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!

Wolf Run

So many days it still seems like Kevin and I keep trading time with the kids. He comes home from work, I go tutor, I come home, he goes back, he goes to play soccer, I go for a walk. On Sunday I decided to break the pattern and we all went to Wolf Run for a great family hike. The kids played with big sticks, climbed over logs, and looked for crayfish. It was a great way to spend a Sunday. One of the best things about Mount Vernon is our parks.

Ian

Three years!

(I started this yesterday and wanted to finish it but I fell asleep at 9:00. 9:00! This time change has been tiring.)

I can't believe how fast he has changed in just 3 years. We couldn't be happier with Ian. He has given me the gift of working on my parenting skills. I'm hoping the 3s are easier than the 2s.
He is so stinking adorable that he has to be a little rotten for it all to balance out.

Here's a few thing about Ian:

1. He loves to play with toy animals. He got a safari set for his bday and he played with it all day yesterday and that's that first thing he went for this morning.

2. He has a cutest pout you have ever seen!

3. His favorite foods are probably pepperoni and fruit.

4. He loves little babies. I watch a 4 month old 2 days a week and Ian is such a good helper.

5. He wants to be independent. Doesn't want me in the bathroom with him, doesn't want to hold hands in a parking lot, wants to do it himself. Not an easy personality trait when you are 2 but I know that I will be thankful for it later.

Ian- I love you so much and I'm so blessed to be your mommy. Happy Birthday!

Where Did October Go?

I thought I would be so much better at this once I started staying at home. Nana gave the kids Cars 2 last night and I gave in and let them watch it this morning. That usually means I read a bit but I only have one chapter left on the book that I've been reading and it's really good and I just don't want it to end... and I haven't decided what to read next. So here I am. There have been so many bloggable moments that I will want to remember that I have let slip by. Here are a few I've held on to.





Lucy-


She is doing so well in Kindergarten! Her teacher pulled me aside one day while I was there volunteering and told me about how all the kids don't really believe that is 6 because she is so small. Then she shared how one day while at reading group the teacher was introducing color words to the kids and Lucy was the only one who knew them. She said the kids' eyes got huge and they looked shocked. Thank you Miss Joanne!


So far I have only heard good reports except that she sometimes has trouble with transitions: lining up on the playground and leaving play center. She is doing better though. We have conferences next week so I'm sure we will get a better picture of how she is doing.

Simon-

He is doing really well in preschool. This year he is at a new preschool and they do a lot more writing. Its been fun to see him spelling and writing his numbers. He still asks so so many questions. He is curious about how the world works. He also loves to say, "that's odd."
He loves living here on campus and loves the students.

Ian-

We started potty training Ian when he was almost 2 1/2. He has learned the quickest and is dry most mornings, but has had more accidents than Simon and Lucy combined. This event from potty training describes his personality in a nutshell.
So for Simon I had a couple pairs of plain white undies that he would have to wear if he had an accident. It worked like a charm. When Ian kept having accidents I remembered the underwear trick and pulled them back out. I explained to him the process and for the next couple of days what underwear did his choose to wear to start of the day.... the white ones.
He has had to stay on the motivators (gummy worms) much longer than the other two. He knows exactly what he is doing.

Buddy Walk 2011

We couldn't have asked for a better day for the Buddy Walk this year. This was our wonderful team. It means so much to us that our family and friends, old and new, come out and surround us. Every year as I look out at the sea of tail gaters and I'm always touched by the people who gather to celebrate people with down syndrome. I still tear up as we round the corners of the walk and hear the high school cheerleaders cheering for Lucy.

Thank you to all that came out and to those who supported us with a donation!

Dr. Spencer

Today Lucy had an apt. with her rheumatologist and minus the fact that we were there for 2 hours because we she was seen twice, once by a resident for practice, I'm assuming, and then again by Dr. Spencer. It was another encouraging visit. He asked if we wanted to totally take her off her meds. I was a little nervous because he has said so many times that we want to make sure she is clear because once we take her off it could come back and come back stronger. He is pretty sure it's gone but she still pulls back a little when he pushes her left wrist. So we decided to cut the meds in half and give it 3 more months. It will be so good for her to finally get off these meds.
He is such a good doctor. He listens and I feel like we work together to do what's best for Lucy. I know that it's a busy office but I always feel like he gives us the time we need.

Simon's First Day

Today is Simon's first day of preschool. He is at a new preschool this year and it's right outside our front door. It will be nice to walk instead of driving across town. Simon was really excited. The only one that cried was Ian. He wanted to stay and see the gold fish. Hopefully I can prove myself as fun as gold fish.

I took Simon to get his haircut before school and he sat and told the the lady that was cutting his hair about how he was going to a new preschool and about how he will miss all his friends and his most favorite teacher, Miss Laura.

I will miss them too!