Flashback Friday ~ IVIg Infusions

A message from mom: Yesterday Sarah told you about her perfect visit with the doctor. Her medical history has not always been like that. Far from it. Actually I have waited twenty years to hear the doctor say the word "perfect" when referring to her health. And what an incredibly amazing feeling it was. A miracle, truthfully. Such a wonderful birthday gift as we are about to celebrate twenty years...TWO decades of LIFE. What a blessing we have been given.

We have been getting lots of questions lately about the IVIg infusions she used to get, so I thought this would be a good time to let Sarah tell you about it.

Here I am checking in at the front desk with my $5.00 copay. I was like a celebrity at Kaiser. Everybody knew me.

Nurse Barb came out to get me. She always asked me, "Which arm today Sarah." Looks like today I want my left arm.

This is my chart. Look how fat it is. It starts with my recovery from my VSD repair when I was a baby. Then all my hospital stays for RSV, Pneumonia and other respiratory things. It probably has lots of notes about my trach too. But today I am here because I was diagnosed with an immune deficiency disorder which means my body was not making antibodies and you need those to fight infections. I was very, very sick and I was missing so many days of school. Some of the doctors said there was nothing left to do, but Dr. N had an idea.

So I started getting monthly infusions of IVIg also known as human immunuglobulin. Nurse Barb would have everything set up before I got there.

Before they started the infusion, they would take my blood pressure...

...and Dr. N would check me out. If I was sick that day they could not do it.

Haaa, Dr. N let me listen to his heart before we got started.

OUCH!!! I hate the part when the needle goes in. And my left arm was no good today, so I had to get it in my right arm.

I always sat on my moms lap during that part and she would make me feel better.

Then I had to sit and wait. Every twenty minutes they would take my blood pressure...

...and my temperature to make sure I was not having a bad reaction to it.

After about one hour it was time to change to the second bottle. Can you believe it takes several thousand donors to make that little tiny bottle and it costs about $3,000.

Each visit took about four hours. I would get bored. So I would find things to do like read books, sing songs and play with the arm band.

Oh I hate this part too. Nurse Barb has to take the tape off and get rid of the IV line.

Finally, it is almost time to go home. Just one more blood pressure check.

Stickers!!! I love picking out stickers.

One last stop at the pharmacy to pick up some special medicine to numb my arm for next time. "See ya next month," I would say.

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Summary by mom: Did it work? I get asked that question a lot. The fact is, Sarah was at times on the brink of death. She was no longer responding to antibiotics and her lungs were in very bad shape. She certainly improved during the two years she was receiving it and when the FDA recalled the product due to a contamination and she was no longer able to get it, she deteriorated rapidly. So I would have to conclude that it certainly helped. We did not see any side effects other than her poor arm being so sore following treatment, so we tried to alternate arms if her veins cooperated. I certainly never thought as I sat with my arms and legs tightly wrapped around her as they stuck her arm each month, that ten years later I would hear "perfect" to describe her health. If IVIg helped us get to that day I would do it again, in a heartbeat.

Perfect, Perfect, Perfect

What do you think of this beautiful gown I am wearing? It even comes with a stylish belt:)

So here I am at Dr. H's for my 20 year physical. I did not really need it because I am going to be 20 soon, I needed it for my horse riding program and my mom needed the papers filled out for the Probate Court so she can continue to be my guardian.

I climbed up on the table waiting for Dr. H to come in. I know she is going to be so surprised when she sees me. Sure enough, "Well Miss Sarah, look at you!!!" Then she turns on the computer and looks at a few things. "Is it true you weigh only 108 pounds today?" "Yeeesssss," I told her with a big grin. "What did you do, go to boot camp?" I laughed at that because that seemed funny to me. "No, eating healthy," I told her. "My, my, you are just perfect."

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Then she read from the screen,

Height 5'

Weight 108 ~ perfect

Body Mass Index 21 ~ perfect

Blood Pressure 106/60 ~ perfect

Pulse 70 ~ perfect

Cholesterol 144 ~ perfect

HDL 52 ~ perfect

LDL 78 ~ perfect

WBC 4.7 ~ perfect

Platelets 207 ~ perfect

TSH 4.0 ~ perfect

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She looked in my throat and my ears. Perfect. Then she listened to my lungs. "Sarah, not a crackle or a wheeze today. You are just perfect. Perfect, perfect, perfect. I wish all my patients were just like you."

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And then she told me I could get dressed. That was my most perfect doctors visit ever:)

A Letter from the President

This letter was e-mailed to me today. Did you get one? What do you think? My mom is most excited to see the no discrimination for pre-existing conditions. Did you know that many plans use Down syndrome as a pre-existing condition? And therefore deny services. Hmm....

Dear Friend,

If you’re like most Americans, there’s nothing more important to you about health care than peace of mind. Given the status quo, that’s understandable. The current system often denies insurance due to pre-existing conditions, charges steep out-of-pocket fees – and sometimes isn’t there at all if you become seriously ill. It’s time to fix our unsustainable insurance system and create a new foundation for health care security. That means guaranteeing your health care security and stability with eight basic consumer protections:

No discrimination for pre-existing conditions
No exorbitant out-of-pocket expenses, deductibles or co-pays
No cost-sharing for preventive care
No dropping of coverage if you become seriously ill
No gender discrimination
No annual or lifetime caps on coverage
Extended coverage for young adults

Guaranteed insurance renewal so long as premiums are paid Learn more about these consumer protections at Whitehouse.gov. Over the next month there is going to be an avalanche of misinformation and scare tactics from those seeking to perpetuate the status quo. But we know the cost of doing nothing is too high. Health care costs will double over the next decade, millions more will become uninsured, and state and local governments will go bankrupt. It’s time to act and reform health insurance, drive down costs and guarantee the health care security and stability of every American family. You can help by putting these core principles of reform in the hands of your friends, your family, and the rest of your social network.

Thank you,

Barack Obama

This email was sent to sarahely8989@yahoo.com Unsubscribe Privacy Policy Please do not reply to this email. Contact the White House The White House • 1600 Pennsylvania Ave NW • Washington, DC 20500 • 202-456-1111

New friends in my Backyard

Hey, look who's here.

She went into statue pose when my mom opened the screen door.

I think Bambi wants to play.

Here comes Bambi #2. I want to go out and feed them but my mom says we are not suppose to because we live in the city.

I guess they are done playing with my swingset. Off to the next house they go.

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A thought from mom: Friend or Foe? While Sarah was ohhing and ahhing and sweet talking to the little baby deer, Bambi as she calls them, all I could think about was the 75 year old woman who hit one of these fawns with a shovel a few weeks ago just down the street from our house. Her actions resulted in it's death and her being served with animal cruetly charges. The story got national coverage and a huge out cry from local folks as well as much media attention from animal rights groups. You can read about it HERE.

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The sad thing is we live in the city, a first ring suburb. The few green spaces we had just a few years ago have been taken over by new shopping destinations and housing developments. It does cause a shift in the natural habitat.

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Just last week three adults, deer that is, came right up to me as I was unloading groceries out of my car in the driveway. It was a little frightening, especially knowing they are hungry, so I climbed back in my car and waited for them to leave. After what seemed like hours, probably less than five minutes, they started to s...l...o...w...l...y... mossy on down the cement street. I yelled at them, "Hey, next time maybe you could just follow me to the grocery store:)"

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I wonder what Sarah would do if she encountered them while she is home alone? I try to not think about that kind of thing too much or I would never be able to let her grow up, never let her be on her own. And my point is that would be worse than encountering three deer in the front yard, even if one had antlers...B...I...G...antlers.

Special Needs Advocate Blog Award

JRS over at ReJenerationS created an awesome blog award. Here is what she has to say about it...

Introducing the GOLDEN ADVOCATE. The Golden Advocate Award is given to bloggers who have gone above and beyond to educate and advocate for people who have special needs. It was created in honor of my daughter Sophia who has Down syndrome, but it is not limited to the Ds community as all special needs count.

The recipient may be a self advocate or a loved one, caregiver, therapist, teacher, community member, etc. to a person with special needs.The recipient of this award has demonstrated courage, strength, and wisdom, and has used their blog to show the world how amazing people with special needs truly are. Recipients of this award do not shy away from speaking out against ignorance, cruelty, or injustices related to people with special needs. They can sometimes be found making phone calls to elected officials, signing petitions, attending rallies, and blogging about issues that are important to our community.

On most days they educate by sharing their everyday experiences with us, allowing us to see how people with special needs are more alike than different. They wear their advocacy hat well and the world is a more beautiful, diverse, and inclusive place because they are in it.

To accept this award:Simply accept it with the knowledge that your work is appreciated. Feel free to post it on your blog, or not. It's up to you with no strings attached.To nominate a blogger for this award or to pass it on if you have received it:Use the image, guidelines, and description listed here. Briefly summarize why the blogger deserves this award, post a link to their blog, and notify them that they have won. Link back to this post so that we can track how far it travels. Please limit your nominations to just 1 or 2 deserving bloggers.

The very 1st Golden Advocate goes to:drum roll please Sarah of Class of 2008. Sarah is a self advocate who has brought such joy into our lives with her blog. I tune in eagerly for every post as Sarah gives me hope, encouragement, and excitement for my daughter Sophia's future. This post in particular makes me so proud of her and the way she handles herself. Sarah, you are an inspiration and wonderful role model!

First, I am honored to be receiving this award. This is very exciting to me. My mom and I have been talking about who we should pass this to. There are many very deserving people. However, there is one blog that we have been following for a while that has been sharing lots of good messages and has been very inspirational. This family has been willing to speak out on behalf of the Down syndrome community in a big way. They even allowed a reporter to come into their lives and share their story with a paper in Cincinnati, Ohio. Their story is a little different because it is about a baby that is not born yet. His name will be Elijah or Eli for short. His mom and dad have been sharing their story from the day they found out that Eli will have Down syndrome. So I nominate Beth and Scott who are telling the world that there is Hope for Elijah.

Sibling Sunday

The night the Cubs won the Championship. Matt was selected to the All-Star team and he won first place in the 2009 SE Majors Home Run Derby contest. I am so proud of my little brother. Yea, Matt.

Sometimes pictures are Deceiving

Do you think I'm sick?

Nope, I'm fine. I just have sunburned eyelids. Don't ask me how. Plus I'm getting my nightime breathing treatment. Everynight before I go to sleep I get one dose of Albuterol to keep my lungs clear.



Just to prove I'm feeling fine, I told my mom to tape me being silly.

Flashback Friday

You guessed it...chicken pox.

Yahoo!!! I've got unlimited Minutes and Texting

My little brother and I had nothing to do today, so we were going to go swimming. Except it is cold and raining. So we decided to run errands with my mom. My brother has smashed his cell phone so many times he cannot send or see text messages. For some people that would be no big deal, but that is the only way Matt communicates. So...he has been miserable and lost the last few days.

We were close to the Alltel store so my mom said we should go in and check out what he could do. Lucky for him his plan was up so he could get a new phone. Then the guy said that we could get another phone for free. FREE??? Still I replied, "No thank you." I don't really like those pull out keyboards so much. But then he said I could get the flip phone instead. REALLY???

So I came a running over to the counter. He showed me all the neat features, like it is also a Mp3 player. cool. and the number keys are really big. I LOVE it. This guy just kept talking to me. I think he thought I was cute or something. He was soooo nice.

Then I picked out a cool cover for it. And so the guy put it on for me.

Matt and I were waiting for our phones to ring. I have the same number as my old phone that did not work anymore.

Well, I think that worked out better than swimming. We had fun in there.

Do you see why I picked a green cover? It matches my green computer and green mouse just perfect.

Folks, do You believe in Miracles...

Ten Years Ago Today...

...we got all dressed up and drove to Massillon for my Grandpa's retirement party.


Do you see me peeking up over the sign they made for him?

He took me around and introduced me to all the people he worked with.

I never left his side. Me and Grandpa are tight like that.

After dinner they gave him some presents. I thought that was pretty cool.

Then he had to give a speech. He thanked everyone for coming and for the nice gifts and then he said, "Folks, do you believe in miracles? If not, you should." Then he said, "Sarah stand up here and let everyone see you." So I climbed up on the chair.

"My granddaughter is here with us only because of prayers and a few miracles. She is a little fighter and that is why I am retiring now, so I can spend more time with my grandchildren." Wow, I have a special Grandpa. I am a lucky girl.

I Scream, You Scream...

Ten Years Ago Today...

...We all SCREAM for...


... an out?

...this game to be over?

...ICE CREAM...

I loved when our team went for ice cream. It was so much fun.

And I ran into my good friend Kim. She just got her hair cut. I love it.

Like Father, Like Daughter

Did you know I graduated from the same high school my dad did? Yep, I'm the Class of 2008 and he is the Class of 1979 from Charles F. Brush High School.

Last night the Class of 1979 had their 30th Reunion. Here is my mom and dad getting ready to leave. TJ and Julie stayed with me while they were gone.

Look how cute their name tags were. I think my dad still looks just like his senior picture. So did everybody last night.

Here is a picture of the guys from the soccer team. My dad was the goalie.

Here is my dad and mom with our old neighbor Jeannie. She graduated with my dad but she lives in Youngstown now. I wonder if I will go to a reunion some day? I think my mom and dad had fun.

RIP Dear Neighbor and Friend

In loving memory of our dear neighbor and friend. Please keep John's wife and children in your prayers. They have all been so good to our Sarah over the years. Our hearts are breaking for this dear family as they try to understand how a routine operation could go so horribly wrong and they must now put their lives back together without their husband and father.