GI Study

I just realized that I never updated about Ethan's overnight GI study from last week. Well, we had to be at the hospital by 11am on Tuesday (8/12). Ethan had to be NPO since midnight. Luckily for me, Ethan doesn't really complain about hunger in the morning, so we just stayed occupied so he didn't focus on the fact that I did not give him breakfast before leaving the house. Noon rolls around and we are still sitting in the surgical waiting room. They tell me that his OR appointment wasn't until noon, so we should be going back anytime. Sometimes, I think that they forget that you have had a child NPO for over 12 hours!

We finally go back to the PACU a little after 12:30pm and he is wheeled away from me,like a big boy, around 1:10pm. I hate, hate, hate it when I can't be with him anymore. But, the OR is pretty firm on the NO MOMMIES ALLOWED policy.

The doctor came out around 1:45pm and said that the endoscopy went well and that he didn't see any damage to his esophagus or intestines. So, that's great news. He then says that his nurse was putting in the scope for the esophageal manometry. I was told originally that this phase would only take about 20 minutes. After that, they would put in the pH probe (with impedance). We have had the pH probe done a couple of times before, so I knew that didn't take long- I expected to be called back to PACU in no more than 40 minutes.

TWO HOURS LATER: "We are ready for you now". (What took so long???) Out of the PACU, Ethan is being wheeled on an adult stretcher. He is obviously drunk on some sedative. He tries and tries to lift his head, only for it to fall back down. It was actually quite comical. But, he did manage to still give his worried Momma a kiss so I knew he was ok.

So what took so long? Apparently, no one read his three-foot thick chart that says that: 1) anesthesia wears off very quickly with Ethan 2) he has the strength of ten men and 3) he magically develops 3rd and 4th arms that will attempt to yank IV's out and probes up his nose out. Yes, he woke up during the procedure, went mad, started yanking IV and probe out, and swinging at nurses. Due to this, everything took longer and they gave Ethan another round of versed to help him "chill".

Once we were upstairs in our lovely hotel, I mean hospital, room, I tried to get Ethan to drink some juice without any luck. I figured that he would be so thirsty/hungry since by that time he had gone about 20 hours without anything to eat or drink. They did have him on an IV drip, so hydration really wasn't much of an issue, but with the issues we have had with him eating lately, I was so afraid that he wasn't going to eat anything for a while. Well, I finally bribed him with pudding and lots of it. He ate FIVE puddings and almost two yogurts by the time he went to bed. His belly was still full by the next morning.

We got up the next day, after a night of NO sleep! Ethan was tossing and turning, all while wrapping his IV line and probe wires around him, so I had to untangle him all night. When he did toss and turn, he was hitting me with his arms, which were still in arm restraints, so I felt like I had been beaten with a log all night long! Anyway, our next test was the stomach emptying scan. We have done this test a couple of times too, so I knew what to expect. Since Ethan won't eat the radioactive egg sandwich, we have to use a can of Pediasure instead. Long story short, after 4 hours, Ethan still has HALF of an 8 oz. can of Pediasure sitting in his belly.

Now, I wondered if he still had a bunch of pudding still in there, but there was no way to tell. The only thing that I know for sure is that his results were similar before, so I will have to assume that the pudding was not an issue for accurate results. Of course, this result was unofficial since it was not the doctor telling me.

We go back in next Tuesday for all of the results. I fear that the doctor is going to tell me that we need to proceed with the nissen with partial pylorectomy. This would mean an automatic G-tube. It is all very discouraging, but if it means better things for Ethan, then we will do it. Ethan is NOT growing. This could be due to the lack of nutrition actually being absorbed into his body. I guess we will just have to wait and see what Mr. GI Doc says next week!

Here's an "R" word for ya!

Special thanks to the Arc of Virginia and the Arc of Northern Virginia, plus Blueberry Shoes Productions for putting together such a great presentation!

Did anyone else notice that the very first picture is little miss cuteness herself, Payton?!?! (that would be Ethan's crush from last year's convention!)

Birthday wishes!

Ok, so I forgot to finish this post yesterday! OOPS!!! Yesterday was an important day for two of our friends: Lynda- my best friend from high school AND Maid of Honor in our wedding, and Mike- Scott's best friend from childhood and Groomsman in our wedding. So, HAPPY (belated) BIRTHDAY to my bff Lynda and Scott's best buddy, Mike! We miss you!!!

And, because I am too lazy right now to get out the wedding album with better pictures of them, this is all I could do..




AND, it was our Shep's birthday too!!! Shep turned TEN yesterday. Our puppy is getting old. Poor thing has hip dysplasia and arthritis, but he is still the lovey puppy that he has always been.

My NEW website!

I now have a new website for Uppercase Living! You don't have to log in with a demonstrator ID or token anymore!!! Now, all you have to do is go to:

My new UCL website, Click here!

Tell your friends!!! I need the business! *muah*

Smiles & Giggles

Ethan LOVES to play with his daddy!




These are the glasses that Specs4Us allowed us to borrow from the NDSC convention. We still have to keep the arm restraints on in order for him to not rip them off. I may have to send back the frames. :-(

Saying goodbye to friends

I met my friend Paula at the credit union. She worked in the same department as I did and we just hit it off. She helped train me and we then started having conversations that would stem into a great friendship. Paula left the credit union to go to another CU and then found herself back with Members, but in a different capacity. Kind of like a different company within a company. I didn't care- we could see each other pretty much every day and meet for lunch regularly.

Paula got married to Andy in November 2005. It was a beautiful wedding and I was so happy to be there for her.

Paula and Andy decided to start their own family last year. Paula asked me if I would be her labor coach. It was such an honor for me to be asked to be such an instrumental part of that moment in her life. I committed to be there for her and Andy in the beginning trimester of her pregancy. I took pictures of her expanding belly on a regular basis and I talked to the baby as well. September 19th, 2007- the day Baby Parks arrived. Witnessing childbirth is an amazing blessing.

Now, Paula and Andy have moved to Louisiana (Andy's homestate). On Friday night, Paula invited me to go to dinner with her and her family. It was great to be able to spend that last bit of time with her before she left yesterday to hit the road to Louisiana. Parks and I snuggled for a bit, which I thorougly enjoyed. It was so hard to say goodbye, but I know that she will be back over the holidays.



We will miss you Moreland Family! Just when Ethan was getting used to having Parks around to play with!!! Be safe, don't forget to call every once in a while! :-)

Funny

Yesterday, as I was sitting on the sofa putting on my make-up, Ethan kept looking at me with the most inquisitive stare. He also inched closer and closer to me to see what was going on. He has always been interested in my make-up bags, which is interesting. Maybe he wonders how that little bag can make Momma go from drab to fab??? LOL!

Anyway, he went to grab my brushes so I told him no. To that I received the wonderful Ethan pout. So, I took the eyeshadow brush and brushed his eyelid with it. He thinks it's hilarious! I even put mascara on him! (Don't tell his Uncle Mike!) Ok, this child will not let me put his glasses on, but he will let me put make-up on him???

I tried to take a picture of his lashes post Maybelline, but he kept moving so you really can't see how long and lucious his lashes were. He really does have fabulous lashes.

Ok ETA: This is the best one that I took.


No worries. We will not be making a habit of putting make-up on Ethan. Both Scott and I found it funny that he was trusting me to put mascara on, but not glasses. I guess he chooses which battles to fight too.

Picking battles

"Pick your battles, child. That type of stupidity, and smallmindedness is global. Focus only on the wonderful light all children bring to this planet. Save your energy for the good you can bring to your own special family and if you have time and room for the rest of the world, then be the helper of your neighbor and friends. For they are really the ones that count. Not the discriminate ignorant ones. The creator will take care of all the injustices of the world. Be patient." by LDV


I thought about this comment. Yes, there is ignorance everywhere. I hope that I can change that one person at a time. Am I going to succeed with everyone? Of course not. Do I need to try for my son and his friends? Absolutely.

I just wish that I didn't have to work so hard within my own family and friend circuit to get the point across. Until you understand the pain that this can eventually cause Ethan, you will never be proud of the work I do or what others in the disability community are doing. And, you will be the ones to continue to use words that I have asked you not to use and see movies that I have asked you not to see. Because, what you fail to realize is that when you support the other side, you turn your back on what should be the most important. I can't tell you to do anything- I can't make you do anything. You have every right to do whatever it is you're going to do.

Yes, I can pick my battles. I choose to fight for the rights of my child. I will forever choose to fight for him over the easy way out of not saying anything at all. Everyone in this journey is not ready to fight- I am.

It's NOT just a word!

Ok, I have found myself sickened by this whole Tropic Thunder movie, and it just continues to get worse. I hope that you read my previous post regarding the movie.

Last Friday, representatives from different disability organizations including the National Down Syndrome Congress, were allowed to an advanced screening of the movie. The report? It's worse than they even anticipated. David Tolleson of the NDSC felt as if he had been assaulted after viewing the film.

The excuse from Hollywood is that the movie is satire. It's about the lengths that shallow actors will go to in order to have a great movie. Oh, really? How ironic, Mr. Stiller. The length that YOU sir have gone to is exactly that. You have chosen to target the audience that -until now- has not fought back.

This film will be, undoubtedly, be seen by millions of people. Millions of people will find it hilarious to call someone who is, by medical definition, retarded: dumb, stupid, idiot, imbecile, and the dumbest mother f**ker that ever lived. There is a scene with Matthew McConaughey that is incredible disturbing. Ben Stiller speaks of wanting to adopt a child and then MMc says, "At least you still have a choice, I have to live with mine" while glancing at a picture of his son who appears to have an intellectual disability.

And, the catch phrase of the movie: Never Go Full Retard. Thank you Ben Stiller. Thank you for writing a phrase that will be repeated in schools all over- among other places. Thank you for encouraging HATEFUL words. The phrase had already found its way onto a T-shirt through CafePress. I, immediately, wrote to CafePress to have the shirt removed and I passed the info along (the shirt is now removed! YAY!) I love to be able to send my beautiful son to school, wondering if some other child, parent, or teacher will utter those words at my son. My son is too young NOW, to understand the pain that this will one day cause him.

"Mommy, why do the kids call me a retard? Why do the other kids always pick on me and call me retarded?" I cry now thinking of it.

RETARDED IS NOT JUST A WORD! IT IS A HATEFUL, HURTFUL, AWFUL WORD USED OUTSIDE OF IT'S DEFINITION IN THIS DAY AND AGE TO DEFINE, STUPID, DUMB, IDIOT...That is NOT my son! My Ethan is FAR from stupid. He is one of the smartest kids I know. And, any of you who know Ethan, know that he is very smart as well.

I ask you, for Ethan, to NOT see this movie. Please do not reward such a film with your money. Send your movie ticket money to something worth while, like the NDSC or the Special Olympics.

Read Chewing the Fat. I sat at the computer and cried when I read this post. I am not exaggerating here. I cried. My heart broke for the young mom. Read it. Dave is great with words.

And, for those of you that are saying that I am being too sensitive...Do YOU have a child with a disability? Do YOU have to think ahead on how to protect your child? Would YOU just sit back if you found out that YOUR child was being picked on? Do YOU find it acceptable to pick on those who can't fight back? Think about it. So, until you are in my shoes, do NOT tell me that I am being too sensitive. This is personal. I am a Mama Bear- I WILL protect my child. Please join me.

Ok, this is the big one- LISTEN UP.

Flyer courtesy of Helen in Washington. Her 15 and 16 year old daughter's created it. Their little brother has Down syndrome and have worked to have the "r" word banned from school. Quite the advocates for their brother, which I think is AWESOME!


Due to my getting ready for date night yesterday, I did not have the chance to post about this sooner. A couple of my friends have, and I am going to kindly refer to their posts because they say it perfectly.

First, my friend McKenna:

This is definitely not the first time I've been disappointed in Hollywood, but I think this may be the first time I am actually HURT by Hollywood. Ben Stiller's new film, Tropic Thunder has crossed the line. DreamWorks Production has agreed to meet with many representatives from disability rights organizations at 5pm Pacific today. To be honest, I don't know what can come from this meeting other than prevention of further damage. I will be very surprised if the scene is not pulled, but the hurt has already been caused. Sticks and stones may break my bones, and WORDS HURT Mr. Ben Stiller, Mr. Robert Downey Jr, Mr. Jack Black, Mr. Tom Cruise, and Hollywood!! My daughter has an intellectual disability and is not able to defend herself because of her age and her cognitive ability. How dare you use her medical diagnosis of mental retardation as an opportunity to put more money in your pockets. Shame on YOU!

The term "mental retardation" is being replaced with intellectual disability because of this misuse. This isn't the first time this has happened. You know those words, "idiot" and "moron." Those once used to belong to people like my little girl as medical diagnosis and we all know what happened to those words. How wrong is it that my daughter needs a new "term" because of the abuse of her medical diagnosis by people of average intelligence? How long until people start taking the new terminology and abusing it as well?

I have an idea....let's just abort every child with a disability before they're born and we won't have this problem! Let's just wipe our world clean of people with Down syndrome, autism, cerebral palsy, etc... and while we're at it, go ahead and take me out of that world, too, because I'm 5'10" tall and that's just not "normal!" Everyone with large noses can have their lives spared as long as they get plastic surgery.

My daughter has to fight against this ridiculous ideology that she is "not normal" and "different" and "lucky she wasn't aborted" every day for the rest of her life and I'm going to do everything I can so she doesn't have to fight against the mockery and "harmless jokes" as well!

Race discrimination is off limits (as it should be!) but discrimination against individuals with intellectual disabilities has a green light. ENOUGH! I have usually excused comments that I hear everyday: "I'm so retarded," "what a retard," because I know in my heart they are not intentionally or purposefully directed at someone with an intellectual disability. Well, enough! Intentional or not, stop it! Use it properly or don't use it at all!

Leave my child, my friend's children, and the many individuals in our world who work harder than any of you alone! ENOUGH!!

And, Amy:

It’s not often that I will offer up an email about something I disagree with. However I am taking the time this afternoon to let you know about a movie that is being released soon. Tropic Thunder with stars such as Ben Stiller, Jack Black, Robert Downey Jr and Tom Cruise will be coming to a theater near us soon and you can be certain with this cast line up and the heavy marketing, your children will want to see it.
What caught my heart was the slogan that Dream Works has chosen to promote this movie. “Once upon a time….There was a Retard” and Ben Stiller is playing an individual with intellectual disabilities. Yeah that is making me laugh pretty hard. I love Ben Stiller and I love Jack Black. I am so sad that they are among a group that has decided to make a movie about those with mental retardation to get laughs.
Once upon a time there was a sweet little girl born. Larkin has a medical diagnosis of mental retardation because of Down syndrome and further brain damage caused by a catastrophic seizure disorder. Even typing that brings this mother to her knees and I can’t even believe I am having to send an email asking that you not support this movie. I can’t believe that our children are still being used as the whipping post for actors and writers to get a laugh. I can’t fight it all the time and mostly I just shrug and move along and turn my back on those who can’t see the sunshine that is right in front of their dark minds.
So this email is for my little girl. The small one who can’t fight it. The small one who fights a war every single day to prove her worth. The bundle of sunshine who will hug you and love you in spite of the ugliness that at times like this surrounds her. I beg you to not see this movie. I beg you to voice your thoughts. I beg you to think of Little Larkin and the millions like her. I have included a link so you can read further. Please feel free to forward this to anyone you think needs to know.


For me, I have been fighting this fight for a while. Even with people I love the most. This is just not acceptable! What in the world do we have to do to make you LISTEN!?!?!?! My son is not your free pass for a laugh.

Great site to visit: Patricia Bauer

A new song for my playlist

An old high school friend had the song on her Myspace. I immediately knew what song it was. It is from the movie "She's Having a Baby"...one of my favorite movies. It's a beautiful song- I have found myself with it on repeat.

This Woman's Work by Kate Bush It's the last song on my playlist right now (you can hear by scrolling down to the playlist on the right side bar).

Date night

Scott's birthday was Sunday, but we weren't able to do anything. I wanted to take him to see The Dark Knight, but we couldn't find a sitter, so we napped instead (which he needed because he had been working close to 12 hour days). Well my friend, Theresa, said that she would watch Ethan last night so we could go see the movie. YAY!

So, I purchased the tickets online- paid the extra $.50 per ticket for the "convenience". I have done this before, walked in with my confirmation and proceeded to the snack bar without any hesitation or problem. Not last night- oh no. That would be TOO easy for a couple who NEVER gets date night.

We walk up to the "ticketmaster", give her the confirmation and she proceeds to have a blank look on her face- she does not know what to do with it. Ok, she's new. No problem. The "manager with a broom" comes over and proceeds to tell us that we have to go over to a kiosk and put in the confirmation number in order to get our tickets. All while the people that did not pay the extra buck, for the convenience at home, have already stood in line outside, got their ticket, and proceeded to the snack bar.

Tell me where the convenience was in that? I called the manager with a broom back over to ask for a dollar voucher to the snack bar. No- sorry can't do that. The fee is not from them. Ok, fine. The tickets are. I'm not asking for the movie ticket back, I am asking for a dollar voucher towards my popcorn. She says, "Ooooohhh, let me see what I can do." Then, she walks out of the forbidden office with Mr. Oh So Professional Looking without a tie, but with gold chain. He says that all the snack bar is inventoried so he can't give the buck. Sorry. I ask if he would rather lose further customers over a buck- he said yes. That's pretty pathetic if you ask me.

BTW. This incidence happened at The Grand Theatre, 5601 University Parkway, Winston-Salem, NC 27105. (336)661-1125

*Forgot to mention that we really enjoyed the movie. I can see how the Joker character really affected Heath Ledger personally. Amazing performance. Also, I have a new found crush on Christian Bale.*

Haircut

Ethan did SO good. Not a peep. Angel boy. I wondered afterwards if him having tubes has helped him with haircuts. He has been WONDERFUL with them since his tubes were put in and was HORRIBLE before. Hmmmmm...

I have a LOT to say...

Get ready!

EMMA IS OUT OF SURGERY!!!

Emma is in the CVICU and doing well! She's still on the vent but did fine coming off the bypass machine. Praise God!! Thank you all for your continued prayers!!!

Click on the link above to go directly to the blog and leave a comment. I know how much Meredith & Mike appreciate hearing from those who have been praying for Emma!

I have such happy tears flowing right now!!! Prayer works peeps...

Remember to pray for Emma!!!

Emma's surgery is in 7 1/2 hours. I added her to the prayer chain at church and I had her prayed for after service this morning. She is on my heart heavily. Her parents just posted a blog entry that brought me to tears. Their faith is amazing.

Read Dedicated. You will also see the most beautiful picture of Emma. The life that has been brought into her body since being brought home to the US is just awesome. The smile, the joy, the love. Amazing girl. Amazing family. Lift them up, please.

Happy Birthday, Scott!!!

Happy birthday!!! Thank you for being the hard-working, loving, dedicated husband and father! We love you!!!

Have ketchup, will eat

Tonight, Ethan was pitching the hugest fit because he was hungry and apparently Momma just wasn't cooking fast enough! Well, then he didn't want to eat it! *eye roll* We added ketchup and, VOILA! We have an eating boy!

EMMA HOPE CORNISH~~ Surgery Monday!!!

PRAY FOR EMMA!!!

Emma's heart surgery has been moved up to Monday due to the severity of her heart defect. You can read all about Emma by clicking on the button to the right of my blog. My friend, Meredith, and her husband Mike, adopted Emma and Micah from Ukraine back in March. Emma's health issues included heart defect gone untreated for five years and pulmonary hypertension among others, but these are the most crucial. Mike & Meredith were first told that surgery was not an option because she would not come out of it and to enjoy the limited amount of time that she has left with us. After many prayers and a T & A surgery, her PH has gotten better enough for surgery! The entire Cornish family could use your prayers for Emma, Mom & Dad, brother and sisters, and the medical team that will be working to repair little Emma's heart. Thank you!!!

A Very Special Family

My friend, Bethany, and her husband Kyle, are in the process of adopting a little girl with Down syndrome from Russia. Bethany and Kyle are already blessed with two beautiful children, Mason & Payton. Payton is a member of our elite Down syndrome club ;-). Ethan LOVES Payton! Last year, while in Kansas City for the NDSC Conference, Ethan followed Payton around while giggling the entire time! It was the cutest thing.


Bethany is holding a raffle for $100 to her online boutique The Polkadot Platypus! I have ordered from The Polkadot Platypus and I have to tell you, I have never had such great service. Super easy, fast shipping, super friendly! For every $5, you receive one raffle ticket. You can purchase your ticket(s)by donating through ChipIn here:


Help bring Addison home! Thank you!!!