New Recipes

So, I am now going to become an expert in yet another area. First, I became an expert in dealing with a child with bipolar. Then, God allowed me to become an expert in Spina Bifida, learning disasbilities and Juvenile Rheumatoid Arthritis. But wait! He's not done! I'm now going to become an expert in.... drumroll......

cooking without gluten!! Yes, it's true. Holland has been diagnosed with celiac disease. I've actually tried a gluten-free diet before with him, but I don't think I was as dedicated as I will have to be now. It's not going to be an easy thing. If you've ever looked at the ingredients in foods, you know that gluten is in everything. Not only can he not eat wheat, he can't eat oats, rye, or malt. (oh, so sad, no chocolate!)

So here's my first attempt at gluten-free sugar cookies after the celiac diagnosis. I'll let you know tomorrow if Holland eats them (let's also hope that the other two like them also!)

Egypt's Eye Check: Check!

On Friday Egypt had her 3-month eye check up. We have to monitor her eyes for uveitis, an eye infection related to JRA. Clean bill of health! The most exciting part? Getting princess stickers when she was done.

CAT scan is done

We've just finished two days of testing on Holland: blood work, CAT scan and poking in areas that don't deserve to be poked. Our pediatrician recommended having the CAT and seeing a gastroenterologist. He didn't seem to think the fluid in his abdomen was any big deal, but the CAT scan showed so much blockage in his colon. He said kids with tethered cord often have constipation problems. He's had this before. We cleaned him out with magnesium citrate and did Miralax and it seemed he was too "loose" so I stopped. I guess I won't be able to do that again.

Another possibility is celiac disease. I've done a gluten-free diet with him before, but it was so hard to keep. It's nearly impossible to avoid and the foods you can make with different kinds of flours don't taste that great. We stopped at the lab for blood work after his appointment and hope to get some results by Monday. He had to be poked twice because his vein collapsed while she had the needle in. His arms and legs are so cold (they get that 'mottled' look) and his skin is cold to the touch. We had to warm him up before she could get enough blood.

More Tests

I finally was able to talk to our pediatrician's nurse today about Holland's ultrasound last week. We had been gone all week and I kept playing phone tag with her. We have been advised to do an abdominal CAT scan and he also needs to see a pediatric gastroenterologist. I'm so thankful that both of these appointments will happen quickly. The CAT scan will happen on Wednesday and the GI doctor actually had an opening on Thursday. The ultrasound showed no sign of a hernia, but the radiologist found "abnormal fluid" in his abdomen and so we are on to more tests. The pediatrician can only guess what that fluid means: an infection or something ruptured. Neither result sounds good. Hopefully I'll know more on Friday and can post results then.

We're Home!

We spent this last week at my in-law's cabin. It's on a beautiful lake with plenty of room for fishing, boating and just laying in the hammock, reading (which is where I spent a lot of time!). The kids had a great time. Egypt and Romania love the water for swimming, but Holland would rather fish it. Or hunt for crawdads. Or try to catch sturgeon. Sounds crazy to have sturgeon in a lake, but about 80 years ago, the lake had a saw mill on the property (before cabins were built). There was a Chinese cook who fished on the Columbia River and would catch sturgeon to use in his restaurant and for the mill workers. He rigged a big cage and would keep the sturgeon in it and just pull it up whenever he wanted to cook. One morning he went down to find the cage broken and all the sturgeon gone. One was caught back in 1935 and there's a picture of it in some historical book. The thing was about 7 feet long! Then about 10 years ago, someone across the lake caught one and super-hero dad had brains enough to grab his camera and take a boat over there. He snapped a picture just as the line broke and an 8-foot long sturgeon got away! I think that's why Holland would rather not swim in water where he cannot see what's around him. It's estimated that there are at least 3 giant sturgeon still in the lake.

I have lots of pictures to download and put in a slideshow. Romania got up enough nerve to go down the big slide at the swim dock. And why not? He already jumps off the boathouse roof!

Good News!

It's not a hernia! Yea! I took Holland in this morning at 7.45 and he had an ultrasound around 8. The tech said he did not see anything that looked like a hernia. I think we're just dealing with constipation again. We're on our way back to the pedi to find out about his blood work from last week. And to also talk about this weird rash he had yesterday while we were at the cabin. It might be viral, so there's nothing we can do. His legs and arms were covered with this purple spider web-like rash. We're just praising God that it isn't a hernia.

Here We Go Again (isn't that a dolly parton song?)

It's been a few days since I've posted and a lot has happened since then. Why does it always seem that life happens so fast and you have no time to breathe? Holland has been complaining of a stomach ache for about a week. His weight has dropped a lot - he's lost almost 7 pounds since April. We had an appointment with the psychiatrist on Wednesday to check in with meds and how things are going. He knew about the weight loss beforehand and we talked about switching one of the meds to a pill instead of a capsule. He thought that might be causing an upset stomach, plus constipation, and would lead to a decreased appetite.

That night, Holland was again complaining of a stomach ache. So I had him lay down and felt his tummy so he could show me where it hurt. When I moved over his left side (below the belly button), I could feel a lump. I kept feeling on the right side to make sure I wasn't imagining it. I called first thing in the morning to our pedi and got in 30 minutes later. The doctor felt around and he said he thought it was a hernia. We were already having blood work done for the psychiatrist so our pedi just added a few more tests and a urine sample. We leave for vacation on Sunday but will have to come back in town Monday night for an 8 a.m. appointment at the hospital for an ultrasound.

He is in so much pain. On taco night, he barely ate one little taco and was full. Then last night I made spaghetti and meatballs. He ate one meatball and some corn and couldn't finish the noodles. I'm praying that the new Lithium pill will ease his stomach aches. We also have to start up with the Miralax again to keep the constipation down. It's disappointing that the capsule could be the problem because that cost me about $12 a month. Now I am paying $50 for one month's worth of Lithium.

Education Specialist

Today the kids and I went to a nearby park to meet Holland's Educational Specialist for this coming year. All the kids played and we were able to sit and talk about what she's legally required to do and what I will be asked to provide. Not only do we meet once a week for an hour, but I have to turn in 6 different pieces of work that shows Holland's been working on the required subjects. I've been blessed with a great ES because I used to teach with her at a Deaf School before I left for another position at a different school. She knows me, my situation with Holland's current school placement and is willing to make it work for us. She will take these work samples and write comments on her observations (it's not an evaluation, just a means of documenting compliance).

It all seems so weird right now. Each new year brings an entirely new way for me to school. I sure hope we can get past the experimental stage quick. I've gone through countless curriculums to make it work; he's been in a very strict public school program and now I'm returning to homeschooling with additional support. We'll see how much stress all this documenting weighs me down.

It's Elementary My Dear Watson!

Super Hero dad took the boys to a water park this afternoon. We had free passes from our library's summer reading program. I didn't want to take Egypt - it meant me in the water. So I called up my sister and asked if we could come over for a quick swim (her boys and DH were at a father/son camp for three days). Egypt wanted to know who was going to be at her aunt's house. I said that her uncle and the two boys weren't there. She just repeated this and said "oh." Then we pulled up to their house and she saw two cars and said "who drove him?" How in the world did she make that connection? It didn't make sense that his car was in the driveway, but he wasn't. Amazing mind of a 3 1/2 year old!

Ewww. Gross.

No two ways about this. Tonight I was getting ready for my monthly game of Bunco with my girlfriends. I had to make dinner, keep the kids from killing each other and I was washing clothes. I have a new pair of capri jeans that I wanted to wear. I went up to the washing machine and opened the lid. There was this white fluffy junk all over the clothes and stuck to the sides of the machine. One of the boys had left a pullup in his pajamas and put it in the laundry room. I can usually tell when there are pullups left in pajamas because I can feel the added weight :-) But this one happened to be dry. That is until I washed it. Now I know what the inside of a used pullup looks like. So I didn't get to wear my cute new capris. I had to shake off all the fluff, and vacuum out the washing machine and then rewash the clothes.

School Decision

I think we finally know what we're doing this fall for school for Holland. I was really wanting him at the same Charter school as his brother, but the rep and the principal are so against it, I feel I would not get the support I needed if I push the matter.

Right after school let out, my sister and I took a tour of the newest charter school in our area. It combines homeschooling into a public school setting. It's quite unique. You are assigned an Educational Specialist who works one on one with you to develop your yearly plan and they check in weekly. We put our kids on the wait list, not knowing what we wanted to do, but to have that option should openings occur. We were so far down the list that I was not considering that an option. I got a call yesterday that both the boys got in (I put Romania in there just to be able to change my mind about the other Charter school). I filled out the paperwork and they will request records, his IEP, and any other documents they need to transfer his placement to the new Charter school. I will get $575 to spend for the entire year. This can go towards curriculum, classes at the Charter school, extracurricular activities or lessons. The only catch is it can't be faith-based. So some of the curriculum I used before I won't be able to buy with this money. I can still use it, I just can't include it in my school schedule.

It will be interesting how this works out. I feel better about him not being at the same program he was at last year and hopefully I will be able to make some progress.

At this point, his placement from last year would just not work. Behaviorally he's improved so much that it makes no sense to put him back where he was. Springwater will not approve of the placement, so my only other option was to homeschool again. I see no reason to leave him in a classroom full of kids with potentially severe behavior issues.

Frogger

I haven't had anything funny, exciting or enlightening to share the past couple of days. So I thought I'd bore you with our hunt for Frogger. No, not the video game. A real frog.

Two days ago we were cleaning off the front porch and I happened upon a cute little frog. Holland and I caught it and put it in the little plastic fish tank we had. It has a hinged lid and some air holes. We wanted Romania to be able to see it before we let it go. He was spending time with gramma and got back today. Well, at dinnertime, Holland looks over on the counter and says, "Where's the frog?" We all look at the counter and then look at Egypt. She's sitting there so quietly, so coyly. I send Romania upstairs to find the tank. He runs to the stairs and shouts, "the frog is not in the tank!" We all run upstairs and just start tearing her room apart.

No frog. She actually built a little home for it. And if this was more humorous to me, I would have taken a picture. But I couldn't see the humor in a frog roaming around my house. We will probably find it in a couple of years, shriveled up. Poor froggy.

Here Comes the Sun

It's been hot here the past few days. Don't feel like doing much outside. But while doing laundry, I had hung a few things on the chairs on the deck because I wasn't sure if the stains I treated had come out. I could not believe how fast everything dried. I've dried clothes outside before on a rack, but the wood always get gross and looks moldy, so I don't want to ruin the clothes.

You might remember we have a zip line from our deck to a tree at the bottom of the hill. I've thought about hanging stuff on it before, but felt weird that my neighbors could see our laundry. My sister convinced me that it didn't matter, so I have a bunch of stuff hanging up. Egypt helped me with the clothespins and handing me clothes. It's so nice to do something that's FREE!

The Duck

Tonight we met Super-Hero dad at a kid-friendly restaurant. We had a birthday coupon that expired today and wanted to make sure we used it. There was a giant bird wandering around the restaurant (figure out where we went, yet?) and when I took Egypt to the bathroom, we ran into this creature. She was curious and gave him a high five. Then she turned to me and said "That's a big red duck!" I tried to explain that it wasn't a duck, but Red Robin. Heard lots of chuckles from patrons at nearby tables. She argued the whole night that it was a big duck.

Oops

The kids have been taking swim lessons last week and this week. The boys are in the same class and Egypt had just one other boy in her class last week. This week, she's all by herself, so it's like a private lesson without payin' the big bucks! It takes about 30 minutes to drive up there, so it's a big production to get everyone ready, snacks packed and dry clothes to change into.

Today after the lesson, I had to hurry everyone back to Holland's therapy appointment. It takes closer to 40 minutes to get back to where we need to be and I was frustrated because the boys took so long to get ready. It was like waiting for a teenager to finish showering. They were in the boys locker room for about 20 minutes. At least they're clean, right? So, hurry, hurry, everyone dash to the car, get your snacks and seatbelts on. I barely make it to her office in time and when she comes out, she says, "Oops. Looks like I scheduled two families at the same time. You guys flip a coin and figure out who gets to stay." Sheesh. Just what I want to do. Argue my case to a total stranger of why it's a lousy idea for me to come back, or even reschedule. Luckily, she was willing to take her girls to a nearby park and play for the hour and come back. I would have just given up had she not offered to do that. God knew that I couldn't handle any more on my "to do" list today.

Independence Day

Make a Smilebox scrapbook

We drove up Friday and Saturday to the lake cabin. We opted out of spending the night (too many people - not enough beds) and just drove the hour each way. The kids had a blast with the junior activities (boat parade on the 4th, carnival games, popcorn and movie and the ever-popular crawdad races!) Holland and Egypt had crawdads win their first races and then raced each other, but we lost. They put 3 crawdads under a big plastic cake lid and then the crawdads race to the edge of the circle. It's really funny. Kids catch crawdads with hotdog pieces and name them for the race. I didn't get any pictures this year. It's really hard to see what's going on because there are so many people crowding around the circle. It's a tradition that has been going on for 7 years now. Holland won one year and we got to keep this plaque with a plastic crawdad on it in our cabin for the whole year.

A Day at the Beach

The forecast was for 100 degrees. I don't do 100 degrees. We decided to surprise the kids and head to the beach for the day. We had most everything packed the night before, so they wouldn't know what was going on. It didn't take them long to figure it out.

I packed a ton of food for snacks and lunch on the beach. We headed to one of my favorite beaches on the Oregon coast, Cannon Beach. It's becoming more popular, so it's hard to get parking and finding a spot on the beach without a lot of people right at your feet is also getting more difficult. But it's so pretty there. There is Haystack Rock with tidepools, perfect wind for flying a kite and no bugs in the sand! Take a look at the slideshow for some great pictures of our day at the beach. We also bought taffy at Bruce's Candy Kitchen - THE only place to buy taffy. You can watch them make it right in the front window.

Make a Smilebox slideshow

Sports Camp Week

This past week the boys spent 3 hours every morning attending a sports camp that our church sponsored. Romania had participated last year, but Holland missed out because of summer school. I really wanted him to be able to do all the fun summer stuff, so we opted out of summer school. He had such a good time! They did a different sport each day, learning the rules and basics of 4 sports. Friday was spent cooling off with a water day.

During the week, the kids worked on memorizing two verses. They would earn a special pin if they could say the verse to a "coach" at the end of the week. Romania had no problem memorizing it. He worked by himself, jumping on the trampoline while he said it. I had worked off and on with Holland during the week but hadn't really sat down and listened to his recitation. Last night, I spent 40 minutes with him while he worked so hard to memorize it. I actually didn't think he would be able to say the whole thing. He kept switching words around, leaving big chunks out. His brain just doesn't hold on to information. I tried doing hand motions with him, but he got irritated and said it distracted him. I tried feeding him one word to get him going. If he made one mistake, he would start all over again. I wanted him to get the flow of saying the whole thing. After 40 minutes, we stopped and said we'd try again in the morning. I felt so bad. He can see that Romania has no problem memorizing. But I have to say, that I am so proud of Romania because he is Holland's biggest cheer-leader. He has never once made his brother feel bad for not doing something that comes easily for him. He cheers Holland on, gives him pats on the back and tells him what a great job he did. If we didn't have that, the tension around here would be horrible.

So this morning, I had the boys recite what they could. Holland was actually able to say most of it before breakfast and just had a few little missteps. Then on the way to sports camp, he said the entire thing with only one word prompt! We all cheered and he had the biggest smile on his face!

He got his pin.

Happy Adoption Day!

Nine years ago, we went into a courtroom, stood in front of a judge, and were declared the legal guardians of Holland. Every year, we celebrate this anniversary. We've usually done big family activities, but this year we had a low-key outing at a pizza joint. We talk about how special each child is and how important he or she is to the family. This is another way to recognize the uniqueness of our family and how God joined us together.

Come on. The other knee?

We just went in to see our rheumatologist a week or so ago. He checked out her right knee and said everything looked good. Checked other joints and didn't seem to be any problem. Now, the last three mornings when she's woken up, she's complained of her knee hurting. I ask her which one and where and it's the left knee. I really hope this hasn't spread to the other knee. I'm waiting for a call back from the doctor to see if we wait it out for the three month check or come in now.

Follow-Up on Injection

Today I took all three kids up to the hospital where Egypt had her injection 3 weeks ago. Doctor likes to check on progress, range of motion and to see if other joints have become affected. He says she's moving well. She's very active, so he didn't recommend physical therapy. I told him that she has recently had two different viruses and asked if I should be concerned. I thought maybe this meant her immune system was weak and she would be susceptible to more infections. He said no, that she just was one of those kids who picks up everything.

I also asked about her knee still looking swollen. I thought the initial swelling took longer than a week. He said the inflammation from the arthritis has caused her bones to grow quicker. She has a bigger bone mass on her right knee than her left knee. This also means that the bone is lengthening faster and her right leg is a bit longer. He showed me by laying her on her tummy and extending both legs out. Sure enough, I could see the length difference. You could also see it when he bent her knees up and the right knee extended farther than the left. Hopefully when (if) the arthritis goes away, it will correct itself.

Just glad that things are pretty normal (I'm not even sure what that looks like anymore. Normal for us is doctor appointments every week).

Show Me The Money!!

I hate that movie, but the title is appropriate. I had a conversation with the District Rep for Holland's IEP on Monday. What it comes down to is money. The school he is at now doesn't want to give up a full-time slot because they wouldn't get the funding. The Charter school doesn't want a part-time student in a slot that they could get full funding for (which is only 80% of public school funds). So there you have it. Everybody wants the money. Maybe nobody should get it.

I also brought up the academic part of his IEP and said I didn't think that his current school was meeting his goals (or his learning style for that matter). He actually was surprised at this. Well, that's because you have this tiny little box that you've stuck your head in and think "this is what education looks like". And when a child doesn't succeed, you assume it's him and not you. Everything is behavior driven. So, forget that he needs motor activities to help him pattern and make sense of things. He's bored. He's not interested in the endless worksheets that don't connect him to the learning. It's all his fault because he can't learn how you're teaching him. He needs someone who can teach him to see how he thinks. If he takes in information differently, then it makes sense that it's the teaching that needs to change.

Why is everyone afraid of taking a chance on this? I'm so sick of hearing that his social and behavior needs are more important than his academic needs. If he's invested in something, if he's interested in something, then the behavior will follow. When does a kid act out when they're enjoying something?

Good Clean Jokes

Today was Romania's last day as a 1st grader. His teacher gave each student a pouch for Field Study days with a sketch pad, colored pencils and a magnifying glass. He also printed out all of the 'joke of the day' he did throughout the year. Here are a few of my favs:

What did the baby corn say to his mom?

Where is pop corn?


Why did the banana go to the doctor?

It wasn't peeling well.


What do sea monsters eat?

Fish and ships.

How could a cowbody ride into town on Wednesday, stay two days and ride out on Wednesday?

His horse is named Wednesday.

Time with Dad

Make a Smilebox slideshow

Tomatoes-Tomahtoes

We have been working so hard on our yard. Super hero dad loves to work in the yard and has so many projects lined up. He finally finished our fence. It covers the entire backyard and there are gates on either side of the house. This is so exciting because now I can leave Egypt to play in the back and not worry that she will go into the front yard. Kids in - deer (and dogs!) out.

Today Romania and Egypt and I went over to my uncle's house to borrow his rototiller. I ran into him yesterday when I went to my mom's to feed her cat. (My sister and I have vowed not to kill the cat. Last time they went on a trip, we barely remembered to feed the cat and wondered how the thing managed to survive). So when Egypt and I got there, my uncle was mowing the strip of grass down their gravel road. I said something about wanting to til an area in my yard to plant vegetables and he said he had one. Great! After all the craziness died down today, super hero dad was able to finish the last part of the gate and install it. He even tilled the vegetable area and offered to put the boys to bed so I could plant my tomatoes. Then I stayed outside extra long so I could water all my plants and just listen to the silence. The kids are extra excited (not about the tomatoes) but about the three ginormous blueberry bushes we have. Last year we picked probably 10 to 12 cups and we have that and maybe a quart more. My favorite thing is to watch them just eat them off the bush.

The 12 Lives of Miss Molly

I felt I needed to post an update on our cat Molly. She has bounced back yet again, defying the odds of a cat who is 16 and possibly has cancer. I've been giving her amoxicillan and an anti-nausea medicine twice a day. The couple times I forgot, she threw up on my floor, so apparently it's working. She is eating all the time, so I'm hoping she'll gain some weight here and weigh more than my sister's Yorkie.

Day of Fishing

Today we went out to a park near Estacada for a day of free fishing. Parks all over the state offered free day use and some even had free fishing clinics for the kids. They had park rangers to help with setting up poles and free bait. They even had poles you could borrow.

The little pond was cute, but very muddy. I had a hard time getting down this steep embankment that had been travelled so much it was basically a big mudslide. We got down to the bank and got the poles baited and tried to cast, but it was so crowded, we spent a lot of the time pulling hooks out of tree branches and untangling lines with our neighbors. The kids had a good time. They even got hot dogs, chips and pop for their efforts.

Make a Smilebox slideshow

We ended up moving to the other side of the pond and fished near my sister and her kids. Holland even won a raffle prize - a book flashlight. We all ended up pretty muddy but the kids didn't seem to mind that they didn't catch anything. Oh well. Maybe we'll head out again on a less drizzly day and try again.

Writing Breakthrough

I wish my scanner worked. Then I could show off what Holland did tonight. After talking with my friend in special education, I took her suggestion of reading to the boys. Living books is the way to go. I think I'm going to use the Charlotte Mason philosphy. Holland had a huge success tonight.

We started reading "The Tale of Despereaux". While I was reading, I had both boys just start to draw what they were listening to. Whatever picture came to mind. After about 5 chapters, I stopped reading and asked them to describe their drawings. Holland had a great picture that included several ideas on one page. He even had word bubbles for two characters with something funny they said. Then I asked him to write just one sentence to describe his drawing. He asked how to spell the mouse's name and I showed him the book. He completed the first sentence without even asking for more help. I said he did a great job and said I would start the next chapter. He said he had another sentence he wanted to write. So I sat back as he and his brother each wrote 5 sentences on the back of the drawings. I have never seen him so excited about something he did. He had the biggest grin on his face. I told him we would be doing this all summer and he yelled "yea!"

I feel even more confident now in making the decision to school him at home. If he's not going to be able to attend the charter school and get the kinesthetic learning I feel he needs, then he will blossom at home.

IEP placement meeting

If I would have written about Holland's IEP placement meeting right after I got home, it would have looked something like this:

The district rep and the principal both felt that a placement at the Charter School was not a good fit. The district rep is worried about Holland's behavioral issues; the principal is concerned they won't be able to meet his academic needs. I brought up Holland's current school behavior, how he's not the one throwing chairs, running out of the room or needing physical restraint; he's the only student in his class that qualifies for the summer program based on academics and not on behavior. They are worried about withdrawl when he is frustrated with the academics (his withdrawl looks like him putting his head down on the desk and not working. What kid NOT on an IEP hasn't done that?). The principal said that the teacher would most likely not be able to adopt a whole new curriculum for just one student.

I basically get no support from his current school. If I decide to pursue placement at the Charter School, they will not help me. The district rep wants to keep him at his current program. I do not want him around kids with that kind of behavior. I do not want him doing busy-work. I don't want him doing a sight-based reading program that takes every word out of context. The placement I want, they don't want; the placement they want, I don't want. It was suggested that he could do a transitional program in the mornings and then go to the charter school in the afternoons for the hands-on activities. But after considering this, I felt the settings would be so different that he wouldn't be able to adjust to such opposite expectations.

This afternoon, I emailed a former co-worker about my situation. When I taught at a deaf school, she was the special education teacher there. When her kids were born, she quit teaching and now homeschools her two children. She started up a program that links homeschooling families with the local science museum. She also helped write a charter for a school in our city that pairs the idea of homeschooling within a structured school setting. I asked her what she thought I should do. She thought with Holland's special needs that he was in a program that wasn't addressing his current learning abilities and also wasn't recognizing his need to build and create. The whole reason I want him at the charter school is for the hands-on approach; the whole body learning experience. What she made me realize, is that once again, I'm the one who can provide what he needs. Now that his mood is regulated, we can focus on the learning part. I'm hoping to supplement homeschooling with classes at the homeschooling charter school. If we got in full-time, it would mean being able to meet with an educational support person weekly to monitor progress and help with the academics.

I know that his current program is not going to like me pulling him out of there. They think he needs the socialization (what public school doesn't frown upon the 'socialization' needs of a homeschooled child?) and that he would get more benefit out of a transitional program. I do not feel that way. I want him in a place that he will be able to move about, and explore and experience nature and science. So for now, I will keep Romania at the environmental science charter school, homeschool Holland and use the homeschooling charter school as a supplement program.

This next school year looks nothing like what I pictured last year. I will again have two kids in two different locations, getting out at two different times. Oh, the craziness of education.

My Nice Quiet Afternoon

Ha ha ha ha! I am laughing just reading my own title. When does a mother ever have a nice quiet afternoon? After getting Holland on his bus and taking Romania to his school, Egypt and I ran some errands. I needed to get a portable CD player for a new audio program we are trying out through Holland's OT. I also stopped at Toys R Us to look for a stroller that can carry a child weighing more than 40 pounds. I've been thinking I will need to have a larger stroller on hand when Egypt's arthritis flairs up again and she can't walk. Then I stopped at the bank.

Egypt and I came home, colored, read and ate some lunch. She then set up her pillow and blankets on the couch downstairs and decided to nap. I've let her do this before, but she never sleeps. Today she actually slept. So it was no surprise with a quiet house and a sleeping child, that the phone should ring and someone from Romania's school would tell me that he was throwing up and having diarrhea. Holland would get out of school in 30 minutes so I had to call them and tell them not to put him on the bus. Then I had to wake up Egypt and pack her in the van, drive to pick up Holland and then drive over to Romania's school. His face was ashen white and he was sitting in front of the boy's bathroom with a garbage can in front of him in case he needed to throw up again. Poor guy. It took him all of 5 minutes to fall asleep in the car.

He woke up when we got home and asked if he could play. I told him he needed to rest and once on his bed, all snuggled with blankets and "The Cricket in Times Square" audiobook, he fell asleep again.

What was I going to do today?

Our Molly

Today I took our cat Molly to the vet. Back in January, I thought she was a goner for sure. She hadn't eaten in four days and I just figured it was kidney failure like Millicent 1 1/2 years ago. I fed her through a syringe for a week and gave her medicine three times a day for 10 days. She actually perked back up. We were all shocked. She looked healthy. She started sleeping on the end of our bed. Super-hero dad said he thought she was a different cat. Of course, that's one of the legendary 9 lives of cats. Her personality changed when her sister died, but this was different. It was like we invited a new cat to live with us.

Well, it's happened again. She was eating a little each day, but throwing up every couple of days. It's just awful to see an animal suffer. Today the vet said she had lost 3 pounds since he saw her four months ago. He felt her abdomen and said there was a walnut sized growth. They could biopsy it, but whatever it was, they would have to do surgery to remove it. I can't do that. She's 16 years old. I don't want her to be in pain. So, we are saying goodbye to Molly this weekend and I will take her in next week.

I can't believe I will be animal-less.

All Gone

The "cupcakes" were devoured in less than two days. So today I made a cake. It used a regular cake mix and then you throw in 1 cup of pumpkin. Isn't it great? Now my kids eat vegetables.

A Shameless Ploy

So how DO you get vegetables into kids? All three of my kids used to eat anything, and I mean anything I put in front of them. Then, at whatever age, they would decide they didn't like something. A food they had just eaten yesterday was suddenly 'gross'. What is up with that? Romania used to eat Green Chili Enchiladas. He loved them. Now, food cannot touch any other food on his plate. Thank goodness great-grandma gave him a food tray with separate compartments so no food is contaminated by another food. I have already explained how it all gets together in his stomach. No dice. He's also the worst vegetable eater on the planet. He kindly answers "no thank you" when something new is on his plate. Well, at least he's polite.

Holland is getting better (shock!) about eating new things. I made a delicious chicken with proscuitto ham and provolone cheese wrapped around it. Romania cried when he saw what was for dinner. I knew things had taken a turn for the worst when someone asked "what are WE having for dinner?" when they saw what I was cooking. I just say "see you at breakfast" when they don't like what I've cooked.

Today super-hero dad took the boys to the lake cabin. He's looking for flat rocks for our neverending backyard landscaping project. It's raining here (what else would it be doing on a holiday?) and I didn't feel like debating our outdoor activities with Egypt, so we stayed home. There's a lot to do when the weather's good there. But not much for a three year old in the rain. We've had a great day. I did some sewing, a little laundry, we did puzzles and read books. But my greatest achievement came while she was sleeping. I checked out a book at the library by Jessica Seinfeld. She wrote this cookbook about how to sneak veggies into your kid's food without them knowing. I know. I know. Horrible that you have to resort to sneakiness. But at this point, I really don't care. As long as I can get it in them, does it really matter if they know it or not?

Last week I made frozen yogurt pops for them. They loved them. Easy enough because they drink the fruit smoothies I make with blueberries and strawberries. So I had a can of pumpkin puree and had bought yellow squash. I'll admit. It's not my favorite vegetable. But it's less scary than say, spinach or beets. I thought I'd better start with a dessert to ease them into it. By the time Egypt woke up from her nap, she smelled what I had baked and asked about it. I said, "get some clean clothes on and come down for a cupcake!" She was so excited. She helped me add the chocolate chips to the last bunch of mini cupcakes to put in the oven. The larger ones were cooled, so I gave her one. Yes, they're quite orange. But kids usually don't turn their noses up at pumpkin. The squash was an added bonus. There's even a recipe for cream cheese frosting - mine came with that. I cannot believe how good they were. No eggs. There's probably enough binder in the squash and pumpkin. And just 1/2 cup of brown sugar. We'll see if the boys like them, but I'm pretty sure they'll be fooled, uh, I mean, they'll love them.

Next I'm going to try baking some doughnuts (with pumpkin and sweet potato), blueberry lemon muffins (with squash), baked egg puff (with squash) and chicken nuggets (with sweet potato). I may actually have to purchase this cookbook.

Juvenile Rheumatoid Arthritis information

You would never guess by looking at her that Egypt has Juvenile Rheumatoid Arthritis. The injection yesterday has given her complete use of her knee again. The swelling is still apparent, but she is active again and very happy. I've felt the need to give out more information about JRA, because whenever I've explained to people over these past few weeks that my daughter has arthritis, they look at me like I'm nuts. "That's an old people's disease!" they declare. "Are you sure your doctor didn't mean bursitis?" So here is a link to more information about how many children (an estimated 300,000children in the U.S.) are affected by some form of arthritis or rheumatic disease.

There is also a Race for CARRA (Childhood Arthritis & Rheumatology Research Alliance) coming up on June 8th, if you're in Portland, Oregon. The doctor treating Egypt is on the board of this organization. Find a link to CARRA's website here and here's a link to the fundraising race/walk on June 8th. The cutie who is the "grand marshall" this year was diagnosed with systemic arthritis 3 years ago. It affected her entire body within three days of onset. Please consider either joining the race/walk or donating to this very important research.

First Injection a Success!

Today was the big day. Going to the hospital for Egypt's first cortisone injection. My mom came over at 7.30 this morning to come with us. Egypt couldn't have anything to eat after 3 this morning (do they even realize what they are saying? What. Am I going to wake her up to feed her something?) But she could have clear liquids up until 7. I went in to her room just before 7 to check on her. I didn't want to wake her up, but if she was awake I wanted to give her some apple juice to tide her over. Luckily, she was awake. She never asked for breakfast (phew!) and just seemed a little sleepy on the car ride over.

Parking was a breeze. Must be because we were there at 8.30 in the morning! I knew right where to go because of all of Holland's previous doctor appointments and surgery back in January. I filled out paperwork and then we were called back to the little waiting room to get weighed, temperature taken and heart rate checked. The anesthesiologist was very nice. He explained the possible side affects and told me he didn't want me in the room where they would do the injection. He said if kids have a bad reaction to being put under, the last thing he wants them to see is mom standing there doing nothing. So we hugged and kissed and she was handed to a nurse. The doctor said the whole thing would take 10 minutes.

True to his word, he came out to the atrium 10 minutes later and said the injection went smoothly. He was, however, disappointed that he was unable to remove any fluid from the site. This means that the swelling is due to soft tissue inflammation and will prevent the swelling from going down right away. We were able to go right back and see her. She was pretty loopy from the anesthesia and she kept asking for food. I was able to rock with her for a few minutes and then we were kicked out. That was the only negative thing about the whole process. There was another family scheduled to come in right behind us. There was barely 10 minutes of "recovery" time. I had to hurriedly put her pants back on and get out. The next time we do this, I will be asking for a few more minutes, or at least another room we can go sit in before we have to jump in the car and drive off.

She could still have other joints become affected so I am to watch her other knee and also her ankles. We're praying for another three to six months of pain-free living. She was walking pretty tender on it for a few hours (the injection itself can cause discomfort) but by early afternoon, she had come to me and showed off her new ability to walk without limping! Praise God! I can't believe how fast it took. Before long, she was running around the house and yelling at the boys. Great to be back to normal.

A 7 year-old's worldview

Yesterday I took Romania and Egypt to the dentist. He didn't have school because the kids were to do a community service project. (More on that later). They were able to squeeze us in this morning.

The dentist said that he would be doing an x-ray of Romania's teeth. He showed Romania the little white squares, explained how to bite down and showed him the machine that would take the picture. Romania asked if he should smile for the picture! Classic.

We also got into discussing our state's recent Primary election. The hygenist jokingly asked if Romania had voted and we were all surprised when he said "yes." She went along with this and said "Who did you vote for?"
His reply? "Obama!"
"What? How do you know who that is?"
"Some boy on the bus was talking about a woman named Clinton and he said he liked Obama."

Doesn't God give great teachable moments?

Who's Got Your Vote??

If you're unsure where your candidate for President stands on the great moral issues of our time, take a look here and here and here and here

These are all public records. These are the candidates' OWN answers listed in the Voter's Guide. Before you make your decision on who will lead this country, make sure you know exactly where that person stands. Don't let ignorance be your guide. As Christians, we need to be looking for a person who will lead us in a morally upright way. There are more issues involved than who has the best plan for the economy. I'm not saying that's not important; but how a person would vote on family values issues says alot about his or her character. If they are willing to disregard a human life, how will that affect their entire presidency? Trusting God will protect our country doesn't mean we ignore our moral convictions. No person on earth will make a perfect President, because we are not perfect beings. There will always be disappointments with any decision made. But simply voting for someone because you disliked this last presidency is irresponsible. I didn't agree with everything he did, but he was consistent on the stands he took with regard to human life and that to me is more important than paying $4 a gallon for gas.

Guilt-free schooling

Romania's school depends a great deal on parents volunteering since it is a Charter school. They don't get 100% funding from the school district, so in order to keep costs down, they strongly encourage you to find a way to volunteer. They leave it totally up to you, but everyone is expected to contribute.

I was all for that-count me in. Before Holland was diagnosed with Spina Bifida, had surgery for tethered cord and needed numerous doctor appointments, follow ups and fittings for orthotics. Before Egypt was diagnosed with Juvenile Rheumatoid Arhritis and I spent all my free time scheduling and shutteling kids around to 7 different doctors. I actually was able to help out several times in Romania's class. The kids are very sweet. You show up one time and all of a sudden, everyone knows your name and wants your help! I even went in the week before Mother's Day to make homemade bird suet with the kids. That was a huge project. I had to recreate the experience 4 different times since there were 20 kids. I felt given the circumstances, I was doing pretty good with my volunteerism.

So today when I was waiting at the bus hub for Romania, one of the moms came over to me and said she needed some information from me. She said she hadn't seen my name on the "check-in" list in the office for volunteer time. I said I didn't know there was one. She wanted to know if I had been able to help out in the classroom at all. I explained with a 3 1/2 year old tagging along it was hard to work out a regular time to come in. I mentioned the bird suet project. She asked about how many hours I had been in. I said "Oh, 4 or 5". (Remember, we've only been going here since January). She said, "A week?" I about fell off my seat. I said, "No, I've been to the hospital a lot. Not much time to come in to school." If another mom (who knows our situation) wasn't sitting right there, I would have been so embarrassed. Ok. I WAS embarrassed. If she only knew what craziness she was asking of me. I get it. They need people to volunteer. That is just not something I'll be able to work into my insane life right now.

Nothing like guilt-free education.

Oh-and Romania said he wanted to be homeschooled again. Ugh. I told him I couldn't possibly do that right now. He actually comes home in a good mood every day. I think he's just so tired that he needs a reason to be home. He gets along with his peers; his teacher called him a "rock star" in math and his reading has really taken off. If I didn't have so many medical issues right now, I would probably pull him out. I'm looking forward to the summer because I'm going to be schooling both boys. I've opted out of 'extended school year' for Holland so he can do summer camps, swim lessons and our week at the family lake cabin. Can you say 'year-round-school'?

Rough Day

Every morning I have to go get Egypt out of bed. She calls for me to come get her and I have to carry her around. To the bathroom. Downstairs to eat. To the van to take Romania to school. Her knee hurts so bad that it takes several hours for the pain to decrease so she can walk. Usually by 11 or 12, she's walking more normal, though she may "favor" that leg a bit more.

Today was a really bad day. At church I had to carry her from the van to her classroom. Then one of the teachers had to carry her to the room where the kids sing songs together. I had to carry her out of the van, into the house. Then to the table for lunch and upstairs for her nap. She slept for three hours and had wet the bed, so I carried her to the tub for a bath. It was 4 o'clock and she was still hobbling around. It was so awful to watch. By 8 o'clock, she still had not walked without limping.

We have five more days before the injection. I'm going to call the hospital to see if they can get her in sooner.

I'm on serious brain overload

Today I picked up Holland from school at 12.30 for a 1 p.m. appointment with his psychiatrist. I had forgotten to tell my mom what time and she raced out here so I could be on time. We got to the doctor's office and the door was locked. We looked at each other and just stood there. We heard voices inside, so I said, "should we knock?" He knocked quietly on the door and someone opened up. Well, dumb me, our appointment wasn't until 3 o'clock! I picked him up from school an hour and a half early, raced out 30 minutes away and we had a two hour block of time.

I asked if there was any way the doctor would be able to come in early (nope). Romania needs to be picked up at the bus hub at 4 and there would be no way for me to be there to get him. With my parent's one car situation, it's hard to scramble transporation. I called my mom and explained to her my mistake. She suggested calling my dad to see if he could be back in town to pick up Romania. He was able to do that, so that just left 2 hours for us to kill. We went to Trader Joe's and wandered around buying a few groceries. Even with the wandering, it only took 30 minutes. So we drove around and found a Starbucks. I bought Holland a hot cocoa and myself a raspberry iced tea. We still had almost an hour left. So I just decided to drive around and see what we could find to do. I made a wrong turn and ended up getting on the freeway. Oh well. We killed more time by going to the mall and walking around.

We made it back to the doctor's office with time to spare. We had a good conversation. We're going to try to take Holland off one more mood stabilizer so he'll just be on one. The doctor was excited about the possibility of him being able to attend the Charter school that Romania goes to. I also have several summer activities lined up (if expenses work out) that would just be perfect for the boys. There's a SCRAP camp that the campers use recycled materials to make things. Right up his alley. Problem is it costs $100 each and I want them to go together. The groups are really small; there are 3 adults for the group of 10 kids and each adult is an AmeriCorp member (they do various volunteering projects for youth and communities; mentoring, etc). There is also a sports camp at our church and I want all three kids to have swim lessons before we head to the lake for our annual vacation.

It was hard enough keeping track of all of Holland's doctor appointments: Physical Therapy; Psychiatrist; Therapist; IEP meetings at school; orthotics fittings and follow ups for his surgery. Now I'm adding all of Egypt's appointments: initial evaluation by the Rheumatologist; eye doctor appointment to check for eye disease; and now these every-three-month injections at the hospital. The dam's gonna break.

First Injection Scheduled

Last week when we saw the pediatric rheumatologist, the nurse said she'd be calling later in the week to schedule the first injection. On Friday I got a message on my answering machine that I could barely hear. I've been having trouble with my phone for over a week. The garbled message got me frustrated, so I braved calling the phone company (there's an $80 charge if the problem is found to be your equipment and not a line problem).

The phone company had called back within a couple hours and had someone out. About 10 minutes after he first called (and heard all the buzzing) he called a second time on a crystal clear line. I was wowed and asked what he did. He said there were "rodents" in the line box! Gross! He didn't mention if they were alive or dead but said he's found interesting things before.

So now I was able to call back the nurse and we got Egypt's first injection scheduled for May 23rd at 9 a.m. The anesthesiologist will call me (done that before!) and go over the procedure.

AC Gilbert Museum

Today super-hero dad was working on the fence. There have been some bumps in the road and today was no different. He found a drain pipe in his way and so now he has to re-think how he's going to put a retaining wall up before building the fence. In the early afternoon I told him I felt like going somewhere. I just wanted to get in the car and drive.

We decided to drive down to a children's museum that is reciprocal with our local children's museum. Love that we can get in free! We only had an hour before they closed, but the kids had such a good time. Watch the slideshow of all the fun things they did.

On the way home we needed to find some place to stop and eat, so I emailed a friend of mine that used to be my supervisor when I taught at the deaf school. She sent back names of a few good restaurants, but it was decided that we would go to a restaurant that had a 'kids eat free' menu on the weekends. We've been to this restaurant before, so should have been okay. The kids' meals were fine, but mine and super-hero's were the worst we've ever had. I decided to go healthy and have a chicken salad, even though fries were calling my name. I found 5 little chunks of chicken in this huge mound of lettuce and too many soggy green and red peppers. I couldn't believe how bad it was. Then, DH's steak was practically raw. He had asked for well-done and it was bright pink when he cut into it. He sent it back to be cooked more and it came back tough and gritty. I guess you get what you pay for.

Make a Smilebox scrapbook

Twirly Girl

This is the second piece for Etsy. I loved choosing the fabrics. She kept asking me if it was for her. I think she's thankful that this one isn't! She said the straps "tickle" her. Off to make changes to the design. But here's a cute picture of her in the "Morning Glory" dress I have on etsy. It was a beautiful sunny day (okay, half-day) so we ran outside to take some pictures in the dress.

Distracting myself

I'm trying to distract myself from reality by sewing. Sounds dumb. But I've been wanting to sew and sell on etsy for quite a while. I've made several very nice pieces, but the weather's been so lousy I can't get outside to take pictures in natural light.

She looks so innocent. Her bouncy blonde curls. We already have an eye appointment tomorrow to check for eye disease. I was googling "JRA" and found out that the eye disease can be glaucoma, cateracts and infections. She has a 20% chance of developing inflammatory eye disease. There is a 40% chance of having serious long-term disabilities. There's a 20% chance it will go on to affect other joints. Now, every time she complains about something hurting, I'm moving that body part to see if it's swollen. She complained of her toe hurting just before bed, and I took off her pajamas to inspect it more closely. She complained of her elbow hurting at dinner; she couldn't climb into her high chair. I immediately checked the elbow movement. I'm going to become this totally paranoid mother.

So far, I can find nothing good about this. How will a blind child communicate with a deaf dad?

Not the diagnosis I wanted

Took Egypt to the pediatric rheumatologist today. She does have JRA (juvenile rheumatoid arthritis). So far it's just in her knee, but it could flare up in other joints. He checked everything, even how her jaw moved. Since it's been longer than 4 weeks since I noticed it, he said it's past the point of resolving on its own. If it was a result of the virus she had, it would have gone away.

There's more bad news: she has to have injections while sedated every three to six months. They inject right into the joint, so they have to sedate. And it gets worse: she also has to see an opthamologist because apparently there is an eye disease that goes along with JRA and she is high risk (for several reasons) to develop it. She could ultimately lose her sight if we don't monitor it. There are no symptoms.

I felt numb driving home from the hospital. I couldn't believe I am facing another major illness with my kids.

Fashion Icon

I went fabric shopping on Saturday with Egypt and bought more than I ever have in one shopping trip. I'm planning to make girl's clothing. I need to start earning money to defray some costs we're incurring. Here is my first creation; it's from the same Japanese pattern book that I made the gingham blouse. I made a matching headscarf and on Sunday for church she had on the skirt with boots. You should also check out my new etsy store here. You'll also find a listing for wall letters. I am a woman of many talents *snort*.

Holland's Project

I live in a world that is overrun with projects. Putting ink in ice cube trays to see how it freezes in water; using a wagon, my canning pot, nails, little green army men, tennis racquet, water guns, pinecones and water hose nozzle to build something (don't ask me what it is. It's just a big mess in my opinion). But a few days ago he was working out front with his rollerblades. I went out to see what all the noise was (why is there noise with rollerblades?) He had removed the innards of the rollerblades, found 2X4's and NAILED them to the wood. He was planning on using them as skates. This was not surprising because a couple weeks ago, he built a luge out of a big empty IKEA box and a skatboard and actually flew down the sidewalk on this thing. So, here's my attempt to laugh off the rollerblade incident. My laughter is pretty quiet right now but here's a picture. I'm working on getting him a broken washing machine so he can take it apart and we can be done with ruining perfectly good rollerblades.

The Foreign Language Project Success

A couple months ago I posted about buying this pattern book written entirely in Japanese. Can you believe I finally completed something? It was quite a trip trying to trace all the correct pattern pieces without it being in English. The top is so cute. It's black and white gingham; sort of a swing top style.

Some Good News

It seems easy to get caught up in all the negative. Easy to focus on the hard spots in raising kids. Today we had a session with Holland's therapist. She really made me take note of how much his behavior has improved. When she asked me to name the things that he was doing well, things that he's had a good attitude about, I had no trouble coming up with great examples of how he's doing at coping with change or frustrating situations. I also had some great examples of how his memory is improving. How he had remembered, when no one else could, where Romania had left his glasses. How he can fold an 8-step paper airplane without looking at the directions. His mood is just generally happier. It's nice to have Holland back.

The next doctor

We have an appointment for Egypt on May 7th with a Pediatric Rhematologist. It's at the same hospital where Holland had all his appointments for the tethered cord and his surgery. My pediatrician told me she was glad I got in to see this particular doctor because he's so good. She said if he wasn't available she would have sent me across state lines! So glad I didn't have to do that. She has been so good in referring doctors that I would go anywhere she told me.

As I was getting everyone ready to leave for school the phone rang and it was Egypt's pedi. She had blood work done last week and we were waiting for the results. I've never had the doctor call back about lab work, so I was kind of uneasy. She said two of the tests made her suspicious. They were both tests that could be interpreted as being positive for rheumatoid arthritis. The one test that was supposed to show if it was arthritis came back negative, but with the other two showing signs of being high, she wasn't ready to rule it out. So glad we are seeing this doctor next week. She favors the other leg - you can see it when she sits and she walks up the stairs on her toes.

Hello Birdie

Today my mom came over to watch Egypt while I had a meeting at Holland's school. After I came home, we were sitting at the table discussing all the bird feeders I had hanging up. The kids and I get such a kick out of watching so many different birds come to eat the Nyjer thistle and the Black Oil Sunflower seeds. You get such a variety of birds. They are amazing creatures. I have a clear plastic feeder attached to the window by suction cups. We've been waiting many weeks to see birds come to this feeder. It just takes one brave bird. And today we had two! (Click on the picture to get a great close up of our friends!)

Well, I didn't see this coming

Today I ended up at a doctor's office, but it wasn't with my normal patient. Egypt has been having leg pain every morning when she wakes up for about a week or so. It usually goes away, so I didn't think anything of it. I thought it was a leg cramp. But this morning, super-hero dad noticed that her knee was swollen. After dropping Romania at school, I called our pediatrician to get in as soon as possible. They had an opening at 10.

After the doctor looked at her swollen knee, I knew something wasn't right. Egypt hasn't taken any falls recently and there was no bruising. She gave me several possibilities and the main one was juvenile arthritis! Her symptoms are consistent with an arthritic joint because there is no external bruising and the pain goes away after she's been on it for awhile. She asked if Egypt had been sick recently and I told her she'd had a high fever 3 weeks ago that lasted for 3 days. She said it's not uncommon for a viral infection to bring on arthritis. Her x-rays were normal; no fractures. She also had blood work done and we'll know the results in a few days. The doctor wants us to get in with a pediatric rheumatologist as soon as possible. Then we'll know for sure what to do from there. Meanwhile, she's on Motrin three times a day and I have to make sure she doesn't get stiff and do some movement exercises with her.

Luckily, the new doctor will be at the same hospital that Holland's been at. I totally know how to navigate my way around!

The Fruits of the Spirit

One of the things I love seeing in my kids is a recognition for what is right, pure and honest. The past few days I've been hearing Egypt say the sweetest things that shows me she is listening. She's often told me that she is obeying when I ask her to do something and a few days ago pointed out that "Jesus wants us to obey." And tonight at dinner she was looking at the kid's menu at the restaurant we were at. She noticed a treasure chest filled with gold coins and exclaimed, "Money for Jesus!" Even little things like this are baby steps in the right direction!

Memory Breakthrough

Today we were getting the kids ready for church and could not find Romania's glasses. (These are the times I wished I'd ordered 2 pair, but just didn't have the funds at the time). We couldn't find them anywhere but determined we'd clean the house looking for them after church.

After lunch, I sent Romania upstairs to look for them again. He could not find them anywhere, so I enlisted the help of Holland. We went through all the rooms he'd be in at the time of getting ready for bed. Still came up empty. Then Holland said, "I think they're outside. We played outside (with a neighbor) and we were wrestling. I think they fell on the ground." I couldn't imagine they were outside. So dad and the boys went outside and came back with the glasses! Holland actually remembered the last time he saw them. So that memory is from two days ago and he somehow was able to recall where he'd been the last time Romania had them on. Yea!

It Is a Big Deal

Today I was able to take Romania to the bus hub instead of driving him in to school. Holland had the day off for conferences so I hurried everyone along so we could make the bus connection. I walked with him to the place where the Dragonflies waited and he immediately engaged in conversation with kids in line. They were talking about the latest movie we watched called "Bee Movie". The one thing that Romania has is a sense of right and wrong and he said, "but they say, 'Oh, my G*d' in the movie." This mother standing right there said, "yes, it's a very common expression." Just like that. I wanted to lecture her on how it wasn't 'just an expression.' I wanted to tell her that she may think it's okay, but my son was pointing out how it's not.

These are the kinds of messages that now surround my kids being in public school. I now have to work twice as hard to keep my kids pure and from assuming that just because some adult deems something 'no big deal' that it is in fact a big deal to us.

Stop the Madness!

Holland has been really into these computer sleuth games starring Nancy Drew. They are a great series of mysteries where you have to solve a series of clues to finish the game. The one we are doing now is about a kidnapping in an old theatre. I am becoming obsessed with this stupid thing. I almost didn't even make dinner tonight (shock!) I get caught up in helping Holland maneuver through all the clues since he's not reading. Sometimes they are very tricky. We found a website that gives hints and spoilers that help a great deal, but you can still get pretty turned around. I'm glad we can spend so much time together doing this and am amazed at how long this can hold his attention since there's not a lot of visual stimulation.

The Principal

On Friday I met with the Principal at Romania's school to discuss whether Holland could attend there next year. Since he's on an IEP, the 'team' needs to decide if it's the Least Restrictive Environment (LRE). She looked at his IEP, the evals I had from the therapists and said it's a tall order. But she didn't think it was appropriate to dismiss the notion of a trial period. How will we know if he can succeed in this setting, if he's never given a chance in the setting? I'm sure the IEP team thinks he still needs to be contained in a special ed class. I probably would have said the same thing at the beginning of last year. But he's obviously getting frustrated and I don't think they fully understand his mental capabilities (which is why I'm looking into educational therapy).

I also think he needs to be around kids who behave more age appropriate. There are kids in Holland's class who throw chairs and knock over desks (at which point the entire classroom has to be vacated. How can that be conducive to learning?). He has never done that. I don't think that he would. His behavior has improved a great deal. The medications that he is on now have transformed him. I think he needs to be in a place where there is lots of activity, opportunities to go outside and play and explore, hands-on projects and various learning experiences to keep him busy.

IEP meeting is next week. We'll see how much stock I hold in this arrangement.

Got $5010??

That's how much the educational therapy is going to cost us next year. Which means it most likely will not be happening. I cannot imagine telling my husband we have to spend $5000 on something he will not think necessary. I was shocked when the director emailed me the cost for next year. Since we are not attending the Christian school that's on the same campus, there is not a price break. And it went up (obviously) from last year.


So my request is that everyone reading this blog start praying for a way for us to afford this therapy.

Educational Specialist

I seem to be cramming more and more into each day. Today after dropping Romania at the bus stop and my Physical Therapy appointment, I met with an Educational Specialist. I brought testing results, Holland's current IEP, the evaluation from the OT and an evaluation from a Psychologist as well as samples of his writing, his math and pictures he drew.

I'm thinking about getting some outside help. I feel like he's stuck where he's at. He was put on a new reading program at school because they felt he wasn't making any progress with the phonics program. So now, I have to be careful not to tell him to "sound out the word". He's had evaluations with an OT and PT that I think should be worked into his current IEP, but the school has to administer its own testing before adding those goals to his IEP. There has to be clear evidence that his motor skills, planning, processing skills and coordination are directly linked to his educational performance. (This all seemed very obvious to the learning specialist.)

It sounds like exactly what he needs. They treat the underlying causes of the learning difficulties rather than just treating the symptoms. The sessions are on a regular school year schedule. Two 90 minutes sessions per week at $3500 per year. I'm waiting for God-intervention at this point.

We bought a van!

On Friday I drove up to Super Hero's work and picked him up so we could go look at a van. The guy we had bidding on vans for us wasn't able to get any of our top three picks. But he did buy another van, same year we wanted, to sell on his lot. He offered it to us before selling himself. We test drove it, tried out all the seat mechanisms and then decided that it wasn't worth an extra $4000 for power doors. That was the only thing I wanted on a van. I've never had it, but it seemed so helpful with three kids and rarely any free hands. The miles were higher than we planned on, but for basically the same amount we got from the insurance for our wrecked van, it just didn't seem prudent to pass it up.

We spent almost 2 hours at our credit union filling out paperwork and deciding on a loan for the van. It's been serviced, has new brakes and new wipers; it looks brand new. We should be able to pick it up on Tuesday. The kids are thrilled we won't be cramped in a Forester much longer.

Balloons for Corey

This afternoon the kids and I released balloons in memory of Corey Halpin, the little boy I posted about earlier who died when a dresser fell on top of him. Many moms around the country who were touched by Corey's story released balloons in his memory today. Romania said he hoped the balloons reached him in heaven. It's so nice to be able to do something for someone without looking for anything in return.

"Do not be deceived"

"For the time will come when men will not put up with sound doctrine. Instead, to suit their own desires, they will gather around them a great number of teachers to say what their itching ears want to hear. They will turn their ears away from the truth and turn aside to myths” (2 Timothy 4:3-4).

Self over truth; man over God: Can a Christian be so deceived? Evidently. Paul referred to the Galatian church as having been “bewitched” (Galatians 3:1), and Jesus warned that a prominent sign of the days before His coming would be an increase in deception (Matthew 24:14).

The Answer to THE Question

Today I was at my Physical Therapy appointment for neck and back pain from my accident. I really thought it would go away, but it hasn't. And of course, the more I do around the house and with the kids, the more pain I feel.

Today I brought Egypt with me. Both boys are in school, so it was the best time to go in. I have stretches to do and she checks my range of movement. Then she gave me a back and neck massage. We're chit-chatting and she asks why Egypt isn't in school. I said, Well, she's only 3 1/2. She asked me What do you DO all day? So for the benefit of all those well-wishers who wonder what a Stay-At-Home-Mom does all day, here's a sample schedule:

We get up before all three kids so we actually GET to take a shower.
Get all three kids dressed, lunches packed, remind them to get their socks, shoes and notebooks. Stop doing Origami, we need to focus on getting our teeth brushed. No, turn off the TV and get your shoes on. Please take your dishes to the sink. Ok, you can feed the cat. Let's check your backpack so you don't accidentally take toys to school. Oh, I forgot to sign your daily report. Find a pen, scribble my signature, put it back in the backpack. Now, two of you, get into the car and you there, wait outside for the bus. No, I'm not going to carry you to the car you can walk by yourself. Stop bothering your brother and get into your car seat.

One kid leaves on the bus and we pull out of the driveway only to notice we're attempting to drive 10 miles on Empty. Go get gas. Turn around and drive back down the hill to school. Come back into town and stop at a store for prescriptions and a few necessities. Come back home and feed the cat and bring the bags into the house. Make a few phone calls, and then head back out the door for the PT appointment. The rest of my day will look like this:

Feeding Egypt and putting her down for a nap. Making more insurance related phone calls or calls about a new van. Going through paperwork for an upcoming IEP meeting. Eating lunch before running out the door to pick up Holland from school and taking him to a doctor appointment. Rushing back home so my mom can leave and I can run over to the bus hub to pick up Romania. Letting the kids play outside, trying to do some laundry, picking up the mess that whirled through the house, cleaning up the kitchen from last night, and trying to figure out what to make for dinner, which nobody will like anyway.

Doing more laundry, getting three kids ready for bed which always takes longer than it humanly should. Sewing a few stitches on a new blouse for Egypt. Getting backpacks and clothes ready for the morning. Doing research online for alternative learning methods. Picking up Legos, dirty clothes, cleaning a bathroom, washing sheets and sleeping bags and finally clearing the clean clothes off my bed so I can crawl in.

So, I guess I don't do much all day.

Praise God!

Today I spoke with the therapy place where Holland goes to check on my benefits. My insurance only allows $2500 per calendar year (and that's not alot). I wanted to find out how many more visits we could have. I have about $1400 left, so we can probably go in eight more times. I also called the office where he will be fitted with orthotics to find out how that was being billed. She said I have great benefits (never heard that before!)and that because we've met the deductible (his surgery) that the orthotics would be paid for 100%!!

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

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.

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.

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?

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.

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!!

Science Fair at Heron Creek

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

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.

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.

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.

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.