Just for fun...

Another thefted idea from Christina over at Kwisteena's Kraziness. I can't come up with these things on my own.

Answer the following questions:

What is your first name? Kristen

What is your favorite food? pasta

Where did you go to high school? Mariposa County High School

What is your celebrity crush? Johnny Depp

What is your favorite drink? Iced tea

What is your dream vacation? Fiji

What is your favorite dessert? Cheesecake

What do you want to do when you grow up? Mommy

What do you love most in life? Life

One word to describe you. Nurturing

What is your favorite flower? Tulip

What is your favorite fast food place? In-n-Out

Now, go to Flickr and put your answers in the search engine. Choose one picture from the first page, copy the URL and then put it in the mosaic maker here. Here is my mosaic creation:

My Family

I saw this on Renee and Christina's blogs. I am a copycat. LOL!

Create your own family sticker graphic at pYzam.com

Bad Mommy!

On Friday and Saturday night, I had the pleasure of caring for a beautiful little 5-month old little girl with Down syndrome named Elizabeth. Her parents got in touch with our local Ds support group asking for a babysitter while they were in a wedding. I, of course, responded. :-) You know I never back down from a chance to snuggle with babies if I have the chance!!!

Well, I had to take Ethan with me on Friday night because Scott was networking at the downtown gallery hop. Ethan did not nap Friday (big mistake) and he was Mr. Crabbutt once we got to the family's hotel room. Elizabeth was tired from her day of meeting loved ones and off nap schedule so we snuggled on the chair/ottoman combo when she fell asleep. Ethan did NOT like Mommy snuggling Elizabeth! I told him that Mommy could hold him too, so he climbed up with us and immediately tried to take Elizabeth down! Seriously, Ethan went psycho-baby on me. He tried to grab her, pinch her, pull her off of me...It made him even more mad that Mommy was not letting any of that happen! And, Mommy put him back on the floor after that behavior. Bad Mommy!

Ethan gave me attitude all day Saturday as well. Boy, does that kid hold a grudge! I would have to say that he gets that from Gramma. (Yes, Mommy- I just called you out! LOL!) Today, he was a little better with me, but not by much. He was much happier with Scott today. Scott does not snuggle with other babies, whereas Mommy goes to hotels to watch little princesses and takes care of the babies in the nursery at church. Bad Mommy!

Thanks to Evelyn & Christian for trusting me to care for Elizabeth- what a joy!!! It was my pleasure. Let me know if you are ever back in this area and I will be sure to look you up if I am in yours!!!

Much love to all!

Brags & Ramblings

Yesterday's Vitalstim session went really well! Ethan even tolerated some oral motor exercises! Today, he was just feisty. He tried to rip off the tape and stickers numerous times, so we had to put on the arm restraints. :-( I hate that. Our sessions are done for the week and hopefully next week just gets better!

Surprisingly, Ethan took 8-10 unassisted steps on Monday too!!! Yes, that's what I said. He was so happy doing it too. If I wasn't the one he is walking to, I would be taking some video. I will work on that. I am so proud of him! He has come so far this year.

I am feeling better but still icky if that makes any sense at all. I coughed so much the other day while visiting with Karen that she insisted on giving me an albuterol breathing treatment and sending it home with me. I will be using it again soon.

Karen and I went up to Olivia's gravesite on Monday. Karen had new flowers to place. It really is still so unreal that Olivia is gone. I look around Karen's house and just keep waiting for Olivia to come home. Even being at her gravesite, looking at her headstone and footstone, I am in denial that she is there. We buried her there. No, that was a bad dream. We really didn't bury this beautiful 8 year old princess, did we? See- denial. I told Karen that these emotions that I have are not ones that I can usually express to anyone. She asked me why not. The truth is that Olivia's passing took a major toll on me. I loved her instantly and I cared for her as if she were my own. Of course, my grief will never compare to Karen's, but it is still something that takes over me some days. People don't understand how I can have such a connection to a child that wasn't my own. I should be "over it" by now. Well, I am not over it and I don't know if I ever will be. I know that she is in a better place and I know that I will see her again, but the fact that she is gone is still so heartbreaking.

Vitalstim Therapy

Today was Ethan's first session. He hated it. I started to cry with him at first because it was so awful. He scratched his neck so fast as soon as it was turned on so he could tear the probes and tape off, but he eventually was just plain ol' mad. He went for a full 45 minutes today without any oral motor exercises. Tomorrow, we go longer WITH oral motor exercises. Wish us luck! Only 19 more sessions to go!!!

MTV Movie Awards

Ok, anyone who really knows me knows that I love Johnny Depp in Pirates of the Caribbean. I had always liked him and thought he was good looking, but since Pirates, he is now at the top of "my list". He came onstage of the MTV Movie Awards tonight and I think I panted like a teenage girl. I would like to thank God for creating such a beautiful man. Darn, he looks good! He was back to his 21 Jump Street look. Yummy.

Cards from Students for Pennies for Patients

Ethan was selected as an honored hero for the Leukemia & Lymphoma Society's Pennies for Patients Campaign for this past school year. I have received a few packets in the mail with letters from students wishing Ethan well. Yesterday, I got a package with a stack of hand-made cards from, what appears to be, 2nd graders- maybe. I wanted to post what they wrote.

Get well soon Ethan, Dear Ethan, I hope you get well soon and I wish you the best and I will keep you in my prayers. From: Antwan

Get Well Soon! I hope you get well soon. From: Kaylee

To Ethan:
From: Tyler
Ethan I hope you get well. Get well soon Ethan. Get well soon Ethan. We are colleting money for you Ethan. I hope you get well soon.

To: Ethan
I know life is touf but you will live throught it. I love riding in my wagon to. You ride safe on your wagon.

To: Ethan
From: Alex
Hope you get to filling better. You like to make others smile. Well I can't wait tell you smile because you got better.

Ethan
Dear Ethan, I fell so sorry for you . My name is Makenzie. I like to play the piano and swimming too.
From: Makenzie

To: Ethan
From: Sam
I hope you feel better soon. So you can do the things you like to do more often. I know you will. Don't worry.

Ethan
Hi Ethan, My name is Morgan and I live in C*****ville, NC. I got to ********* school. I hope you get well!
From: Morgan

To: Ethan
Dear, Ethan I feel very sorry for you because of your cancer. It's amazing you know how to play the piano.
From: A.J.

Ethan
I am sorry for what you have. I will pray for you to get better. Continue to play the piano and have a lot of fun playing it too. Swim and have fun too. I hope you get better.

Get Well Soon! Thinking of You.
Dear Ethan,
I love to smile too. I was thinking about taking piano lessons but my mom never did put me in it. I hope you know I am thinking of you. Hope you feel better soon.
From: Ranlyn

To: Ethan
From: Andrew
Hope you feel better and get well soon. Dear Ethan, I hope you get well soon. Get well soon. Get well soon. Get well soon.

From: Rex
Dear Ethen I hope you get well. Than have a good life. Get well.

Get well soon Ethan. I wish you the best.
From: Joey

I hope you get well soon. One day when your out of the hospital to go to school tell your friends on what happened.
From: Nathaniel

To Ethern
Get better from your cancer so you can continue to get better.
From: Devonta Get better

Get well soon Ethan. I hope you can fight the kansar Ethan. Dear Ethan, I hope you get well Ethan because I would ready like to meet you. I read about you and what you like to do. You seem like a very nice kid. I love to play with cars and play a piano. Get well soon.
Sincerely, Manny

Hi Ethan. You watching t.v? Turn it off cause I got you a card!! :-) :-)
Do you miss outside... ...well were giving penies so you can come outside more! So say hi to your swim suit! Here's what I'm giving... God loves you and will never let go!

Get well soon Ethan!
Dear Ethan I hope you get better and play the pino and siwm and swing agin. Get well soon.
Yours sencerly, Brody

Get well soon.
To: Ethan
From: Aaron
Get Well Soon.

Ethan Your A Star. Get well soon Etan.
From: Joscelyn

Ok, now how sweet are those!?!? If my scanner was better, I would scan all of them. Some of the drawings are fabulous! Lots of them have swings, piano's, and wagons because Ethan's poster says "My name is Ethan and I am 6 years old. I was diagnosed with Acute Lymphoblastic Leukemia on February 13, 2004. I completed treatment in September of 2006 and I am currently in remission! I enjoy swimming, dancing, playing the piano and riding in my wagon and swinging! I also love to laugh and make others smile".



The one about watching TV has to be my favorite. The drawings are great and it was so imaginative. I left in the spelling errors on purpose because I find them to be as innocent as their heartfelt cards. These are so special. Thank you to all the children who wished Ethan well! You're the best!

Sinus Infections Suck

And, it's kicking MY BUTT! It all started with some drainage and laryngitis a couple of weeks ago, but I felt fine. Fast forward to now- I am completely full of gunk and my head and ears are about to explode in between the coughing spells. I know it is a sinus infection- I have had too many to count. Now, I am just trying to fix it on my own. My friend, Heather, gave me a Neti pot to use...I think it's working, but it has made things worse in order to make them better. :-(

Happy Birthday, Ethan!!!

Ethan,
Today, you turn 7 years old! Where did the time go? There is just something about seven that seems like such a big boy age...next thing we know, you will be TEN! You had rockin' hair today and an attitude to match! No one will ever be able to hold you back. You do things on your own timing and when we all figure out that that's ok, then you are going to soar higher than you already do. You make me proud everyday, even when I may not tell you. You are an amazing boy and I am incredibly honored to be your Mommy. Love you forever. ~Momma

Today has been fairly quiet. Ethan and I went to church, came home for lunch, and he snuggled up to me to nap. I love our naptime. Call me lazy if you want, but I cherish our cuddle time. Today, I didn't even sleep; I just watched Ethan sleep. I reminisced of when he was born and how far he has come. He really is an amazing boy. He has overcome and survived so much. We need to remember that more when the days of frustration overcome the reality that he is still here with us. Keep fighting, Ethan because that way I know that you are strong and nothing will keep you down! (no pun intended) :-) I think that we will take Ethan for an ice cream dinner or something. I remember that my parents would let us have banana splits for dinner once a year...I think it's a tradition that I plan to continue.

I have been fighting allergies/sinus/cold whatever you want to call it for going on a couple of weeks. I do believe that I just blew my nose into a spell of vertigo. My ears went into a fog and I felt like I was going to pass out from the spinning. It was bad. My ears are trying to open up now and the spinning has tapered off. Thank God!

Have a great Memorial Day Weekend everyone and don't forget to pay respect to those who have fought for our country and gave their lives doing it.

Walking Inspiration

Ethan stopped having any desire to walk a few weeks ago. We have had our hands up in the air not knowing what to do or why he suddenly has the lack of desire to walk. Well, today- we found his inspiration! Enjoy!


Walking Inspiration

Now what?

I ran into Ethan's ENT yesterday and he does NOT think that Ethan's recent behavior change is due to the ear tubes. Grrrrr, Grrrrr, and more GRRRRRRRR!!! I have so many different doctors/therapists telling me that this MEDICAL CHANGE has really affected Ethan. That medical change would be the tubes! I feel like we are going in circles and grasping at straws. We have an actual appointment tomorrow with the ENT, so expect us to be discussing this in detail!

On a better note, Ethan seems to be doing a tad better with things. He has been giggly and happy in the morning, which I love, of course! We are just kind of taking things very slow right now. I was feeding him breakfast this morning and after a few bites, HE went to grab the spoon to self-feed assisted. That is a big step! We will take it! So, yes- we have started over basically, but he's getting there again.

Kids Eat Clinic

Yesterday, Ethan's teacher accompanied me and Ethan to his feeding clinic appointment at 4pm. We didn't leave until after 6pm. We covered lots of ground. Here's how it went down...

Ethan refused to sit in the regular chair, so he had to then sit in the modified seat with tray. When it came time to eat, he pushed the food away and also tried to grab the plate and throw it. He also immediately went hand first into the tastefully crafted butterscotch pudding and proceeded to- finger by finger- remove said pudding into his mouth. Mary and I had hoped that maybe he would showoff and begin to self-feed again...nope. There will not be any self-feeding any time soon, unless he decides to.

The ear tubes have really thrown him for a loop. It has affected his senses as a whole, his equilibrium, his swallowing, his desire to self-feed...but by golly, there isn't any fluid in there! Yes, I am rolling my eyes because if it's not one thing, it's another. We have to start all over with self-feeding. Oh well- we move forward.

Ethan is continuing to lose weight. It has been concerning me for a while, but for the first time, it is concerning to a doctor too! Over a year and half ago, Ethan weighed 42 pounds. His BMI was even a tad high for his age and height, so we cut back on extra calories like the Carnation Instant Breakfast (CIB) that we put in his milk for that little extra. Six months ago, he was 35 pounds. He was holding steady at 36 pounds the past few months until recently. Yesterday, he was 33 pounds! When people see him after not seeing him for a while, the first comment is "Oh my, look how much he's grown!!!". Well, we thought that he was just growing taller without gaining the weight because until a few weeks ago, he was walking a significant amount in his walker. Well, he has grown a centimeter in six months- ONE CENTIMETER! There is something not right about that. So, we are going to recheck his thyroid. His labs have also been ordered to check everything- kidneys, liver, sodium, proteins...The blood test should be able to determine how he is absorbing his nutrients. I mean, Ethan eats. It may be a struggle and I may have a handful of my own hair pulled out afterwards, but he does eat. Keep you posted on that...

So now, we get to give a serving of "Yummy Pudding" and "Yummy Oatmeal" to Ethan everyday. The pudding basically consists of a pudding packet with whole milk, CIB, oil, and something else. The oatmeal is just an instant oatmeal packet made with half and half instead of water. Ok, that's like an extra 400 calories per day!

Now, the good news! Ethan has been on a waiting list for Vital Stim Therapy. A very long waiting list. Well, he's in! We begin therapy on June 2nd. Ethan will HATE it. It will be TOUGH. It is not guaranteed to work. But, it COULD work. We HAVE to try. It is very intense- hour and a half sessions, three times per week for about 5 weeks. Fun times- wish us luck!

That's how those 2 hours+ went down. Ethan hated me afterwards. Isn't it great being Mommy?!?!?! :-)

Ethan's IEP today

I think that Ethan has a great team on his side! We are not inundating him with goals that he cannot achieve, we are going to concentrate on specific tasks in order to get to the next level. Not to say we weren't doing this before- we were just trying to do it all too soon. Ethan needs concentration on a certain task in order to grasp it.

His latest behavior problems also come into play with how we will approach therapy over the next few weeks. We will be concentrating on oral motor skills and putting his walking on the back burner. We know that he can walk, so it's not like he will be losing too much skill there. We do, however, need for him to keep his hands out of his mouth in order to achieve any goals in ANY other area.

Ethan is incredibly stubborn, so this is not an easy job for any of us on the "team". Wish us luck!

Happy Mother's Day!

I would like to say HAPPY MOTHER'S DAY to all the Mommies out there! I would also like to take a moment to reflect on those who have lost their mother's or even their children. My best friend, Karen, lost her mother a couple of years ago and her precious Olivia in February. Today, is especially difficult for her, so if you could say a prayer for her and any other who is mourning today, I would appreciate it- thank you.

Happy Birthday MOMMY!

I couldn't do the formal shout out to my Momma for her birthday yesterday! So, a day late- here it is!!!

Happy Birthday Mommy! We love you! We hope your day was great!

Ethan...grrr.

Ethan has been an absolute pill for the past couple of weeks. He has gone backwards developmentally- it is quite frustrating. Even school is on the one-way ticket to Wits End with me. I have been given some ideas as to what could be going on with him. Lots of things lead to his ear tubes. One idea is that he has had fluid in his ears for so long that now that they are draining out, the overload of hearing sense has thrown him back into "comfort zone" which equals not walking and hands in the mouth. We are having such a time with him and it very well could be a toddler-like behavior, but the timing is quite coincidental. I have calls into doctors and he sees the behavioral pediatrician on the 19th for feeding clinic. We'll see...pray for us.

My First Open House

Last night, I held my first Open House for Uppercase Living. Five of my friends came and we enjoyed each other's company while looking over the beautiful expressions that UL offers. I am especially excited to see the custom expression that we made for Olivia. Thanks ladies for coming and supporting me!!! *muah*

A couple of friends were with me until almost midnight because of a horrible storm that was ripping through our area and then camped out around their homes. This was tornado-type weather and there was even one spotted not that far away from here. So, we just chatted away with lightning as our background.

CONGRATULATIONS RENEE!!!

I would like to congratulate our friend, Renee Garcia over at Life With My Special K's for winning the Military Mother of the Year Award!!! Renee is a mother of four children, wife to Frank, advocate for Down syndrome...just to name a few. Frank is currently in Afghanistan serving our country in the Army. This is Frank's second tour over to the Middle East. Renee and Frank's third child, Kennedy, has Down syndrome and also went through the nasty "L" word.

You can read about Renee's win here. CONGRATULATIONS RENEE!!! YOU DESERVE IT!!!

Reece's Rainbow

My friend Meredith over at Cornish Adoption Journey adopted two beauties from Ukraine over 8 weeks ago. The adoptions were made possible because of Reece's Rainbow- a Down syndrome adoption ministry.

(copied from Meredith)
"There are children all over the world in need of a family, love, and basic care. Many of these children have disabilities and are placed in mental institutions at the age of 4 or 5. In these places the children rarely live past the age of 10 and most die within the first year. Will you help to spread the word to raise funds and families for orphans with disabilities? Please visit Reece's Rainbow and see how your donation- however large or small- can help a child find a family. Look a little harder and you just might find the calling for one of them to be your own.

If finances aren't a way you can help, please look across their photos and say a prayer that each one will find their forever family soon. Reece's Rainbow is an International Down Syndrome Orphan Ministry which also advocates for orphans with other disabilities across the globe. Please "grab this button" and post it with a message to your own readers as well. It starts with ONE, but then grows exponentially. You never know, your own post may be one that finds a family for one of these precious children."

Grab This Button
Yes, those two beauties are Emma & Micah. Before and After so to speak. I recommend visiting Meredith's page to see the amazing things God has done for their entire family.

Feeling Nostalgic

I don't know why, but I have dug out a few baby pics of Ethan. As I took him to the doctor yesterday for what the doctor feels confidently is "just a virus" (grrr...), I looked at Ethan and just reflected on what a big boy he has become! Now, he has lost more weight- down to 34 pounds now. Part of that is because his appetite was junk the past few days, but as of breakfast this morning, it's picking back up thanks to strawberries & cream oatmeal and blueberry milk - yes, blueberry milk. I found it at the grocery store yesterday and just thought that it would be something that Boog's would enjoy. Momma was right ;-).

Anywho, I thought that I would share a couple pics of when Ethan was little. This was, of course, before digital cameras so the quality is not that great.



My favorite is the one of him laying down in his crib looking up at his mobile. I thought it looked like he was praying. So sweet...