Here is the link to the jewelry I was wearing that Wesley asked about if you are interested.
http://www.katafoundation.org/store.shtml
Thursday, March 12, 2009
Wednesday, March 11, 2009
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
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
Thursday, March 5, 2009
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.
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
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