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?!?!