The Clock is ticking...

Yep, the biological one. Bad timing. Well, it's been ticking for a while but it's really been bad the past few weeks. I want Ethan to have a sibling so bad. I want it for him. I feel that he deserves it. I can't imagine my life without my sisters and brother and I think that Ethan having a sibling would do wonders for him. Have you noticed the I and not we? Of course, me being unemployed now doesn't help things!

I never thought that my children would be so far apart in age. I mean, only having Ethan during the time of our move and his leukemia treatment was a huge blessing. We were able to concentrate solely on him. Scott feels that if we have another baby, we are taking away from Ethan. He deserves all of our love and attention. So, I am torn because that then makes me feel like I want to take away from Ethan. That is not the case!

I watched some friends in church yesterday with their new baby girl. I watched them cuddle and smile at her. I almost cried. I want it again.

Part of this is selfish for me. I miss being pregnant. I want to experience it again. The other part is definitely for Ethan.

The Memory Keeper's Daughter

The Memory Keeper's Daughter aired on Lifetime last night. It is based on the novel by Kim Edwards about a doctor whose wife gives birth to twins, one of them having Down syndrome. Based in 1964, the doctor told the nurse to take the baby to an institution and then proceeded to tell his wife that the baby died. The nurse does as asked, but once she sees the horrific practices towards the children/adults at the institution, she leaves and takes baby Phoebe with her.

I have not finished the book yet and I now look forward to comparing the TV version against the novel. I feel that the movie captured many points that we even continue to battle today. Our children with Down syndrome ARE capable, they ARE beautiful, they ARE smart, they ARE aware! Our children with Down syndrome are not sentenced to a death sentence- they LIVE! Our children with Down syndrome are not mongoloids- they are OUR children.

Overall, I was very pleased with the movie (minus the awful hair style/wig that they had on Phoebe!). I recommend that everyone watch it/read the book.

*Important*

My friend in Tennessee posted a very well-written blog that I think is important for all to read. She has a wonderful way with words and maybe she can help you understand why language is so important to us. Renee's Blog- Life With My Special K's 03/29/2008 "Why It Hurts"

Slideshow from Trip

So, I tried to post a few pictures directly and it was trying my patience, so here is a slideshow. Enjoy.

WE ARE HOME!

Ethan and I returned back to North Carolina after an almost two-week stay in California with my parents. We were greeted at the airport by Karen, one of my best friends and Olivia's Mother for anyone who has been reading earlier posts. I have never been greeted with such enthusiasm and excitement before! She ran to me and Ethan like there was no tomorrow and then we just held each other and cried. We both really missed each other!!!

Amazingly, our luggage made the flight with us. Our red-eye flight out of Oakland left over an hour late which left me about 20 minutes to get from Terminal C in Houston to Terminal B. You guys didn't know that I could run that fast, did ya?!?! LOL! I literally arrived at the gate as the airline attendant was saying "If you have a ticket for Raleigh/Durham, you should be ON THE PLANE NOW". So, for our luggage to make it too was miraculous.

Neither Ethan nor I slept hardly at all for over 24 hours. Ethan cried and fussed a bit, but because he wanted me to hold him before take-off and we couldn't do that until we were mid-air. Overall, he was a good traveler on the way home.

After we left the airport, we met up with Karen's cousin, Shannon, at the Cheesecake Factory (yum, yum, and more yum, yum's). It was a great tour of the mall parking lot until we found it. Fun times...

Scott was home when we arrived home. Ethan was SO excited to see our house. It was the funniest thing! He saw the house and just got the biggest smile on his face! I wish that I had the camera out for that one. We basically got our stuff inside and collapsed. Well, I did anyway. Scott and Ethan had playing to do. I will post those pics a little later after they are uploaded to the computer.

The trip was good. I didn't feel good a good majority of the time due to my allergies and some things happened that totally crushed me emotionally, but I was home, got to see my family, party with my sister, Kamrin, for her birthday and go back to Yosemite with Ethan. The weather was beautiful, never even needed to bust out my jacket or big sweaters.

We were able to see some friends along with some of Scott's family. We missed lots of people which is sad, but also got to see people that we didn't think we would or could, so that was an added bonus.

I am so happy to be home. I LOVE MY BED. I was able to sleep in today, which was beyond lovely. Of course, Ethan was in his room, taking his toys and chucking them over his gate onto the hardwood floors. Thanks Son.

Pictures to follow soon...I hope. :-)

8 more days

And Ethan and I will be on our way to California. We have a stop in Houston, so we will also get to see Kimberly, Steve, and Joel. I have never looked forward to a layover so much in my life! :-) We will get to spend almost 3 hours with them- YAY!

We will then be in California for about two weeks. We haven't been back in close to two years, so it will be interesting to see how things have changed. I plan on going to Yosemite so Ethan can be there. My mom says that there is plenty of snow, so Ethan will get to play in the fun white stuff. I hate packing for cold weather though- we usually travel during the summer so we don't have to deal with bulky stuff.

Scott doesn't get to come and we are really bummed about that. But, maybe it will be a good respite for him too.

Ethan and I will get to meet Christopher, my brother Kolt's baby, for the first time. Ethan will have a playmate for the weekend! I am hoping to be able to spend some quality time with my nephews and niece too. Two weeks is going to go by way too fast.

Olivia has been gone for two weeks and two days now. I definitely have my bad days. This will never be ok.

We went to Atlanta over the weekend for a Downsyn meetup. It was much smaller than last year's, but we had a good time. Some friends let us stay with them which was much more relaxed and good for Ethan. He was able to play with Natalie who is almost two.

I have been going crazy getting Ethan consults with different doctors. I am going to have him see a neurologist about tethered cord/spina bifida occulta. Let's just say, a hairy back on a 6 year old is not common...

The next doctor would be the cardiologist. I would feel a LOT better if I know that the holes in his heart are CLOSED. He has not had an echo since he was around 2 weeks old. All the doctors are confident that his heart is fine, but for my peace of mind (since our luck is not so great lately), I would just like to get it cleared up for sure.

Scott's sister, Cindy, may be coming to visit us next month! We are so excited about that too! Lots of stuff going on. Trying to keep my head on straight...

The Princess Party That Never Should Have Been

Yesterday, we laid our dear Princess Olivia to rest. So many people came yesterday and the night before to be with Olivia one last time. People came from other states to see her. She was such an amazing spirit that touched so many people all around the globe. The flowers that were sent were amazing.

After Olivia's beautiful service, we released pink Princess balloons in her honor.

Photo and video editing at www.OneTrueMedia.com

I miss her terribly. My heart is aching. As I try to encourage Karen to rest, I find myself not being able to do it either. After laying down last night around 2am, I found myself awake at 2:30 from a nightmare. I was hoping to dream of Olivia dancing and singing along the streets of gold. Maybe today's nap will bring that dream to me.

One of our darkest days...

February 13, 2004. Ethan is diagnosed with leukemia. It is a date forever etched in my brain. Today, he is a growing, healthy little boy. He amazes us everyday- even with the newly emerging terrible two behavior!

I am still numb about the loss of our sweet Olivia. As I make a couple of phone calls for Karen to inform of Olivia's passing, it still seems so unreal. The last dr. I spoke to said, "OH, I hate to hear that"...I said, "I hate to say it". Karen and I have gone to the funeral home the past couple of days to see Olivia. This may seem creepy to some, but it is done out of pure love. Last night, we even dressed her in her beautiful gown. Her hair is curled and she has her special bow in. She is wearing her new ring and bracelet. We still have to take her necklace and a couple of her belongings that will stay with her forever. Karen and I must seem so odd to the funeral home director...we were fixing makeup (originally, she was a little too orange), putting on lip gloss, and picking fuzzies out of her hair. These are things that we did when she was alive and it just seems right to be the ones to do it until the end.

Karen was able to pick Olivia up and hold her before laying her into her casket. It was a beautiful moment and I am so honored that I could be there with them during that time. I am so thankful to Karen for allowing me to be such a big part of Olivia's life. I just cannot even begin to put into words how much I love that precious little princess. Not loved, love. Love does not die with the person, nor does it fade.

Thank you to everyone who has sent condolences for Karen and Olivia's family. It is so appreciated.

Our loss, Heaven's gain

Today at 4:58 pm, Olivia earned her wings. Thank you God for answering our prayer for a peaceful passing. Our hearts break for our loss. Olivia was a true Princess. She passed in her favorite place- her Mother's arms. I am reminded of Steel Magnolias when Shelby passes and M'Lynn says how it was truly a beautiful thing, being able to be there when that precious child was brought into the world and also when she left this world. There is no bond as that of a mother and child.

I loved Olivia from the first time I met her. There has always been something about her. She was what love is. SO many people love her- people who have never met her or Karen. It is just a testament to how someone can speak volumes without ever saying a word. Her smile lit a room. Her love was unconditional.

I knew that God brought me to North Carolina for a reason(s) and I truly believe that one of those reasons was so I could know Olivia and Karen. I have been so incredibly blessed to have been a part of their lives. I always made it a point to come over to the house to visit at least once a week so I could see the Princess. We read stories, sang, and had great talks. Olivia gave the most wonderful kisses- kisses I will forever treasure. I will never forget the time that Olivia raised her arms out to me for a hug or when she would shake her head NO when it came time for me to leave. Of course, she usually didn't mind if I took Ethan home because, bless him, he never did have a good sense of where his feet were flying and would step on her *sorry Livvie*.

When I lost my job last month, I told Karen that she had full coverage (Posse members made a pact for Karen to never be left alone during this time) and she made a comment about how maybe that's how God intended it. As the weeks unfolded, I really began to believe this. I was used in a certain way to be able to help care for Olivia and Karen. I am so grateful for all of the extra time that I had with Olivia and I thank Scott and Ethan for being so wonderful during this time too.

There were times over the past few weeks that I had hoped that we were all in a bad dream and this really wasn't becoming a reality...if only. Olivia defied all odds and definitely did things on HER time. She was surrounded by loved ones until the very end and she will FOREVER BE A PRINCESS!

*Livvie...sweet baby girl. I miss you terribly already. While my heart aches here on earth, I also smile with joy because I know that you are dancing and singing through the streets of gold. You are whole and perfect. No more seizures, no more tubes, no more pain. I will continue to take care of Mommy, just like I promised you. I love you sweet Olivia, forever and always!*

Please continue to pray for Karen and Weldon as life as they know it has just been turned upside-down. Thank you.

No AVM

Yesterday, I had the cranial arteriogram done. It wasn't that bad. They said that I would be consciously sedated and not remember anything...yeah, I remember EVERYTHING. Go me. The whole catheter in the groin was a ton of fun. The contrast (dye)was even better- it made my brain hot and crampy. Then, when it was all done, the doctor had to keep pressure on the incision site for over 10 minutes. I was sore last night from all the mashing with pressure. When I got back up to my room, I developed a migraine. I was given some tylenol (not sure if it had codeine or not, but I was asleep the rest of the day). Sleeping everything off helped ease the nuisance of having to lay completely flat for 8 hours.

So, the good news is that they did not find an AVM. AVM's can be very serious and dangerous. They did find that I have narrow vessels transporting blood and I hear the "turbulence" of the blood flow. Well, I have known that it is blood flow that I am hearing, so that was nothing new. What we do about it now is up to the ENT again. I have no clue as to what he will recommend. It will likely be a "live with it" situation. So, while it is good that there isn't an AVM- if it was, at least there would have been treatment options.

Thank you for the prayers about the procedure, for my job, and for Olivia & Karen. It means so much to me. Olivia's seizure medicine was increased yesterday, but before anyone gets too excited...seizure meds have some nasty side effects that include respiratory distress among other things. It's like fixing a problem to create another, but everything is done day by day. Please continue to pray for sweet Olivia.

Photo courtesy of Anne Grant Photography

Getting a little nervous

I shouldn't. Tests like this are done all the time. Just the idea of something being threaded all the way up my body is a little creepy. I have Kim's book to take with me and read. God bless my sister who can write me a book for day's like tomorrow.

Finally- someone else heard it!!!

Ok, so for those of you that don't know...I lost my job a couple of weeks ago. Long story short- my friends who I worked for stabbed me in the back. This is supposed to make me happier. Sure it does. I LOVE worrying about how my mortgage will be paid or how I will keep medical coverage for my family. Yep- I am SO much happier now. Enough of that. They don't deserve my energy anymore.

The good news. I went to the radiologist/neuro doctor yesterday for my pulsatile tinnitus in my left ear. I have had this awful swooshing sound in my ear since I was around 8 weeks pregnant with Ethan. At the time, it was just supposed to be excess blood flow that would go away after the baby was born. Nope. Didn't happen. I was then referred to doctors at UCSF. They did lots of tests to rule out a tumor (obviously, I did not have a tumor). But, when they could not duplicate the sound by stethescope, I was blown off and basically told that I would just have to live with it.

I was referred to this neuro dr. from the ENT here in NC. He listened. He could not duplicate the sound either. He recommended a cranial arteriogram to rule out an arterio-venous malformation (AVM). He didn't think that the test would show anything, but we should try. I felt like I was going in circles again. More tests just to be told in the end that I would just have to live with it. I was disappointed and started to cry. (Imagine listening to a baby's heartbeat during a sonogram, close to 24/7 in your ear. Not cool. I love to hear it on a monitor, not in my ear!!!)

Another doctor on the team also took a listen. She stands up and says, "I think I hear it". She then described the sound and sure enough, SHE HEARS IT!!! She listens again, and again. Yep. No mistaking- she hears it! I, then, REALLY begin to cry. Finally- someone else heard it! I am NOT crazy.

Now, the arteriogram is set for Wednesday morning. They now think that the probability of finding an AVM are much higher. I am not looking forward to this test at all. Apparently, they sedate me, put a catheter-type thing in my groin all the way up to my neck and then inject dye so they can see all the arteries in my head. The fun part is after it's all done, I have to lay flat for 8 hours so to make sure the groin incision does not bleed out. All I keep thinking is that I am too young for all this crap!!! (Rheumatoid Arthritis at 25 and this...I wonder if they are linked at all)

Ethan is doing well. It snowed on Thursday and then today, but today didn't stick. Boo. Olivia has good days and bad days. We are just all loving on her while we can and take nothing for granted. I actually need to get ready to head over there.

Christmas 2007

Christmas was so incredibly quiet this year. No, I never put a tree up. Shame on me, I guess. Ethan could really care less right now and Shep always likes the hug the tree and make me think that he is going to knock it over. Ok, ok...next year I will put it up. Can you try to convince Scott to put up the Christmas lights outside? (Yes, he has refused for 5 years now...grrrrrr).

Ethan got the gift of his dreams. Not a red rider bb gun, but a red dirt devil housekeeping set! How exciting!!! I don't have to clean anymore!!! Ethan will take care of it! LOL!!! Check him out- he has been carrying this stuff around the house since he got it!

Photo and video editing at www.OneTrueMedia.com

We hope that everyone had a wonderful holiday. I am still so homesick. May will not get here quick enough...

Today is my grandmother's birthday!!! HAPPY BIRTHDAY MOM!!! WE LOVE YOU!!!

Just cuz...

Christmas has come and gone. Nothing exciting to report except that Ethan LOVES his new Dirt Devil kit, complete with mini-mop, scrubber, duster, and broom. He has been carrying those things around since he got them. I think that I may have a clean freak on my hands! I guess that's kind of a good thing for me! LOL!

Ethan's big boy tooth is already coming down. He's not wasting any time with this snaggletooth business!!! He does have a little bit of a tummy bug, but overall is acting great.

We hope that everyone had a wonderful holiday. Lots of love always...

It's Christmas Eve!

And, I have close to zero Christmas spirit. No tree. Only a present or two for Ethan. I just refused to go into further debt for something that Ethan has no interest in yet. Sad? Yes. But, it is what it is. Our Christmas present to our family was to take the money and pay bills. Yeah us. Then, maybe we can visit home sometime in the Spring. We miss everyone back home so much.

We hope that all of our family and friends have a fabulous Christmas filled with love. (For anyone wondering- I will mail out the Christmas cards when I can- hopefully this week.)

Here's a picture of Ethan's missing tooth.


And, I just added these to the computer. Ethan was all smiles after school one day a couple of weeks ago...

Ask and you shall receive, Renee! :-)

Well, I came to write shortly after Kamrin left from her 10-day visit last month, but found myself crying to hard to complete the post. I had not seen my sister in over a year and I just didn't want to let her go. It was an extremely difficult day for me to have to walk away from her at the airport. Then, I think of my friend Frank who is getting ready to head back to Iraq- leaving his beautiful wife and four children. I could really get on a plane any time that I want (or that my credit card will allow!) and here our soldiers sacrifice their time with loved ones in order to ensure our freedom...God Bless them.

I thoroughly enjoyed having Kamrin here. We had a real Thanksgiving dinner- I even cooked a turkey! Try to not pass out there! Granted, it was a little turkey- only 6 pounds- but, it was more than plenty. I borrowed my neighbor's Wii game and we had quite the Wii workout! We also enjoyed a first together...BLACK FRIDAY! We left the house at 5am to go buy a treadmill. How crazy is that!?!? I guess when you save over $1200, it kind of seems worth it. So, we went, bought, came home, and went back to bed!

I have had a tattoo since I was 18 that I pretty much had grown to hate. I wanted it removed and then covered, but was told that the tattoo would have to become huge, so I opted against it. Well, I met a tattoo artist that just so happens to have a child with Down syndrome. One of her specialties is covers and she told me that she would have no problem covering my old tattoo. Of course, the cover would make it bigger, but not too much. I thought it would be fun for Kamrin to experience the new tattoo with me, so I made the appointment for when she was here. So, now I have a beautiful tattoo that means so much to me. When I get the pictures uploaded, I will post one. It is now three tulips and a butterfly. It is very symbolic. The tulips represent Down syndrome (3 chromosomes on the 21st). Tulips are also my favorite flower and they are grown in Holland. If you have never read "Welcome to Holland"- Google it and you will understand the deeper meaning behind the tattoo. I am also one of three sisters (another reason for 3). The butterfly is so I always have Mariposa with me (my hometown in California, meaning butterfly in Spanish). It is almost all the way healed now and I love it (Thank you Mitzi!!!).
UPDATE: Here's the before and after pic.


Kamrin and I went to the Biltmore Estate in Asheville, North Carolina. It's an amazing place...I can't imagine living in a place so large- especially way back when.


While I thought that Kamrin being here would take care of any homesickness I may have had, it actually made it worse. But, that's ok because I got to spend time with my sister, who I love so much. Ethan was so sad to see Aunt Kamrin go too, but gave her a great kiss good-bye...


Ethan continues to do well at school. Everyone loves him! He also continues to have a little love affair with Kayla, his one and only girl classmate. But, she is just as smitten with him and everyone knows it! It is so flipping cute. Ethan comes home with beautiful artwork almost every day and his walking continues to improve- even though we still have some attitude problems and laziness. We are getting there though. Ethan is moving up on the VitalStim therapy waiting list (http://www.vitalstimtherapy.com/ud.asp). There is no guarantee that it would work, but we have to try. Ethan's dysphagia is not getting any better and he runs the risk of pneumonia with every swallow. We will likely be getting the call in January.

I saw an ENT again for this darn pulsatile tinnitus. I basically have a wind tunnel in my ear. I have had it since pregnancy. All the tests at UCSF were a waste of time almost. They basically thought that I was imagining it. So, this ENT thinks that I have an AVM (Arteriovenous Malformation). I am still waiting on what further tests I have to have done or if there are any solutions that don't require surgery into my head (unless of course McDreamy wants to do it! LOL). I was also very sick a couple of weeks ago. Glad that is over with!!! UTI, pneumonia, flu, mono...fun times.

Scott has been keeping busy with work and Wake Forest soccer. He had a season's pass, of course. Well, Wake made it into the NCAA Championships which took place yesterday in Cary, NC. Scott and I- or should I say, Scott and his BIG A** Flag- made it onto ESPN2 about 7 times. Scott was the only one with a big flag and ESPN loved it. We ended up winning the game against Ohio State 2-1. It was freakin' freezing, but fun.


And, drum roll for the big news of the night!!! Ethan lost another tooth!!! I was flossing his teeth and could tell that one of his top teeth was starting to bleed and VERY loose. So, after wiggling it for a few minutes and fighting off the strength that is Ethan, we pulled it out. He had grinded it down to nothing- bless his heart. At least you really won't see a snaggletooth because you don't see his upper teeth when he smiles. HAHA. This growing up stuff is too much for me to handle!!!

I think that's enough for now, what do you think? I have been working on the Christmas card. Maybe this year I will actually mail them!!! Sorry- I will really try!!! Until next time...

Just a little update

Ethan has had a cold for the past week, so he has had his ups and downs, but more ups I would have to say. He is continuing to do well walking - even though he was a tad lazy about it today...

We took him to a pumpkin patch last weekend and then went trick or treating with Theresa and the girls. I have taken him out with the girls before, but I have never had him actually get candy from anyone. I figured that he was not going to be eating it, so why would I? So, this year I had a change of heart. He was all dressed up and walking house to house just like every other kid. So what if Daddy consumed all of the candy in less than 24 hours? Ethan was just like every other kid!

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On to the funny of the week. We now have new incentive to make sure the kitchen is clean and the dishes are done!!! Ethan's new obsession is standing at the kitchen sink and grabbing whatever he can! It is quite comical and yet a true realization that Ethan is just growing everyday and doing more and more! Whoever thought that a child getting into something would be a good thing? All you moms of children with special needs know exactly what I am talking about!!!

Photo and video editing at www.OneTrueMedia.com

That's it. Kamrin is coming to visit in TWO WEEKS!!! We are SO excited! (except for the fact that I am now required to cook a turkey...something that I have NEVER done!!!). I have a surprise for her and if you know what it is, shhhhh...don't tell! ;-)

Ethan's Walking Progress

I am so overwhelmingly proud of this post! Ethan has progressed more in the past two months at school than he did all of last year! He LOVES his class. He loves the one and only girl in the class, Kayla. He LOVES his teacher! He is very loved at his new school, just as he was at his last school. But, change has been great for Ethan and I know that he will be walking independently soon! As you will see from watching the video...

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Port NO MORE! & Happy Birthday Ang!!!

Today was a huge day. Ethan's port-a-cath was removed. We arrived at the hospital just before 6am this morning. It was just me and Ethan. He was so giggly and happy. He was given some Versed to relax him before they took him from me to the OR. Once in the OR, they would use the mask to really put him to sleep and then they started the IV.

This surgery was so minor in the grand scheme of things, but so major in terms of finality and emotion. I have had some irrational fear that taking the port out would allow the leukemia to return. So, I finally succumbed to the request of our HEMOC team to have the thing taken out. Ethan did well with the surgery- it went perfect according to Dr. Turner. Post-op even went well! Besides being quite drunk from the meds for a couple of hours, his recovery is going better than I could have asked for. Back to school tomorrow and back to work for me!!! Yeah!

So, here you go- look to the left on Ethan's chest and you can see the bump of his port under his skin. The scar on the right is from his first port that was removed in July 2004.



And, here is his port. This little piece of metal and plastic supplied life to Ethan. Yes, this is the actual port that was in my baby's heart.



Amazing. Just amazing.

And, finally...HAPPY BIRTHDAY ANGELA!!! We love you!!!

Other birthdays that we failed to mention...

Sept. 4. HAPPY BIRTHDAY TO OUR FRIEND, LORI!!! We love you.
Sept. 12. HAPPY BIRTHDAY TO MY BROTHER, KOLT!!! We love you!!!
Sept. 17. HAPPY BIRTHDAY ERYLEIGH MERIDIAN!!! We love you sweet princess.

AND, a very special HAPPY BIRTHDAY TO Andrew Parks Moreland on September 19th! I was blessed to be present for your birth and we just couldn't be happier that you are here!

Hugs, Smiles, and Blessings to you all.

Whoa, it's been a while!!!

Ok, so...a lot has happened over the past couple months, but since I have not been diligent in writing, surely I will forget something and so I will just summarize.

Fourth of July, we went up to Bruce & Paula's house at Lake Glenville- what an awesome time we had!

August 2-5. Ethan and I flew to Kansas City, MO for the NDSC national Down Syndrome convention. This year was tough for me and it's my third one. Thank God that Scott's mom, Lynda, joined us there. She saved my sanity by watching Ethan one night so Robbin and I could go out! Ethan had a meltdown from too much stimulation- I don't know. I just know that he turned into the spawn of Satan and I about lost my mind. We got to meet some wonderful new friends and see some old ones too. All in all, we hope to go to Boston next year!!!

August 3. HAPPY BIRTHDAY TO SCOTT!!! He was able to travel to Greenville, SC to see one of his favorite bands, Disciple. He had a great time and was even able to hang out with the band afterwards in their tour bus! Such the groupie!!! LOL!

August 5-9. Ethan and I were then off to Houston, TX!!! I met Kimberly through Downsyn.com and she quickly became one of my closest confidantes and friends. I love her Joel. Besides my allergic reaction only 2 hours or so into the trip and my emotional roller coaster coming off of KC, the visit was lovely and we can't wait to see them again!!!

August 6. HAPPY BIRTHDAY EMILY HOPE!!! We love you!
August 7. HAPPY BIRTHDAY CINDERS!!! We love you!
August 9. HAPPY BIRTHDAY JAIDYN LUCAS!!! We love you!
August 17. HAPPY BIRTHDAY SHEP! & LYNDA! & MIKE!!! We love you!
August 19. HAPPY BIRTHDAY ASHLEY ANNE!!! We love you!
August 20. HAPPY BIRTHDAY KRISTOPHER!!! We love you!
August 25. HAPPY BIRTHDAY SEBASTIAN HARRISON!!! We love you!
(Yes, lots of b-days in August!!! Kristopher is actually my nephew's middle name and it is spelled with a "C", but my brother has requested to spell it with a "K".)

My new job is going well. I really couldn't be happier. There is a lot to learn and I feel that I am not learning quick enough, but I know that the office is just going to be running wonderfully very soon!!!

Ethan was supposed to start Kindergarten last week, but he decided that he wanted his name to be "Ferris". He spiked a fever on Monday morning, requiring a trip to clinic. Result? Ear infection. Ok, he rarely ever gets them but that's ok. Antibiotic please...thanks. Tuesday...hospital calls at 6:45 am. Yeah, that's never a good sign. Positive blood culture = automatic admission. So, Ethan missed his first week of school due to an ear infection gone really bad. We were in the hospital Tuesday - Saturday and we were a bit rusty at the whole routine since we hadn't been in since November (PRAISE GOD!). So, take three on Kindy tomorrow!

I know I have forgotten something and I will try to keep the blog up better. Life has been BUSY!

Much love to all. *Muah*

But, I'm NOT sleepy Momma!!!

HAPPY BIRTHDAY DARLENE!!! WE LOVE YOU AND MISS YOU SO MUCH!!! *MUAH*

I know that I have been slack on posting lately, and I promise to give a more substantial update soon. But, until then...here is a little montage from last night.

Last night Ethan decided that he didn't want to sleep, so I got in bed with him to snuggle. Well...he then turned into Mr. Giggles! The video at the end is black, but you can hear him.

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*sigh*

I thought that I would spare everyone the day by day details...until now- simply because I need to get it out before I completely lose my mind.

May 8th - Pediatric Opthamologist

Ethan needed his eyes dilated which made him EVER so happy. Even better was the actual exam. He wouldn't keep his eyes open (because he was throwing a fit!), so they had to then put in numbing drops and then the prongs to pry and keep his lids open (ok- eyes are beautiful WITH lids!!! Totally creepy without!!!). That was torture. Long story short- prescription changed (more astigmatism) and he may have a cataract. We just got his new glasses in the other day...very cute.

May 9th - Potential School Visit

Ethan graduates from his school this year (June 1st) and his placement next year has been the source of anxiety for me. Another long story short- Ethan lost close to three years of his life to cancer and the treatment that was the good/evil of it all. Good of course that it kept my baby with me, evil because of what it did to him long term. For three years, we missed vital therapy sessions and he is now so far behind, it is very discouraging for me. So, I visited another school that he could attend and was pleasantly surprised. It is a self-contained classroom BUT the inclusive opportunities are great! And, the teacher does what she can to get that inclusive time. It is very hard for me to think of Ethan as being severe & profound, but that is what he is right now by all definition in correlation to his age. So, at least I didn't leave this meeting in tears like I did the other school- I was a mess!

May 15 - The Dreaded IEP/Transition Meeting

Good News/Bad News...Bad News first.

The majority of Ethan's development falls below one year. He is especially behind cognitively. I am having a very hard time knowing that Ethan is turning six in a week and is still developmentally a year old.

Good news...Ethan has made TREMENDOUS gains since he finished treatment! He is getting stronger every day and now it is not necessarily a matter of not being strong enough to do something, but him just taking the easy way out and then being stubborn about it. Boy, there is no argument that he has nothing wrong with his stubborn gene!

We have a 99% chance that we will get to go to school at the school I mentioned above. It is really what is best for Ethan, even though it is classified as a severe & profound classroom. And, I don't know about all the other states, but here in NC, the children with special needs have to be labeled (I hate, hate, hate this!). Ethan has been labeled TMD (trainable mentally disabled). Trainable? Like you train a dog to do tricks? See, I hate it.

Also, the school does not have after school care. This means that I need to find a daycare. Guess what? No one wants to watch Ethan! Why? He is school age and not potty trained, oh and has special needs. It was amazing how they were willing to help until I mentioned those facts. That is my new challenge.

I didn't cry at this meeting either. It was very strange. Our PT actually even congratulated me on it- LOL! I just want so much for Ethan and all of this just breaks my heart into a million pieces.

May 16 - Pediatric Dentist

Always a jolly time at the dentist! Especially for a kid with sensory issues...Good news- no cavities! And, his gums look better from the last time due to our great torture- I mean brushing sessions. Two of his 6 year molars are IN! I didn't even know it! And, his other two on the top are right there waiting to bust through. X-rays show that he is missing his #20 permanent molar, BUT not to worry they say! That is the one that gets pulled for braces anyway! HA! Oh, and he has worn his front teeth down so much from grinding that they are now calcifying and turning a beautiful shade of yellow.

May 18 - ENT/Audiology & Unplanned trip to the Pediatrician

Because Ethan is 6 and has NO words, I really wanted an ENT/audiology work up. Well, ENT shows that Ethan has a beautiful infection that has green gunk piled up in his ears (not infected yet though) and it's the same junk coming out of his nose. His throat is also fire red (not strep though). This explains Ethan's recent eating events...So, due to the fact that Ethan's ears are not in any condition to be processing for an audiologist, we had to reschedule that. Of course that is how it works since my two in one appointment has now turned into two with two co-pays (grrrrr). So, we now have omnicef and a new script of Rynatan.

I also asked about apraxia. My ENT feels that this is what we are dealing with, but didn't want to tell me until after the audiology report. Yeah us. Verbal apraxia. Woohoo. Looks like I will be waiting even longer to hear Momma...

About the unplanned trip to the pediatrician...this morning when changing Ethan's diaper, his penis was red and had a white, pimple-like bump at the tip. I thought it was just yeast like he usually has after antibiotics, but it didn't come off. It was a white bubble (ew). Well, the nurse wanted to have me bring him in, so I did. Bacterial infection on his little manhood. We had to pop it. Poor baby- it hurt him so bad. But, the pressure needed to be released and the PA needed to culture it. The good news is that the omnicef will now treat his upper junk, chest junk, and now the lower junk.

That's all...I think. I am proud of how far he has come, that is not it- I am just upset that he has had to go through SO much and it is just a reminder to me everyday of what he did have to go through. Have I told you lately how much I hate cancer? Congratulations if you made it this far!

Ethan's Make A Wish Trip (LONG)

Sunday, April 15th

The day is FINALLY here! Ethan's wish is granted!!! The limo service arrived at our house to take us to the airport at 4am. It was raining outside, so we woke Ethan up as soon as we were ready to leave. We got him in his carseat and he was so in awe with the lights on the limo's ceiling that he never went back to sleep. Can you believe that I did not get a picture of the limo? What was wrong with me? I just never got out of the limo once I had Ethan fastened safely in his seat. Of course, Ethan did not go back to sleep- too excited I guess! The Make-A-Wish team met us at the Greensboro airport to help out and they brought Ethan a gift- a travel Magna Doodle. We didn't have any wait getting onto our plane and we immediately boarded and didn't have any problems with Ethan's equipment. Our flight into Orlando was bumpy and Ethan loved it. While Scott and Grandma were getting nauseous from the bumpy ride, Ethan is giggling with delight! It was hilarious! I have video. :-)

We were greeted at the airport in Orlando by a Give Kids the World volunteer. She helped us with tips on the parks and also helped us get to our rental car and got us on our way. Even though I knew she was going to be there to meet us, my eyes started swelling up with tears the minute I saw a sign saying "Give Kids the World Welcomes Ethan Faulkner". Plans to meet up with Downsyn friends fell through due to thunderstorms and pouring rain. We spent our day at Give Kids the World village relaxing. Ethan spiked a 102 fever for unknown reasons. The fever was knocked out with Tylenol and we are hoping for good health for the rest of the week.

The villa here at GKTW is beyond my expectations of what I read on the website (www.gktw.org). Seriously, it is the size of my first apartment! Two bedrooms, two bathrooms (one with a wheelchair accessible shower and a jacuzzi bathtub!), living room, kitchen, dining area, and front porch with two rocking chairs. We were in the cul-de-sac and it was very peaceful.

Monday, April 16th

Today we started our day with breakfast in the village. Ethan is doing so well with his self-feeding. After breakfast, we left to go to Disney MGM Studios to meet our Downsyn friends for lunch. Our friends, Diane & John, have their own T21 Princess- MaryEllen. Ethan just loved Diane! He gave out hugs and kisses like candy! While there, we went to the "Honey I Shrunk the Kids Exhibit" where Ethan enjoyed going down the slide that came out of the film roll. We had our 1st character meet with Mickey. The Disney staff treated Ethan like a prince. They saw his Give Kids the World button and they immediately took him to a private one-on-one meeting with Mickey and JoJo from JoJo's circus. Scott and I were able to go on the Aerosmith Rock n Roll roller coster. That was really awesome - we had so much fun!!! Then we came back to the village and had naptime and dinner. We then went back to MGM to watch Fantasmic. Scott and I then went on the Hollywood Tower of Terrors. The signs in Florida suck - we have done a thousand U-Turns!!! We finally got back to the village tonight - Ethan is in bed. We are heading to the Magic Kingdom tomorrow.

Tuesday, April 17th

Today, we started our day with a wonderful breakfast in the Village. Ethan has been such an amazing eater, I am just so proud of him! We were then on our way to the Magic Kingdom! I am always in awe of the building structures at Disney! The creativity and magical feeling whenever you even step onto Disney grounds is one that you treasure for life and I hope and pray that Ethan remembers this special trip that was just for him! I started off by buying Ethan some Pirate Mickey Ears. I was so amazed that Ethan kept them on! I am telling you now how much Ethan grew up before our eyes on this trip!

We did not waste any time to get Ethan on some rides! First up was the teacups. Daddy and Grandma cordially opted out of the spinning because they're WEAK! LOL! Mommy happily took her little man spinning. He grabbed the wheel and everything! I broke my sunglasses on the teacups, so I then had to fork out some bucks for some in the park! There was NO way I was going without sunglasses for the rest of the beautiful Florida, sunny day! Next was Ethan's first roller coaster ride! Mommy rode in the front car while Ethan and Daddy sat behind so pictures could be taken. Then, when we arrived back at the exit point, the Disney employee asked if we wanted to go again...of course we do! Ethan loved it!

The princely attention continued as we made our way through ToonTown (much smaller than Disneyland's) and were put ahead of the line to meet Stitch from Lilo & Stitch and then as we were walking past Mickey's house, the employee asked if Ethan would like to meet Mickey...of course he does!!! So, we went through Mickey's house and then had our own special time with Mickey and no one else was there but us and Mickey! We were then off to ride Dumbo and the Adventures of Winnie the Pooh. By this time, it was lunchtime and we were trying to figure out what we could feed Ethan. We brought his food chopper, but he is still not a chicken fingers/hot dog kid, so we were looking for a better variety. When we looked at the map, we saw that Cinderella's Royal Table had American food, so we headed on over to the castle. Did we notice the $$$ by the name in the book? No. Did we know that CRT is a character dining experience that requires reservations? No. Scott went up to the host and asked to verify that they were full for lunch to which the host responded, "We are, but not for you". We were then given our reservation, taken to have pictures taken with Cinderella and have a WONDERFUL lunch with Snow White, Princess Aurora, Fairy Godmother, and Belle. What a blessing...

After lunch, we headed over to the Wish Lounge specifically for wish families to come and rest. Ethan was able to take a nap for over three hours! What a great place! After nap, we continued on with rides- including Splash Mountain, Thunder Mountain Railroad, Flying Carpets, and Pirates of the Caribbean (yes, my man Capt. Jack was there!). We ended up watching the fireworks from the parking lot because Ethan was SO tired, but all in all a very positive and productive day for our little man!

Wednesday, April 18th

We're off to SeaWorld! We were really looking forward to seeing the dolphins, sea lions, and whales! We pet stingrays, Scott actually even fed them, pet the dolphins (my favorite part!!!), and watched a few shows. We also saw the beautiful Budweiser Clydesdales! They are such an incredible animal. Scott and I were really looking forward to seeing Ethan's reactions with the animals at Sea World because he really loves animals, but because he could only really see the majority of them from a distance, he got bored with it all quickly. Grandma's highlight was the Clydesdales as she loves horses. There was a mime at the sea lion show that was hilarious and then the show was great too! I just love sea lions! We were ten minutes too late to get in to see the Shamu show which bummed us out, but we took pics from the tank and Ethan really enjoyed that. We had seen everything at Sea World, so we decided to head on over to...

UNIVERSAL STUDIOS! There really was not much for Ethan at US. We took him on E.T. the ride and the Woody Woodpecker roller coaster. Then, we went to see the animal actors show. Ethan was treated like a prince once again and was given a one on one meeting with the pug from Men in Black! The pug was a little weirded out when Ethan wanted to touch him, but a little guidance from his trainer was all he needed and all was well! We were going to go over to the Islands of Adventure (another US park), but the parks closed at 7pm when we thought that they closed at 10pm. Oh well- Ethan was beyond exhausted anyway since he did not get any nap. So, we left US and headed out to find some good dinner. It was nice to sit down at dinner and not worry about getting back out there! We ate, went back to our villa and relaxed.

Thursday, April 19th

After some time in the village, it was back to Disney! We had originally planned on hitting up Animal Kingdom, Epcot, and the Magic Kingdom, but because of Ethan's lack of interest at Sea World, we opted out of Animal Kingdom and went to Epcot and the Magic Kingdom again. I never, ever thought that I would be standing underneath the Epcot landmark, or big golf ball as I kept referring to it as! It really is a magical place, Disney. When we first arrived at Epcot, we saw some metal plates etched with pictures on them as part of the "Leave a Legacy" walls. We decided that Ethan's wish trip should definitely be etched forever, so we had his picture taken with Grandma. We will get a letter with the picture in 6-8 weeks with a location of where Ethan and Grandma's picture is so if we ever win the lottery and are able to return, we can go see his picture. Ethan's highlight at Epcot was definitely the interactive Turtle Talk with Crush from Finding Nemo. I have it on video. It was so cute, we all laughed! There is also a ride there called "Soarin'". It is a simulator-type ride that makes you feel like you are flying over some beautiful scenery, one of which included my "home"- Yosemite. That was a highlight of my day. The biggest highlight actually came from being in the store to buy some t-shirts and souveniers. There was a crystal corner where you can have your 3-D picture lasered into a crystal block. We had one done of Ethan in Hawaii back in 2002 and it is probably one of the most priceless items that I own. Well, I asked how much it would cost to have the smallest crystal done and the man told me $100. As, I was trying to bargain with him, he saw my Make A Wish button and then says, "Would you like for me to call my manager to see if we can give one to you for free?" ARE YOU KIDDING ME? Of course I would like that!!! Well, manager said yes and even said yes to a bigger crystal. Ethan was very tired and a bit grumpy, but we were able to get him still enough to get the scan done. Now, I have two priceless items that I own. You can see how his face has changed and he is still just the most handsome little angel ever. :-)

Off to the Magic Kingdom again and immediately to the Wish Lounge for nap! Gosh, that is the best thing. Nap time is over, so on to more rides!!! Here comes It's a Small World (much less extravagant than Disneyland's), Peter Pan's Flight (Ethan LOVED), Mickey's Philharmonic, and the Go Kart cars. The coolest encounter happened at dinner. We were getting ready to leave when I heard a mom go up to a hostess and ask if they had any bibs. When the hostess said no, I asked Scott if we had any spare Bibsters left. We had ONE left and I took it over to the family. They were very thankful and I looked over to their little man who needed the bib, and low and behold, he also is blessed with an extra chromosome! WOW! Honestly, I did not see him or that he had Down syndrome before I headed over- all I heard was the need for a bib! We enjoyed our time with our new friends! We both said that it was not by accident that we met.

Ethan was pretty much "rided-out" by the end of Thursday, so we said good-bye to the Happiest Place on Earth.

Friday, April 20th

Today, we are spending our day at the Give Kids the World Village. I have not talked about the village much, but let me tell you- this is the most amazing place. It is specifically for wish families and they provide so much and are not allowed to accept money from the families. There is a carousel, train, mini-golf, ice cream shop that is open from 9am-10:30pm, heated swimming pools, arcade, and fishing pond. There is the Castle of Miracles that has an electronic storybook and coloring book, costume closet, wishing well, pillow maker, toys and books. You cannot help but smile as soon as you step foot onto the grounds of the village.

We were so lucky to have two of my Downsyn friends come to visit us at the village!!! Meredith brought her babies, Kristopher and Brianna, and Jennifer brought David. We had met Jennifer and David (David's dad, Mike had to work) before in Georgia. It was beyond special to have our friends come and be a part of our day in Florida! After our visit was over, we headed over to Cocoa Beach! It was only an hour away and Lynda had never been to the Atlantic Ocean. It was VERY windy, but the scenery was gorgeous! Ethan likes being at the beach a lot! I am sure that it was hard on him to not be able to get down and play in the water! Scott and I had put our shoes down so we could walk in the sand and when we returned, only my pair of flip flops remained. How petty- to steal sandals. Oh well, we had to laugh about it. We also saw the Kennedy Space Center from a distance. That was so cool for me! While I have close to zero interest in space anymore, I used to want to go to Space Camp and be an astronaut, so being that close to anything NASA took me back to my youth.

We had to get back to the village so we could get dinner, go swimming and get Ethan ready for his tuck-in from Miss Merry! Miss Merry and Mayor Clayton are the mascots of the village. Ethan and Miss Merry had a little game going on- it was so cute! Ethan also gave wonderful hugs which is always welcome to anyone who will take them! He is not always so willing to give them out, so he must have really liked Miss Merry!

As soon as Ethan was asleep, our evening turned into packing central. As Ethan's wish was coming to an end, we had to get ready to come back home.

Saturday, April 21st

Today is the day. We must leave our villa and head home. We had one last breakfast in the gingerbread house- I really will miss those little belgian waffles with strawberries and whipped cream, as will Ethan! We saw Ethan's star on the ceiling in the Castle of Miracles and let him run around a bit before heading out to the airport. The miracles continue on...as I checked us out from GKTW, we were given a bunch of stuff, but one special gift was a certificate that allows me, Scott, and our hero Ethan free admission to hundreds of different establishments around the WORLD (yes, I said world) for one year! My mouth dropped and I couldn't do anything but cry. Our trip was more than we could have ever asked for! Ethan was treated like the hero of a prince that he is, we were provided with unexpected gifts, we were blessed with visitors and time with friends, we watched Ethan grow up before our eyes and become such a little young man.

As we leave the trip of a lifetime, we hope that the memories will never leave our minds and that Ethan will never forget how special he is to SO many people! There are not enough thank you's that we can say to our Make A Wish team (Lib, Grant, Brandy -extra kudos to Brandy!!!- and Lauren)! This really was a priceless trip and they made it possible. Thank you, thank you, thank you!!!

Now, back to life beyond the land of a million dreams...

Video & Picture links...

Online photo album found at: http://faulknerfam.shutterfly.com


Ethan's Make A Wish Trip to Florida

Playdate!

Yesterday, I took Ethan to our friend Angie's house. She has two daughters, Sydnie and Saylor. Sydnie is a year older than Ethan and is also blessed with an extra chromosome. I see the love now... hehe. We had a great day- pretty low-key and relaxing. Ethan had the most fun once he was in his walker and able to run down the driveway!


Play Date with the Tate's!!!

Spring is here!

I love Spring. Love, love, love. The leaves are blooming and the color and beauty of North Carolina is definitely coming to life! I love it. My allergies don't like them though and neither does Ethan's. Poor thing's eyes were all watery, his nose was a faucet...bless him with the inheritence of my allergies.

Well, I have been busy with work and school. Ethan is doing great at school and making great improvements. Scott is busy working as well. He busted out the lawn mower for the first time this year- there's just something about hearing the mowers going again...

Ethan had another GI appointment last week and I am happy that his doctor is not so quick to recommend surgery even though the surgeon thinks that Ethan needs the nissen. So, we are re-running tests to see if he has made any improvements.

Ethan has also become quite vocal when it comes to something he does not want to do. He is very stubborn and will probably have a mean streak. He really didn't have a prayer in that department- both Scott and I are beyond stubborn! Ethan is also using his sign more- more times with resistence, but he still uses it some.

We are on the countdown to Ethan's Make-a-Wish trip to Disneyworld! We will leave on April 15th and come home the 21st. Our dear friend Olivia and her parents just got back from their wish to Disney and they had a great time, so we are all a little anxious! I will be sure to post all about it!

Love to you all.

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!

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!!!