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.