The past week

I decided to take Ethan to his old school to see the staff that love him so much. I hesitated because I didn't want to confuse him- he would fuss every time we drove by the school over the summer and I would always respond with "that's not your school anymore". Well, he was very excited to be back on MES grounds and even happier to see Mrs. M., Mrs. B., Dr. A., Mr. S., and Mr. B! Ethan had a good time and loved that Mrs. M. took him outside to swing! He would walk to her while smiling- so sweet!



First Week of School

Tuesday marked the first day of school. I was nervous because of the new location of Ethan's classroom. The only thing that made me feel better was knowing that he still had Ms. Mary for his teacher. Will the kids at the new school be as accepting? Will they want to get to know him? Will he have the same opportunity to bond with the typical kids?





By the end of the first day, I saw about 7 kids from the afterschool program stop by the classroom and ask about the room. Ethan was curious and went up to them and started telling them "hi" in ESL (Ethan sign language). Mary proceeded to tell the kids what Ethan was saying and they immediately learned how to communicate to Ethan! Nervousness fading...

By Day 2, Ethan had already proceeded to be the Supa-star that he is and making himself the center of attention on more than one occasion. The kids love to come in and play with him. It is a treat and reward for the typical kids to be able to come and spend time with Ethan!

Everyone has been very nice, and while I *hate* the drive to get there, things are not that bad. We still wish that we were at MES, but we will make lemonade out of these lemons, and Ethan will just continue to teach others how awesome and amazing kids with special needs are!

Skivvies

Tis the night before another schoolyear and I am killing myself trying to get these darn cutesie pictures put on the blog! Grrr....

Anywho, I will edit later and hopefully make things look prettier.

My friend, Bethany, was holding a clearance sale from her
online boutique, Polkadot Platypus, and she had these cool skivvies! (Side note: You must check out PP! The stuff is super cool AND shipping is LIGHTNING fast!!!)

I spent two days trying to get a good picture of Ethan in his new skivvies. The first night, he just cried, then I got some pretty good ones of him walking/standing and just all around being his cute self.

Bethany, you were right- they do fit small! Thanks for the heads up! I {heart} them.

I can't stand RIP

I can't really explain why I can't stand to see RIP when someone passes away. I think it seems impersonal and easy, like Xmas at Christmas time- can't stand that either. So I'm weird, deal with it. LOL!

Warning: MORBID THOUGHT COMING

Please do not put RIP after my name when I die. Trust me, I will be at peace with God. Thank you.

Deep Thoughts by Jack Handey

C'mon, you know that if you ever watched Saturday Night Live back in the early 90's, you know who Jack Handey and his Deep Thoughts are! LOL!!! I have searched Youtube and such for old clips of them, but never found any. Wouldn't ya know that there is a website!?!? Whodathunkit?

Now, I have added a widget to scroll Deep Thoughts during the day. It's over there =====>

And, here's the website: http://www.deepthoughtsbyjackhandey.com/

My favorite one growing up was:

If you ever drop your keys into a stream of molten lava, forget about 'em
Because, man, ...they're gone.

Hilarious...Ethan's "Drunk"

Ok, back in May Ethan had a sedated EEG and MRA. We ended up in the day hospital until around 9pm because Mister Man decided to swallow his tongue and desat down into the 60's. Once he started waking up from sedation, after HOURS- which was SO unlike him, he was- well...a tad drunk. It is too funny...

(Those on reader, there is a One True Media video below)


"Drunk Ethan"

Leave A Legacy

There are walls at Walt Disney World, Epcot, called the Leave A Legacy walls. They have pictures of guests etched into these walls- concrete/granite/something hard, LOL. When we went for Ethan's Make A Wish trip, Ethan and Grandma Lynda had their picture taken for the Leave A Legacy wall. We got a mailer with the picture and coordinates for where they were, so if we ever return, we can find it.

Well, many friends were fortunate to travel to WDW for family vacations recently and I passed the coordinates along to them in hopes of getting a picture, and for me to know that it is really there.

It's there. :)

How cool is that?

BIG THANKS to my friend, Jennifer, for finding our picture and taking pictures for me!!!

Computer's BAAAAACK!!!

Thank you, Chris! You're my hero! ☺

I am feeling better, some days/weeks are just (obviously) better than others. Thank you to everyone who reached out to offer love and support. *muah*

Feeling Isolated

For the past few weeks, it has totally hit me that we don't fit in anywhere. Everyone loves Ethan, OF COURSE, but that seems to be where it has ended. There have been times over this summer that it becomes painfully obvious as I see pictures and stories of get-togethers of all the kids out of school for the summer. Play dates. Park time. Swimming.

We are not part of any of it. Honestly, we just probably wouldn't fit in anyway. Ethan is not going to go running around a park with other kids his age- or period for that matter. He's not going to talk either and other kids are not going to necessarily understand why, yet.

I can't remember the last birthday party Ethan was invited to (not including Madison or Delaney). He's just not thought of to be included in anything. That has been getting to me. Maybe our friends really aren't our friends- maybe they are just friendly peers. Then again, if he were invited to say a Young Chef's party, we wouldn't go anyway because it is not something that Ethan can do yet (we have tried).

Rambles. We are stuck in the middle. Neglected on one side, but likely unable to participate if included. It sucks to be stuck. It is very isolating.

So much to say, the condensed version

My good friend, Chris, is my go-to guy for all anything computer. He is my own technical support, and I love him for it. He broke the news to me yesterday that my less-than-six-months-old hard drive has died. He tried to fix it, but it has gone into hard drive failure and unable to be brought back. Luckily, it is still under warranty so Chris has sent off for a replacement and will soon have my computer back to me.

So, what's been happening?

* Per advice from Health Law, I am working on getting more detailed recommendation letters from doctors for the feeding program and resubmitting vs. appeal.

* I have 2nd and 3rd opinions set up next week at Duke and a dyspagia center in Raleigh.

* I still have not heard from the school regarding Ethan's official placement yet, which is beginning to pi** me off. It seems as though the kids that they told me would be worth moving the classroom across the county for are not there and the classroom may only have one other child in it. I can tell you right now that if that turns out to be the case, be prepared to be hearing about my stomp on into the EC Director's office.

* My friend, Amber, from high school came out to North Carolina for a week with her girlfriend to visit family and drove up to visit with us for the day!!! Amber and I hadn't seen each other in close to 16 years! I am the dork and did not get any pics, but she did. As soon as she posts them, I will steal them and post. LOL! It was so great to spend the time with her! Our day went by way too fast...

* My friend, Bethany, was on her way to Hilton Head, SC for vacay with her family and stopped in Raleigh, so we headed over to have dinner. We ended up staying (THANK YOU KYLE!!!) and I was able to step into the crazed world of a NKOTB fanatic as we watched a show via webcast!!! =)

* After leaving friends in Raleigh, we were headed to DC because my sister, Kim, was in town for a romance writers convention. We had time to kill, so we just kept driving and ended up in the Outer Banks at Nags Head and Kill Devil Hills. We have lived in NC for almost 6 years and had never made it over to OBX. Along the way, we passed the most disturbing billboard for Dirty Dick's Crab House that read: I got my crabs from Dirty Dick's. And then, we passed another billboard that read: Try My Nuts. Nasty.

We had Ethan's swimwear, so we took him to the beach. The water was pretty cold and Ethan wanted to eat handfuls of sand. Ugh. The kid won't eat a cheerio, but sand looks great! *eye roll*

We stayed with our friends, Dennis & Eleanor (Computer Guru Chris' parents), in Virginia outside of DC. WHAT A HUGE BLESSING!!!

* We met Kim at the hotel in DC by 10am. We navigated through DC without any major map and found our way down to the monuments. We got super close parking thanks to Ethan's handicap placard and proceeded to check out some bits of history. After checking out Abe, we walked down to the WWII memorial--oh my, BEAUTIFUL. Ok, real quick though- the reflection pool is NASTY!!! My previous desire to jump in it was quickly dissipated as soon as I saw foam and slime all over it. Blech. Then, we walked the wrong way because if we would have walked to the left, we would have passed the Vietnam wall on our way to the WWII memorial, but instead we took the LOOOONG way. Due to time constraints, we drove by Jefferson and tried to do a drive-by of the White House, but it wasn't happening. We did see the President's helicopter fly over though. Woot woot. Drive-by tourism is awesome, I highly recommend it. HAHA. We had a great lunch with Kim and I tried to embarrass her all I could by posing as papparazzi. What are sisters for, right!!??!

* Dropped Kim off at airport and then proceeded to miss the sign for the highway we wanted. Ended up in Maryland, half way to Delaware. Took 2 hours to still be in DC. Kristen & Scott end up beginning to be very ugly to each other due to fatigue and aggrivation. Ethan is, surprisingly, wonderful.

* We opt for a more scenic drive home than I95 and end up at James Madison's home, Montpelier. We contemplate crashing the private garden party that we suddenly became a part of, but opt for just seeing the home for free. =) Beautiful place!
Until I have my computer back, you can see the pictures from the trip here.

* We miss our exit in Charlottesville to stop for dinner so we continue on. Next stop: Lynchburg. It is after 8pm when we pull into the parking lot at Cracker Barrel. I am exhausted and WAY grumpy. Ethan is tired, irritable, and HUNGRY. YAY for pancakes. Ethan {hearts} pancakes. While feeding Ethan, a sweet woman approaches our table. She says that she thinks that Ethan is adorable and that he reminds her of her son who recently passed away. We had a lovely and touching conversation. Her husband couldn't come over- it was too hard and too soon, but we did exchange info. Their little boy, Charlie, passed away on his 6th birthday due to a pharmaceutical error. Double check your kids' medication- pharmacists make mistakes too! I told Scott that the reason we took the wrong turn, spent 2 hours stuck in traffic, missed our exit for meal option #1 all because we were meant to meet this family. Suddenly, I wasn't so grumpy anymore.

* Bethany and fam came back through Raleigh on Saturday. Ethan and I went to have dinner, meet up with other Downsyn friends, and head to a Durham Bulls baseball game. Ethan was pretty good, except he wouldn't walk into the stadium, so I had to carry him and it was HOT. Especially hot because of the fleece blanket I was also carrying in case he didn't want to sit in his seat. We almost didn't make this trip, but thankfully Bethany talked me into it. We had a great time (sad that Nika was not feeling well, though!)!

* We are hoping to get together with Ms. Mary and Gracie (Ethan's favorite girl from school last year) sometime this week!!!

That's all...I think. And, that WAS the condensed version!!! LOL!

Got the official denial letter

Appeals Court, here we come!!!

The letter is full of legal codes and blah, blah, blah's. What is not in code is how they, supposedly came to the final decision. I am not going to totally get into it right now because it is just so frustrating, and I am too tired to. Plus, I really want to talk to my rep at Health Law before giving out too much public info. I am sure everything would be fine, but you never know with court.

Will keep you updated as I can.

I am REALLY tired

OF CLEANING "PAINT" OFF OF WALLS AND OUT OF CARPET!!!!!!!!!!!

Still nothing

I supposed that I could elaborate on what's going on with the feeding program...

Long story short, the lady at the insurance is violating both federal and state guidelines by telling families that there is no appeal and that decisions are final. We have to be given a formal declination in writing with the right to an appeal hearing.

I have been in contact with the National Health Law Program, who are awesome btw, and they have contacted the attorney's at the insurance. They responded almost immediately with "WE ARE ON TOP OF THIS".

I do have high hopes for what can come of this. If all else fails, we stirred the pot. It is NOT ok for someone to think that they are God and lie to families like that. She needs to be brought down a notch and put in her place.

So, we keep fighting for the chance. That's what this is all about- a chance for Ethan to go to the next step with feeding and swallowing. He deserves a chance. No, we are not guaranteed success, but we can't achieve success without an attempt which is why I simply cannot understand why one of Ethan's doctors will not recommend for him to go to the feeding program. She feels that this is just Ethan. This is his neurology- he will always be a suckler because that's how his brain works. Well, you can retrain a brain- THAT has been proven. But, you have to do it sooner than later. The older Ethan gets, the less likely we are to be able to "rewire" his brain's processing.

The good news is that she is only one opinion. I have quite a few other doctors and therapists that are in favor of trying. I spoke with CHOP this morning and from what I have told them, they feel that Ethan is a good candidate. So, I move forward and keep trying.

Thank you to all who have been asking and praying. We appreciate it!

Told ya it was going to get interesting...

IN ACTION. I will- hopefully, prayerfully- have good news soon.

"Kids On The Doorstep" ~ Kimberly Van Meter

Today is the day that my sister's new book, Kids On The Doorstep, hits shelves. This marks her sixth book being published! Before I give you my review, I have to start by saying how PROUD I am of my sister's accomplishments! She works so hard- as a journalist, romance writer, wife, and soccer/swim/football/dance mom. She is always on the GO, I have NO idea how she even has the time to get her creative juices flowing for her novels.

Ok, so since I am the author's sister I have the distinguished honor of receiving an autographed ARC (Advanced Reader Copy). The day that my ARC came in the mail, I was already emotional because of my leg injury. I opened up my package from Kim when I got into the house. I had to check to see if she actually signed it because on one of her books, I joke with her that she signed it with "invisible ink" because she forgot to sign it at all. Well, she did sign it with a simple and yet very touching note. But what was inside got me. Her dedication page. I was not prepared for what she wrote.

To the mothers of the world: raising children is the most important
job we as adults will ever have, as they are our legacy and our future.

To my sister, Kristen, who wears the badge of motherhood with pride and
inspires people to love without reservation, without judgment, without
fear. She is a mama bear and a wonder to watch in action!

Since I was already an emotional mess, I sat on my sofa and bawled my eyes out. I had no idea that she was writing anything to me and it meant so much to me, especially since I have had to face more challenges with Ethan lately. What an honor for ME to be recognized by my big sister. I hope that I make her proud too.

Ok, so I do not normally read unless it is People Magazine. I am the bad sister who is behind on reading Kim's other books. It has nothing to do with her- I just get distracted easily. I read Kids On The Doorstep in TWO days. Yes, TWO days!!! I think that speaks volumes for what I think about it. =]

John Murphy gets the shock of his life when he finds three girls on the
doorstep. Once he takes them in, it isn't long before the little tykes
bring out his fiercest protective instincts. So when their mother shows up
at his Emmett's Mill Ranch, he's ready to do battle.

Except Renee Dolling isn't what he expects. She clearly loves her
girls and wants to make up for the past mistakes. John wants to trust her,
but he's got the girls to think about. Unless Renee can prove she's the
mother her daughter's deserve...and the woman this solitary rancher
needs.
~Back Cover Teaser

I was able to picture the scenery, the girls faces, the emotions...I could feel Renee's heartache. There were times that I wanted to slap Renee around a bit. She faced a parent's hardest decision...walking away in order to make things better for the kids in the long run- only, things did not end up as she intended and she blamed herself.

Kim told me that her editor cried when reading this book because it is so emotionally raw. I know many will enjoy Kim's latest installment in her Emmett's Mill Series.

Please visit your local bookstore, or even Target/Wal-Mart and pick up Kids On The Doorstep!!! Also, please visit Kim's website at www.kimberlyvanmeter.com! Check out her blog and be sure to let her know if you get to read her book! Kim is ALWAYS happy to hear from her fans!

Kim- Love you Sista!!! xoxo

SBP - FEAR NOT!

If you follow me on Facebook, then you have probably seen my status updates to read something along the lines of SBP bound! FEAR NOT! Lots of people had no clue what in the world that meant. LOL!

SBP = Summer Block Party (Vacation Bible School with a twist!)

Originally, I was supposed to be a crew leader- which is in charge of up to 5 kids. I was one last year and had a great time watching the kids be excited to learn about God. But, because of my leg injury, I had to resign as a crew leader this year.

So what did I do? I tried to make sure that the volunteers had plenty of sweet tea and water, and even made sure there were some snacks too. I had great helpers, which I was very thankful for since my leg is still very tender and sore. I was still able to see the kids have a ton of fun and be excited learning about God.

Delaney came again this year and had a great time, again! I stood in the back of the sanctuary so I could "observe" her without her seeing me. She was so flippin' cute!

SPECIAL THANKS TO DONATOS FOR DONATING PIZZA LAST NIGHT! And, to everyone who brought snacks, it was very much appreciated!

And, I have to say another very special thanks to Laurie W., Becky J., Allison N., Catherine G., and Tiffany S. for putting together SBP! It was awesome. Thank you SO much!

Bad News Updates

#1: I called the hospital in Virginia. NOT HAPPENING. It is basically institutional care. Parents are only allowed on campus during visiting hours after 4pm. Nope. Not happening. I am very curious why insurance would approve an INPATIENT hospital stay versus an OUTPATIENT program??? BOTH are out of state, so it makes no sense. My dad says it's about funding for institutions. He may be right, and if so- this country is still in the backwoods, which is NOT ok.

#2: Haven't heard back from the vet, yet.

#3: I took Ethan to the doctor today because he is still having tummy issues and he won't eat much beyond a little bit of oatmeal. And, he is not drinking like he should. He is not dehydrated, thank goodness, but he has lost 2 pounds in the last week. He is so tiny and doesn't have any fat to lose, so 2 pounds is huge. He did drink a boost earlier and a milk- which the doctor said was ok if that was the only thing that he will drink. His poor tummy is so bloated and gurgly. I am supposed to get a "sample" to make sure he doesn't have something else going on in his tummy. That should be fun. (sarcasm, yes)

Duuuuuuuuude!

Why does Ethan keep banging toys on his head?!?! We tell him to stop and he thinks it's funny! It's like- "LOOK HOW HARD MY HEAD IS, MOM!". What the heck?!?!

Bad News #3

Ethan has a tummy something going on.  Virus?  Food?  Not sure.  It could very well be from his painting fiasco the other morning.  Let’s just say the child was nekkid and had painted the walls and floor with, um, “paint”.  Oh, and while he was at it, he gave himself some tribal markings on his face.

We know that he put some of the “paint” in his mouth, so we are wondering if that is what is causing his tummy issues. 

Poor thing has slept a lot today- so NOT like him.  And, it has been a real challenge to get him to drink, so pray he starts drinking better so I don’t have to get him an IV!

I think I am done with bad news for tonight…

Bad News #2

Our beautiful, loving, playful, sweet-spirited dog- Shep- may have cancer.  I took him to the vet the other day because he has a mass on his chest in between his two front legs.  Scott had noticed it during his bath last week.  It was not there when he was given a bath last month.  So, this mass has grown significantly in a month or so. 

At first the vet thought that it was just a lipoma- or fatty mass of cells, which is typically benign.  But, to double-check, she took an aspirate sample of the mass and another one that was down in the groin area.  The groin lump was definitely just a lipoma- no worries.  But, the one from his chest was surrounded by “different” cells.  The vet was surprised, but said that we would have to send a sample to pathology in order to know what the other cells were- they were just definitely not just fat cells. 

I asked if it could be cancer and she said “possibly”.  She took a picture of the slide from the microscope to post online to other vets to see if they would know what the other cells are, but I won’t hear from her until sometime later this week.  *sigh*

Shep is our first baby.  We got him two weeks before we got married, so he is almost 11.  We know that he is getting old- especially for his breed (Chow Chow/German Shepherd), but we are just not prepared to have cancer in our family again.  

We pray that the cells from the mass are not cancer cells and that it is nothing but a benign mass. 

Bad News #1…A picture story.

’s insurance has    our request to have go to the Children’s Hospital of Philadelphia (CHOP) for the intensive swallowing/feeding clinic.    They, once again, say that there is no appeal process, to which I say:   How can you tell someone that there is no appeal process?!?!  They say that gets enough services here in NC and it doesn’t matter if it’s “Not Enough” by my standards.  Um, hello you   ‘s.  It’s not just ME.  It is his doctors and therapists and teacher.  The people who are around this child everyday.  The people that are just short of ing, for the safety of my child, provided letters and documentation showing why needs such aggressive treatment.  Does it matter?  Of course not. 

We were offered an alternative at a hospital in Virginia, to which I ask:  Why will you send us out of state to Virginia but not to Pennsylvania?  It’s not like they are paying for my transportation to get there.  I don’t have an answer on that one yet. 

One thing about the other hospital, from what I was told and from what I have read, is that the parent does not stay with the child and it is an inpatient stay.  Um, no.  If you think that I am going to drop off my son at some hospital over 4 hours away from home, then they are !!! 

Tomorrow, I begin the appeal of the no appeal process.  If they thought that I would just accept this answer, then they thought wrong!  They are messing with the wrong !

.  This should get interesting.