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.

Prayers Please.

Our appeal for the feeding and swallowing clinic in Philadelphia is in Raleigh for review. We ask that you pray that our appeal is granted and that we are approved for travel to our appointment on July 6th. Ethan needs this. Please pray.

Thank you.

Happy Father’s Day!

Today, we celebrate Father’s.  We celebrate all that they do for us, whether they are the Father of our children or our own Father’s.  We celebrate those who are Father’s even if not by blood.  We love you very much.

To Scott:

Happy Father’s Day, or should I say- Happy Daddy’s Day!  Ethan’s eyes always light up every time you enter the room!  That is how much you mean to him.  You are his world and I know that he couldn’t ask for a better Daddy to love him, play with him, and kiss his forehead whenever he may not feel well.  What a lucky boy to have you as his Daddy!  And, of course Shep loves you more than pig ears!  LOL!  What a lucky puppy, too! 

We love you!!! 

 

Now, to my Dad.  I want to wish you a very, very Happy Father’s Day!  I hope that you were able to do something special just for you today.  I wish that I was home to give you a special hug.  But, since I can’t, I am posting a few of my favorite pictures with you.  Two from my wedding- the first as you walk me down the aisle and the second as you give me away.  I am not sure if I have ever told you how much those moments meant to me.  Thank you.

And, this last one.  Obviously, I edited it to pencil just because the colors were old and I thought it looked cute.  This was before you went out to sea the first time.  We had all just woken up and Mommy wanted to get a picture of us all.  Of course, she wouldn’t take a picture because she was too busy crying her eyes out that you were leaving. 

We may not have the typical father-daughter relationship, but I love you just the same.  Yes, even when you drive me crazy up a wall!  I wouldn’t be the person that I am today without your love and guidance over the years.  For that, I thank you. 

Love, Your Daughter Kristen

I don't remember...

Breaking that mirror!!!

I went to ortho today regarding my leg(s). He was a very kind man who thought that I was from Canada because of my "accent". I had to laugh and tell him, "um, no". He then wanted to know where I was from. Once I said California, he said that he could tell. I have never ever heard that before! He loves the Bay Area and continued to talk to me about California and every once in a while would throw in, "I promise I will get back to work and talk about your leg". Too funny...

So, the original injury on my left leg is fairly common. But, he said that he couldn't remember the last time someone had it happen to BOTH legs! He said that I had a case of really bad luck. There is no other medicinal reason for me tearing my muscles. It is not even from being overweight. It is not from any previous medications taken for my RA. Yay me for bad luck. *insert sarcasm*

He told me to find a pool and swim as much as possible. Continue to take the epsom salt soak baths and to start some stretching and massage to loosen up- I swear he said hematoma. Is that right? Oh well...I have my orders. It is going to take close to 3 months or so to heal. The good news is that the muscle did not tear off the bone or anything, everything is where it should be, it is just torn and has to take it's time to heal. I have to be very careful to not push myself because the other leg is actually still healing and I don't want to hinder the healing process.

The bath I took the other night really helped. I am able to flex a tad more today than I have the past 11 days, so I will take this time to continue to read my sister's new book. More on that to come...

Literal Videos...HILARIOUS.

You HAVE to watch this! There are also 'related videos' after this one is done. I am headed to check out the A-HA one...

Loving the sound of...

Size 9 walking feet.

*That would be size 9 Toddlers, not adult*

Kamrin's Visit

I had planned on posting a really nice update after Kamrin's visit last week, but my computer has decided to go through some illness and it has been at Dr. Potts' office to recover, which has kept me from having access to add pics and all. I am borrowing my friend's laptop- THANK YOU Jimmie!!!- in order to post what I have.

Anywho, last Tuesday, I left my house at 5am to head to Charlotte to pick up Kamrin, Kyle, and Mr. & Mrs. Turner. Their flight was slightly delayed, but still got in about 7am. I was very fortunate to have my friend's nice big beast of a car (Nissan Armada) to pick them all up. It was especially useful because we ended up having to keep all of their luggage because the airline wouldn't let them check it in before noon.

We opted out of breakfast in Charlotte and headed back home. By the time we were close to home, the munchies kicked in and McCafe came to the rescue. Once we got home, we just chatted and relaxed. It was a very comfortable and just amazing and awesome visit.

It was great seeing Mr. & Mrs. Turner, too! I haven't seen them in well over 10 years! (For those who don't know, Mr. Turner was my high school English and Drama teacher...Kim's too.)

I had picked up some roast beef for sandwiches and made tortellini salad. It was just a very homey visit. Kamrin went with me to pick up Ethan from school and she was able to have some better time with Ethan. He was much happier than the last visit, and she was able to see him walking!

It came time to head back down to Charlotte. The time went by way too fast, of course. I think I said, "Do you have your passport?" a gazillion times.

I made sure to watch my little sister until I couldn't see her any longer. Yes, I was one of those crazy people at the airport repeatedly waving until we couldn't see each other any more. Then, she was off to Philadelphia for a quick stop before heading on to Ireland.

I have been able to talk to Kamrin twice since she has been in Europe and she is having a great time! She has seen most of Ireland, so far, including over 12 castles and even kissing the Blarney Stone (ew). Now, she should be in Scotland since her flight left first thing this morning. I am so happy for her and this experience that she is able to have. *Love you, Drew!*

One thing that I told them all when they were at my house: "I want you to go to Europe and then I want you to come back and say that the best part of your trip was your stopover in North Carolina!" : )

Doctor Update

I just realized that I actually never updated about the doctor appointment earlier this week. Ok, so I tore my calf muscle- I already knew that, but it is a much worse injury than the previous time (also something that I already knew). What I didn't expect was to be sent over to have an ultrasound done to make sure that I did not have a blood clot. Thankfully, I did not.

What wasn't good news was that my leg is still too tight/sore/swollen for being as far out from the injury happening, so I have to see an orthopedist next Wednesday. The doctor that I saw hinted that there was something else going on because my muscles shouldn't just be tearing like they are, but he told me that I would have to see what ortho says. After talking to my mom, she reminded me of when I tore the ligament in my ankle so bad when I was 6 simply walking up some stairs at school. Maybe I have just always had easily shreddible muscles??? Leave it to me, I guess.

Anywho, I feel very helpless and useless. Scott has been awesome. Today has been very difficult because Ethan is now out of school. He is mad at me for being injured and he is being a tad defiant. I think it's kind of smart of him, actually...I mean, it's not like I can run after him! Lil' stinker!!!

I have been able to get Ethan to walk to his chair for meals and I can lift him out of his chair, I just cannot carry him anywhere. It really, really, REALLY sucks. This is when it is horrible living away from family. I could really use my Mom right now.

I am also very shaky. I cannot describe it really. I thought it was the Vicodin that I took initially, but I have not taken that since day one of injury and I still have these shakes in my hands. Very weird. I think that I need to remind my body that I am only in my early 30's and should not be going through all of this junk!!!

"THE" video

*Disclaimer to the Grandma's: Get a tissue.*


Hall Walking

Be on the lookout...

I have the most AWESOME video to post! I just have to get it uploaded! Seriously, you will flip!

Ok, ok...

So, I called the doctor to make everyone feel better. And, yes- they want to CYA see me. Since it is the other leg, they want to make sure it's not something else. It was too late to go tonight, but I will go tomorrow. If they tell me what they did last time, I want my $25 copay back.

Russell has a forever family!

I think that I posted about Russell a long time ago...I think. Anywho, he is a little boy in Eastern Europe with Down syndrome who was available for adoption through Reece's Rainbow. He is the sweetest looking little boy and I prayed that someone would feel led to bring Russell home to be a member of their forever family! I just found out that a family in Pennsylvania is going to adopt Russell! YAY! Another child saved from a life of institution and imminent death!

Click on the button to go say hi to Russell's new family!


Grab This Button

Glimmer of hope

Our social worker from the hospital just called to let me know that she is appealing our case to the person who made the decision to deny Ethan treatment. It is at least comforting to know that we have someone on our side at the hospital fighting for us. We can just hope and pray that the appeal goes through!

Oops, I did it again...

Back in April, I wrote about a crap week. This one is not much better. I hurt my leg pretty bad on Saturday. Last time, it was the left leg and now it's the right. I'm all about equality, ya know...at least this time, I have a better story besides "I was just walking".

I had gone into the kitchen to make Ethan's milk and I closed the baby gate behind me. When I was ready for him, I went to pull Ethan up over the baby gate and as I leaned over to pick him up, my knee hit the baby gate and it went flying over as I was mid-pickup of the boy. In order to keep from falling and Ethan getting hurt, I landed funky on my right leg and it snapped...AND rolled. That's the only way I can describe it. Snap and roll.

Pretty much after that, I was screaming in pain and I even began to cry because it hurt so bad! At first, Ethan was startled by it all, but I put him on my lap to make sure he was ok and then he thought it was funny that Mommy was crying in pain. Niiiiiiiiice.

Scott was not home, but he was close...thank God! He has been awesome in wrapping my leg, getting me ice, bringing me meds and food, and taking care of Ethan. I would be in a lot of trouble right now if I were a single parent!

The last time this happened, I could at least walk on it the next day with a slight limp. That's not happening this time. I am still swollen down to my ankles and I cannot bear any weight on it. I can bear a little bit of weight in the very tip of my toes, but it is very short lived. I can't do anything! I had to have a friend come over to put Ethan in the car to take him to school! Come to think of it, how am I going to get him into the house today AFTER school??? Oh, heck.

So, to answer the obvious questions:

Am I going to the doctor? No. I already have the crutches and the boot. There isn't anything else that the doctor can do at this point. However, if I still can't walk on it by the end of the week, I will make an appointment.

Am I working out? HAHAHA...funny.

Ah, Calvin...you can always make me smile even when I am so ANGRY!

I got the call from our social worker yesterday telling me that our pre-approval request for the intensive feeding program at CHOP has been denied. They say that Ethan is already getting enough services here. It's a bunch of bulldookie. We would not have multiple doctors and therapists referring us up North if they could offer the services that he needs! ONE person made this decision and this ONE person states that there is NO appeal process. I'm sorry, but WTF? NO APPEAL PROCESS??!!?!?

This is not about me simply wanting Ethan to eat a french fry some day- this is about his safety. He just got over aspirate pneumonia, AND he has already had one item surgically removed from his throat...something that I do not care to repeat any time soon. Luckily, it was an item that did not obstruct his airway.

The budget cuts that are happening are devastating to the special needs community. CAP slots are getting cut/froze, as are Health-Choice spots. Mental Health units are being shut down. I would LOVE to be able to not have to need a CAP slot- I would love nothing more than to be able to care for my son like I always did a couple of years ago. I would LOVE to not deal with SSI. I would LOVE to be able to take him where I need to take him for the best possible medical care without being yanked around by insurance. I would love lots of things, I guess.

But, I am angry. I am angry that my son's safety will continue to be at risk, but in the meantime the auto makers are getting bailed out. I am angry that children are losing healthcare, but a certain senator can come into office and decide that the decor was not to her liking, so it got a new renovation/makeover- courtesy of the taxpayers, of course. Not cool. Not cool at all.

EEG/MRA results

EEG

Abnormal patterns, no seizure activity. Doctor is not concerned.

MRA

No sign of Moya Moya disease! YAY! Arteries look GOOD.


Pretty much what I had anticipated. We go in for follow-up to discuss on June 29th.

Not exactly how we planned it…

Ethan was scheduled for a sleep-deprived EEG first thing Friday morning at 7:30.  This meant that we had to keep him up late Thursday night and get him up early Friday morning.  I don’t know why I say “we”, Scott didn’t even flinch at 4am when I had to get up to go and wake up the Boogs.  After the EEG, Ethan was scheduled for a MRA.  Both the EEG and MRA were set to be sedated which meant no food or drink after midnight the night before.

EEG

We were called back on time, which was nice.  The tech proceeds to say that they don’t have orders to do a sedated EEG.  I show her my form that says that he is in fact scheduled for sedation.  Doesn’t matter, she says.  She also says that if he is going to be sedated for the MRA, she really can’t sedate because you can’t do a “double sedation”.  Alrighty then…we just roll with it. 

Ethan put up a fight, of course, while the tech put the 20+ probes on his head.  But, once the test could get started, I put him in my lap, crossed his arms, and he fell asleep.  The tech said that it was a perfect EEG in terms of him being awake and then falling asleep. 

MRA

Ethan was given a shot of pentobarbital orally to help him sleep before, which worked, but as soon as they tried to put him on his back for the scan, he flipped out and they had to do an IV shot of Versed to be sedated.  May I add that it took SEVEN adults to hold down my sleep-deprived pentobarb-sedated child in order to get the IV in!

I was told that the MRA scan was only going to take 10 minutes, so imagine my concern when I woke up from my own little nap 45 minutes later to still no Ethan.  Shortly after I woke up, a nurse came in to tell me that there was a little complication…

After the scan was done and the IV had been removed, as Ethan was being wheeled back to our room, he decided to let his tongue roll back to the back of his throat and obstruct his airway.  Suddenly, his O2 sats went from99 to 63 and his lips turned blue.  He was taken back and given oxygen, put on a pulse ox and all was gravy.  But, because of what happened, they wanted to observe him for a while which meant that we were getting admitted into Day Hospital.

 

So, our day did not go as we had planned.  We spent our Friday in the hospital while under observation.  His sats never once dropped again and he did not need any other oxygen than room air.  Boy, was he drunk though when he finally woke up around 8:30pm!  LOL! 

We were finally released around 9:30pm.  I got him home, gave him a bath to get the paste from the EEG out of his hair, and then I had him sleep with me that night.  It was funny watching Senor Drunkard stumble around the floor.  I started to say he was a cheap drunk but then I thought of how much Friday cost, and then I had to say, “Yeah, not so much”. 

We were very lucky to have my friend, Karen, working at the hospital that day, so we had some great laughs throughout his stay thanks to her and our nurse, Gina.  Other visitors included:  Ms. Mary, Amy (BFFK), and Kim (US from HEMOC floor).  The time went by fast thanks to all of our visitors.  Ethan is one loved little boy!

Another added bonus was that I was able to have my most favorite sandwich for lunch and dinner:  Einstein Bros. Tasty Turkey.  YUMMMM!!!

Should have results soon… 

It's POTTY time!!!

So, when I got to school to pick up Ethan this afternoon, Ms. Mary tells me that she is taking Ethan swinging because he just went, ahem AND the other ahem, IN THE POTTY!!!! WHAT!??!!?!?

How freakin' cool is that!? Was it a fluke? Maybe. I am not so sure though, because everytime we mentioned how he went potty in the big boy potty, he smiled with pride. Now the challenge of trying to potty train a child who doesn't communicate when he has to go to the bathroom....

Ethan's Birthday Weekend

Ethan's birthday weekend actually started on Friday afternoon when I took a cupcake cake from Sam's Club to celebrate with Mrs. A.'s 2nd grade class. All of the kids made Ethan homemade birthday cards, which was so sweet. We will miss those kids very much when we have to switch schools next year!

As I previously posted about, we went to Furman University in Greenville, South Carolina to have a little bit of Christian rock-n-roll fun for Ethan's pre-birthday festivities. All of the bands were great, of course! It was the last night of the tour, so there was some pranks between the three bands, which is always fun to see.

Ethan did not nap during the 3-hour drive down to Furman, so he wasn't exactly in the mood to party, until....our dear Disciple friends played Ethan's FAVORITE song- "Wait is Over". Scott scooped Ethan up from his chair and they did their thing, and as you can see Ethan perked up and had a great time!

Once Skillet was playing (oh.my.gosh. AWESOME, btw), Ethan decided that his fun was done. He kept signing "DONE" and "BYE-BYE". Too funny. I do believe he was communicating a sentence right there!


We had a great time, got to chat with Kevin for just a minute- bless his heart, he did not feel well and yet, he went out in front of that crowd and gave it his all. We hope that you are feeling better now that you are back home, Kevin!!!

Even though the picture of the band (Disciple) is blurry, I love the black and white effect.

Yesterday, for Ethan's birthday, we took him to the mall to go bungee jumping (different kind of bungee jumping!). I had taken him before and he loved it, but we had a different operator yesterday who just "didn't get it" and would not listen to me. Ethan freaks out at first, but as soon as you get him jumping, he LOVES it. Oh well. Then, he rode the motorcycle and had fun pushing the button that had no purpose.



Then, I promised my birthday boy some ice cream. Off to Cold Stone we went. He got a kids cup of cake batter, which consists of a large scoop. I got a banana milkshake (yum!) and Scott was the good one and opted out. Ethan does not understand that ice cream has to come to an end. It doesn't matter if he is full, it doesn't matter if he has a frozen tongue or brain freeze, he will still cry as if his world just came crumbling down because the ice cream is gone. Proof to the left. I will share a pic of him from 5 years ago and do a side by side, maybe tomorrow, for you to see how things just don't change. LOL. Bless his little birthday heart- Momma shared her milkshake with him too. Until that was gone and we then saw the same "end of the world" face.


We were invited over to Karen's for dinner, which was a treat. She also bought Ethan a cupcake cake. Another thing that Ethan does not understand is the capacity of his little stomach. He would have continued eating cake just because it was there with a total disregard to the fact that he was so full, I do believe stretch marks were beginning to form on his belly! Ethan really did enjoy everyone singing Happy Birthday to him, though.





Another birthday treat for Ethan was to take a bath in Momma's jacuzzi tub. He loves the bubbles from the jets and it relaxes him. I let him take a nice LOOOONG bath and then we snuggled when he was wrapped up in his towel. After a soothing baby big boy massage, he was all dressed in his Spiderman jammies and ready for bed. At close to midnight, he was still restless in his room, so he ended up staying in our room....again. Good day for my big
8 year old!

GOOD NIGHT!

Kamrin's Going to Europe!

MySpace Countdown Clocks

And, she has a VERY long layover in North Carolina!!! Guess who is going to get to spend the day with her sister!?!?! ME!

Kamrin will be on her way to Europe for the month of June, along with her boyfriend, Kyle, and his parents. I will go get them at the airport, bring them back home, hang out, have lunch, and take them back to the airport so they can head on out to IRELAND! That is their first stop. I think that they plan on going to England, France, Austria, and Germany. How cool and exciting is that!?!?!?

Happy 8th Birthday, Ethan!!!

My dear Ethan,

Today is your 8th birthday! You have been really coming into your own special personality over the last year! :-) You are learning how to manipulate communicate your wants and needs. Your laughter and smile is still all I need to get me through my day.

This past year, you had your tethered spinal cord released and you have really taken off with your walking skills! You are very stubborn- something that I don’t think will go away any time soon, but that’s ok because it also gives you and extra ounce of determination.

I remember when I turned 8. My Aunt Cindy took me to the Merced Mall to get my ears pierced. I wonder if you will remember your 8th birthday like I remember mine. ???

Your Daddy and I love you so much! We both hope that you have a wonderful birthday! You make us proud everyday!

I can’t believe that you are EIGHT YEARS OLD? Where did that baby go?

Wow. You are a rock star!

Love you my sweet boy!

~Momma

Birthday Concert for Ethan

We are about to head down to Greenville, South Carolina for a concert.  We are going to see Disciple and Skillet.  I have never seen Skillet before, but we LOVE Disciple- that includes Ethan! 

 

This is our birthday gift to Ethan.  Scott and I think that it’s funny that we have all been to a Disciple show on or around our birthdays now- Scott went on his birthday in 2007, mine was this year, and now Ethan tonight. 

Hope we have a good time!  It’s a long drive, so we better!  :-)

Jackson turns 14!

Yesterday was Jackson's birthday! He turned 14. I wonder if there was any celebration for him on the farm? I miss this boy so much!!!

Children’s Flight of Hope

I am in the process of getting Ethan admitted into the intensive feeding therapy program at the Children’s Hospital of Philadelphia (CHOP).  I have been trying to not stress too much about how I am going to get there until I have to, but today I found out that I don’t have to stress at all!!!  God is so good to us!

Children's Flight of Hope is a non-profit flight agency that has agreed to transport me and Ethan to Philadelphia at no cost!!!  This is such a huge blessing to us to have this option available. 

I wasn’t overly enthused to have to tell them my weight and jazz, but it is a 6 seater Cessna (just like in the picture) and weight is kinda important. 

I know that I need to write about the feeding program more, I have just been so tired! 

Pet Peeve #????

I think that I may start tagging these...LOL!

Ok, Pet Peeve#??? is: BLOCKING AN INTERSECTION

My friends, just because the light is green does NOT mean that you drive into the intersection and block it so the light doesn't turn red on you back at the intersection line. You block traffic and end up making the traffic jam WORSE. What if an emergency vehicle needed to get through? Think about it...

Fundraiser for Aidan

My dear friend, Lynda (Ross) Beers, is a Pampered Chef consultant and is currently holding a fundraiser to help with Aidan's medical costs. The fundraiser has been running since the beginning of the month and I have just not had a moment to post it here. It will run until May 30th.

Here's how it's working...orders are placed for Pampered Chef merchandise and once the total gets over $600, Pampered Chef will donate 15% of the sales back to The Fredette Family. PLUS, Lynda is donating her commission as well. With the orders, Pampered Chef's contribution, and Lynda's commission, we are looking at about 35% give back to Kalen, Melissa, and Aidan!!!

How to order:
Go to www.pamperedchef.biz/lyndabeers
Go to our products
Click how to purchase
Enter Lynda Beers in the host name

From there it'll take you to the catalog. Please have items shipped directly to you.

Please, pass this info along to everyone you know! Pampered Chef is a wonderful company with FABULOUS products! Any amount is helpful! The current party total is just under $500, so we are almost there to getting PC to add the 15%!!!

*************************************************************************

Lynda and I were talking about how great it is to be from a small town in moments like this. We were close friends with Kalen in high school, but haven't been in touch for probably close to 10 years, if not more. That doesn't mean that we love him any less though. Our friend is hurting because his son is hurt, therefore we hurt and we want to do anything and everything that we possibly can to help ease that pain. Please repost on your blog, or link back to me- whichever...I would just love for this order to even surpass the $600 and exceed our wildest expectations!

I know that Kalen and Melissa appreciate all of the support that they have been given, either by prayer or by blog visits to offer encouragement to them.

Thank you AGAIN for your help/support for The Fredette's!