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!


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