r-word.org

Thursday, April 30, 2009

The hives...

The doctor put her on Zyrtec for 5 days and said that once she stops taking it if the hives return lather, rinse, repeat. Little joke there : ) She said if they return to put her back on it for 5 days again and do this cycle for 3-4 weeks or until they are gone once she is off of it. She said not to worry until she has had them come back every time she comes off the pills for 3-4 weeks. Then I guess we test her for food allergies and do other things to figure out what is going on. I just love how medicine is such a crap shoot. Poor Olivia can't catch a break. She is so sick of being sick!

Wednesday, April 29, 2009

Sakes alive! Liva has hives!!

My poor little baby squirrel broke out in hives all over tonight : ( The doctor recommended Benadryl (got to CVS 10 minutes before they closed!) and told me to bring her in tomorrow. Hope she will be alright. She is my sickly little bird. Update tomorrow.

Stephen wrote a word to communicate!!!!!!

Stephen spontaneously wrote "DEMCO" on a piece of paper at school and took the staff to the library with the word. They couldn't figure out what it meant or what he wanted. I almost passed out when I saw that word written in the note from the teacher in his daily log. I know what that word is!! They are the school supply catalogs that he collects that he gets from school when they don't need them anymore!! He also wrote it with sidewalk chalk, sand and on paper with pencil and marker!!

My son doesn't write independantly and certainly not to communicate. He has a very weak grasp with a pen, pencil, etc and doesn't apply much pressure so usually we have him use a marker. He usually only copies things with a model or traces letters that are dotted lines. I called the teacher hoping she would still be there to tell her what the word meant. She said she figured it out after he left school and was sooooo excited that her persistance in having him practice his handwriting was paying off : ) He even wrote it for me when I gave him a pen and piece of paper!

I love when Stephen gives us proof that he is really in there. Those of us who know and love him know how smart he is and it's nice when we have a story to tell other people that shows he is a little diamond in the rough.

Monday, April 27, 2009

Does that one go to 11?



They switched until my I hit play on the one Olivia was borrowing from Stephen and it blasted her eardrums out! Stephen likes volume! Still gotta see if I can set the volume internally on that new Zune....


More pretty flowers...

These are some other flowers from around the yard.







Here comes the sun!

My plants are getting some sun!! As my landlord pointed out as the days get longer and we enter into summer the sun will be shifting. I'm sure my little plants will be fine : )


Sunday, April 26, 2009

What color is my thumb?

I hope it's green!!
Well, the seeds are planted and the rock wall is in place. Now, the only problem is that that side of the house doesn't get direct sunlight about 3-4 feet from the house. I'm keeping my thumbs, I mean my fingers crossed.



While I played in dirt the kids played in the pool.

Summer in April!?


We have had gorgeous weather the past 3 days. I hope wherever you are that you are enjoying spring!
We bought our first electric air pump for the pool (s). Such a luxury!
My garden was full of rocks! And big stumps. What a mess! That's me sifting rocks...




And more rocks....









My "plan" is the put the rocks on the edge as a wall to keep the dirt in my garden. Anybody need some rocks?






I transplanted some potted plants to the garden. The purple ones (name escapes me) came in a hanging pot and the roots were so choked that I split up the 3 plants. The third one went back in the pot.



I'm going to plant a wildflower mix in the rest of the dirt today. I am no green thumb. I have no idea what I am doing. I welcome all advice on keeping these poor plants alive : )



Saturday, April 25, 2009

The sneakiness

My son is quite amused with himself right now. If he could carry on a conversation he would be bragging on the phone to one of his friends about his accomplishment. We moved my archived photos to the attic because he kept getting into them when they were stored under our bed.

Since then he has been looking around in our room trying to find them. He just found them. In the attic. The attic just has a spring eye and hook on it. I told him in a vary serious tone of voice that he should stay out of the attic and that he messed up all the totes he went through. He just kept smiling and the more I kept telling him how upset I was and why I was upset the more he kept smiling...almost giggling. The little bugger. So proud of himself and the sneakiness. He knows that you gotta be smart to be sneaky. I'm a little proud of him myself : )

Thanks Liva!

My daughter just took a really great picture of me to update my profile photo. Not bad for a seven year old!

Thursday, April 23, 2009

What the heck is Segmental Neurofibromatosis or Segmental NF-1

If you know please tell me! Seriously, my daughter was just diagnosed with it a couple months ago. It is a rare form of NF-1. The only diagnostic criteria she meets is the humongous cafe au lait spot that covers her left chest goes up the underside of her left arm up to her elbow and onto the left side of her back. Inside the borders, mainly in her armpit are tons of light freckles. She also has a cafe au lait spot that she was born with on the inside of her calf on her right leg. The markings on her left side magically appeared out of nowhere about 2 years ago. The spot on her leg also filled with freckles and moles. The markings on her left side were preceded by missing pigment or white spots, on her left shoulder and neck. If I hadn't noticed the missing pigment and followed their progress, I probably never would have noticed the cafe au lait and freckling.

Info on NF-1 and NF-2 can be found at http://www.ctf.org/ She didn't inherit it (only 50% is inherited) from our family. She probably had a spontaneous genetic mutation while in the womb. It is the mildest form, so the doctors tell me. There really isn't much out there on this. I even went to The Rare Genetic Disorder website on the recommendation of the genetic counselor and there was no info. Boy, it must be rare!

The geneticist tried to give me reassuring percentage statistics that my daughter would PROBABLY never have any of the negative consequences of having this disorder. However, ADD and ADHD can occur in individuals with NF-1 and my daughter was just diagnosed with that (not that we hadn't joked about her having it for years so it was no surprise). She also complains of headaches and pain on her left side as well as other body pain, which can occur with this disorder. She also has a lump on the left side of her back which is probably muscle overgrowth. The geneticist also thinks that her left side in general is bigger and needs to be monitored.

Just like Autism no one can tell me how things are going to play out with this disorder. In some ways this gives you hope. If anyone can give me any info or knows anyone with it, please contact me.

Wednesday, April 22, 2009

My little artist


I blog about my son a lot but my daughter is one interesting little kid herself. She is a very prolific artist at 7. Here are the pictures she drew today and yesterday.


She drew this after we saw Bedtime Stories.


She watched Finding Nemo this morning and drew this.


Do more with less!


In honor of Earth Day I have decided to share some of my Earth friendly and money saving tips.


I love these containers because they have easy off labels (just cut and peel, no glue) and are very sturdy and the perfect size for snacks or organizing little things and they look great!
I recycle my CLEAN paper towels. Whenever someone washes their hands they shake out the paper towel that they used and put it under the sink. Once they are dry I use these for cleaning up spills, cat barf or just cleaning with sprays.



This ice cream rocks. Let me say that I used to be an ice cream snob and only bought brand name ice cream. My husband is not as picky and in an attempt feed his ravenous ice cream habit while saving us money tried this brand. We buy it at Walmart for 6 bucks and change. It contains 1 gallon and one quart. It is a light ice cream but it is the creamiest and smoothest ice cream I have ever eaten. The containers also make great buckets. I have used them for cleaning, yard work and yes, my daughter's stomach flu.




This soap pump is a recycled generic hand soap pump. The base is a hummus container. I take stuck on labels off containers by using my blow dryer on high and slowly peeling the label off. If there are any sticky bits left I use the sticky side of the label I just pulled off to pull off the bits.





I made my own whole wheat bread crumbs today for the first time and they came out great! I prefer to feed my family whole wheat and whole grain products whenever possible. I love making turkey meatballs but hate using white bread crumbs. I have to travel 1/2 hour away to buy expensive whole wheat bread crumbs. No one in my family eats the ends of the bread loaf. My son will not take pills so we give him his liquid siezure medication on bread under grape jelly twice a day and go through a lot of bread. I started saving the ends about a month ago to try and make these bread crumbs and save us some money. I cooked 10 pieces in a single layer on 200 degrees for 1 1/2 hours. And grated them as shown above. Can't wait to make meatballs!!

Happy Earth Day!

In honor of Earth Day I am posting some of my favorite outdoor/nature photos that I have taken over the years-Enjoy! By the way any creature or critter shown in a container was later released back into the wild ; )