We've Been Bumped

I cannot keep track of all the appointments we have going on. Yesterday morning, only one day after scheduling Holland's biopsy, I got a call from the doctor's office saying he had to reschedule because he'd be out of town. I have this sneaking suspicion that he's taking an extended Labor Day holiday, but who knows. The good news is, now I can go to Romania's first day of school. The bad news is I have to feed Holland wheat for another week and a half and witness major meltdowns. It's been incredible to see the change once I reintroduced wheat. He gets upset at the most minor things. He looks to be in a fog and his face looks so tired.

The other thing that has happened is the IEP team for Holland has decided that they need to have a transition meeting to talk about me pulling him out of his program. Nobody seemed to care when I was pushing for placement at the Charter school, but now that I've pulled him out of public school (gasp!) everybody has something to say. It was scheduled this week, but the district rep said that his boss couldn't make it so they had to reschedule. (BTW - this boss has never been to any of the other placement meetings when I was requesting the move to the Charter school.) So he rescheduled for next week, but that was the week of Holland's biopsy. So I called to reschedule because I didn't know how he'd feel the next day. I get a call this morning saying they can do it on Friday next week, but they are trying to coordinate 7 people. I told the district rep the only person who needs to be there is my Educational Specialist. She's the one helping with the transition. I haven't heard back if the meeting is in fact on the 5th, but I cannot imagine going into this meeting with 7 people having strong opinions about my decision to pull him. They've even invited the principal from the Charter school. Why?? She is no longer involved in this. They don't want him, why do they need to have her there?

To top off all the chaos and confusion, I have yet to receive even one of the books I ordered for Holland's school year. I know that they are in fact in the school office, but there is one person entering in all the books received and was told on Monday that I may not even have the books by the start of the school year. "What am I supposed to do? I have no books!" The secretary told me to "be creative." I'm wondering if this is worth the hassle.

We've Scheduled a Biopsy

Surprised? We were, too. Apparently my pediatrician's office jumped the gun on going gluten-free. The gastroenterologist called me on Saturday and said because of the blood test results, Holland would need a biopsy to diagnose celiac 100%. I guess you can't ask too many questions. I'm pretty thorough when it comes to finding things out. But I've been led on this wild goose chase. I thought that the blood test would be the end of the celiac question.

We're scheduled for a biopsy on September 2nd. Bummer. I have to miss Romania's first day of school. And we have to be at the hospital at the unruly hour of 6.30! Hopefully there are no other procedures that need to be done before we find the answer to this riddle.

Nebraska Law Goes Too Far

I read an article in my local paper a few days ago and was shocked at what a new law in Nebraska allows: the abandonment of children. Many states are implementing a way for mothers of newborns to not be prosecuted for abandoning their month-old babies. They can drop off a baby (usually younger than 30 days), no I.D. required, no questions asked, at a hospital or fire station. But this law was set up because a growing number of mothers were leaving their babies for dead. I guess states felt it was better to give an "out" so the baby wouldn't end up dead.

Well, this law far exceeds any common sense. Some lawmakers wanted to extend protection to "all minors". So, if you have an unruly teen, a disabled child or are just plain frustrated with parenting your three year-old, go to Nebraska and you can dump your child in the arms of the state, no questions asked. The kicker is, even if you're not the parent, you can do this. If the child is in the care of a babysitter or another caregiver, they too, can reap the benefits of this ludicrous "safe haven" law. Here's the entire article.

Day Three of No Wheat

Holland's been eating gluten-free for about three days now. I thought I was imagining a positive behavior change, but my mom was over and noticed the same thing. The best way to describe it is he's more carefree. He's actually cracking jokes and laughing. We played a game of Uno last night and he kept snickering every time he'd give me a "Draw Two" card or a "Skip". Lately he's not even been interested in playing games with us. It was so great to see him in such a good mood. He's also been pretty easy to please with the food changes. My mom found this great gluten-free chicken strips and he said they tasted just like Red Robin's! We're still working on the gluten-free oatmeal.

I'm Ready!

Last night when I went in to check on the kids, you know to make sure no one was hanging off the bed, or stuck in a weird position, I found this little treat in Egypt's room. I took this picture in total darkness. Last year when Romania started going to the charter school, I had to get all three kids ready to actually leave the house by 8.30. And anyone who homeschools knows that actually leaving the house is much different than just "being ready" for school at home. So we got into the habit of hanging up everyone's clothes for the next day. Here is what Egypt hung up, on her own, and the skirt was pulled out of the laundry basket. I guess I didn't wash it quick enough for her. But I just thought it was so funny how she even included underwear!

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.