Pictures from home

Scott, Ethan, and I went up to Mount Airy yesterday to check out the downtown district. Scott is hoping to find a shop that will carry his items for sale. Mt. Airy is known for being home to Mayberry- you know, Andy Griffith and Ron Howard (Opie)? Lots of tourists come through the town just to visit Mayberry. I find this very humorous. Oh well, it's still a nice town that may just have the tourist market for Scott's rustic items.

We went into the Main Oak Emporium at the suggestion of a friend. Three stories of fun items. I loved the set up. It just didn't have the feel of what we are looking for when it comes to selling Scott's stuff. PLUS, they are very expensive to lease from.

Anywho, on the 2nd floor, there was a booth with framed pictures and there were a few that caught my eye...

Mariposa



This one because we always see or hear Fresno daily. Yesterday was no exception...not sure if you can see it or not (it's in blue in the lower left hand corner).


Another Fresno picture

This one is for Christine. Her family just brought a little boy from Ukraine into their lives by way of adoption. These pictures are really hard to see, but they are from Reedley.



And for those of you wondering what these places are...they are all California towns.

* Mariposa is my hometown
* Fresno is a city an hour from Merced, the city we used to live before moving to NC
* Reedley is city in Fresno County where the beautiful Reed Family lives.

I didn't see any Atwater/Merced/Livingston signs. We looked. There was also one from Exeter, but we didn't have a direct affiliation with that town, so I didn't take the picture.

V8

I decided to get Ethan some V8 juice to try. I don't want to give him a lot of it because of his reflux, but I thought some extra vegetable vitamins every now and again couldn't hurt, right? So, this is what Ethan thinks of V8.



Oh, and he HAS to bang his cup on the table before he drinks. He even has to bang it a few times throughout. This is a random habit that just came about within the past month. We have not idea why he does it, but he insists on it.

School

Tomorrow is Ethan's first day back at school! YAY! I know that he is going to be SO excited! We went to Open House last week and Ms. Mary rearranged the classroom and I think that Ethan is going to make some great gains this year! His classroom size has gone from 6 to 3, but that will likely be a good thing for Boog's since he will have much more one on one time with the teachers.

I need to clean his- I mean, the school's- wheelchair before tomorrow. It is all yucked up from Ethan slobbering all over it. Shhhh, don't tell his PT, Della!

I hope to get some pictures tomorrow too.

Playdates

I drove Ethan to Raleigh on Friday so he could have a playdate with PJ. I "met" PJ's mommy, Kathy, online through our Down syndrome support site. Kathy knew prenatally that PJ would have Ds and at the time they lived in TN, so I hoped to meet one day. Then, they moved to NC! Well, surely getting together would have come sooner than this! Oh well, I decided that it was time for a get together!

I had a meeting in Greensboro for Uppercase Living and just decided to keep going on to Raleigh. Heck, it's only another hour and a half!

We met at Pullen Park. This was a really nice park and very kid friendly. There was a train, a carousel, swings, slides, water boats, peddle boats...lots of stuff to do! We both had tired boys, but we rode the train, carousel and swings.

Ethan would reach his hands out to PJ, it was really cute! PJ was so flippin' cute! His smile should be on billboards! It was so great to take the initiative to finally meet up, especially with school starting!

I will post pictures as soon as I upload them! Thanks Kathy, Daniel, Rebecca, and PJ for the playdate!

Ok- I did not take many pictures! WHAT?!?!? That is SO not like me. Next time...until then, here's a small montage.

Make photo slide shows at www.OneTrueMedia.com

Just curious

If it's just a word, then why do you insist on using it? Surely there is another word that you could use in its place.

Shep's Playdate!

Joey's Visit

I brought Karen's new dog, Joey, home with me yesterday to play with Ethan and Shep. Ethan laughed at him from a distance and Shep just wanted to be left alone. He is old, after all. LOL!

Be A Fan

Happy Birthday, Kristopher!

Today is my nephew's 2nd birthday. He is such an adorable little boy. We hope that he has a wonderful day!!! Lots of love, Aunt Kristen, Uncle Scott & Cousin Ethan

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!!!

My First Q & A... should be short.

Do you need to do bloodwork?
Well, we do bloodwork all the time to make sure his leukemia is still in check. But, we also did another round to check his thyroid, liver, and some other levels. Everything was normal except that his testosterone was low, but the endocrinologist says that it was fine for his age.

What does the doctor think?
Who knows. This is a doctor that I rarely like. I hate her bedside manner. This past appointment, she looked at me and said "Do I need to be here? Can "D" take care of everything for you?" It just really ticked me off. Anyway, "D" has this theory that he is gearing up for a huge growth spurt. I happen to think that theory is grasping at straws. I think that we need to do another sleep study...especially after going to Boston. We shall see.

Is he on supplements?
No. But, I would like more information please. Thank you, Bethany!

See, I said that would be short. LOL!

Still not growing

I took Ethan in to the developmental pediatrician yesterday to do a weight/height check. Ethan has gained a couple of pounds over the past few months, but has only grown .4 of a centimeter! ***eye roll*** They don't know why Ethan is not growing. I have a few ideas, but we will have to wait for those tests to be ordered. I mean, Ethan does not come from a short family. Mine especially! If anything, he should be on the taller end of the Down syndrome growth chart, instead he is in the 5th percentile!!!

On another note, Ethan's new AFO's came in on Tuesday. He is adjusting to them quite well! He walked, one-handed, in to the doctor's office yesterday and they were all very impressed with his improvement!

After the appointment, I took Ethan to a birthday party. He had a good time, especially since he got to see his favorite Ms. Mary! He really misses her since school has been out. I am sure that after all the therapies and appointments that I have been dragging him to all summer, he will be more than ready to return to school!!!

Tagged again! :-)

My friend, Alyssa, over at What's Happenin' at the Hoover's tagged me a LONG time ago to do this and I forgot. Sorry Alyssa! Ok, so she says that I need to list 6 things about ME.

1. I have man hands & feet
2. I am the "white sheep" of my family. Only blonde hair/blue eyed child out of 4.
3. I do not tan, therefore, I do not attempt to.
4. I want another baby.
5. I love pineapple even though it makes my tongue swell.
6. I used to have a chipped front tooth. My older sister, Kim, was making me laugh while our parents fixed a flat tire and I dropped my head- mouth wide open- into the front door window that I did not realize was open. An unforgettable moment for sure.

Again, not good at the tagging...feel free to list 6 things about yourself on your blog and let me know! :-)

I've been tagged!

My dear friend, Christina, over at Kwisteena's Kwaziness tagged me to list 6 things that describe my life. Like her, I am not sure 6 is enough! Let's give it a whirl...

1. Blessed
2. Stressed
3. Random
4. Giving
5. Busy
6. Full of change

I am going to break the rules and not tag anyone because I am not good at that. SORRY. BUT, if you so desire, please do this yourself on your blog and let me know about it! :-)

Five Guys vs. In-N-Out

VS.











No question. I would probably take Five Guys' fries over In-N-Out's, but not the burger. FG's burger was better than most, but it will not take away my I-N-O cravings that only a trip home to California can fix.

Africa

Some of you may have gotten an e-mail from me. It went out in masses. :-) If you did, welcome to the repeat version for those who didn't get my e-mail. Of course, this version will be much shorter...maybe.

I have joined the missions team to travel to Kitale, Kenya, Africa in October. If you know me, your jaw is probably on the floor right now. Believe me, my own jaw was on the floor! But, I truly believe that God is calling me to work in Africa during this trip. I can not tell you all the "signs" that I have been given. I have been given amazing support already- I am truly in awe of how God is providing.

So, I will be traveling October 8-18. I will spend my 10th wedding anniversary on a plane. It took me a long time to commit to the trip even though I knew in my heart that I was going- God told me so. We will be going to the Challenge Farm in Kitale, Kenya. I highly encourage you to visit the website and watch the video at the top of the page.

I will be raising money from now until the trip- hopefully having my full amount in a while before we leave. You will notice a ChipIn link on the side. If you wish to sponsor me, THANK YOU! You can do so a few different ways.

* You can use the secure ChipIn site and $ will go directly to my paypal account
* You can send a check directly to my church (with my name- Kristen Faulkner- in the memo): River Oaks Community Church, 1855 Lewisville Clemmons Rd., Clemmons, NC 27012 {Phone: (336) 766-0033}

Money sent directly to the church is actually how I would suggest because it is tax-deductible and will be receipted. I can send you a receipt, but I am not sure if the IRS would accept it as a deduction. I will have to check on that...

Lastly, more than anything...PRAY, PRAY, PRAY for myself, the team, our families, and for those already living on the farm. This is, by far, the most important request. Thank you so much for everyone's support. Much love to all.

More fires in Mariposa

I saw a news clip on CNN or something like that saying that there was a fire near Yosemite. Now, that is a pretty large scale of where exactly the fire could be, but sure enough, it's in Mariposa again. This time, it's not near my parent's house, but my grandparents house. The fire has 0% containment and over 16000 (that's a jump from the original 1000 that I read) acres burned. Lots of people have been evacuated already. Please keep everyone around the fires in your prayers, including the firefighters who brave the flames.

http://cbs13.com/local/mariposa.county.fire.2.780798.html

Dr. Randy Pausch

Passed away today. An amazing and inspirational man. His "Last Lecture" is well worth the watch.

My lil' nudist

This morning, I woke up to the most beautiful sound of giggles. I come around the corner to Ethan's room, and I find him standing at his gate all proud of himself and his nakedness! He has always loved not having clothes on, but this is a first! Actually taking off the diaper...oh my goodness!

If I had never...

If I had never worked for Bank of America, I would have never applied at Patelco.
If I had never worked for Patelco, I would have never met Theresa.
If I had never met Theresa, I would not have known of TSCS in NC.
If I had never known of TSCS in NC, I would never have moved.
If I had never moved, I would have never attended the NDSC conference in Atlanta.
If I had never attended the NDSC conference in Atlanta, I would have never found out about Downsyn.
If I had never found out about Downsyn, I would not have the support of so many across the country!
If I had never found out about Downsyn, I would not have some of my best friends for life.


If I had never had Ethan, I would not have moved.
If I had never moved, I would not be blessed with how God has utilized me with others.
If I had never moved, I would have never met Karen and Olivia. I feel a part of my heart would have always been empty if I had never been able to love Miss O.

If I had never had Ethan, my heart may not be as full of compassion as it is.
If I had never had Ethan, I may not have become the advocate that I am.
If I had never had Ethan, I may not have ever known what a hero really is.

Someone very close to me once told me that I had depressing friends. On the contrary. I have awesome, amazing, strong friends. They are Mothers who never back down from a fight. They are Mothers who do not see the disability in their child, but their ABILITY and CAPABILITY. I am honored to have the friends I do. I hope that I am as good a friend to them as they are to me.

Therapy & Tests to come

Today was Ethan's last round of VitalStim therapy...we hope. He will have a modified swallow study on Friday to see if it worked.

Ethan's private PT has been going well and he will start private OT next week. He is going to HATE me by the end of this summer!!!

E also had a GI appointment yesterday and he will take part in an overnight study to measure the correlation between weakened swallow function and reflux. I do not feel that Ethan's reflux is under control right now and he's on max meds. The study consists of an endoscopy, PH probe, stomach emptying, and another test that measures the strength of the swallow down the esophagus. Fun times. I don't know when this study will be quite yet, but hopefully soon.

Ethan also needs another sleep study and a full neurological/orthopedist workup. This comes from advise given from two of the most well-renowned physician's who work with persons with Ds. Fun times.

Sayreville, NJ

I just noticed that someone in Sayreville, New Jersey is visiting my blog. Jon Bon Jovi is from Sayreville. Hmmmm...ok, Jon. I am here, waiting for your call. ;-)

Back from Boston

Ok, well I have been home from Boston since Sunday night, but I just haven't had the time or energy to post! My friend, Lisa, and I left on Thursday afternoon for Raleigh. We would have about an hour to deplane, get to the hotel, and move on to the Garden for Bon Jovi. Well, we had an amazing trip up and ended up landing 20 minutes early!!! I had the flight attendant thank the pilot for me- I did have a date with JBJ after all!

The concert was fabulous! Bon Jovi really can't do any wrong- except when JBJ goes out into a section of the audience and lets others fondle him all while having total disregard for how that makes me feel! LOL!



The return back to the hotel was a bit of an adventure. Let's just say that jails should not have full length windows so men can do things where you can see and that $11 cab fare is not that bad! We tried to save money, saw things that we shouldn't have, experienced the subway system, and got back to the hotel an hour and half after we left the Garden. Fun times. HAHA.

Boston is absolutely beautiful! I loved it! It is a very clean city with friendly people. The history there is awesome too. I was able to go out on a Charles River boat tour with some of my friends from Downsyn and saw Harvard, Boston University, and MIT. The harbor is pretty too. I met my step-grandmother and step-aunt while there too. They live about 20 minutes outside of the city and came in to take me to dinner. It was a such a treat for me to be able to spend that time with them and finally meet my dad's sister, Robin. I may have asked too many questions, but it was my one chance to find out more about my dad since he never shares, nor seems to care to want to. I wish that I had just one more day to actually do some sightseeing, but I was there for the NDSC conference.

I came away with some great information and even greater friends! I "talk" to some of these friends all the time online and then to be able to actually meet them and have a great time was just the added bonus!


Bye-bye Boston! I hope to see you again soon! LOL! I miss all my Downsyn friends already! Why does the US have to be so large??? :-(

The view from my hotel room:





I could not stop taking pictures from the air! It was all so beautiful!

Things to ponder

Yesterday, I stopped by Olivia's pediatrician's office to say hello. Weird? Not so much when we were in a very close position a few months back. If she were accepting new patients, I would likely switch Ethan over! She is amazing. Anywho, when I got to the office, I told the receptionist that I would like to say hello to Dr. Heinrich. She asked me who I was and I just said, "Just tell her that Nurse One is here". She said, oookkkk. Like, whatever. Well, within a minute, Dr. H was out in the lobby giving me and Ethan a big hug. We visited for a few minutes and she then again asked me if I was going to nursing school. Dr. H was a driving force behind me thinking about applying the last time. She offered me recommendations and everything. Now, she thinks that I should just go to PA school! WHAT!?!? WOW! I am not sure about that one, but you never know. But, she did say that she would help me with answers for tests. That would be awesome! We'll see...pondering.

After we left Dr. H's office, we went to Sam's Club. Karen called me and said, "Where ya goin'?". She was behind me! Too funny. She has been very sick this week and had to go get her allergy shot. I told her to go home and go back to bed- I would check on her later.

Ethan and I met my friend for lunch. Her mother, sister, son, and niece also joined at the every so scrumptious Olive Garden. As we were close to wrapping up lunch, I look across the dining area to see a woman leaning over in her chair with her head resting on her knees. She was alone. Something was wrong and no one was helping her. I asked my friend to watch Ethan for me and I went over to help the woman. She was feeling faint and was sweaty/clammy all over. She had just had some blood drawn and was told by the doctor that she was dehydrated. So, I think that she was anemic, dehydrated, or had low blood sugar (she hadn't eaten yet)- or a combo of the three. The manager got me some orange juice to give her and a cold towel to put around her neck. She was on her knees on the floor by this time with her head down still, so I was lifting her chin enough to get the oj in her. I also continued to fan her with a folder that she had. She ended up being fine after a little TLC. Numerous people came up to me and asked me if I was her nurse (LOL)- um, no. Just someone enjoying some soup, salad and breadsticks!

My bill came and I paid with cash. The manager came back up to me and said that he would like to take care of my lunch to thank me for being a good samaritan. Aw. I about cried. There are still rewards for good deeds- even though that is not why we should do good deeds.

Belated Birthdays!

Happy belated birthday to my friend, Darlene!!! We are exactly 6 months apart- her birthday was July 2nd and mine is January 2nd. So, really- happy belated HALF birthday to ME! LOL! I tried to call the girl, but she is too busy for me anymore...sad, sad. J/K...She recently opened her own boutique in Atwater and it is going very well. I love you Dar Dar.

Happy belated birthday to my little cousin who I have always called my neice, Mallory Jordan!!! Hi honey. I am sorry that I didn't get to call you the other day. We have been VERY busy. We love you and hope that you had a wonderful birthday!!! *muah*

Happy belated birthday to my Aunt Bitsy yesterday!!! I also believe that my cousin's little girl, Keira, celebrated her birthday yesterday too! Birthdays, birthdays everywhere!!!

I know my Aunt Shell was at the end of June too! Uncle Cobb is at the end of July. Happy birthday to all. WE LOVE YOU!!! *****CORRECTION: Aunt Shell's b-day is the end of July and Uncle Cobb's is the end of August. They are the same age for one month. I just had them a month off---my bad!*****

Upcoming: Yvonne, July 6 HAPPY BIRTHDAY!!!
Jen, July 7 HAPPY BIRTHDAY!!! (I am hoping that she can come to Boston next week to see me!!! Hoping, hoping, hoping!)

Ok, now I am probably forgetting someone ultra-important. SORRY if I am!!! *muah*

Happy 4th of July!

Have a great 4th of July!!! We are going over to Theresa's later to bbq and then we are off to the Lewisville fireworks show.

The Oliver Fire

There is a major fire right by my parents house in Ponderosa Basin (Mariposa). They have been on pre-evac orders since Monday and 15 minute warning since Wednesday. I talked with Kamrin the other morning as I woke her up and she said that it was just really smoky- she even dreamt of smelling smoke! This is not just over the mountain for my parents- it is in the back yard, so to speak. Please pray for my parents home as well as their neighbors and the firefighters that are working so hard to contain the fire. I think that the firefighters pretty much have it under control now. I haven't heard anything new from my mom and the news hasn't updated since Tuesday.

As I searched the internet and Fresno news the other day, I found a video.

Who are the first people that I see??? Yep, that would be my parents! Mommy never passes up a good opportunity for interview!!! LOL!

Click here to see (Click on the "Watch the Video" link within the article)

Ok, for whatever reason, the link won't work... here it is: http://www. ksee24. com/news/local/20705934. html

NYC

I know it's been a while. I haven't felt like writing. I went to NYC last week to help out my friend. Her son had phase I out of III brain surgery. I was not there to see the city, I was there for my friend. But, I was able to see some of the city- ok all technically, from the top of the Empire State Building. I probably could have stayed up there all day. I love things like that! I could spend hours up at the Space Needle too, even though I have been up there numerous times.

I was able to meet up with a couple of Downsyn friends. Sara brought her two girls to the ESB and we were able to visit there. I met up with Maureen in the city on Friday and we walked to dinner at California Pizza. Yes, this California girl had never had California Pizza before- I had to go to New York for it! Boy, was it yummy though!!! After a bottle of wine and LOTS of good food, we came back outside to rain. So, we walked back to Maureen's office and grabbed some umbrellas only to find the rain had stopped by the time we left the building. Go figure.

Maureen and I talked for a long time, even after we reached the hospital/apartment entrance again. I felt so bad that she left me after 2 am to walk by herself back up to Penn Station. It's a good 25 minute walk in the middle of the night alone. Really though, I never felt like I wasn't safe. I don't know if things have changed post 9/11, but I found the city to be clean and (mostly) friendly. It's a bit faster paced than what I am used to, but I could certainly get used to it. This mountain girl is adaptable! LOL!

Saturday, Maureen had invited me out to her home on Long Island. She also offered to take me to the airport. That saved me quite a bit of money on cab fare Sunday. I hated to leave my friend and her family, especially because of the circumstances. But, everyone would be so proud of me! I hailed a taxi like a pro! I got on the LIRR (Long Island Rail Road) all by myself! I fought with a deli man and held my own. (NO SOUP FOR YOU!!!) I found that the movie scenes with a whole bunch of mom's at a city park talking about if there infant is on the waiting list for such and such preschool is TRUE! No lie. I took the kids out one day and found a nice park for the kids to play at. No dads. Only moms and nannies.

I did get a few pictures, but my camera's sensor is going out and there are a bunch of lines going through them. That ticks me off, but I really can't afford to get a new one. I am really going to have to figure something out before Boston in a couple of weeks though!!!

Before I end this, I have to share the coolest part of my NYC trip. After "F" was out of surgery and moved to the PICU, I went in to visit. The PICU at NYU is four beds to a room. I looked around for a minute and I see two stickers on his cabinet door...Cinderella and Belle- Olivia's favorite Disney princesses! OLIVIA WAS WITH US IN P3!!! Coincidence? I think not.

Grammar Grrrr's

Ok, I do not proclaim to be an English guru or anything, but there are a few things that just make me cringe. I may add to this over time, but here it goes...

YOU'RE = YOU ARE (You're driving me crazy!)
YOUR = YOUR (Your shirt is blue.)

LOOSE = LOOSE, like GOOSE (I am wearing LOOSE clothing.)
LOSE = LOSE, like OOZE (We are not going to LOSE the game today.)

When people title pictures as xxxx and I. I guess this rule depends on what school you went to because my teachers always taught me that "I" is only used when it can be used alone. You don't say "this is I", you say, "this is me". So, I naturally think that those pictures should say Me and Ethan or Ethan and Me because either one is fine alone. I had submitted a picture of Ethan and me to a lady putting together an online photo album for Mother's Day last year. I had titled it "Ethan and Me at the Buddy Walk". When I saw the picture, the label had changed to "Ethan and I". (eeeeekkk) I wrote the lady and kindly asked her to change it back, she refused and instead sent me links to why her way was proper and then proceeded to remove the picture from her album altogether. Quite rude actually. Anyway, this one is still debatable I suppose. Amazing what you remember from school 20 years ago.

Vent over...for now.

Emotions

Ethan had VitalStim Therapy today. He had a different therapist today and he didn't like that very much. Because our SLP is on vacation, we were squeezed into another slot with another SLP. She is very nice. She is firm with Ethan- which he totally hated. Anyway, because we were squeezed in, the therapist actually had two other children to do therapy with while we were. They were sweet children. One was a little girl with chunkamunk legs and chubby cheeks. The other was the most adorable little boy who blew me kisses from the moment he came into the room. Both of them had trachs. Olivia had a trach.

Now, I have seen other children with trach's since Olivia's passing. I don't know what was different about today. The little girl got so upset over something and she had to be suctioned. I had to bow my head down to the side as the tears started flowing down my face and yet I didn't want anyone to see. Hearing the sound, seeing the catheter- part of me wanted to help. It was a huge honor to me when Karen taught me how to suction Olivia's trach. That is not something that she just taught anyone to do. And, I hate necks. It was an adjustment initially to see Livvie with the trach, but because it helped her, I learned to not let it bother me. I would do anything for Olivia. I just can't tell you how much I love that little girl.

Please continue to pray for Karen. Occurances like this happen all the time for Karen. There are reminders everywhere that Olivia is not here physically anymore. Even though my heart is broken along with so many others who had the privilege of knowing and loving Princess O, it will never compare to the broken heart of Karen and Weldon.

Just for fun...

Another thefted idea from Christina over at Kwisteena's Kraziness. I can't come up with these things on my own.

Answer the following questions:

What is your first name? Kristen

What is your favorite food? pasta

Where did you go to high school? Mariposa County High School

What is your celebrity crush? Johnny Depp

What is your favorite drink? Iced tea

What is your dream vacation? Fiji

What is your favorite dessert? Cheesecake

What do you want to do when you grow up? Mommy

What do you love most in life? Life

One word to describe you. Nurturing

What is your favorite flower? Tulip

What is your favorite fast food place? In-n-Out

Now, go to Flickr and put your answers in the search engine. Choose one picture from the first page, copy the URL and then put it in the mosaic maker here. Here is my mosaic creation:

My Family

I saw this on Renee and Christina's blogs. I am a copycat. LOL!

Create your own family sticker graphic at pYzam.com

Bad Mommy!

On Friday and Saturday night, I had the pleasure of caring for a beautiful little 5-month old little girl with Down syndrome named Elizabeth. Her parents got in touch with our local Ds support group asking for a babysitter while they were in a wedding. I, of course, responded. :-) You know I never back down from a chance to snuggle with babies if I have the chance!!!

Well, I had to take Ethan with me on Friday night because Scott was networking at the downtown gallery hop. Ethan did not nap Friday (big mistake) and he was Mr. Crabbutt once we got to the family's hotel room. Elizabeth was tired from her day of meeting loved ones and off nap schedule so we snuggled on the chair/ottoman combo when she fell asleep. Ethan did NOT like Mommy snuggling Elizabeth! I told him that Mommy could hold him too, so he climbed up with us and immediately tried to take Elizabeth down! Seriously, Ethan went psycho-baby on me. He tried to grab her, pinch her, pull her off of me...It made him even more mad that Mommy was not letting any of that happen! And, Mommy put him back on the floor after that behavior. Bad Mommy!

Ethan gave me attitude all day Saturday as well. Boy, does that kid hold a grudge! I would have to say that he gets that from Gramma. (Yes, Mommy- I just called you out! LOL!) Today, he was a little better with me, but not by much. He was much happier with Scott today. Scott does not snuggle with other babies, whereas Mommy goes to hotels to watch little princesses and takes care of the babies in the nursery at church. Bad Mommy!

Thanks to Evelyn & Christian for trusting me to care for Elizabeth- what a joy!!! It was my pleasure. Let me know if you are ever back in this area and I will be sure to look you up if I am in yours!!!

Much love to all!

Brags & Ramblings

Yesterday's Vitalstim session went really well! Ethan even tolerated some oral motor exercises! Today, he was just feisty. He tried to rip off the tape and stickers numerous times, so we had to put on the arm restraints. :-( I hate that. Our sessions are done for the week and hopefully next week just gets better!

Surprisingly, Ethan took 8-10 unassisted steps on Monday too!!! Yes, that's what I said. He was so happy doing it too. If I wasn't the one he is walking to, I would be taking some video. I will work on that. I am so proud of him! He has come so far this year.

I am feeling better but still icky if that makes any sense at all. I coughed so much the other day while visiting with Karen that she insisted on giving me an albuterol breathing treatment and sending it home with me. I will be using it again soon.

Karen and I went up to Olivia's gravesite on Monday. Karen had new flowers to place. It really is still so unreal that Olivia is gone. I look around Karen's house and just keep waiting for Olivia to come home. Even being at her gravesite, looking at her headstone and footstone, I am in denial that she is there. We buried her there. No, that was a bad dream. We really didn't bury this beautiful 8 year old princess, did we? See- denial. I told Karen that these emotions that I have are not ones that I can usually express to anyone. She asked me why not. The truth is that Olivia's passing took a major toll on me. I loved her instantly and I cared for her as if she were my own. Of course, my grief will never compare to Karen's, but it is still something that takes over me some days. People don't understand how I can have such a connection to a child that wasn't my own. I should be "over it" by now. Well, I am not over it and I don't know if I ever will be. I know that she is in a better place and I know that I will see her again, but the fact that she is gone is still so heartbreaking.

Vitalstim Therapy

Today was Ethan's first session. He hated it. I started to cry with him at first because it was so awful. He scratched his neck so fast as soon as it was turned on so he could tear the probes and tape off, but he eventually was just plain ol' mad. He went for a full 45 minutes today without any oral motor exercises. Tomorrow, we go longer WITH oral motor exercises. Wish us luck! Only 19 more sessions to go!!!

MTV Movie Awards

Ok, anyone who really knows me knows that I love Johnny Depp in Pirates of the Caribbean. I had always liked him and thought he was good looking, but since Pirates, he is now at the top of "my list". He came onstage of the MTV Movie Awards tonight and I think I panted like a teenage girl. I would like to thank God for creating such a beautiful man. Darn, he looks good! He was back to his 21 Jump Street look. Yummy.

Cards from Students for Pennies for Patients

Ethan was selected as an honored hero for the Leukemia & Lymphoma Society's Pennies for Patients Campaign for this past school year. I have received a few packets in the mail with letters from students wishing Ethan well. Yesterday, I got a package with a stack of hand-made cards from, what appears to be, 2nd graders- maybe. I wanted to post what they wrote.

Get well soon Ethan, Dear Ethan, I hope you get well soon and I wish you the best and I will keep you in my prayers. From: Antwan

Get Well Soon! I hope you get well soon. From: Kaylee

To Ethan:
From: Tyler
Ethan I hope you get well. Get well soon Ethan. Get well soon Ethan. We are colleting money for you Ethan. I hope you get well soon.

To: Ethan
I know life is touf but you will live throught it. I love riding in my wagon to. You ride safe on your wagon.

To: Ethan
From: Alex
Hope you get to filling better. You like to make others smile. Well I can't wait tell you smile because you got better.

Ethan
Dear Ethan, I fell so sorry for you . My name is Makenzie. I like to play the piano and swimming too.
From: Makenzie

To: Ethan
From: Sam
I hope you feel better soon. So you can do the things you like to do more often. I know you will. Don't worry.

Ethan
Hi Ethan, My name is Morgan and I live in C*****ville, NC. I got to ********* school. I hope you get well!
From: Morgan

To: Ethan
Dear, Ethan I feel very sorry for you because of your cancer. It's amazing you know how to play the piano.
From: A.J.

Ethan
I am sorry for what you have. I will pray for you to get better. Continue to play the piano and have a lot of fun playing it too. Swim and have fun too. I hope you get better.

Get Well Soon! Thinking of You.
Dear Ethan,
I love to smile too. I was thinking about taking piano lessons but my mom never did put me in it. I hope you know I am thinking of you. Hope you feel better soon.
From: Ranlyn

To: Ethan
From: Andrew
Hope you feel better and get well soon. Dear Ethan, I hope you get well soon. Get well soon. Get well soon. Get well soon.

From: Rex
Dear Ethen I hope you get well. Than have a good life. Get well.

Get well soon Ethan. I wish you the best.
From: Joey

I hope you get well soon. One day when your out of the hospital to go to school tell your friends on what happened.
From: Nathaniel

To Ethern
Get better from your cancer so you can continue to get better.
From: Devonta Get better

Get well soon Ethan. I hope you can fight the kansar Ethan. Dear Ethan, I hope you get well Ethan because I would ready like to meet you. I read about you and what you like to do. You seem like a very nice kid. I love to play with cars and play a piano. Get well soon.
Sincerely, Manny

Hi Ethan. You watching t.v? Turn it off cause I got you a card!! :-) :-)
Do you miss outside... ...well were giving penies so you can come outside more! So say hi to your swim suit! Here's what I'm giving... God loves you and will never let go!

Get well soon Ethan!
Dear Ethan I hope you get better and play the pino and siwm and swing agin. Get well soon.
Yours sencerly, Brody

Get well soon.
To: Ethan
From: Aaron
Get Well Soon.

Ethan Your A Star. Get well soon Etan.
From: Joscelyn

Ok, now how sweet are those!?!? If my scanner was better, I would scan all of them. Some of the drawings are fabulous! Lots of them have swings, piano's, and wagons because Ethan's poster says "My name is Ethan and I am 6 years old. I was diagnosed with Acute Lymphoblastic Leukemia on February 13, 2004. I completed treatment in September of 2006 and I am currently in remission! I enjoy swimming, dancing, playing the piano and riding in my wagon and swinging! I also love to laugh and make others smile".



The one about watching TV has to be my favorite. The drawings are great and it was so imaginative. I left in the spelling errors on purpose because I find them to be as innocent as their heartfelt cards. These are so special. Thank you to all the children who wished Ethan well! You're the best!

Sinus Infections Suck

And, it's kicking MY BUTT! It all started with some drainage and laryngitis a couple of weeks ago, but I felt fine. Fast forward to now- I am completely full of gunk and my head and ears are about to explode in between the coughing spells. I know it is a sinus infection- I have had too many to count. Now, I am just trying to fix it on my own. My friend, Heather, gave me a Neti pot to use...I think it's working, but it has made things worse in order to make them better. :-(

Happy Birthday, Ethan!!!

Ethan,
Today, you turn 7 years old! Where did the time go? There is just something about seven that seems like such a big boy age...next thing we know, you will be TEN! You had rockin' hair today and an attitude to match! No one will ever be able to hold you back. You do things on your own timing and when we all figure out that that's ok, then you are going to soar higher than you already do. You make me proud everyday, even when I may not tell you. You are an amazing boy and I am incredibly honored to be your Mommy. Love you forever. ~Momma

Today has been fairly quiet. Ethan and I went to church, came home for lunch, and he snuggled up to me to nap. I love our naptime. Call me lazy if you want, but I cherish our cuddle time. Today, I didn't even sleep; I just watched Ethan sleep. I reminisced of when he was born and how far he has come. He really is an amazing boy. He has overcome and survived so much. We need to remember that more when the days of frustration overcome the reality that he is still here with us. Keep fighting, Ethan because that way I know that you are strong and nothing will keep you down! (no pun intended) :-) I think that we will take Ethan for an ice cream dinner or something. I remember that my parents would let us have banana splits for dinner once a year...I think it's a tradition that I plan to continue.

I have been fighting allergies/sinus/cold whatever you want to call it for going on a couple of weeks. I do believe that I just blew my nose into a spell of vertigo. My ears went into a fog and I felt like I was going to pass out from the spinning. It was bad. My ears are trying to open up now and the spinning has tapered off. Thank God!

Have a great Memorial Day Weekend everyone and don't forget to pay respect to those who have fought for our country and gave their lives doing it.

Walking Inspiration

Ethan stopped having any desire to walk a few weeks ago. We have had our hands up in the air not knowing what to do or why he suddenly has the lack of desire to walk. Well, today- we found his inspiration! Enjoy!


Walking Inspiration

Now what?

I ran into Ethan's ENT yesterday and he does NOT think that Ethan's recent behavior change is due to the ear tubes. Grrrrr, Grrrrr, and more GRRRRRRRR!!! I have so many different doctors/therapists telling me that this MEDICAL CHANGE has really affected Ethan. That medical change would be the tubes! I feel like we are going in circles and grasping at straws. We have an actual appointment tomorrow with the ENT, so expect us to be discussing this in detail!

On a better note, Ethan seems to be doing a tad better with things. He has been giggly and happy in the morning, which I love, of course! We are just kind of taking things very slow right now. I was feeding him breakfast this morning and after a few bites, HE went to grab the spoon to self-feed assisted. That is a big step! We will take it! So, yes- we have started over basically, but he's getting there again.

Kids Eat Clinic

Yesterday, Ethan's teacher accompanied me and Ethan to his feeding clinic appointment at 4pm. We didn't leave until after 6pm. We covered lots of ground. Here's how it went down...

Ethan refused to sit in the regular chair, so he had to then sit in the modified seat with tray. When it came time to eat, he pushed the food away and also tried to grab the plate and throw it. He also immediately went hand first into the tastefully crafted butterscotch pudding and proceeded to- finger by finger- remove said pudding into his mouth. Mary and I had hoped that maybe he would showoff and begin to self-feed again...nope. There will not be any self-feeding any time soon, unless he decides to.

The ear tubes have really thrown him for a loop. It has affected his senses as a whole, his equilibrium, his swallowing, his desire to self-feed...but by golly, there isn't any fluid in there! Yes, I am rolling my eyes because if it's not one thing, it's another. We have to start all over with self-feeding. Oh well- we move forward.

Ethan is continuing to lose weight. It has been concerning me for a while, but for the first time, it is concerning to a doctor too! Over a year and half ago, Ethan weighed 42 pounds. His BMI was even a tad high for his age and height, so we cut back on extra calories like the Carnation Instant Breakfast (CIB) that we put in his milk for that little extra. Six months ago, he was 35 pounds. He was holding steady at 36 pounds the past few months until recently. Yesterday, he was 33 pounds! When people see him after not seeing him for a while, the first comment is "Oh my, look how much he's grown!!!". Well, we thought that he was just growing taller without gaining the weight because until a few weeks ago, he was walking a significant amount in his walker. Well, he has grown a centimeter in six months- ONE CENTIMETER! There is something not right about that. So, we are going to recheck his thyroid. His labs have also been ordered to check everything- kidneys, liver, sodium, proteins...The blood test should be able to determine how he is absorbing his nutrients. I mean, Ethan eats. It may be a struggle and I may have a handful of my own hair pulled out afterwards, but he does eat. Keep you posted on that...

So now, we get to give a serving of "Yummy Pudding" and "Yummy Oatmeal" to Ethan everyday. The pudding basically consists of a pudding packet with whole milk, CIB, oil, and something else. The oatmeal is just an instant oatmeal packet made with half and half instead of water. Ok, that's like an extra 400 calories per day!

Now, the good news! Ethan has been on a waiting list for Vital Stim Therapy. A very long waiting list. Well, he's in! We begin therapy on June 2nd. Ethan will HATE it. It will be TOUGH. It is not guaranteed to work. But, it COULD work. We HAVE to try. It is very intense- hour and a half sessions, three times per week for about 5 weeks. Fun times- wish us luck!

That's how those 2 hours+ went down. Ethan hated me afterwards. Isn't it great being Mommy?!?!?! :-)

Ethan's IEP today

I think that Ethan has a great team on his side! We are not inundating him with goals that he cannot achieve, we are going to concentrate on specific tasks in order to get to the next level. Not to say we weren't doing this before- we were just trying to do it all too soon. Ethan needs concentration on a certain task in order to grasp it.

His latest behavior problems also come into play with how we will approach therapy over the next few weeks. We will be concentrating on oral motor skills and putting his walking on the back burner. We know that he can walk, so it's not like he will be losing too much skill there. We do, however, need for him to keep his hands out of his mouth in order to achieve any goals in ANY other area.

Ethan is incredibly stubborn, so this is not an easy job for any of us on the "team". Wish us luck!

Happy Mother's Day!

I would like to say HAPPY MOTHER'S DAY to all the Mommies out there! I would also like to take a moment to reflect on those who have lost their mother's or even their children. My best friend, Karen, lost her mother a couple of years ago and her precious Olivia in February. Today, is especially difficult for her, so if you could say a prayer for her and any other who is mourning today, I would appreciate it- thank you.

Happy Birthday MOMMY!

I couldn't do the formal shout out to my Momma for her birthday yesterday! So, a day late- here it is!!!

Happy Birthday Mommy! We love you! We hope your day was great!

Ethan...grrr.

Ethan has been an absolute pill for the past couple of weeks. He has gone backwards developmentally- it is quite frustrating. Even school is on the one-way ticket to Wits End with me. I have been given some ideas as to what could be going on with him. Lots of things lead to his ear tubes. One idea is that he has had fluid in his ears for so long that now that they are draining out, the overload of hearing sense has thrown him back into "comfort zone" which equals not walking and hands in the mouth. We are having such a time with him and it very well could be a toddler-like behavior, but the timing is quite coincidental. I have calls into doctors and he sees the behavioral pediatrician on the 19th for feeding clinic. We'll see...pray for us.

My First Open House

Last night, I held my first Open House for Uppercase Living. Five of my friends came and we enjoyed each other's company while looking over the beautiful expressions that UL offers. I am especially excited to see the custom expression that we made for Olivia. Thanks ladies for coming and supporting me!!! *muah*

A couple of friends were with me until almost midnight because of a horrible storm that was ripping through our area and then camped out around their homes. This was tornado-type weather and there was even one spotted not that far away from here. So, we just chatted away with lightning as our background.

CONGRATULATIONS RENEE!!!

I would like to congratulate our friend, Renee Garcia over at Life With My Special K's for winning the Military Mother of the Year Award!!! Renee is a mother of four children, wife to Frank, advocate for Down syndrome...just to name a few. Frank is currently in Afghanistan serving our country in the Army. This is Frank's second tour over to the Middle East. Renee and Frank's third child, Kennedy, has Down syndrome and also went through the nasty "L" word.

You can read about Renee's win here. CONGRATULATIONS RENEE!!! YOU DESERVE IT!!!