I just posted some other pics and videos today. You have to go to "older posts" at the bottom to see them. Now it's Camp Sunshine time. So, I will tell the story of us finding out Wesley had Fanconi Anemia at the age of one. My dad called me and said he had found a camp where FA families went to once a year. I asked where it was. He said Maine. Shocked I asked where in Maine. He said Casco. A couple of towns from our house so 5 months later we were surrounded by families who had children with Fanconi Anemia just like our son. It was scary, amazing, sad, wonderful and incredible. Where else could we talk with so many people who understood, who we could ask questions, and form forever freindships? Only Camp Sunshine...1/2 hour from our house. We've met families from Argentina, Africa, Australia, Germany, UK, Cananda, Israel, all over the states...I could go on forever. So, we were hooked and look forward to this every year. This has been our 6th FA camp and we've met the most amazing families and volunteers. So these are our most recent pics.

Here is Wesley and Jasper from Australia at a BBQ we had at our house before camp.

Here are some FA kids from Maine, Australia and Tennessee.

This is at camp. It's a balloon release with the names of our loved and lost and prayers for a cure.

Wesley watching.

This is the Tennessee family that came to stay with us.

This is Violet. Her sister Emma has FA. Violet totally stole my heart and I just had to hold her every chance I got.

Here is Emma and Wesley at the party.

Some FA kids and volunteers.

Collin at the party.

Jasper, Emma and Quinny.

Sean and Quinny.

The girls at the dinner.

Quinn, Lauren, and Baylor who is doing great post transplant.

Wesley asleep with his cricket shirt from his Aussie friend, Jasper!

Wesley, Quinn and Alma from Israel.

Sharon (Israel), Brooke (Australia), Sean, Paul (Australia)

I'm trying to get a hug goodbye from Emma. Ralf (Germany) lost two of his girls to FA and is now dedicated to research to help find a cure. We all gave spit samples, mouth swabs, and Wesley gave blood all to help.

One of our favorite volunteers Katie.

Collin with some of the teens in his group. The girl next to Collin lost her sister a year ago. Her family wears pink to honor her. They are from the UK and also have another son with FA.

So, we had an amazing time again this year. We are all still recovering from late nights and early mornings but thankfully we don't have school yet. Some kids had to go back to school the next day. Ugg. That would stink.

The summer is slowly winding down. Quinn and Collin had fun at their other summer camps. I am going to be at a loss when the kids go back to school full time. Not sure where life will take me but I'm sure I will find my way. Wesley is doing well. Never realized he was technically in mild bone marrow failure but I guess with his counts, that's where he is. But doing wonderful. Sorry it took so long to update but remember there are some more pics in the previous post (you might have to click on "older posts" to see them. Thank you everyone for your love and support. Love and prayers to those in transplant right now who are fighting for life. Hugs and tears to those who have lost their children. My heart is with every one of you.

-Kristin

So, I have a lot of updating to do. I was looking back in my pictures and I had to go all the way back to Weseley's birthday in March. I will fly through this stuff quick so you don't get bored. Here is Wesley openning presents. It looks like we are in a hotel somewhere. Can't remember where at this point anymore. Guess that's proof I should update more often. I would guess we are in New Hampshire but don't quote me. Wesley got a scooter and a new Gameboy DS.




It's looking like we took the kids to Boston. Oh yeah, we went to visit Gramma in the hospital during her surgery there. She's doing well now.

Sean will kill me for posting this but I think it's funny. He didn't know I took Wesley's picture with the stinky Red Sox cutout. He was very mad at me when I showed it to him. Sorry Sox, Wesley is a future Yankee. Still funny though. I think Sean almost divorced me ;0)

Dang, I can't remember where this is either. Some butterfly exhibit somewhere. All I remember is one of the butterflies pooped on Quinn's hand here and she wasn't happy. I told her to hang on and we'll go wash her hands. A few minutes later I noticed she no longer was concerned about the poop and I asked her where it went. She said, "I wiped it on your pants." Nice.

I think they liked Sean's shiny head.

Okay, I think we were in Rochester at the kids museum there. That's where we saw the butterflies too. Here are the boys playing gigantic chess.

We went to Rochester for Sean's friend Charlie's wedding. Here are some of our childhood friends. So many memories.

And here are all of our kids at the zoo.

This is my mom's house with nieces and nephews.

I had to include the REAL reason we went to Rochester. Sorry Charlie, it wasn't for your wedding, it was really to get garbage plates ;0)

Yum. What's on it you ask? Everything. So good. There are a couple of cheeseburgers in there too.

Alright, we must be back in Maine now cause this is Wesley getting his first stripe in Jukado.

Here is Quinn and her friend Elyssa walking in the memorial day parade for girl scouts.

Here we're at the Flynn's house for Jordan's birthday. Please keep them in your thoughts and prayers. Jordan's counts are really low. They are trying Androgens which can sometimes raise counts...but sometimes not.

Quinny getting her metal for softball. Some of you may remember Quinn's aversion to soccer and how she would leave the field in tears and say she didn't want to play anymore. Well, we were doing good with softball and she was actually seeming to like it, and then pop! She gets nailed in the face with a ball on her first day. DANG! She did not want to go back in and we had to have a talk. I told her the stories of how I had been popped in the face a few times and that I promised her she would not be the last that got it on her team. She finally went back in and eventually there was a different girl crying, not wanting to go back in, cause she got popped too. Not hard. The girls don't throw hard at this point but I was proud she stuck it out and eventually did very well during the year and liking it. Except when she would sit down in the middle of the bases cause she was tired of standing. She really enjoyed batting and I will try to include some video later of her hitting with Slugger the Seadog from our local baseball team.

Wesley is on the left with his Gi on. He seems to really enjoy Jukado.

Ahhh, Coley's Cause! Our fourth year going, I think. This is Coley's dad, Todd. They lost Coley to FA and now they raise funds for the Fanconi Anemia Research Fund in her memory. They are an incredible family.

Guess who got to him. Yup, Quinny.

Collin painted the kids in war paint.

The rest of the pics are the start of Camp Sunshine so I'm gonna start a new post for those. Maybe some random videos if I can figure it out too. See ya in the next post!

Happy Father's Day Daddy. I miss you.

Here is the link to the jewelry I was wearing that Wesley asked about if you are interested.

http://www.katafoundation.org/store.shtml

Wesley's birthday

Saturday, March 14th is Wesley's birthday. My little bear will be 6. Can you believe it? It's hard for me to recall how much we've been through in 6 years. But it's been a lot. And here we are still happy, still blessed, and still going strong. It's been five years since we've been introduced to FA. FA has changed us in so many ways. Mostly for the positive at this point. But it has also broken our hearts many times. It has produced compassion and understanding. Heartache and tears. Forever friendships and bonds that will withstand all. I don't know how we got here, or where we are going but we are reluctantly going along for this ride. Smiling and laughing as we go. Crying when we hit those bumps along the way. I hope the road will smooth until we reach the end. But is it ever really the end? Or do we just get off at the final exit that takes us to a beautiful eternity? Yeah, the road never ends.

Please take some time to wish Wesley a Happy Birthday. The other day he asked about a necklace I was wearing that has two four-fingered hands on it representing kids with FA. He asked what Fanconi Anemia was. I told him he has Fanconi Anemia and he was confused. So funny to me because I thought he knew he had FA but I guess not. I explained to him that was why he wore a hearing aid and why his hands looked different. I reminded him of all the kids he knew that also had FA like him. And then I said that if he didn't have FA, we wouldn't get to go to Camp Sunshine and that was the deal sealer right there! He beamed and later that day he was singing some song and putting the words Fanconi Anemia to it. My little bear. I told him he steals my heart. He asked what that meant and I explained it. A few days later Quinn came downstairs and said, "Mom, you know what Wesley just said to me?" I thought oh geez, now what came out of his mouth. "He said I steal his heart." And she was beaming. Why I am so blessed is beyond me.

Hugs,
Kristin

Wesley's IEP meeting went great. He was released from all his therapies. They said he is doing wonderful and is at least average with everything, above average with his reading. He still has trouble with scissors but he does well with the special loop scissors he has. He doesn't need speech anymore either. It was great to see how wonderful he has adapted and how great he is doing. I got to the car and basically just bawled. To see him on track with his peers in Kindergarten is just a blessing in every way. I'm just so thankful.

Maryann finally had her surgery yesterday. On Monday they did an endoscopy and noticed that her esophagus was short. I guess most are around 10 inches and hers was 3. They also discovered that the tumor took up 2/3 of her stomach, which was much bigger than they thought. The plan was to take some of her intestine and attach that to her esophagus to make it longer but when they went in yesterday, a hiatal hernia that she had had stretched her stomach so they didn't need to use her intestine. Which was GREAT news. We are all so happy and thankful for all your prayers. She will be in Boston for a week or so and then moved to rehab in Maine.

We are currently having a new septic system installed. One of the fun parts of Maine. Ours wasn't draining into the leech field anymore so we had to spend over $13,000 to have a new one. Yup. It's hard to tell from the picture but if you look at our pool, you can see how high that mound is. At least they could do it while the ground was still frozen. Spring is just so muddy it would have been an even bigger mess.




I was working one morning from home and all of a sudden I hear this little voice behind my desk. I caught Wesley playing with Quinn's Little Ponnies.





WARNING! The following clip may include disturbing images of a child who looks like his parents never feed him. We can assure you this is not the case. His parents do make their best attempts to nourish him. He just will not get fat (it's the FA folks). Please do not contact child protective services.


Sean, while spending hours in a waiting room, found this for his iPhone. It's a lightsabre and Wesley feels like he is the baddest Jedi in town. What a stud.

I know it looks like he hits the dog, but he's not. Please do not contact the animal abuse hotline on me either ;0)

Well, that's it for now. Please say a little prayer for Alicia. They had a little scare but are okay now (Alicia flushed her line with Sprite) Scary.

Hugs,

Kristin

If you all wouldn't mind keeping Sean's mom in your thoughts and prayers. Her surgery is Monday in Boston to remove the remaining tumor.

Thank you all so much,
Kristin

It's been a couple of weeks now and Wesley is still coughing. Poor little bear. He doesn't seem sick other than that though. His school had a play where the theme was 5-2-1-0. "That's a funny way, to count you say?" per his song. Five fruits and veggies, no more than 2 hours of TV or computer a day, one hour of excercise and zero sugary drinks. See? I was paying attention. I was in shock though watching Wesley before and after the play. That kid is a stud. Little girls were hugging him, school aged girls were coming up to him and hugging him. Teachers and mom's were calling his name. It was like he knew every girl in the place. So funny! Finally a mom behind us and her older daughter were talking to Wesley saying they wanted to take him home with them. I finally turned around and asked them how they knew Wesley? The mom said what a little charmer he is and is always telling girls how pretty they are, or how he likes their hair or earrings. DUDE! Where does he learn this stuff. I mean, he always tells me he likes what I'm wearing or that I'm pretty but I had no idea it spanned the corners of Gorham! He will tell a waitress he likes her earrings once in awhile and loves to watch her studder and blush but I just didn't know he was wooing all of Maine! I just couldn't believe how many girls knew him. He knows more people than I do!

So, Quinn and Wesley did great at the concert and that is where Wesley claims a boy coughed on him and that is where he got sick which I'm sure had nothing to do with it. The whole school was coughing. But it did result in Sean and I having to cancel our V. Day getaway and our winter trip to Camp Sunshine which was a total bummer. I just couldn't justify him coughing on kids who were recovering from cancer or who had low blood counts. So instead we made a last minute trip to New Hampshire to make up for it. I didn't mind him coughing on healthy kids ;0)

So we went up to North Conway and stayed at a hotel that had an indoor and outdoor pool. Collin and Quinny rolled in the snow and then jumped into the hot tub outside. It was cool to be sitting there while the snow fell. The next day we decided to go to Mt. Washington and take a trip up in a Snow Coach which has big treads for wheels. We made it to almost 5,000 feet up but then it was too snowy and the road was closed. Mind you there are no rails or anything keeping you from plummeting off the edge of this skinny road. You all know me and heights. I was shaking. An hour after the ride was over, my hands were still shaking. At one point the driver tells us we can get out and take a picture but to stay close to the kids so they don't go over the edge. Also to watch their noses and if they start getting white, frostbite can happen and to get them back in the van. Nice. We jumped out, got a quick pic and jumped back in the van. It was very beautiful though. Amazing mountain views covered in snow. So we made it back down and had lunch. Our plan was to take the kids tubing next but when we went back outside the wind was whipping and it was so cold. We decided to get a hotel for the night and come back the next day to tube. So we swam some more and went to dinner and just hung out. The weather was nicer the next day and the kids had a great time tubing at the bottom of Mt. Washington.

The next day we were home and I just have to boast about something because I said I would. We took the kids candlepin bowling. For those who don't know, it's a New England thing where the balls are small and fit in your hand (no holes) and you have three chances to bowl. It's weird at first but better for kids because they can hold the ball better. Anyway, in 19 years I have NEVER beaten Sean at bowling. He kicks my tail everytime. Candlepin or regular bowling, doesn't matter. The first game he beat me by one pin. I was sooo mad. But guess what good people. I kicked his butt the second game! Wahoo! I know it's not a big deal, but if you know how competitive he is, it was wonderful. 10th frame I was trash talking so he would get nervous. I told him if he lost, I would post it for all the world to read on Wesley's blog. So...I just had to stay true to my word ;0)

We had a snow storm the other day so the kids got an extra day off of school. I will include pictures below. If you can see, that birch tree that is bent over usually stands straight up.

Well, not much else happening. Wesley has his IEP meeting so hopefully it will go well and they won't tell me Wesley spends too much time flirting.

If you could, we have good friends whose daughter Emma has FA. She has almost the same things as Wesley with the ear canals and kidneys and tiny like him. Same age. They've gotten some scary test results back which are the ones every FA parent dreads. If you could just keep them in your thoughts and prayers. They need strength and guidance as to what to do. Thank you my friends.

Hugs,

Kristin