We Love Taco Bell!

Prayer request

Recently we’ve noticed that Lucy’s arthritis has started spreading to other joints. At first it was only in her ankle, but now it appears to also be in her wrists and possibly in one of her knees. A doctor’s appointment today has confirmed our fears. The doctor we see really wants to aggressively treat this and not let it spread anymore. So now in addition to the medicine we hide in her food everyday we are going to start having to give her a shot once a week. We have to go for training next week so we can properly give her the shots. To top this all off we have to take her once a month to get blood tests to make sure she is not experiencing any of the side effects that these shots can give her. Drawing blood from Lucy is very hard, her veins don’t cooperate, and she screams and cries the entire time; last time it took almost a half hour. Please keep our little girl in your prayers.

The good news is that none of this appears to be bothering Lucy at all (with the exception of the blood tests and as long as your not messing with her wrists or ankles, but if you do she’ll let you know about it). She knows how to limp to avoid pain in her ankle and how to avoid putting pressure on her wrists. She loves life and she makes us love life all the more from sharing life with her.

Update

Well since you have some new pictures to look over I thought I would give you a little run down of the new things I have been doing lately.
One of the newest and most exciting developments is that we have met a wonderful tutor. Her name is Joanne(she works with people with ds that range from age 2-20. Right now she works with 26 differnt people) and I work with her on Fridays for an hour. She has helped Mommy and Daddy know what things they should be working on with me. Since seeing her (about a month) I have started using the potty after every meal, I can recognize about 5 letters of the alphabet, I can read Mom, Dad, Lucy and Simon (when mommy shows me the card that says Simon I say SSSSS), I'm working on my colors. I'm very good at matching but working on naming. I love to color! Joanne says I'm one of the best colorers that she has worked with.
I've been going swimming every week to work on my arthritis. I'm getting more range of motions but still have a little limp. Hopefully summer time will bring more improvements. Keep praying that it doesn't spread and that it goes away!
My Favorites:
Books, My Play Kitchen, Wonder Pets, Coloring, Simon, Spaghetti, Pudding, Pizza, Grapes, My blanket, Singing, Dancing, Animals, Hats, Veggie Tales Sing Along
I Don't Like:
Taking my medicine, Carrots, Potatoes, people messing with my ankle, getting my hair brushed, (It's hard to think of things I don't like- I'm a really likeable kid!)

Dad says I'm the cutest ever!

Simon turned 1

I can't believe brother is now one! We are starting to have so much fun together. My favorite thing is to make him laugh.

In a box

All smiles

Eating

I'm starting to eat more and more of my food all by myself. Mom and Dad said I've really turned the corner in this area. Actually, I get pretty mad right now when I'm not allowed to feed myself.

Little Brother's First Steps

These are some of Simon's first steps which took place early last month. He started off pretty wobblie and fell a lot, but now he's almost walking faster than me. But don't worry cause I still know how to keep him in his place.

A Note From Mommy

Today Lucy turned 2 1/2. When Kevin brought this to my attention it got me thinking and the rest of the night Lucy has been on my mind. 2 1/2 wow!
Many times I find myself wishing I was a talented writer. Tonight happens to be one of them. I wish I could find a way to put into words how remarkable she is. For those of you who only know her through this blog you are really missing out.
She loves to laugh. She loves to make others laugh-especially Simon. She has the cutest laugh.
She loves to sing. We are getting kinda sick of the Veggie Tales CD. But there's nothing like it when she sings and does the motions to He's Got the Whole World In His Hands.
She's rotten, but the kind of rotten that is just perfect and makes you smile.
A couple of weeks ago we went to Children's for her 2 year check up. The doctors continue to be impressed at her personality and abilities. All of her therapist are getting her ready for her transition into preschool. There will be a series of evaluations. Although I'm sure she will do fine. There's part of me that could care less how she does. She's remarkable whether she can stack 5 blocks or 8. I don't care if she can't strings beads or copy specific lines. What they say about what she can or can't do means nothing. She is amazing if she can do it all, and she is just as amazing if she can't do any of it. Though her life we have praised God for how she continues to blow the socks of doctors. I'm continually thankful for her health and abilities but God is still good on the day that comes when she doesn't meet "their" standards. She will always be remarkable. When she was first born my prayers seemed to have a why, why, why, help, help, help feel to them. Tonight as I held her in my arms and she rested her head on my shoulder the only words that came to mind were: Thank you, Thank you, Thank you! I am so stinkin' lucky to have her in my life.

All Smiles

Trick or Treat

I was a bee

I passed out candy

The Lion King (Simon)

Halloween 2007

At the pumpkin patch

Dad's favorite picture

Update

Friends and Family,

Well it looks like Lucy has Juvenile Rheumatoid Arthritis. But I don’t think it is as bad as it sounds. Actually, we are all just really glad we found out what was wrong. We saw a Juvenile Rheumatologist yesterday at Children’s Hospital and he told us he knew she had it before he even saw her based on her charts. And after he saw it he is 99.9% sure she has it. You can’t be a 100% sure since there is no test for it, but he says everything he sees and hears fits it exactly.

The good news is that the earlier of a diagnosis of it usually gives us the best chance of getting rid of it or at least managing it. He really hopes through medication and physical therapy we can eliminate her limp and we really hope we’ll start to see her run soon. There is also a good chance that it will go into remission as she grows older.

She only has it in one joint and possibly one toe. The dangers are that it could spread to other joints and that it could cause eye problems. But since we caught it early we can treat it to keep it from spreading and we’ll have regular eye check ups to help catch any problems there as early as possible.

So after many doctors appointments trying to find out was wrong and some just trying to convince some doctors that something was wrong we finally have an answer, and for that we are very relieved and even excited that we have a treatment that we can finally begin. That is an answer to prayer that we praise God for. If you want to continue to pray for Lucy pray that it doesn’t spread, her eyes stayed protected, and that her limp goes away. And if you want to be very bold in prayer, pray that she is able to start running by Christmas.

Thank you all for your prayers and all your support. I wish you all could see more of her. She is honestly the most wonderful little girl I know. My two biggest joys I get in watching her are going to the store with her and watching her smile and wave to people as she sits in the cart. There is rarely a person she waves at that can refuse to wave back and it isn’t brought to a big smile themselves. The second is watching her and her brother play together (he’s the most wonderful little boy I know). I can’t even describe it except to say it is priceless, that is until he grabs a hold of her hair or she decides to sit on him and then it gets a bit ugly.

Well, must run! Love you all!

Mandy, Lucy, Simon, and Kevin

Prayer Request

A note form dad:

Like a lot of you know Lucy has had a slight limp with her left leg since sometime around May. At times it gets better and at other times it looks a little bit worse. A couple of weeks ago she woke up from a nap and wouldn’t or couldn’t walk. After a little while she began to walk again, but with a big limp. Over a three day period she would go back and forth from walking to not walking, the whole time seeming to be in at least a little amount of pain and having a slight fevor. During this time we saw several doctors, but no one was quite sure what was going on.

Yesterday she started having the not walking episodes again. It obviously bothers us to see her in pain and to not have much of an idea why it is happening. Luckily Motrin seems to make her feel better when she is having an episode. The latest theory is that she may have Juvenile Rheumatoid Arthritis, and to be honest the symptoms she has matches what we found out about on the internet.

So, after consulting with her doctor we decided to have her go see a pediatric specialist in that area. The only problem is that it is extremely hard to get into see a pediatric rheumatologist. Then once you get in there they have a hard time diagnosing it. Then on top of all that there isn’t much they can do for it once they diagnose it. So it would be really nice if you could be praying for Lucy and the rest of us during this time.

Thank you very much!

Kevin, Mandy, Lucy, and Simon

PS. By the way our little friend Ruby is doing really great, thanks for your prayers on that one!

Thanks for Waiting

Sorry it's been so long since I've gotten around to updating my blog. We have just had a pack summer. I thought I would just take a minute and let you know what I've been up to theses past couple of months.

June- On the 12th I turned the big 2. We had a party at my Nana and Pawpaw's house. It was so good to see friends that I don't get to see very often. I also had a little neighborhood get together here at my house. I'm so lucky to have such great neighbors.

We also took a trip to Texas. It was big fun. We stayed with Aunt Susan, Uncle Jose and my cousins Austin and Zach. I think one of my favorite things was going to the movie theater for the first time. We saw Curious George and I laughed out lound! While in Texas we went to a family reunion and Mom, Simon and I got to meet some of our family for the first time. They are all such wonderful people!

July- Daddy took at trip to New Orleans with the church and I stayed home and help mom with Simon. Mommy took us to Nana and Pawpaw for a week of spoiling! While there we went to COSI with Madi and Luke and had a great time at Kid's Space. This is Mommy's new favoite place to take us. Here we are splashing around. They had to scoot me away from brother because I was getting him soaked.

Mommy and Daddy also took me over to the Grove at MVNU to take my 2 year pictures. They turned out great!

The summer was also spent watching Daddy play softball. Here's Ella and I enjoying the game.

August- It's a blurr. Trips to the Zoo, playing in the back yard with Simon and all those sort of things. I do love the zoo. I love seeing anything I can get close to. I really love the monkeys.

Well that's my summer in a nutshell.

I'm continuing to blow the socks off everyone. I'm always learning new word and signs. I still love to read and sing. I say the cutest e i e i oh that you have ever heard. Speaking of reading .. the other day I was playing by myself and Mommy heard me laughing so she came in to see what I was up to and I was just sitting there reading a funny book about a dog. My parents are still amazed at how lucky they are to have me as a daughter.

I take another trip to Children's on Friday so they can check out my leg/foot/hip. I've been walking with a little limp and it doesn't seem to be fixing itself.

To end the update I thought I would let you all see some pictures of my adorable little brother. These are ones Daddy took of him at the park. He's now 7 months old. We get along great!