A Picture's Worth a Thousand Words

I got a phone call yesterday from a place that I've been trying to have evaluate Holland since June. They are so popular that it takes months to get in. They evaluate language processing skills and help find the ways your child best learns. The kids were all quiet until the phone rang. They're like a heat-seeking missile. As soon as I got on the phone, the dam broke. If it was my sister, it would have been easy to hang up and deal with the beasts. But this was the woman trying to schedule an appointment. I interrupted my conversation 3 times to get them to stop fighting. At one point, I hid in my room (no lock, so I had to keep my foot on the door while my 3 1/2 year old cried at the door).

The woman asks me if the one having the problem is the one that will be evaluated. Oh how embarrassing. Nope. That's my middle and youngest going at it. She was very nice saying she understood what it was like. She made an interesting couple of comments. She said that I needed to draw with him. That he could not see himself in the situation. I can completely understand this, because that is exactly what he looks like. He gets "stuck" in the moment and cannot go forward or backward. I actually used to do this with my students I taught many years ago. The woman that referred me to these people was actually the teacher I student taught under. She's the one that got me started with drawing. I used it all three and a half years of my teaching, but didn't continue it once I became a mom. I kind of laughed in my head when she said I needed to draw with him. Can you just see it? "OK. Let me put you on hold while I draw for my 7 year-old the reason he shouldn't be yelling at his sister about those dominos."

I decided to give it a go for post-behavior reinforcement. I sat down with all three of them and began drawing what I was doing and what they were doing. I didn't even tell them what it was. But Romania said, "That's you on the phone and me yelling at Egypt!" Great. Now we're on the same page. I went over what everyone looked like. How Holland hid out in the other room. How Egypt and Romania kept screaming at each other. Then I crossed it all out and drew two options that Romania had. I asked him which he thought would be easier for him and he picked the "walk away and wait for mom" instead of the "sit there and let her touch my dominos".

The true test came this morning however, when I was getting ready to head to Costco with three "I can't walk in a straight line" kids. I thought why not try this before we leave? I drew me pushing the cart into Costco, with Egypt sitting in the cart and the two boys walking behind me. Then I drew several pictures of what not to do and crossed them out. Then walking through Costco, the boys pretty much stayed behind me and Egypt *gasp* did not ask ONCE to be taken out of the cart. This is a girl who has driven me out of Target because she wouldn't sit down.

After lunch I had to run a couple more errands because we'll be gone this weekend. I'm trying hard to focus on correcting behavior. I have a couple charts; the "IF-THEN" checklist and "The Blessing Chart". They've been great tools, but I wanted to add "The Brother Offended" chart, too. There's a great homeschooling bookstore very close to me and I wanted to go in quick to look around. I didn't get to stay very long because I forgot to draw a picture before we left. I'm not kidding. It was the complete opposite of Costco. Two of them were arguing over toys; then one started driving the little car around the aisles. Someone pushed, someone cried and I had to leave.

I thought maybe Costco was a fluke and they just happened to behave. But after seeing their behavior in the bookstore, I'm going to buy a couple of sketch pads. I'll leave them conveniently around the house and my van for future counter attacks.

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.