Busy, Busy Day!

1) Dentist: x-ray shows that the two baby teeth in the front do not have much of a root, so we can try and wiggle them out ourselves. My neighbor is a dentist, so she will pull them for free if we need her too. :D We like free...a lot! I am still so amazed how quickly his two permanent teeth are coming in behind the baby ones! I would get a picture if I could, but he barely lets me look at them. I might be able to scan his x-ray later...

2) Oncology clinic: Ethan's counts were wonderful and his IgG levels were fantastic as well! *Thank you God!!!* We can stop his Dapsone after tonight (a med to keep him from getting a nasty pneumonia that he has taken for 3 years- Leukemia treatment is officially OVER). Ethan will still go in once a month for a long time to check his levels, but overall, he is just doing wonderfully!

3) Surgery consult: *sigh* The nissen is closer than ever to becoming a reality. The surgeon wasn't as rushed to see about it getting done UNTIL he saw the most recent pH probe results that show significant reflux while on meds. I am going to talk with our geneticist first before making any major decisions. We just really do not want to put Ethan through a surgery if he just needs his body to recoup after chemo. We just aren't sure how much time we will need to give him. We should be able to have his port removed at the same time if he does go through with surgery, so that will hit two birds with one stone. The port removal will be a big thing for me. It will be great for him to not have that thing in his chest, but it is still frightening to me to have it taken out...

See...busy day!

Ethan's GI Follow-up

I took Ethan in for his GI follow-up last week to discuss the Ph probe results. Well...Boog's still has "significant" reflux- both acid and non-acid- while on the max. dose of reflux meds. But, since the endoscopy did not show any major esophageal (sp?) damage, dr. is not so quick to refer surgery, which I can appreciate to a certain extent. We covered a lot of ground and I think that we will be getting to the bottom of it all within the next 6 months. We are being referred to the pediatric surgeon- Dr. Turner, the same dr. who put in both of Ethan's ports- for a consultation. At least we will have everything in front of us to weigh over. I feel it in my gut that the nissen fundoplycation is going to be necessary, but I could be wrong. It could just be that the chemo really messed him up in more ways than his gross motor skills. :-(

Say a prayer for Ethan that his little body recovers from the nasty effects of that poison we had to put into his body. He has already made some great improvements!

The Sweetest Moments

Yesterday, when we got home from church, Ethan was tired and ready for a nap so I layed down with him. He put his arm around my neck as we were laying on our sides toward each other. He leaned over and gave me a kiss, kept a grin on his face and fell asleep.

I tell you, my heart about melted. It was as if he was telling my "Momma, I am so happy that you are here with me" without ever saying a word.

Oh how I love that boy!

He's getting stronger!!!

Happy New Year everyone! Disclaimer: Do not be surprised if you get a holiday card for Valentine's Day! Yeah- still need to be addressed and mailed...my bad!

Ethan is doing very well! He is getting stronger every day and gaining some great skills! All of his bloodwork is coming back great and his smile continues to make anyone's day!

This video is of Ethan out walking last weekend. He is managing his walker very well as you will see! We just could not be more proud of the accomplishments he is achieving...


Walking to my Haircut!

Today, we went to have Ethan's pictures taken. We forgot his glasses at home in the rush to get out the door this morning...I was SO mad! Ethan has had a runny nose for a while, so his little nose is a bit raw, but overall the pictures are cute.


Today, Ethan decided that he was going to feed himself. This does not happen very often as he knows it comes quicker if someone else does it. Enjoy the video...


Self-feeding

I think that's about all lately...it has finally turned Winter here. Some of the trees and flowers were confused by all of the 70 degree weather and started to bloom! I want those 70's back!

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!