Sunday, May 25, 2008

Swollen face

Madeline woke up this morning and I noticed her face was slightly swollen. Was it the sun, heat, meds??? I then realized I tried the new spf 85 neutrogena sunblock on her yesterday. Won't use that again. We stayed indoors today and will not put any sunblock on. I want to give her little face a rest.

Saturday, May 24, 2008


Madeline went with me to Trey's baseball game. She really complained about the heat and her face was terrible. She almost could not stand to be out there. This is not usual for her.

Thursday, May 22, 2008

Oh my gosh - she has a ringworn

Madeline came to work with me today. One, because she wanted to. Two, I wanted the nurses to see her neck. And yes, she has a ringworm - UGH!

I called our pedi and got the "cream". Where in the world did she get that one???

Madeline has tryouts tonight for her dance company - competition dance team. She is excited about that!

Wednesday, May 21, 2008

Best day since taking methotraxate

Well, we took her metho last night and today has been the best day since she started her meds. Maybe her little body is getting better with the drugs.

Tuesday, May 20, 2008

Last day of school

Trey graduates from the 6th grade today. It's hard to believe he is going to Jr. High - Lord help everyone. Madeline and Trey will not be at the same school again until Trey is a senior in high school and she is a freshman - kind of sad.

Rick and I somehow got tagged to plan Trey's 6th grade dance after his graduation (which again I had to bite my lip not to cry). Madeline was so excited to help so she could spy on the big kids. They all had a good time and we went home to enjoy the start of summer.

We are so lucky to have such wonderful kids. We are blessed.

Monday, May 19, 2008

Last full day of school

Today is awards day for Madeline. She looks so good today and her mood is wonderful. Rick and I went to her awards ceremony and I had to bite my tongue to not cry. We are so proud of her. She won six awards (I think the most in her class). She is an exceptional, beautiful girl.

Sunday, May 18, 2008

Lafayette weekend

We are so lucky to have two of the most beautiful and talented children. Madeline's brother, Trey (who is 12) is a wonderful baseball player and plays on a travel team that his dad is the coach. With travel ball, we TRAVEL. So off to Lafayette we went for a tournament. My best friend and Madeline's godmother lives in Lafayette so we planned some "girl time" together since Trey's first game was at 1 p.m. in the heat of the day.

We shopped and shopped, but best of all Madeline got to ride Aunt Holly's horse, Dalmatian. She loved it.

Trey and Rick did well in the tournament, but we were home early Sunday afternoon meaning we lost after three games. Oh well...we had fun!

Friday, May 16, 2008

Field Day at School

I was dreading, dreading, dreading field day today. Madeline's dad and I both have busy days at work and could not go to field day, therefore not able to make sure she wears sunblock, hat, sunglasses, etc. Plus, they stay outside for four or more hours.

But rained. YEA! She was a little disappointed, but they got to play games inside. All is good.

Thursday, May 15, 2008

May 15

Madeline has dance on Thursdays. She woke up in a good mood, but her face seemed redder today. I can't keep up with her rash. It gets better, than two days later it's terrible again. I don't get it at all.

She did mention something odd to me. She said she does not like tap class for how it makes her feet feel - the vibrations and the noise. She said it almost makes her feet hurt. We will have to watch this.

Wednesday, May 14, 2008

May 14

We took the methotraxate last night and I anticipated the possessed child today, but she seemed to tolerate the meds better. She was still somewhat tired though.

Tuesday, May 13, 2008

May 12 & 13

Good days, about the same. Face seems a little better, but her chest rash is what has improved the most. Her knees seem to be improving too. Good days.

Sunday, May 11, 2008

May 11

After that long busy day yesterday, Madeline swam and jumped on the trampoline all day. We loaded her with sunblock and waited until later in the day to go out. But she tolerated all well. Her face looks better today.

Saturday, May 10, 2008

Dance Recital Day

Madeline dance in five recitals today - she and I were both wore out! She did beautifully. She does not seem as limber as she once was - don't know if is disease or meds or both. Her dad and I were so proud of her. She got an enormous trophy and her daddy gave her a bouquet of flowers - which Madeline loves. Even her brother was somewhat nice to her today. :)

Friday, May 9, 2008

May 8

Madeline's dance recital is coming up this weekend. She has dress rehearsal on Friday from 4 p.m until 9 p.m. I hope she can handle and stay up with the other girls. She is excited so that should help. She does seem better today and her hand blisters are not as bad. They are not 100 percent gone, but probably 50 percent improved.

Face is still red.

Wednesday, May 7, 2008

May 7

Madeline has a lot of stomach aches lately. I guess it is the medicine. In fact, Rick had to pick her up from school today due to the pain. I think her little body is going to have to start all over with getting use to the drugs. I am so thankful school is almost out. I think we all need the rest from worrying about her getting sick, not putting on sunblock for recess/PE, children picking on her.

Tuesday, May 6, 2008

May 6

Madeline is of course - tired. It was a busy day yesterday though. Her face looks a little better. We will take the cyclo and metho tonight. Back to our old habit of medications.

Monday, May 5, 2008

May 5 - Field Trip Day

Madeline is very excited about her 3rd grade class field trip. Both Rick and I are going with her. One thing this has taught us is that every day is precious and she will not be little forever. We don't want to miss a thing. We went to the Tabasco plant at Avery Island and the Lafayette Zoo - it was a good day.

The doctor wants us to start the cyclosporine again, so we will tonight.

Saturday, May 3, 2008

May 3

I had Madeline rest a lot this weekend. Her rash and blisters are terrible - of course. Something new is going on though - she had a bloody nose. She in her 9 years of life has never had a bloody nose. Odd.

Friday, May 2, 2008

May 2

Madeline is very red, hands still have sores and hurt her badly. I called the pediatrician and he said he would call ped. rheum. on Monday. We still are off meds and she is "MOODY"!

Thursday, May 1, 2008

May 1

Madeline's hands are still sore and red. She is in a better mood. Maybe she is getting well with this "secondary illness". I guess I am a doctor now...LOL.

She is still off her meds.

New Years Eve 2007

New Years Eve 2007
Her rash on New Year Eve 2007. We were treating at this time as poison ivy.

Madeline, January 2008

Madeline, January 2008
Here is a picture of Madeline (2008) at her classroom birthday party. Here you will notice her malar rash and grottron's papules on her hands. Of course at this time we had no idea what was going on.

Madeline, January 2009

Madeline, January 2009
Here is a picture of Madeline at her 9th birthday party. The only redness you see now is the nornal redness from running around at your birthday party. My, what a difference a year makes.