, good paycheck, nice co-workers, great benefits. But it lacked the most important thing when you have a child who is medically fragile: flexibility. For the first 25 years of my career, I have had jobs that have allowed some give and take with the hours I worked. I recognize that many jobs require standard hours, however I am not in a field that requires tight hours. Unless that is, you work for someone that is unable or unwilling to permit flextime.
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In the end, there is only one thing that truly matters, the well being of my family. It is a sad day today. I must say good bye to my co-workers at United Way. I started my career here, as a United Way of America intern right out of graduate school. I had some of the most caring and supportive bosses ever, Bill Kerrigan, Ralph Dickerson, Richard Flores and Irv Lauber.
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Irv was my boss when I gave birth to Sarah, during her open heart surgery and the five months that followed in the Cleveland Clinic. God knew what he was doing when he paired the two of us up. Irv was supportive, understanding, nurturing and he just genuinely cared. He became my rock. I'm not sure if I ever told him that. He would sit back in his chair, light up a cigar (yes, we could smoke in our office back then), and provide wise counsel and a shoulder to cry on. A year or so after Sarah stabilized Irv deserted me, he became the President of the Aloha United Way in Honolulu. And I was promoted to his role as a Vice President of the Community Resources Division. He had mighty big shoes to fill, but he taught me well. Over the years, I have always tried to be a supportive supervisor. One like Irv. He was a smart man. He taught me that when one gives, one receives.
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My eyes are misting with tears. Not because I am sad, but rather I have been so truly blessed over the years. I have worked with some of the best. Colleagues that will be a part of my fabric for years to come. I have lived long enough to realize that when one door closes, another opens. And I shall be ready for the next leg of my journey.

Tuesday, February 24, 2009

Requesting Marcos Please

Sarah has not been eating for the past few days. It starts to alarm me when I can see her shoulder blades protruding and her sweet face loosing it's fullness. So when Sarah asked for Marcos Pizza last night I went a running to get it.


We had a small problem. Do you see the hand on the counter? That is her right and dominant hand and she refuses to move it with the IV line in place.
Finally after much coaxing, I convinced her she could indeed feed herself with the left hand.

Right now we are getting the last injection of Rocephin. She decided she was well enough to come downstairs and sit in the big chair for the half hour it takes. I think we are finally turning the corner. This has been a dozy of an episode. We have not seen one quite this bad for several years, but it does give pause to the fact that we have not totally out grown them like I had hoped. I guess Sarah will be susceptible to pneumonia for the rest of her life.

Monday, February 23, 2009

Ugh!!! The R Word spoils the Day

Whenever I have the chance to take photos at a soccer game, I try to get a picture of the closing handshake. It doesn't matter what happened on the field, in the end, both teams acknowledge the efforts of each other. My son being the goalie, leads the line for his team. On this particular day, his team lost. That's when it is harder to lead the line. I tell him he must still put a smile on his face and be a good example for his teammates.

We spent the weekend in Detroit for a tournament. Truthfully, I was torn about going. Sarah has been so sick, still has her IV line and I was extra tired from being up for three nights. Yet, I did not want to disappoint Matt. He loves his soccer and so looks forward to out-of-town tournaments. On Friday afternoon I needed to wait for the delivery of the IV medications and the first visit with the home health nurse, so another family offered to drive Matt so he could participate in the fun of the afternoon. I followed later in the evening. I personally love three hour drives alone. It is so rare that I have that much time just to myself and it is the perfect time for thinking.

The first game was in a sportsplex in a suburb called Fraser. We were staying in Novi, so the drive was a good thirty minutes. The drive over was uneventful. The drive back, well let's just say it was white knuckles all the way. With all the drama back home, I never thought to pay attention to the weather report for eastern Michigan. Had I known it was due for a blizzard, I would have taken the van, as opposed to my little car we refer to as "the roller skate." During the drive, Matt was receiving text messages from his teammates to meet up at Olive Garden. I was working hard to keep the car on the road, so we did not end up smashed into the median wall or down in the ravine on the side of the road like so many others we were observing. Matt was not being particularly sensitive of the road conditions and just wanted to get to the restaurant.

We finally arrive and find several families gathered at one large table: adults at one end, kids circling the other end. How lucky was I that I got to sit closest to the kids:) Lunch arrived and it appeared everyone was as hungry as I was. Ten minutes or so later, the team clown chooses to attempt to entertain the crowd. So he picks up a strand of spaghetti from his teammate's bowl and proceeds to put it into the straw of the kid sitting next to him. Then he pours pepper into the water glass of another and this continues until he takes an entire meatball out of another kids bowl and puts it into a drinking glass. I watch in horror. I know I am already cranky from the car ride, but these are 6th graders. What happened to the teamwork?

I look at my son, who believe me is no saint, to see what he is doing. I can tell by the look on his face, he is as disgusted by it, as I am. And then we hear, "Oh ------, you are such a RETARD." And then it gets repeated a few more times, retard, retard, retard.

I was so stunned, I was speechless. Matt whips his head around and looks at me. I am waiting for him to say something. I am waiting for him to be that line leader after a loosing game. He says nothing. I want to stand up and say something, I'm not exactly sure what, but something. Then I remember a post that another mom did a while back about her son being upset when her husband said something to one of his friends and I thought to myself that I better let Matt handle this on his own. I recognize this is a heavy burden for a twelve year old though, and I realize we have not really discussed how one might go about this. The conversation moves on and it is not mentioned again until...

...we are back at the hotel and a few of the same kids are running down the hall, screaming about a "retarded policeman." I can tell Matt has had enough, so he sulks up to the room with me. Once we are behind closed doors, he and I have a discussion about the subject. And we do a little research online(so glad I lugged the laptop with me). We discover over on Rejenerations that on March 31, 2009 there is going to be an effort to "eradicate the R word." We are planning how we will participate.

Later that evening, Matt tells me he did share with the one person on the team that he spends a lot of time with, to please not use that word. At least, not around him because it hurts him and his family. I'm so proud of him, and tell him so. I just hope I can continue to give him the tools and support he needs to navigate these deep waters. Maybe a few Saturdays at Sibshops could help.

Saturday, February 21, 2009

How I Know Sarah is Better

"Hi Mom"

"Hi Sarah"

"You're not at Disney on Ice are you?"

"No Sarah, I'm in Detroit with Matt for a soccer tournament. Disney on Ice is next weekend in Columbus."

"YEA, I'm going to Disney on Ice!!! Bye Mom."

Friday, February 20, 2009

The Calm before the Storm

I should have known that near perfect ER visit was going to be followed up by something. Sarah had a pretty rough night. The high fever returned which it usually doesn't after two doses of Rocephin. I'm not sure what's going on there. And she really had a very hard time breathing again. By 3:00 a.m. (why does this always happen in the middle of the night?) she was coughing, coughing, and coughing.


Sarah wanted to be sure I posted this picture. She is so proud that she always uses her bucket now.
The good part about coughing is the mucus that follows. During these episodes, Sarah has so much mucus. We refer to it as asthma crude, although a few times doctors have tested for Cystic Fibrosis because the mucus buildup is so similar. The test always comes back negative, but I wish we could figure this out. For years, we have thought we were alone on this path. Since joining the blogging world, we realize we are definitely not alone. There are so many other families whose children with Down syndrome experience the same episodes. We also thought it was because of the Ohio weather, but we now know this is happening in all geographic locations. Another common factor seems to be that the doctors are frequently baffled with the cause and how to treat it. Is it asthma? Copd? Pulmonary hypertension? or is it something unique to children with Down syndrome that has yet to be identified due to lack of research dollars?
Nothing like Daddy to make you feel better. It is 5:30 a.m. and John is heading to the office. A quick detour first. Sarah is demanding apple juice and we are all out. Thank goodness for the 24/7 CVS down the street. Thanks dad.

The supplies for home IV therapy just arrived. They are always packed so neatly. And of course with every box comes the special red, bio hazard container. For a while we had several of these in our garage, full. What do you do with them? You can't put them out on the tree lawn on garbage day. I know you're suppose to take them to a medical facility, like I ever remember to grab them when we are running out in time of crisis.

Home IV supplies have come a long way since we first started doing this. No need for poles and floppy bags anymore. All the medicine is preloaded in this cute little container. I'm sure there is a medical term for them, but we call them "baby bottle pops." You know, that candy the kids like that looks like a little baby bottle, only it's full of colored sugar. Stay tuned, the home health nurse should be here this afternoon. There could be fireworks if she insists on changing the IV lead line. Sarah does hate that. But being in your own bed sure beats the hospital.

Thursday, February 19, 2009

Late Breaking News ~ A Near Perfect ER Visit...

...If there is such a thing, Sarah and I just had an ER visit that is about as good as it gets. Sarah has been having her usual episode of fever, trouble breathing, lack of appetite leading to dehydration and low O2 sats. If you have been following our blog for a while, you know we have been through this a hundred times or more and keep her home until we know she just needs that extra boost of oxygen and IV fluids. So yesterday about 10:00, I knew we were heading in that direction. I try to fit in a quick shower, a good meal, and grab a book from the pile I keep of thoughtless hospital/airport reading material. We hit the doors of the ER at 11:30 a.m..

Over the years I have learned to take my humor where I can get it. One good place is in a packed ER. The fact is, most folks waiting, are not that sick. They think they are dying because their head feels like 1,000 lbs. or they have a stomach virus, but to a triage nurse they are barely on the radar screen. So here we come, not really looking all that bad. I casually put down on the prescreening form O2 sats = 85. Next name called: Sarah. You know all eyes are on us. We just got here and they call us back immediately. They verify my number, actually it is 83. They rush to get a wheelchair and wisk us thru the double doors. That's where the humor comes in, I want to turn and go nanannananana to the rest waiting. Of course I don't, but I could.

So we get into bed number 2 and immediately get hooked up to the oxygen. A few seconds later the ER doc comes in. "Well, if it isn't my favorite patient. Where have you been Miss Sarah? I haven't seen you in a long while" Oh yes, my favorite ER doc is here today. "So mom, tell me what you would like me to do today?" Really? No history, no repeating the same old story, I say to myself. "How about an IV line with some Solumedrol. I suspect pneumonia, so let's start Rocephin too." "Sounds good to me. Hey, did you get that house done. Weren't you living in a hotel the last time I saw you?" "What a great memory. Yes, we are finally back in." How impressed was I that he remembered that.

A little oxygen, a few breathing treatments, and the comfort of Buckeye bear...

And the O2 sat is already up to 95.

A few failed attempts to start the IV line, but finally the charge nurse came in and hit a gusher vein in the hand. Then it's off to x-ray where they confirm pneumonia in the right lower lobe. Hmmm, usually it is the left as that little lung is permanently damaged, but the film does not look awful.

And with that Sarah is sound asleep. Until they mention we are moving to the CDU (Clinical Decision Unit) "OH YES", Sarah pumps out, knowing there are TVs in the rooms over there.

One final set of vitals before heading over to bed 11. Total stay in ER, about two hours!!!

Not only a TV in the room, but snacks too. It is amazing what an improvement Sarah makes with just one bag of saline, a little oxygen and IV steroids. I know we will be spending one night, as that is the protocol of the CDU, so I call John to see if he can relieve me around dinner time to go eat and change my clothes. Once I get back, Sarah and I watch the Disney channel for a few hours and then she tells me to go home.
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"Go home mom, I'm nineteen," Sarah says. Wow, this is HUGE. We have only left Sarah alone in the hospital one other time before when TJ had a concert we did not want to miss, but we knew one of us would be back before bed time. The nurse tonight seems very competent, and has come in a few times to just chat with Sarah. So I go out and ask her if this would be all right with her. I had already observed that there were only two other patients spending the night in the unit, so it did not seem like she would be overly stretched as they sometimes are. So at 1:15 a.m. I walked out of the hospital. It seemed quite strange to me. I was not totally comfortable with it, but I do not want to stand in the way of Sarah asserting her independence.
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I arrived back at 5:45, and was soon after greeted by the Comfort Care Coordinator. When she asked if there was anything she could do for us, I simply replied, "Yes, start the ball rolling to get us out of here after the 10:00 infusion of Rocephin. We will need to have home therapy contacted for three more days of it and we will need to leave with supplies to flush the IV line." She didn't even ask a question. Breakfast arrives and the next thing I know the doctor is coming in to verify Sarah's weight to get the home therapy set up. Wow, I love it. That was as near perfect an ER visit as you can get. On the way out, Sarah is pumping her arm in the air. "I'm free, I'm free," she yells. I'm guessing we are the ER humor at that moment. I guess, what goes around, comes around.
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Almost 24 hours to the minute, Sarah is back home sleeping peacefully on the couch. My greatest concern these days going to the hospital is picking up some nasty secondary virus, so hopefully we got out quick enough before catching anything. Sweet Addy was not so fortunate, as her mom reported yesterday that C-diff has been confirmed. So please say a little prayer for Addy, that the medicine she is now getting will take care of it.
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I just had to post this photo. I don't know whether Sarah is using the remote to hold up her hand as a way of protecting the IV, or just making sure I don't take the controller. Either way, it makes me smile.
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P.S. We have had a few questions about what Sarah's closed trach site looks like. If you click on the first picture in this post to enlarge it you can get a pretty good look. She also has a straight line scar an inch or so above the trach site. That is from an earlier surgery called a Cricoid Split that they tried before doing the trach. The split did not work for Sarah.

Watch out for Splinters

(February 18, 2008) I am not happy. I thought the carpet would be here when we got home from Columbus. It's not here and now I am going to be sleeping on plywood.

My mom told me I have to have slippers on my feet at all times because I could get splinters in my feet if I was not wearing them. Ouch.

OK, maybe this is not so bad. My mom has my bed all fixed up. All the beach towels are on the floor to put my stuff on. It is sorta like being at the beach she says.


My little brother had no problem adjusting. He crashed as soon as we got home. That's because he stays up all night in Columbus watching soccer games on the tv. He can't get that channel here in Cleveland.

Look at him. His head is half off the mattress and he doesn't even care. I hope this doesn't last too long. I can't wait for my new bedroom furniture to come.

Wednesday, February 18, 2009

Mom has finally Cracked Under the Pressure

My dad took Matt and me to Columbus to see TJ. I was so happy to see him. My mom stayed home to get the house ready. Carpet or no carpet, we are moving back in. We are suppose to go home today, but she just called my dad and told him to keep us in Columbus for another day. She can tell you why...

...With news of the carpet being delayed for another two or three weeks, we decided we have to move back into the house. We are so broke, we don't even know how we would pay for one more night. You know how the experts recommend when you start a remodel project to double your anticipated costs, well how about tripling them. I just know I never want to go through this again. It worked out perfect that John could take the kids to stay in Columbus. We are very blessed to have our Buckeye vacation condo and so close to home.

I finished moving everything out of the hotel. I tried not to take too much there, but after three weeks things just have a way of accumulating. Once back at the house, I started a load of laundry and then headed up to sweep and vacuum one more time before I pulled the mattresses upstairs. I kept thinking I was hearing a funny noise, but ignored it. Then all of a sudden I hear a HUGE funny noise coming from downstairs. I run down and here is what I found...

The washing machine outflow hose is not draining properly. The entire extra large size load of water is on the floor and water is running down and behind the freshly painted wall...

...down the hallway...

...and into TJ's bedroom...
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And that's when I LOST IT. Three weeks of hotel living, a child not breathing in the back seat of a car followed by four nights in the hospital, another child being hit by a semi on the freeway, hearing angels, seeing angels, an empty checking account and weeks of little sleep and bad eating, all wrapped up into one phone call to the plumber that was suppose to have fixed this problem in the first place.
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Well, actually the first message wasn't too bad. It was when he called back and left a message telling me he didn't know what I was talking about and it was not his problem. I redialed his number and then I LET LOOSE. Every four letter, five letter and six letter word I had ever heard in my life, came uttering out of my mouth. I think I even made up a few new ones.
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The only problem. I wasn't talking to the plumber. A few years ago, AT & T split our county into two area codes and the invoice from the plumber for supposedly fixing this problem didn't have the area code on it. So I assumed it was the same as ours. Turns out it was not. I was screaming at the TOP OF MY LUNGS at a totally innocent man.
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An hour or so later, I track down the contractor and he comes running over to help cleanup the mess. And fix the wall that is now destroyed. But first he better find the blankedy, blank, plumber.
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And with that, I head to Caribou Coffee for a large Carmel High Rise with extra whip cream. I plop into an overstuffed leather chair in front of the warm fireplace and just sit and stare. I don't even care that I am wearing no makeup, my hair is barely combed, and I'm wearing crappy cleaning clothes. I just dare someone, anyone, to say just. one. word.
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A few lucious sips later, it hits me...if the carpet had not been defective...it would have been down. The brand new carpet could have been soaked. Boy I tell ya, that guardian angel has really been working overtime with the Ely family this month. I say a little prayer before pulling myself out of that big, comfy chair to head back home to keep on cleaning...and call that poor man back on his cell phone and apologize for my awful behavior.