Why is Lucy different?

At the Buddy Walk I overhead a kid ask their parent, "why is Lucy special?" The child was quickly pulled aside and shhhhed. I smiled, because I love having those conversations and I love those innocent questions. Those looks they give when they realize Lucy is 7. Simon is so interested in the fact that he is younger but taller. Lucy is growing up and so are her friends and I've began to wonder what questions they are asking their parents and since I've had 7 years to think about how I respond, I wondered if I could help in any way.

What is down syndrome? When Lucy was growing in my belly her body formed differently. I like to think that nothing went "wrong," it's just different. I wasn't sick and neither was she. We were lucky and Lucy entered this world completely healthy.

Because her body is formed differently she has to work harder for things that come easy to us. She had to work harder to learn to walk, eat, and talk. She has to work harder to learn things that are easier for us to learn. It takes a lot of practice to get something right.

But somethings aren't different.. She loves princesses and dancing. Loves to help me cook and set the table. She wants to do things for herself. She likes to pick out her own clothes and likes her nails painted. She loves to play pretend. She's doesn't like Dora as much as she used to. Her new favorite movie is Annie.

We do things like the Buddy Walk to show Lucy and others who have down syndrome that we love them and we are so proud of how hard they work. We value what they have to offer even when the world doesn't.  The Buddy Walk shows the world that it's ok to be different. Different is something that we don't have to hide. She can be celebrated.

Vacation

Last month we packed up the van and headed south for vacation. We love a road trip. Our kids do pretty well in the car, and we have the whole system so at midnight we left for Siesta Key, FL. We drove straight there. Stopped at breakfast stretch our legs. At lunch time we asked the kids if they would like to stop and eat or just eat in the car and get there.  The voted on getting there. It was our best time yet. 18 hours.

Our first week spent at the beach with my parents and my sister and her family. The kids loved the pool and it was always their first choice but as the week went on they warmed up to the ocean and the sand. Siesta Key is a great beach, white sand and gentle waves. Perfect for my little ones. My favorite moments from vacation were the times when I got to take kids out into the gulf and let them float on a raft in the waves.

Simon and Lucy also got to go with Nana and Papa to Disney World. (I'm still waiting for pictures) Ian stayed back with us. Our time with him was priceless. I don't think I have ever heard him talk so much. (He'll get his turn to go to Disney right before he goes to kindergarten.)

And what would vacation be without delicious food. We had some great treats a SweetBerries (FL's Whitts) and I ate all the shrimp I could get my hands on thanks to Phillippi Creek.

My kids are letting me know I've been on here too long so week 2 of our journey will have to come later.

Kindergarten Wrap Up

It's been almost 5 weeks since school let out and I'm finally getting down to posting.
 Right now Lucy is at the table finishing up her "school work." She wrote sentence in her journal and is drawing a picture to go with it. She wrote "I wet to f r s." (I went to fireworks.) In her picture there are blue, red, and yellow fireworks in the sky. She drew green grass and is working on our lawn chairs.  Last summer when we did this. I wrote the sentence and the pictures were mostly scribbles and any old color was used. She is now a writer.
 She can pick up books off her shelf and read the pictures and for some of them read the words. She has been reading her Reading A to Z books that were sent home. She is a reader.
She has grown so much and a lot of it is due to teachers that pushed her and gave her chances to succeed. We are so grateful for Mrs. Thrift and Mrs. Adrian.
On to first grade we go!!!

                                                                       Mrs. Adrian

                                                               
                                                                     Mrs. Thrift

Dance

I love to dance. You can just ask any of my college roommates and they will have some insight on just how much I love to dance. One of my biggest regrets from growing up it that I never really pushed my parents for dance classes. Lucy seems to share the love of dance also and I'm so thankful that she is able to take dance classes. This is her second year and I've really seen her grow. Her favorite part is the recital. She loves the stage, the special treatment and the applause! Oh how she loves applause!
This year the class was more difficult and we had to practice at home. That mirror in the dance studio can be so distracting!

This is her performance: Hard to watch in and tape at the same time....

We were so thankful that my parents, sister and grandparents were able to be there. Kevin parents really wanted to come but were in Texas. Ian went to a friend's house.

I'm sure there are many more of these to come!!

Lost Tooth

I've got some make up post to complete: a lost tooth, dance recital, last day of school, vacation, and a birthday. We'll start off with the lost tooth (I'm avoiding unpacking!)

I was surprised that it happened I thought it would still be awhile before she lost her first tooth. She didn't get any until after she was one. We noticed it was loose and took its time before it fell out but we were all pretty excited when it finally did.

Since then, she has lost 2 more and her big girl teeth are making their way through. She barley had room in her mouth for her baby teeth I can only imagine what will happen has her big teeth come in. She will make some dentist a very wealthy person.

The third tooth was lost on our first week of vacation. I put it in a baggie and we kinda forgot about the whole tooth fairy thing and since she didn't bring it up I thought we would just let it slide. Last night we got home and as I was laying her down she asked for the tooth. I guess in her mind the tooth fairy could only come here to our house. She always amazes me at what she remembers. So this morning instead of her tooth she found a dollar. She asked if we could go to Taco Bell. "Just Mommy and Lucy. No Simon and Ian." I love my girl!!!

Little Bo Peep

A few weeks ago Lucy's kindergarten class put on a nursery rhyme program. They all wore simple costumes and recited the basic nursery rhymes. Lucy was Little Bo Peep. When we first started practicing the rhyme I was pretty nervous about her being able to learn it but it didn't take long and she was a pro.

Between each group they sang some songs. She is such a performer!

IEP Meeting

Last Wednesday we had Lucy's IEP meeting for next year. We dread those meetings. Most of the people that are around the table are people that I worked with before I decided to stay at home. There are many pros and cons to this arrangement. It's hard to truly fight for what's best for Lucy and at the same time be thinking about the fact that one day I'm going to hopefully be working with all these people again.
Overall it went really well and once again I found myself so thankful to be where we are. We have had a great kindergarten year and I have really appreciated how the school has worked to keep her fully included in the a.m. class. I wish there was some way to keep that going.
Our goal for this next year it to keep the pull outs at a minimum. I had asked if we could do PT before or after school. I asked for a 3/4 classroom to therapy room ratio for OT and maybe a 2/4 for speech. PT and Speech were pretty willing to work with those times.
Lucy's OT goals are writing and cutting goals. In a first grade classroom writing and cutting is happening 95% of the time. I'm not sure why OT can't happen in the classroom. The OT seemed pretty overwhelmed by my request. I suggested maybe there would be more carryover of skills if the OT met with the classroom aide instead of meeting with Lucy. She didn't seem to like that idea either.
We all talked together and decided the OT would happen before or after school and we would try and get PT in on the playground. I'm so glad that we insist that everyone be there at this meeting. The first date they had scheduled one of the therapists couldn't be there so we said that we needed a time when they could all be there. So we rescheduled. It felt great to be heard and even though they didn't all necessarily agree they worked to come up with a solution for all of us.
There were awkward moments and weird comments made but compared to other stories I hear I know I need to be thankful.

Country Club and Zoo Keeper

Recently Simon has noticed the country club that is in our town. We pass it ever day that we drop Lucy off at school. I'm sure it peeks his interest because we can see the pool. By country club standards it's pretty modest, but he's still interested. He has started asking if we can go there. I've been trying to explain that we will probably never go to the country club and have pointed out the community pool which is way cooler. I've tried to explain in many different ways why we will probably never make it to the country club. It's really expensive, it's only for members, it's not for little kids.... None of those seem to help his curiosity. Yesterday he said he was going to start saving his birthday money so that he could go there. I told him he would probably need to save all his b-day money from now until he's 40.
Looks like I'm going to have to just give it to him straight.

We go to the zoo a lot. Both Simon and Ian are really into animals, and on some days Simon wants to be a zoo keeper when he grows up. This morning Simon was watching animal planet and an old episode of the Crocodile Hunter was on. They were showing him at his zoo moving some of the "crocs." While they were watching they saw how he got bit on the arm. It was a pretty minor bit.... for a crocodile. Then Simon announce that he was no longer going to be a zoo keeper. I reminded him he didn't have to work with the crocodiles. He thought the elephants would be safer.

Simon

We wait until the kids turn 5 before they get to choose a sport to try. Simon has chosen soccer and the season has begun. He did so well at his first game. He scored 4 goals, passed the ball, and played his hardest the entire time. I was so proud!!

I also just had to share another Simon story. This is a bike that has been passed through all 3 of our kids. It's awesome! The handle in the back lets you push and steer. Right now we often let Ian ride it through campus because it's easier than trying to get him to stay with us as we walk.

On one of these walks Simon opened the little bucket in the back that often holds, rocks, cars, or sippy cups and noticed this little sign. "Hey Mom, look. It says no bowling pins." Priceless!!!

Kindergarten News

Last week I got a call from Lucy's teacher. She just wanted to let me know that Lucy was going to be switching reading groups. In Lucy's school they level their books with letters and they want kids to be at level C when they enter 1st grade. The teacher told me that they got some new students and that she gave Lucy the level B test and that she did well enough to move to level C. Lucy was ready to move on to level C!!
In moments like these I think back to the day of her birth and all of the fears I had about her disabilities. I wish I could go back and tell myself to not fear and that her abilities will far surpass any box I tried to put her in.



In other news, I got a phone call today from the special education teacher asking if we could switch Lucy's intervention time form morning to afternoon. (1/2 day kindergarten but she stays all day) In Lucy's IEP it states, "Lucy will attend all-day kindergarten. She will be fully included in the morning kindergarten session. Therapies and/or any intervention where it is necessary for her to leave the classroom will occur in the afternoon."
There has been a schedule change and they need to switch things for Lucy. They want to pull her out of class for a 1/2 hour of intervention in the morning. There doesn't seem to be any other option for the teacher. It's our first time in making the choice between learning "skills" and being fully included. There are pros and cons to both. This is a math intervention. Reading is definitely her strength. I really needed time to weigh the options but they needed to know today.
Since the answer had to come today we decided to keep things they way they are. This will change up what she does and who she works with in the afternoon but I hope it shows how we are committed to her being included.

Escape Artist

Right now Lucy is still gated in her room at night. There are two reasons for this. 1- When she wakes up in the middle of the night..lets say 3 am. She begins her day. If she is out of her room she helps herself to breakfast and puts in a movie. 2- She could and would sneak out of the house.

Unfortunately the gate only seems to slow her down. We can no longer keep her book baskets or toy stroller in her room and I've had to put one of those mats that you put under rugs to keep them from slipping under her toy box. She would find a way to slowly push her full toy box across the room and use it or these other items to scale the gate. So we had gotten every thing out and used the mat under that toy box. Success!! Not so fast mom.

This is the gate. You step on the gray pedal to open. Lucy does not weigh enough to open the gate.

So this is what she discovered. If she takes a pillow from her bed and lays it on the pedal it increases the surface area enough that she is able to jump and get it to open.

Seriously!!! Although this is very frustrating because I want her to be safe. It is the part or her personality that I love! I love that she doesn't give up. I love that she can look at what she has and try to solve her own problems. I love her desire to be independent. I'm frustrated and proud all at the same time.

So these pillows can no longer be in her room at night. I'm sure this isn't the end.

JRA Update

Our journey with JRA starter here we've had so much progress. Lucy hit remission and then it came back with a vengeance. Yesterday we went to see Dr. Spencer. I was hoping that we could stay off Enbrel and switch to a different less dangerous drug. No such luck. When we started JRA was in two joints. It is now present in both wrists, fingers, toes, both ankles, and both elbows. Her big toes aren't straight and she couldn't fully straighten her elbows.


It is hitting me so much harder this time around. At the beginning I just had this hope that everything was going to be fine. She was going to grow out of this and it was just going to be one of those things. When it comes to down syndrome she has always been one the right side of the odds. She has had no heart, bowel, or ear problems. I "felt" that JRA would work the same way.


Dr. Spencer put her back on a full dose of Enbrel and Naproxen. He told me I could discuss it with Kevin and talk about if we really wanted to do Enbrel or not but we just don't feel like we have a choice. So far it's the only thing that has worked for her and I just can't risk the permanent joint damage. I hate it's potential side effects and the fact that it really lowers her immune system, but she is pain free.

I started this post last week...Today I'm taking the advise of my husband and focusing on today not what could happen in the future. Today I'm thankful for this medicine.

Wolf Run

Wednesday afternoons are the only day that Ian and I get to just do what ever together. Today I decided to take him to wolf run and enjoy a nature walk together. The weather was so great but a little windy so it was just perfect to be in the trees. We walked, talked, collected sticks, threw them in the water, played shadow tag, and just had a perfect afternoon. Here are some pictures from my phone.

JRA

Lucy has just had her first major JRA flare up. It hasn't been pretty. It seems that it started in her toes and then led to swollen fingers and hands. (You can really tell in this pic how puffy her joints are) She's been on ibuprofen for a little over a week and it's like things are getting worse. On Thursday she came home from school with a rash all over her torso and she was really itchy. I called the doctor but didn't hear back from them. As the night went on things got worse. But by morning the rash didn't grow and they weren't raised anymore so she went back to school. I just figured it had something to do with her sensitive skin.

When I finally heard back from her rheumatologist he didn't think that it was because of the ibuprofen. Their suggestion was just to give her some benadryl. Then she came home from school on Friday and things were much worse. The rash/welts were on her back, stomach, underarms, bottom, and on her knees and elbows. At dinner she said it hurt too much to lift her fork. We thought about taking her to urgent care but decided to check with her pediatrician first.

On a side note, one thing I hate about calling a doctor is that I feel like I explain what's going on to so many different people. I call and say what's happening and whoever answers the phone tells me that a nurse will call back, then a nurse calls me back and I explain it all over again, then they go and talk to the doctor and that night the doctor called me back and I went through the story again. Anyway....

Dr. Rick, (who I think is great. One example: when he called he said, "Hi Mandy. It's Rick.) he thinks it is a reaction to her meds and told me that I could hold off giving them and see what happens. Yesterday I didn't give her meds and it was her best day. So this morning we started off with meds and her hand looks more swollen and she can't stop itching.

I don't know what we are going to do. There aren't a lot of options for meds. I'm hoping we can find something else so she doesn't have to go back on embrel.

She is such a trooper though. Still laughing playing and bringing light.

From Enbrel to Ibuprofen

We started Lucy's journey with JRA years ago and in January we turned an exciting corner. She had been on Enbrel and once we saw that it was working and she didn't have any symptoms the doctor started slowly decreasing her dosage. In December she had been free of symptoms for 6 months and was on a very small dose. Then last month she was taken off of all meds. CELEBRATION!
These last couple of weeks we have noticed that she was starting to limp a little and was complaining about her toes. We even got a call from school because they noticed that she was walking on her heals. The doctor suggested her taking 10ml of ibuprofen 3 times a day. I'm not too happy about it. I feel a little bit better after talking to the nurse today. We don't want her to be restricted or in pain and the side effects of ibuprofen are much less than the side effects of Enbrel.
To be honest JRA wasn't keeping me up at night. 75% of kids who are diagnosed grow out of it. I've just always felt that Lucy was going to be in that 75%. I'm starting to get a little nervous. She experiences most of her pain in her wrists and feet. If this pain continues it could really impact her progressing. I hate that the only thing we can do to help her is to put her on these serious medications. There's no surgery or anythings we can do to make it go away.
JRA is starting to keep me up at night.

Decisions, Decisions

For Valentines Day my grandma and grandpa sent each of the kids $5 in a little card. The cash has been burning a hole in their pockets since the day it arrived. Last week while Simon and Lucy were at school I took Ian to spend his money. He knew exactly what he wanted. We went to the Cars section and I showed him the cars he didn't have. He saw what he wanted and picked it without a second thought.
Today I took Simon shopping with me so he could spend his money. It was a totally different experience. He wanted to start off in the Imaginext section. Not much there for $5.
Then it was on to Thomas. I lined up the trains that he didn't have and he looked but was more interested in asking how much the bigger items were. I think he was hoping I would cave and give him some more money. Then he wanted to go check out the Cars. We walked through the same process there. Pointed out the ones we didn't have but he kept eyeing the bigger items... Then he decided he wanted to go to the Lego sections. Same process. "How much is this?" "It's $20. You can choose from these." "How much is this?" and so on. I kept threatening to choose for him or to make him wait if he couldn't decide. We finally made our way back to the Cars aisle and he decided on a car he didn't have.
I can't be too hard on him though because unfortunately I'm more like Simon than Ian. Sorry to my Mom and all my friends who have ever been shopping with me.

I'm always surprised on how different my kids are. Simon takes on the world with a totally different view than Ian.

Valentine's Day

There just something that I love about Valentine's Day. I think it goes back to my time as a classroom teacher. I loved the fact that everyone gave everyone a valentine, and families worked on boxes together. I love my kids with every fiber of my being and it's another day where I get to show them that I think they are special. And it doesn't come with all the baggage of Christmas: hype, materialism, and all the running around. It's a simple holiday and I love it!

This year I discovered that Walmart has photo vday cards. I got cards for Simon and Lucy for only $7.00. Lucy choose Tinkerbell and Simon choose Cars 2 (big surprise). Each card had a photo and a message. Easy. I know it would have been good to have them practice their name 20 some times but I went for the easy route since I didn't plan ahead as well. I did have them hand write all of their friend's names though. I decided to write each name in yellow marker and have them trace the letters. It worked pretty well.

That evening we had a little Valentines party with some friends. We had heart pizza and decorate your own cookies. It was perfect.

I was surprised on how easy it was to shape the pizza into a heart. I'm going to try some other shapes just for fun.

I can't wait until St. Patrick's Day!

100th Day of School

Last week Lucy's kindergarten class celebrated their 100th day of school. Each child was supposed to make a shirt with 100 of something on it. We went with 100 wiggle eyes. We glued them on with fabric glue. To my surprise all 100 were still there when she got home. I think her favorite part about the shirt was how it sounds when she jumps up and down. I decided to put two pictures up. On with her in her new glasses and one where you could see our handy work.

Happy Birthday Simon!

Of course I have a million excuses on why I haven't been posting. I guess Simon's birthday is a great motivation to get back in it.

Notice how many girls... we need more friends with boys

I can't really believe he is 5. 5 is so big. I'm so proud of Simon. He is such a great kid. He's loving and kind. He is the perfect middle child.

We had a great time celebrating his birthday. One bonus of living on a college campus is that we get to use the facilities during breaks. We were able to have his party in the game room. It's always hard to decide where to have winter birthday parties. We got out the bouncy house, I made some marshmallow shooters out of cups and balloons, and we had a homemade cake and snacks. Now that I'm staying home and we are on a tighter budget I've had to let go of our Pink Cupcake cakes. Thanks to Pintrest I found some great ideas.

All about Simon:

1. My pickiest eater

2. Still loves Thomas and Cars

3. Loves School

4. Hates to clean up and is hard to bribe

5. Loves tortillas with cheese, broccoli, nuggets, and ketchup

6. He's so excited that he is learning to read

7. Finds wonder in the world. (ie... "I can't believe it yesterday I was 4 and today I am 5.")

8. Currently his favorite show is Octonauts.... it changes often

9. Still on the early to bed and early to rise schedule

10. He is just all around awesome!