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.

Make photo slide shows at www.OneTrueMedia.com

*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!