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!

Quick Update

Sweet Aidan is doing WONDERFUL!!! It is truly amazing at the progress that he continues to make! Thank you to Renee for posting the prayer request on her blog and for having Kelly @ Kelly's Korner post it on hers. Another special thanks to Jenn for taking the time to go up to the hospital where Aidan was and offering her support in person. I feel that my options are limited in terms of being able to help Kalen, Melissa, and Aidan, but I am a firm believer in what prayer can do, so if you have said a prayer for Aidan and his family and/or posted his link on your blog, please let me know!

The other request that I posted was for the Freeman's. I know many of you already know, but sweet KayleighAnne Freeman went to Heaven on May 11th. The memorial service is tomorrow- please pray for the family.

Thanks again. Much love always.
~Kristen

Aspirate Pneumonia

Ethan has it. We already thicken everything to honey-thick, so I don't know if something just slipped by or if he aspirated his own secretions. Who knows. I just know that he has had a cough for over a month. We went through a bottle of Mucinex and a round of Omnicef to no relief for poor Bub's. Ethan had his 3-month HEMOC checkup this past Tuesday and I asked for a chest x-ray. Even though our wonderful doctor said that his lungs sounded clear, he was happy to order the scan for me.

Dr. McLean called me with the results:

Dr.: Kristen, guess what the x-ray shows?

Me: NOTHING. (Simply because I was SURE that he had junk in his lungs, but the doc's like to try and prove my Mommy theories wrong. I thought that he was going to say "I told ya so- they are clear")

Dr.: Nope. He has a nice section of junk in his center right lobe.

Me: Really? Well, lookie there. Funny how that works when the Mommy is on to something. =)

Dr.: You were right. You followed your instinct and were right again. The area of pneumonia is pretty common for aspiration pneumonia.

Me: Well, that's just great. (can you sense the sarcasm dripping?)

What we have here ladies and gentlemen is what we refer to as an ETHANISM: when nothing makes sense- medically, behaviorally, or developmentally, Ethan will do it HIS way. (3 different docs listened to him and said his lungs were clear.)

So, Ethan is now on a 2-week dose of Augmentin. He still has a cough, but it is getting better, the drainage has reduced greatly, and he is sleeping much better. His appetite is starting to pick-up again, which is nice since he lost more weight and I could see his ribs. =(

You could say an extra prayer tonight that he continues to heal. Thanks.

A Belated Wish for All You Mother's

I had planned on signing on to wish all the wonderful Mother's out there, a very Happy Mother's Day, but I laid in bed with my clingy boy who would not let Mommy even get up to pee without crying. I was happy to be there for him though. I hate that he was not feeling well, but I thought it was appropriate to feel needed by my child on Mother's Day.

Another shout out to my Mom- my Mommy...I hope that you had a fantastic day! I love you so much.

And, to my Grandmothers (Mom & Grandma), Aunts (Shell, Bitsy, Bonnie, and Annette), and Sister (Kim)- I love you all so much. My sincere apologies for not being in touch more often. {To my defense: Aunt Bitsy NEVER returns a phone call!}

Sorry it wasn't more grand for you. I hope you know that the love I have for you in my heart is beyond grand.

Putting It In Perspective, By (my sis) Kim Van Meter

I was all set to write about our recent family vacation to San Diego but since I've returned a few things have happened that make talking about a trip where we ate too much, spent too much money, and played tourist seem completely inconsequential.

The past week could be described as emotionally draining.

Most notably, my mother and 2-year-old nephew were in a horrific car accident that very nearly could've taken their lives if luck had not been riding shotgun.

My mother was returning from Valley Childrens Hospital in Madera with my nephew after being up with him all night for a frighteningly high fever. She was nearly home when her sporty Toyota Celica GT drifted onto the soft shoulder where the sand grabbed her tire and spun her right into a tree. The side curtain and driver side airbags deployed and my nephew's car seat kept him firmly in his seat, but gave him identical seat belt rashes on his little neck. My mom was bruised and battered but alive. A miracle, really, seeing as she'd been pinned in the car and the tow truck driver was amazed anyone had walked away from the wreck.

When I received the call from my younger sister I knew immediately something was wrong. There was on odd timbre to her voice and there was a subtle shake to her words. My sister is rarely prone to dramatics so I knew whatever was wrong must be serious.

When she said, "Mommy and Kristopher were in an accident" I felt the bottom drop out of my world.

My stomach clenched and dread fluttered in my chest as I asked, "Are they all right?"

My sister quickly assured me they were, although the car was toast, but I couldn't stop the shake in my hand as I held the phone.

I called my mom. She sounded lost and frightened, perhaps in shock. You'd have to know my mom to understand how that's not normal. My mother is a force of nature. Always has been. She's strong and formidable. She takes no bull and gives none either. She's not politically-correct (and has no desire to be) and sometimes she says things that require damage control later. But that's just who she is. When I was a teenager she had pens made up that read, "Leslie Van Meter...professional sh*t-disturber. You have a nice day!" and she proudly gave them away as readily as I pass out promotional bookmarks. And really, that's the tip of the iceberg. I could spend all day trying to capture in words the true spirit of my mother and not have enough time or paper. She's complex and amazing; stubborn and loyal - and sometimes maddeningly literal - but several things she is not and that is weak, scared or lost.

Hearing those emotions in my mom's voice triggered a fear so staggering in my own heart that I found myself shaking even harder.

The fear was easily identified but I was shocked at the magnitude: I'm a fully-functioning adult with children of my own yet I'm not ready to face the world without my mother somewhere in it.

Even if she's driving me crazy with her stubborn nature.

Even if she's confounding me with her refusal to adhere to logic and reason.

Even when she continues to put red onions in her potato salad when she knows I hate them.

Do you ever stop needing your mother? I don't know. I rely on my mother in ways that I never paid attention to and I suppose, took for granted. So, I guess this is the message I'm trying to share in a long and personal round-about way. We all have people in our lives - mothers, fathers, cousins, friends - who can drive us crazy but try to imagine how empty our lives would feel if they were no longer in it.

That's something to think about, right?

Who are we without our friends and family? It's a sobering thought...one often confronted when it's too late to tell them how much we love and appreciate them because they're gone.

Sometimes in an instant - always too soon.

My sister wrote this beautifully written article for her newspaper. It really hit a lot of the points that I had planned on writing myself (LOVE the "maddeningly literal" comment...that was perfect!). I just haven't been able to really write it down. So, I choose to plagiarize my sister and add:

Mommy:

You and I rarely see eye to eye on anything, but that never means that I don't love you. I am as stubborn as you (if not more some days!), and I think that I may need to have some of those sh*t-disturber pens made for myself that way people take me seriously. =) I have come appreciate the onions in your potato salad because it's YOURS (the pieces could be smaller though, *wink, wink*).

And, the answer to the question of when you stop needing your Mother? NEVER. I will NEVER EVER stop needing you. We all need you. I'm not ready to think of not having you here for us again, so please get your rest- YOU DAMN STUBBORN WOMAN whom we love so much!!! ;-)

Don't be surprised when you get this t-shirt in the mail:

School pics

I have had so much going on! I will try and post later. In the meantime, you can take a peek at Ethan's school pics by clicking here. Click on the Proof/Purchase Portraits link and enter the password: 797FKKFFIOIS. (3 numbers, the rest are letters)

It took a lot for us to get the smiling shot. I love it though. Ethan is showing off his badge with pride. More on that later...

A very special Happy Birthday!

To my Mom.

A couple of weeks ago, my beautiful Mother was in a car accident that very well could have taken her from us. So today, I am even more thrilled to wish my Mother, my Mom, my MOMMY, a VERY HAPPY BIRTHDAY!

As I tackle photo albums, I am upset that the amount of pictures that we have together is extremely limited. We may just have to work on that...

I wish that I was home today to give you a HUGE birthday hug. Truly, I do.

Happy Birthday today and so many more May 8th's! I love you.

Love always,
Your Yellowhair

(To all my readers: I told you that I was the "white sheep" of the family! No, I am not adopted. Look closely, I am just the very pigment-challenged clone of my Mom, with blue eyes and lighter hair. I used to be able to say blonde, but I can't even fool myself with that one anymore. Boohoo, boohoo.)