Friday, May 30, 2008

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.

Wednesday, May 28, 2008

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.

Monday, May 26, 2008

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.

Saturday, May 24, 2008

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.

Friday, May 23, 2008

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?

Thursday, May 22, 2008

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.

Tuesday, May 20, 2008

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'?

Sunday, May 18, 2008

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.

Wednesday, May 14, 2008

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.

Sunday, May 11, 2008

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.

Saturday, May 10, 2008

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.


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Friday, May 9, 2008

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.

Thursday, May 8, 2008

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?

Wednesday, May 7, 2008

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.

Monday, May 5, 2008

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*.

Friday, May 2, 2008

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.