5th Laser Treatment

Ben had his 5th Laser treatment today. He did great again. His biggest worry was getting a Popsicle and apple juice when he woke up and then visiting the gift shop for a balloon.....and of course he was not disappointed. In fact, the nurse gave him two popsicles and two apple juices. Then Daddy took him to the gift shop to pick out a balloon. They also did an eye pressure check on him while he was out and his eye pressure was perfect. So for now his glaucoma is under control. Great news!!!

Ben's 4th Laser Treatment

Ben had his fourth laser treatment today. He did great except being a little loopy from the goofy juice. The doctor used the laser on full power and said she was happy with our progress so far. He will go back in three months for another treatment.

Home for One Year!

Saturday, March 6th was Ben's One Year Forever Family Day! We spent the day at Grandma and Grandpa's house watching Daddy and Uncle Jeff build a ramp for Grandpa's new Hoveround. He had a great time helping and running up and down the ramp. On Sunday, he got to spend some time at Mimi and Papaw's house playing in the new barn and checking out the new baby goats.

Ben is an amazing little boy and he likes to think he is the boss. He talks non-stop and does EVERYTHING that Shae does.

Happy One Year Home! We love you, Benji!

4 Years

Four years ago (yesterday) Michael put my baby girl in my arms. Our family would not be complete without her. She is an amazing little person and I think she will do great things someday.

Happy 4th Forever Family Day, Shae! We love you so much!

Pictures

I have been so bad about updating the blog. Ben is doing wonderful. He has had his third laser treatment now and his port wine stain is really fading. We are spending 2 weeks at Disney World in February and he is so excited! I hope the characters don't scare him!

Here are some random catch up pictures......

Big Birthday Party!

Since the four little ones birthdays are all right in a row, we decided to do a big combination birthday party this year at the jumping place. They each get to have their special day on their actual birthday and get to choose what to have for dinner that night. Ben has already decided he wants Hot Dogs and Strawberry shakes for his birthday in a few days, Ben was scared at first, but he warmed up after we took him down the slide a few times and mommy climbed into the jumping house with him. Izzy and Shae ran all over with their friends from one thing to the next. Henry had a good time taking turns dragging Mimi, Papaw, Mom and Dad down the slide or through the obstacle course with him!

With a suggestion from us, the kids decided to collect donations for Love Without Boundaries instead of receiving gifts. They were so happy to collect $175 for a child in China who needs life saving surgery.

Ben and Papaw


Henry with Grandpa and Grandma



Izzy and her best buddy



Shae with her cousins and Mimi.

Henry and his beautiful girlfriend

Izzy

Mommy and Ben coming off the slide

Shae

Zach and Shae coming down the slide

Daddy and Ben

Ben's First Halloween!

Ben and Henry did not want to wear costumes, but we finally convinced them to put something on so we could go trick-or-treating. Ben was a construction worker....which his favorite thing out of the dress up closet and he wears it around the house all the time! Henry wore the Buffalo costume. Shae was a cute kitty cat, and Izzy was a beautiful mermaid. Ben was not happy to see the older kids coming to the door in scary costumes and did not want to go out. We finally coaxed him out the door and when he saw the neighbors were giving him candy, he didn't care about the scary costumes anymore!

Eye Patch

We have started patching Ben's good eye for about an hour a day. His opthamologist hopes that it will help to improve the vision in his other eye. He is such a good boy and doesn't fuss at all about wearing the patch even though he runs into things and doesn't see that great when he wears it. His glaucoma is under control. His eye pressure is normal and we continue to give him eye drops twice a day

Ben's First Visit to the Pumpkin Patch

The other kids were excited to take Ben on his first trip to the pumpkin patch. He loved it! Except for the horses. The other three kids were screaming for their turn to ride and Ben was screaming in fear! He kept saying "Horse bite me". He would not let his Mimi put him down until we moved well away from the horses. The hay ride was Ben's favorite part. He really wanted to ride up on the big tractor, but we convinced him to ride on the trailer with the rest of us.

Camping

The kids love to go camping. Their favorite part is digging in the rocks and dirt at our campsite. This time we hiked to a waterfall and they did really good. We only had to carry the boys for a short time on the way back.

2nd Laser Treatment

Ben had his second laser treatment last Friday. He did great! The doctor turned up the laser this time and I was worried that he would hurt or swell up, but he didn't have any problems at all.

This was a couple of hours after the laser treatment.


This is 4 days post laser.


And 5 days post laser.

You can probably tell from the first 2 pictures....he doesn't like to wear clothes!!

Reversed Pictures?

In the previous post, I added the pictures we had made at a studio. I knew they were reversed from the way the kids were actually standing....but my Mom noticed that in the group picture and Ben's picture alone, his port wine stain is on the wrong side of his face. In his picture with me, his port wine stain is on the left...where it really is. I don't understand how or why the other pictures were reversed. Anyone know???

Pictures

We have tried several times to get professional photos made of the kids and they would not all cooperate. We finally got some good shots. In most of the shots I was just at the edge of the picture, because Ben would have a melt down if I wasn't as close as possible.

Ben's Glasses

Ben has his new glasses and he seems to like them most of the time. He doesn't have much of a nose to hold them up, so we are constantly telling him to push his glasses back up.

Here are a few picture of him in his glasses....

This is right after he and Daddy picked up the glasses and dinner. He was so hungry that he wouldn't put the food down to let me get a good picture.





This a couple of days later playing cowboy with Henry (with his purple cast) . You can see the glassses slipping down his face.

Brothers

Having two 2 year old boys is hard work, but it is so much fun now that they are starting to enjoy each other. Henry outweighs Ben by at least 20 pounds, but they are becoming quite the pair. Just the other night Shae took a toy from Henry, so Ben ran over and grabbed it back and gave it to Henry.

Here is a picture of the boys checking out the new fish tank. We are trying a salt-water tank for the first time. It has shrimp, snails, little black crabs, and 1 Nemo fish in it right now.

Sturge Weber Syndrome

Over the last 2 weeks , we found out that Ben does have glaucoma in his left eye and he does have Sturge Weber Syndrome. Even though we knew it was a possibility, it was still hard to hear the diagnosis. Sturge Weber Syndrome is different for everyone who has it. It usually involves 3 things.....Port Wine Stain, Glaucoma and Seizures. It can be from very mild to very severe.

The good news is that we were told he did not have any seizures at the orphanage and he has not had any since he has been home. Also, he is definitely not developmentally delayed. We are waiting for an appointment with a neurologist who can tell us more about what they saw on the MRI, and hopefully can give us an idea of what to expect. We think that it is probably very mild and will not be much of an issue for him. We will just keep on top of the glaucoma and the laser treatments.

Ben had an appointment for an exam under sedation with a glaucoma specialist and she said that while he has the signs of glaucoma, his eye pressure is not high. So, we are doing a low dose of daily eye drops for now and we will see her again in 6 weeks to get another pressure check. He will also wear glasses. I will post a picture of him wearing them as soon as they come in.

We are blessed to have this amazing little boy in our family and we all love him so much. I would appreciate prayers for him that he stays seizure free and that his glaucoma doesn't get worse.

12 days after laser

7 days post laser

Here is Ben a full week after the laser. We didn't expect to see this much change in his port wine stain after the first treatment, so we are very excited at how well it worked. His next laser treatment will be in September.

We got some not so great news this week about his eye. It looks like he does have glaucoma in his left eye. He will have an eye exam under sedation with a glaucoma specialist on Monday. We hope we will just have to do daily drops and that he won't need surgery. He will also start wearing glasses 1-2 hours per day. We ordered the glasses yesterday. They are the cutest little things. I sure hope he cooperates and wears them!!