Wednesday, March 28, 2012

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.

Thursday, March 15, 2012

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.

Friday, March 09, 2012

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.

Wednesday, March 07, 2012

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.

Sunday, March 04, 2012


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.