Merry Christmas...a day late!

Hi friends! I am in denial that Christmas was yesterday. I am in even more denial that I am turning 30 in a week!

Ethan has been really good considering all he went through over the past few years. He has been sick the last couple of days, but the good news is that his body is fighting everything on its own. Scott and I are having to stay home with him this week, but we can see that he is progressively getting better each day.

We had a quiet Christmas. We spent about 6 1/2 hours at the hospital on Christmas Eve due to fever and junk. Luckily, we were able to come home. Ethan woke up all gunky Christmas day so he got to take a bath in my tub with the jets- he loves it when the jets are on. Then, he really started feeling junky again so he really wasn't too interested in presents, but the montage below takes you through all of it. Be warned- it's long, but you can fast-forward by clicking the bar. The pictures at the end are still my favorite.

Well, holiday blessings to you all.

Ethan's Merry Christmas 2006

Pneumonia....again.

So, please tell me when Ethan is going to be able to just be a kid? A kid without hospital visits? A kid without antibiotics? When will he just be able to feel well again? He literally was off of medicine for less than 24 hours before the fever hit again. The pneumonia is back and worse than before.

Ethan is home & Sister love

Ethan had a great day yesterday and was able to come home last night! He's had a good day so far according to Scott. As long as he has a great weekend, he can go back to school on Monday! YEAH!

Sister Kim's book
Kim called last night to tell me that she received her first copies of her book in the mail yesterday! How exciting is that?!!? It's real now- my sister is in print. Congratulations Kim, I love you and couldn't be more proud of your accomplishment.

Ethan and pneumonia + a journal

Ethan has been in the hospital since Monday with pneumonia. He is having trouble keeping his oxygen levels up about 90%. He has a nasal canula at 3mL and blow-by with full force oxygen. Today, he is having an upper GI to see if he has any intestinal blockage and how far up he is refluxing. It's never-ending with Ethan, but he's still smiling which makes us know that it will all be ok.

Tommy Holt
Last week God got another angel. Tommy Holt. What a sweet boy Tommy always was and what a sweet and respectable young man he became. I have to be selfish here and think that he would have continued to bring smiles to so many people if he were still here. It is just so unfair that his little boy will not grow up with his daddy. I have had a hard time coming to the realization that it was Tommy in that accident. Maybe it is because I am not there to feel the pain so close up. I am hurting over here in NC, let me tell you. I have grown up with the Holt's and even though I haven't talked to them in a few years since I moved, I will always think of them as family and I love them dearly.

My heart aches for Vicki, Jonny, and Billy. The bond that they all have- especially after losing Bobby is one that is admired. It's times like this that I just want to be home. I asked Kamrin to be sure to pass along my condolences to the family and to sign the guestbook for me. I know that she will do that for me.

So, if Vicki, Jonny, Billy, Tennille, or Karrie ever read this- I am so sorry for the loss of Tommy. The last time that I was able to go to Mammoth Pools, Tommy took me out on the boat. One of my most favorite places to be is out on the lake in that boat. To grow up with Bobby driving us out and then the boys taking over all the way down to Tommy made my heart smile. The memories are sweet. I will never forget when Kim brought her friend Michelle Horseman to Mammoth and Tommy had such a crush on her. It was the cutest thing ever. Good times. I love you guys, and as you already know- Tommy will be missed terribly.

Busy Day

Saturday was Ethan's Buddy Walk for Down syndrome awareness. He had an attitude at first, but he had fun by the end of it because we danced!

Then, we were off to Victory Junction Gang Camp for Brenner's Courageous Kids day. Ethan rode a horse, drove a race car arcade game, went fishing, played putt-putt, and then danced some more! Busy, busy day!

Look at Ethan up on that big horse! I can't believe at what a BIG boy he is!!!

This is how Ethan blows kisses to all the pretty girls!
Ethan loved the bunny rabbit!

Master Golfer in Training

We had a great day even though it was a little chilly. Now, Ethan has a little cold that gave him a lovely fever for most of Sunday, but he is now in his room laughing at something. It's a rolling laughter too...

Another Slideshow!

Slideshows!

Ethan did it!!!

After 935 days, Ethan beat leukemia!

I found myself flashing back to that cold February 13th day in 2004 and the past 2 1/2 years overwhelmed me with tears. I cry now thinking about it all. The treatments that he has had to endure; the endless amount of finger sticks and port accesses; the mouthsores; the hair loss; the fevers; the "it's just a virus"'s; the trips to sedation; the CT's; the chest x-rays; the Parvo, CMV and MRSA; the many bags of fluids hung; the miracle mouthwash; the green walls.

But, I also flash back to the love; the support; the guidance; the nurture; the prayers and faithfulness; the meals; the care and dedication to make sure that our baby was well. Our gratitude can never be repaid. What has been provided to us has been a blessing and we are forever grateful. You all opened your arms to Ethan and loved him as your own. When our hearts ached, so did yours. You felt our helplessness. You held us up when we were tired and weak. Thank you.

I never thought that I would want to document this, but the first photo here is the night before Ethan was diagnosed. He was so weak and tired, he fell asleep on the sofa. It wasn't until after I developed the picture that I realized that his lips were purple from the lack of oxygen from low hemoglobin. The next one is Ethan on his way to his end of treatment procedure. He is such an inspiration and will forever be my little hero.


Ethan, Mommy and Daddy are so very proud of you! You have been such a brave boy! Stay strong, stay well, and let's get to walkin'! Love you my son.

The Beach!

Well, we finally made it to the beach on the East Coast! It rained when we were in Myrtle Beach, but by the time we made it to Wrightsville Beach in NC, it was sunny and just beautiful! Ethan loved splashing around in the water and "chasing the waves". He even found a few seashells for us! Enjoy the video montage!


Ethan's First Trip to the Atlantic!

After the beach, Ethan spiked a high fever, so he has been in the hospital since the wee hours of Sunday morning. He will probably come home tomorrow though- not sure yet.

xoxo,
Kristen

NDSC Convention

Hi folks!

Well, I just got back from Atlanta yesterday. I went down on Thursday night and came home yesterday afternoon. I was attending the National Down Syndrome Congress Convention. This is the time that families, self-advocates, and professionals gather together to share experiences and research regarding Down syndrome. It is an amazing time! There is so much love for our children and there is so much desire to make sure that our children are given the same opportunities as "typical" children. I am amazed each time how much the diagnosis of Down syndrome does not get any of these kids down (no pun intended)! If anything, it gives them a stronger desire to prove everyone wrong. Things may take longer to complete, but you know what? They complete it!

So, even though we have hit some major bumps in the road with Ethan's development, he WILL get there because he is determined and strong-willed! Now, I still have a hard time with the fact that one day Ethan will probably want to move away from home. I was able to meet Sujeet and Carrie Bergeron-Desai; a beautiful young couple who were just married two weeks ago. Oh, and they both have Down syndrome. They live in their own apartment in Rome, NY. It's still too soon for me to imagine Ethan getting married, but when you see the love that "Suj" and Carrie have for each other, I know that it is definitely a dream that I am going to have for Ethan.



There is so much, but I am going to leave the technical stuff to me and leave you with a few pictures. The young man is Steven Sauter from upstate NY. I met him and his parents at the last conference and was lucky enough to see them again. Steven is such a romantic and has the sweetest soul. It is always a joy to see him! I am sure him telling me that I am beautiful didn't hurt either! :-) To see other pictures, you can go to our Shutterfly picture album (if you don't know what that is, then you are going to have to ask).

Happy 4th...a little late!

Well, Ethan came home on the 4th, but we skipped all the celebration. He was way too tired and honestly- I fell asleep at 9:30 I think. No cause for the fever except that he was neutrapenic (low infection-fighting cells). Scott and I have taken turns this week by staying home with him. He does not need to be around other kids with who knows what germs until we know that his blood counts are up! But, he has been in great spirits and getting better at pulling himself to stand on solid furniture like the sofa and his crib! He can get up in a second, he just needs to build the strength to realize that he can stand on his own too! It's a fear thing, I think...

I am going in on Saturday to give TWO pints of blood. Yep, that's the good thing about weighing more than most and being tall! LOL! Please give blood. Please. Without blood donations, Ethan would not be alive and so many others wouldn't either, so please, please, please. I hate needles too, but you get over it when you know that you could be saving up to 3 lives! Ok, off soapbox now.

Pirates 2 opens tomorrow!!! I can not wait! I need a babysitter though...CAPTAIN JACK! I am so ready for you! :-) Oh, and tomorrow is also my friend from childhood's big 3-0 birthday! Happy birthday Jen!

Oh, I have had a few people ask...To sum up: I went to the dermatologist (KIM, YOU NEED TO GO TOO!) and she recommended to have 5 biopsies on some moles. I had 3 of them a few weeks ago and got the results yesterday. I have to have 2 of them completely removed because they came back with moderate risk for developing skin cancer. Nothing to worry about. I will have them cut out and be done. Then next week I go in for the other two biopsies and then wait for those results. Fun times...

I think that is all! Phew!

Sorry it's been a while...

There really hasn't been anything exciting to talk about EXCEPT Ethan got glasses! And, does he look ever so handsome! See for yourself:



Now, don't you agree with me??? :-) He is doing extremely well with them. Scott and I thought that he was going to be pulling them off all the time, but he has barely messed with them! When we ask him in the morning if he is ready to put his glasses on, he just gives us a huge grin and then keeps his head steady so we can put them on straight! He is such a BIG boy!

So now that I have started you off with good news, here's the bad: We are getting ready to take Ethan in to the hospital. He has had a low-grade fever since yesterday and today he has not dropped below 101 all day. He looks puny and the doctor thinks that his blood counts may be low coming off of prednison (steroid) and vincristine (chemo). The good news off of all of this is that we went TWO months without being hospitalized AND in less than 8 weeks we will be done with chemo all together and on our road to full recovery! Keep Ethan in your prayers always. He's one tough cookie, but added support is always appreciated!

Before I go, HAPPY BIRTHDAY DARLENE!!! We love you!


We hope that you all have a great Fourth of July!
Much love to you all!
Kristen

California

We are back home and Ethan was wonderful! He LOVES to fly! He is a little weezy today and his temperature is not as low as we would like it, but he is still in great spirits so we run with it!

Thank you to everyone who came to Ethan's party! He had a great day- even though it rained!!! A little rain didn't slow some of the kids down! They still swam! What difference does it make if you are getting wet from the sky or from the pool, right? Ethan is now hooked up for summer! He got some really cool clothes and some books. He also got a neat race car set that everyone loved and I am sure that Ethan is anxious for us to open the box now that we are finally home! Also in the ultra-cool toys was a pirate ship that Ethan loved to take apart! His fine motor skills are improving! LOL!

We had a fun, yet exhausting time. We still missed a few people, but that's how it goes when you are traveling with a little one! Thanks to my best friend Darlene for hosting Ethan's party and supplying our "apartment" for a few days! Another special thanks to my cousin Erin for her generosity, my sisters for their dedication to bringing us home, and Cinders for being there for us when I had an extremely BLONDE moment!

My dad took me and Scott to see Poseidon. It was our first movie outing in over two years! We enjoyed it even though it really wasn't that long of a movie.

One more special thank you...Jessie. Thanks for pushing out that beautiful baby girl so her Auntie could hold her and love on her before leaving! Congratulations Momma!

I'm forgetting something, I know. Please forgive me- I am beyond tired right now! Thanks again everyone! Love you!

I will post pictures soon!

We did it!

Hi friends!

So, I got the official good news yesterday! Ethan gets to stay at The Special Children's School another year! Amen! It really is where he needs to be, so I am overjoyed! Here is one of the reasons why we love it there!



Look how happy he is with the painting! Mrs. Kris (Speech Therapist & friend)and Mrs. Jill (teacher & friend) said that he had the most fun and was using his switch to ask for more paint! I guess he really used some more paint! Gotta love it!

Ethan has another day on his medicine, so he has been feeling good and even eating pretty good! Let's keep this going! We do NOT want to be sick when we visit home next month!

Hope everyone had a Happy Easter! We send many hugs!

Sorry- haven't updated this week.

Ethan is doing better. He went in to the hospital LAST Sunday for fever and bad tummy problems. He was released on Tuesday only to be readmitted on Friday. He has pneumonia again. Why? He may be aspirating his own secretions. I can not thicken that! I thicken everything else, but that is the one thing I do not have control over. Now, this is just a theory. The pulminologist is still looking into reasons.

Ethan's IGG levels were low, so he got some IVIG (immune globulin) the other day and has since perked up. He may even get to come home today or tomorrow- probably tomorrow. Thank you to everyone who has written and who continues to pray for Ethan! Even though he is so close to completion of his treatment, he is still so susceptible to everything known to man. This is the main reason that I need for him to stay at his school another year!

On a personal note for me- the stress of school has been lifted until June. I am taking a break to concentrate solely on Ethan. I won't start back up until after we get back from California next month. While I was nervous to take such a long break, I think it will be refreshing and will also give me and Scott a chance to reconnect.

My friend and neighbor, Paula, asked me to be in her wedding over the weekend. We found her wedding dress over the weekend and now we have to find the bridesmaids dresses. Talk about inspiration to hit the gym!

I think that is all for now. We love you all!

One more LP to go!

LP = Lumbar Puncture, AKA: Spinal Tap

So, Ethan has had his poor little back poked so many times and it is winding down to a close! Yesterday, he had his second to the LAST LP!!! I was nervous to be in sedation with him yesterday simply because of the last incident. Of course, that was silly of me because there was a HUGE difference- we weren't having a scope down his throat into his wide open airway!

The LP went well. His blood counts are good and the bald spot on his head is being tested for ringworm. They said that Down syndrome kids are more prone to ringworm on the head and that it is difficult to get rid of. I said, FANTASTIC! Yippee for us! *slight sarcasm*. The doctor assured us that it was ok for Ethan to go to school. He has had that bald spot for over a month now and has been to school, so he is fine.

We did get sad news at clinic though...Our dear Dr. Chauvenet (an amazing man with an incredible amount of knowledge) is leaving the hospital after this week. I cried and hugged him. I don't know, we just adore him and we are going to miss him. It is hard to think of finishing up treatment without him or even not having him around when we come back for follow-ups. I wish I had taken a picture of him with Ethan yesterday. So to Dr. Chauvenet- we love you, appreciate you, and we will miss you! Please don't ever change! Thank you for taking such good care of Ethan.

That's all for now- I will try and post pictures later. I took some really cute ones of Scott and Ethan reading last night! Hugs!

Great Weekend!

So, since I rarely get to get on here and brag about good things, I thought that I would take a moment...

You know, Ethan had a wonderful weekend! His eating could have been better, but he was happy and lovey all weekend! He even interacted while I read him a bedtime story last night. We read the Three Billy Goats Gruff. Remember that story? Ethan loved the pictures and laughed when I made my voice go deep for the Big Billy Goat Gruff and he chuckled when I made my voice squeal for the Little Billy Goat Gruff. Ethan usually pushes the book away before I can finish the story, so this was definitely a treat for me too!

Ethan is in to everything. He wants to be UP! He is working really hard on pulling himself up on to things. He has the reach of Inspector Gadget! He makes those little fingers stretch! He is such a joy. He wakes up with a smile and gives the best hugs and kisses a Momma could ever ask for!

Good post! :-)

Thank GOD for insurance!

Check out the "Your insurance saved you" highlight!


YIKES!!!

Well...

Here we go again...

High fever, convulsions, cloudy chest x-ray...We will do another CT in the morning.

Ethan had another fever around 3 am, but Motrin took care of it and he hasn't had a high fever since. He is on Vancomyacin (big guns) and Fortaz. He's been in a semi-cheerful mood.

I just woke up from a nap so I feel a little more rejuvenated and I thought that I would come check in with those who care.

Thank you for caring.
All our love,
Kristen, Scott and Ethan
Rm. 907 (336-702-9907)

Sad and Funny- a little of both

See below for my post I made earlier today- before the observation of irony.

Tonight, while I was making dinner (a rare occasion!), Scott asked me "What happened to Ethan's hair?". I thought that he asked what happened to his hand. Long story short, Ethan's hair is falling out again. A huge chunk is missing from the back of his head. I talked to Jennifer (her daughter, Rachael also has Down sydrome & ALL) tonight because Rachael's hair fell out completely again a couple of months ago. She said that it started in patches but was completely gone by three days later. While this absolutely breaks my heart and I am trying to be strong about this because it is just hair AND we have been through this before AND I know it grows back, it is just another reminder that my little boy is fighting the fight of his life.


Now to end on a funny...Ethan really needs suspenders! When he really gets to moving around the floor, his pants tend to get pulled down. So, ladies and gentleman I present to you- Ethan Faulkner, President of the Future Plumbers of America!