Monday, March 31, 2008

Tonight after Holland's OT appointment and getting the kids off to bed, I logged on to an online message board I'm a member of. It seems strange to think that I've become 'friends' with people that I've never met, but that's just what has happened. It's been amazing to get to know some of these ladies and they in turn have done some of the sweetest things for me. After Holland's surgery in January, someone from this board sent a card and an electronic Yahtzee game for him. I have never met this woman, but she was passing on kindness she experienced from other board members when her daughter was in the hospital.

Well after I looked through some posts, I discovered that one of the gals on the board had a son who was seriously injured in an accident and asked us all to pray. There were a few updates; a dresser had fallen on him and he had been taken to the hospital, but no other information was known. Then a new post came up from the boy's mother. He had died from his injuries. It all seemed so surreal. I don't even know this woman, but feel a connection because we share a common passion - our children. He had climbed into one of the open drawers and the dresser fell on top of him. His head got caught in a drawer and he died instantly. I feel great heartache for this family. She has two other children. I have several bookcases and dressers that need to be secured to a wall and will be doing that immediately. Here is a link to some brackets to secure furniture: http://www.rightstart.com/global/store/product.aspx?item=253&mr:trackingCode=D0D7606B-B1FE-DC11-AA92-001422107090&mr:referralID=NA


Friday, March 28, 2008

The New Trampoline

We bought a 14 foot trampoline for Holland and Romania's birthdays. We've always celebrated their birthdays together and this year we had a request to have separate celebrations. We gave them each a Lego set, but decided one big present for them both would be a trampoline. We've had a second-hand wood play structure in the back for several years. It mainly was used for the sandbox underneath and seemed to endure much abuse instead of play. I was glad to see it go. Super-hero dad had to clear the space on the grass and dig a big hole for the trampoline to sit on. I didn't think there was that big of a slope, but on one end he dug about 2 inches and the opposite end has about 14 inches dug away.

It's taken several after work nights to get it set up. And the continuous rain is no help - not to mention the hail and snow we've had the past three days. The kids have used it a couple times when the weather clears up in the afternoon and had a blast. I even jumped on it! I'm sure we'll have lots of visitors. I'll have to get some pictures of the kids jumping and post them.

Monday, March 24, 2008

Run, Forrest, Run!

Today Holland had his fitting for his leg braces. And actually, they aren't even braces! So, no Forrest Gump! The orthotics lady came to our regular OT appointment and took a foam impression of both feet. She looked at his ankles, watched him walk and stand on his tiptoes. She said he is very, very flexible and combined with his nonexistent arch, he has compensated by walking on the insides of his feet. She is making molds to fit inside of his shoes. They should be ready in a couple of weeks. By that time, I'm sure his feet will have grown more.

Wednesday, March 19, 2008

He's a different kid

Holland is now on just two mood stabilizers and the difference is amazing! It's taken several months of tweaking several different meds for his mood. We started around Thanksgiving with one, and were trying to eliminate another. It got really bad, so we kept him on the third one and planned to stop it when his mood became more stable. We ended up tapering off the new one and going back to Lithium. He had a few rough weeks at school. He seemed cranky and tired and just not happy. Last week was the last time with three meds.

He brings home a paper that records his behavior for the day. Two teachers will rate how his behavior was and then he also scores himself. One is the worst, five is the best. One of the teacher's names was crossed out and the program specialist put her name in and crossed out the 5 and wrote a 6 and circled it! I don't even think he saw that until he got home. Romania and I were so excited - cheering for him. I can't imagine what the day must have looked like to have that rating!

He's doing better transitioning between activities. He doesn't erupt when I have to redirect him. He hasn't yelled at me when I say 'no' to a friend coming over. Romania is even pointing it out. The other day he said, "hey, did you hear what Holland said? He didn't yell and said 'yes, mom'. "

Now we've just got to work on these terrible two's of Egypt's. Oh wait. She's three. What is that called?

Monday, March 17, 2008

The last viewing of the van

Today I took Egypt and Romania to get the last of our things out of the van. The other driver's insurance decided to total the vehicle after looking at it. Romania always gets sentimental about moving on. He liked being three because he and Holland got along so well. He was sad when we bought him a new bike because he would miss the old one. Of course, he looked like he belonged in a circus, a clown riding on a miniature bike. And today, he got all sentimental about leaving the van. I told him we hoped to get a van with automatic doors, like his aunt's. Then he got excited!

Getting kids in the car is always an ordeal. You have to make sure you have things to keep them busy, you need to get snacks, drinks, taggies, Legos. They act like we'll be gone for 7 days instead of 30 minutes. While I was strapping Egypt into her car seat, I heard Romania talk about the snack he had picked out for himself and his sister. He said how much he liked the peanut butter flavor snack. Egypt added that "chocolate is my favorite color!" Romania and I shared a good laugh about that.


Here are some great pictures of Holland at his OT appointment tonight. It was the best visit so far. He followed directions, didn't get too distracted, and he learned to TIE HIS SHOES!!! In case you're wondering, that's a big deal because he has trouble with some small motor skills.

Saturday, March 15, 2008

Hip-hip-hooray for Gameboy!

I just may have figured out how to get Holland to cooperate. I've found his "love language". A Nintento Gameboy. We went to an auction at our church a few nights ago and he bid on and won a used Gameboy and two games. He lost the use of it the second day he had it because he snuck it to school. He lost the use of it for one week. He kept asking for grace. I told him I give him grace everyday! I finally decided if he could have outstanding behavior over two days on the weekend, he could earn back the right to play with it. We went out to dinner tonight with a birthday coupon to Red Robin for Holland. He did very well, not getting upset at the littlest thing. And when we got home, he transitioned through 4 different activities flawlessly. I was stunned. Then I asked him to sit for 5 minutes on the toilet (usually if he is going to be sent over the edge, this will do it). He sat down without incident!! I almost fell over. I told him because he did such a good job transitioning and overall for two days, I would let him have the Gameboy back on Sunday. He asked if he could prove he could give it back if I gave it to him while he sat on the toilet. (Hey, guys usually read there anyway, right?) I asked what he would lose if he didn't succeed at that. He thought and then came up with "friends" (playing with them on Sunday). I told him that wasn't big enough. I said he would lose the Gameboy for another day if he didn't give it back without incident. He agreed. And did it! Woo-hoo!!

Wednesday, March 12, 2008

Science Fair at Heron Creek



Here are pictures of Holland and his classmates at their Science Fair. Holland's group presented on Dental Health.

Tuesday, March 11, 2008

By the way....

Your son needs leg braces. That's what we found out during Holland's Phsyical Therapy evaluation today. We were referred by the Occupational Therapist we've been seeing weekly, for help with gross motor skills now. I've always known he walks on his toes, and kind of pidgeon toed. But today we found out just how much the Spina Bifida is affecting the rest of his body. He's bow-legged and very weak at the ankles which is causing him to favor one side. He's compensating for the hip rotation problem by sitting in a way that doesn't hurt his back, which is only causing the leg problems to worsen.

All I could picture was Forrest Gump. I asked her if that's what they looked like. She was like, "no sweetie!" Hopefully when we go in next week for the OT appointment the lady who does the fitting will be there. Honestly, if you told me there was some other ailment he had, I would not be surprised at this point. The leg braces kind of put me over the edge.

Birthday Marathon



We celebrated Romania's 7th birthday and Holland's 9th birthday this weekend. Here are pictures of a sleepover/Wii party, a bowling party and a family get together.

Thursday, March 6, 2008

Sharing

Last night I asked Romania what he was bringing for sharing. He always wants to bring Legos, but I don't want the pieces lost and his teacher probably is not thrilled when kids bring things like that. He asked if he could bring Holland to share.

Wednesday, March 5, 2008

Romania's problem solving skills

He's the middle child. So am I. Sometimes he gets so over-the-top emotional that continuing to talk is pointless. Tonight I broke my own rule and was going to let him play the Wii for 10 minutes before the final countdown to bed. I was in another room, but could hear him struggling. I finally asked him what was going on and he made some complaint about how I never listen to him. I came over to him and figured out that the Wii was not working and he was getting extremely frustrated. As I was trying to reboot the Wii, he starts crying, saying I don't help him and he's just mad (he's saying all this as I'm sitting there. Helping him.) Finally I said the Wii was not going to happen tonight and he needed to finish getting ready for bed. He flops back on the floor, crying and announces he is quitting school. He also decided to quit basketball last Tuesday when his thumb got jammed during practice-for the second time. I could hardly get him to bed. He just kept announcing he was not going to school anymore. He's so dramatic. I doubt I was ever like that.

Monday, March 3, 2008

The OT

Holland has a standing appointment with an Occupational Therapist every Monday. She's working with him to improve his upper body strength. It's his favorite doctor so far because he gets to play. There are heavy ropes hanging from the ceiling and all kinds of things to hang and swing on. Tonight he had to lay on his tummy and grab kushi balls that the therapist would drop in front of him and then toss into a basketball hoop. His mind is on everything but the task. He lobbed a few into the hoop and then decided it would be much more fun to hurl it like a major league pitcher. It smacked into the metal blinds on the window behind the hoop. He starts laughing his head off. The OT just looks at him and asks him what's so funny. (She's so brilliant with him. I wish she could come live here for awhile!) He has so much trouble following directions: his mind is elsewhere, inventing things and planning strategies. She was very patient and would just wait for him to come back to the task. He still had to do everything, but wasted a lot of time.

Because it took him so long to get through all the exercises, he had no time to use the equipment of his choosing. He was disappointed, but actually took it better than I thought. Every time she asked him to do something, he was off in another part of the room trying to figure out how he could hook up something to catapult it somewhere else.

This week we have exercises to help strengthen his back and also help with coordination. One more thing to squeeze into a day that already needs about 28 hours.