Sunday, February 15, 2009

Questions for the Kiddos

1. What is something your mom always says to you?
Abby ~ "You're cute" Andy ~ "Go get your room clean"
Alex ~ "lots of things like 'eat your dinner'"

2. What makes mom happy?
Abby ~ being nice and smiling at her Andy ~ hugs Alex ~ when I obey

3. What makes mom sad?
Abby ~ if I lie Andy ~ not obeying her Alex ~ when I don't obey

4. How does your mom make you laugh?
Abby ~ tickling me Andy ~ tickles Alex ~ tickle me

5. What was your mom like as a child?
Abby ~ cute Andy ~ mommy Alex ~ watching Mickey Mouse

6. How old is your mom?
Abby ~ 29 Andy ~ 29 Alex ~ 69

7. How tall is your mom?
Abby ~ 40 feet long Andy ~ 29 pounds Alex ~ 40 feet long

8. What is her favorite thing to do?
Abby ~ hug me and play with me and kiss me Andy ~ eat Alex ~ go outside

9. What does your mom do when you're not around?
Abby ~ play with the boys Andy ~ look for me Alex ~ write some letters

10. If your mom becomes famous, what will it be for?
Abby ~ singing Andy ~ watching movies Alex ~ going outside

11. What is your mom really good at?
Abby ~ playing the piano Andy ~ singing Alex ~ playing balls

12. What is your mom not very good at?
Abby ~ riding around Andy ~ not eating chocolate Alex ~ carving pumpkins

13. What does your mom do for her job
Abby ~ watch the kids with dad Andy ~ watch kids Alex ~ watching the kids

14. What is your mom's favorite food?
Abby ~ "maccaroni and cheese, no... pizza, no... chocolate" Andy ~ chocolate
Alex ~ vegetables

15. What makes you proud of your mom?
Abby ~ when she listens to me Andy ~ hugs Alex ~ playing ball

16. If your mom were a cartoon character who would she be?
Abby ~ a princess - Jasmine Andy ~ a boy Alex ~ Mickey Mouse

17. What do you and your mom do together?
Abby ~ play Andy ~ play games Alex ~ go outside

18. How are you and your mom the same?
Abby ~ we are both girls Andy ~ we have the same feet, face, and hair
Alex ~ we both make sandwiches

19. How are you and your mom different?
Abby ~ we both wear different size clothes Andy ~ you is a girl but you look like a boy
Alex ~ we have different ears

20. How do you know your mom loves you?
Abby ~ cause she always kisses and hugs me Andy ~ lots of kisses Alex ~ gives me a snack

Look at Me


I can sit!!

Creativity

My kids have been so creative lately!! Look what they've been up to...
Andy and Alex got into making snowflakes shortly after Christmas. Look at my table and floor!!
Alex invented this mouse trapFood Art ~ nuts, skittles, and grapes stuck on with glitter paint (Andy and Alex did this while I was putting Ben down for a nap yesterday afternoon)Want some Plato worms?Ben found a creative way to sit in his bouncy. Relax bud!Abby turned this toilet paper roll into...this necklace!! (She'd been collecting these for awhile)Abby composed this song all by herself!!
Abby has been keeping a little journal every night. Here are some of the things she has written (just like she wrote it).
"Rosis are Red
vilets are blue
for all you dou
I love you"
"Valetimes is a speshl time war we all can get togethr to say I love you in a ditharent way. Happy Valentimes Day"
"I love you
you love me
Togethr we will dy Happy.
Stay with Me
I wish you wod
cus I love you
as I shod."
"It is Satrday morneing
the days gust degun
so get out of bed and have sum fun"
"I love art
it is so much fun to pant and culr
I love me familey and school"
Abby's favorite thing to do is art projects. Lately she's been choosing to draw and color instead of watch movies. Woah, that's big. Here is some of her artwork...


I have pictures all over my house. I don't know what to do with them!!! I'd be happy to mail one to anyone who wants an Abby origianl. Ü

Happy Valentines Day

I totally meant to post this yesterday but it just didn't happen. We hope everyone had a lovey dovey day!!



Abby made us breakfast in bed - all by herself!! Daddy happened to go downstairs just as she was finishing and helped her bring the tray up. Cereal, oatmeal, and hot chocolate. Mmmm...







Ben's First Valentines!!

Mommy's Roses Daddy made calazones for dinner (Mommy made a yummy cheesecake)

Wednesday, February 11, 2009

Hungry!!!

Abby is out of control hungry!!! That is one of the side effects of her prednisone medication - it makes kids ravenously hungry. Yep, it sure does. She wants to eat ALL the time. Prednisone also causes swelling in the face and our little girl is starting to puff up. It's mainly in her face but she's also getting a tummy on her. It's called Cushingoid ~ where the face, neck, and trunk get heavier and the arms and legs stay skinny. She's gainded about 7 pounds in the last few weeks. It's coming on so fast and it's so sad. She's given us some funny comments from it though. I already posted one in the "what they've said" comments. She says that almost every night - "I can't wait until morning so I can eat breakfast!" Here are some other funny eating comments...
The second we're done eating breakfast she'll say "When is it going to be lunchtime?"
When my mom was visiting last month Abby finished her plate before my mom did. I think we were eating taco salad. Abby kept eyeing my mom's plate and was saying how she wished she could eat more. As soon as my mom took her last bite Abby said, "Can I lick your plate?"
She was estatic on Sunday when she learned church had been moved until 2pm and we would be having dinner for lunch. Dinner is her favorite meal and now Sunday is her "most favorite day because I get to eat my big meal earlier!" Seriously I've never seen such joy in her face.
I burned some muffins the other day but apparently I "make the best burnt muffins in town." The boys thought so too.
And today's comment was "this food is so yummy I can't keep my hands of of it!"
We are doing our best to control her portions and make sure she's eating healthy. She's become a salad freak and will eat carrots and yogurt now. Those are good things right?
We met with the rheumotologist yesterday and Abby had her first IVIG treatment. The IVIG helps fight the infection and helps slow down the immflamation of her muscles. Daddy went with her for her treatment while Mommy stayed home with the other kiddos (which is hard because I get the information second hand). Again she is improving but still not meeting the milestones she should be. I'm still confused on what those milestones should be so that is the question for next time. She improves everyday but definately is not back to normal. What kid goes to the park and just sits the majority of the time? We're supposed to aviod excessive weight gain but how do you get a kid to be active and exercise when it hurts her to move? The doctor did say to start tapering the prednisone so hopefully that will slow the weight gain. I also haven't noticed much of an improvement in her rash. She licks her fingers a lot; we think because of the rash.
We're hanging in there. Abby is a trooper with her meds. She will start her shot up again this Friday after being off of it because of antibiotics. So far she hasn't shown any side effects to the IVIG which can include itching, hives, shortness of breath and extreme headaches with vomiting. We'll keep our fingers crossed that she doesn't.
On a different note Abby asked me today if it was ok if a white person marries a black person. She was just wondering about that in case her and Khalil meet up again when they are older and decide to get married. I told her it would be fine for a white person to marry a black person but right now Khalil couldn't take her to the temple because her wasn't a member of the church. Abby plans on inviting him to Primary. Ü

Sunday, February 1, 2009

History in the Making


Dermatomyositis

On January 2nd Abby was diagnosed with Dermatomyositis. Is is an autoimmune disease that attacks the skin and the muscles. For several months Abby had been complaining about her legs hurting her. We dissmissed it at first as growing pains. We even took her to the doctor where she had x-rays and blood work done but everything came back normal. However things still just didn't seem right. She had a hard time walking up the stairs, could not sit cross legged on the ground, it was hard for her to put her shoes and socks on, and it got to the point where she pretty much refused to sit down on the floor because it hurt too much to get up. She also seemed to be losing strength in her arms. After another call to the doctor and another blood test done that looked at her muscles they found certain of her enzymes to be high. This, as well as a rash that had developed on her knees, hands, and elbows (a rash that I didn't even really notice - I thought they were scars on her knees and figured her hands were dry), pointed to dermatomyosits. This link tells more about the disease, explains all the medications that she is on (she takes 4 pills at breakfast and 7 at dinner), and the side effects of the medications.
We feel so blessed that our pediatrician, Dr. DaSilva, knew about this disease. We've heard of kids who've had to go through months and months of harsh testing in order to diagnose it. Dermatomyositis is rather rare, they say only 2 to 3 out of 1,000,000 kids are diagnosed with it, but Dr. DaSilva had had a childhood friend who had it and so she recognized the symtoms. Apparently autoimmune diseases can run in families. Tyler's sister has rheumatoid arthritis and Tyler suffers from ulcerative colitis both which are autoimmune diseases. They are triggered by a virus. Some other symptoms of dermatomyositis are complaints of tummy aches which Abby has been complaining about for over a year and a poor appetite. Abby was eating very little around Christmas time and was even choking occassionally on some of her food. Our pediatrician sent us to Pheonix Children's Hospital where they have one of the best pediatric rheumatologists in the country (another blessing). He admitted her to the hospital for 3 days to start her on a heavy dose of a steroid, Prednisone, that is supposed to help with the immflamation of the muscles and crank down the immune system so it will stop attacking the body.

Our baby girl at PCH


Abby and Daddy doing crafts


All her Get Well Balloons



Abby's Nurse Warren



Abby's IV and rash on her hands and knees


Ready to go home - Room 222B was where she stayed

Abby had fun while at the hospital ~ clowns came to see her, therapy dogs visited her and layed on her bed, she got to do art projects and play at the play room, and best of all watch continuos Disney Channel. She wasn't too excited about going back to school when she got home. Tyler stayed with her in the hospital as I couldn't be away from Ben that long and the boys were sick on and off that weekend.

We go to pysical therapy once a week. Abby loves going there. She's plays all kinds of games with her therapist Jessica and she doesn't even realize she's exercising. Abby takes her medication so well; no complaints at all and she is usually the one who reminds us that she needs to take them. The other day we were out of one of her meds (the pharmacy hadn't gotten it filled as soon as we'd hoped) and she said "Hey, where's my Prevacid?" It made me laugh, bittersweetly, that she knew which pill she was missing. One of her medications is given through a shot once a week and she doesn't like that one too much. Ok, she doesn't like it at all. She is so happy because this week she has an ear infection and can't have her shot because of the antibiotic. Ü

So brave!!

Another blessing, or tender mercy as people have referred to them, is that Abby's teacher has a special needs daughter. She takes some of the medicaitons that Abby takes so is aware of the side effects and is very sympathetic to Abby's needs. They have made accommodations for her at school ~ sits on a chair at rug time instead of on the floor, can sit out during PE if she needs too, can take the elevator if they need to go upstairs. Also my Uncle Paul is a dentist. One of his hygenists has a daughter with dermatomyositis. For how rare the disease is we think it is amazing that we've been able to find someone to talk to who has been through it all. Abby was able to meet her daughter and I think it was good for her to see that eventually this should all be ok and things will go back to normal. This is something that Abby will have her whole life but most kids go into remission and lead healthy active lives.
We returned to the rheumotologist on January 20th. Dr. Shishov said that Abby was moving better but not as well as she should have been for the doses of medication she was on. Also her rash was looking worse than it had originally. He wants to start her on an IVIG which as far as I understand it is a once a month day long IV treatment that pumps her full of antibodies. He said he usually doesn't start patients on this treatment until 2 or 3 months into it but he could tell Abby would need it eventually so we might as well go ahead. He wants to decrease her dose of the steriod as soon as possbile as it is a very harsh medication but can't do it until she starts showing major improvement. Most kids on it gain quite a bit of weight because they are constantly hungry. Water retention and swelling also contribute to the weight gain. Abby is starting to swell in her face a little bit. We are trying to control her appetite as best we can. Other side effects are stomach aches, brittle bones, mouth sores, eye problems; lots of fun stuff!!! And of course this IVIG has its own list of side effects. Our pediatrician said that sometimes you wonder what is worse - the disease or the side effects of the meds. However if she wasn't on the meds she would continue to get weaker and weaker which could lead to deformity and paralysis. We've heard that even homeopathic doctors say to stay on these medications as these are the best for them.
Abby improves daily. She goes up the stairs so much better now and is able to get up and down off the floor without needing to hold on to anything. That is so big!! When she was in California with my parents before Christmas she would drag a chair from the kitchen around so she wouldn't have to sit on the floor. The other day she just plopped right down. Abby is proud of her accomplishments. She is basically in a happy mood although she does complain of head aches and stomach aches almost daily. We haven't heard back from the rheumotologist yet as to when she will start her IVIG. It has to be approved by the insurance first. Sometimes I wonder if she even needs the IVIG. She has improved so much since she went to her appointment on the 20th. However yesterday we went to a birthday party. Andy and Alex jumped in the bounce house the whole 3 hours we were there. Abby jumpled about 2 minutes and had to stop because her legs hurt. Duck, duck, goose was hard for her to play. Her rash still isn't getting better. I guess we better do what the doctor says. Please remember our family in your prayers that Abby will continue to improve and that her doctors will know how best to treat her. This has opened our eyes to all the scary things that children can be afflicted with and we are so thankful that our trial is small compared to that of others.

On a much happier note Abby earned an award for being on the Principal's Honor Roll for the 2nd quarter at her school. She also came home on Friday and announced that she was Student of the Month in 1st grade for the month of January. Go Abby!