Thursday, May 28, 2009

Mr. Sun

The first week out of school is going great. Between the kids spending the night away, sleeping in late and eating everything in the house, all is normal. Madeline is feeling well and we go to Texas Tuesday. I have to bring her tomorrow to have her blood drawn. I guess we've been so busy I hadn't noticed we were past the due date again.

I've made a big step this summer. I am relaxing somewhat with Madeline being out in the sun during peak hours. Last year, I was somewhat extreme about this. But to my defense, she was too. It hurt her skin and made her feel terrible to be outside. This no longer is true. She can handle the heat, her skin does not hurt and no rash has returned. We will wear sunblock and hats though. We all need to do that.

The best part of this...it makes her feel normal again. For me the best part...it makes me realize she is doing great.

Tuesday, May 26, 2009

Busy weekend

We had a very busy Memorial Day weekend. Madeline had her dance recital which means she danced at the 11 a.m., 1 p.m., 3 p.m., 5 p.m. and 7 p.m. shows. She is in the opening number and also performed in jazz, ballet, tap and pointe. She did great.

Trey was in a travel ball tournament and then we had friends over on Monday. We swam, ate and finished the day seeing Night of the Museum - Battle at the Smithsonian. It was good, not great. The kids loved it though, so that's all that matters.

We go next week to Texas for Madeline's check-up. I assume he will still decrease her meds. She is ready for this, I know. I just don't know if I am.

Friday, May 22, 2009

School is over!

Pain nourishes courage. You can't be brave if you've only had wonderful things happen to you.
- Mary Tyler Moore


I received this quote today and thought how fitting. I had just discussed w/ my husband that still today I have meltdowns regarding Madeline's disease. I don't understand why I still do this at times. Now, don't get me wrong. I've improved tremendously especially since Madeline is doing so well. But it still pains me she has to experience this disease. And I often wonder what her future looks like.

Enough of that...SCHOOL IS OVER!!! Madeline received many awards at her award's ceremony. Her brother did as well. We were so proud and lucky to have great kids. Madeline has her dance recital this weekend. I can't wait to watch her shine on stage. She loves it and we do too.

Monday, May 18, 2009

Pre-Teen

Madeline had her positive behavior party at school today. Her dad and I went to volunteer at lunch. It was a perfect day - 70 degrees and not a cloud in the sky. This cooler weather is very welcomed since we were already hitting mid-90s last week.


I was so proud of Madeline. She had her sun block already on and then reapplied mid way through the party. While I was driving back to work I couldn't help but reminisce on how far we've come. This time last year she was experiencing stomach pains, nausea from the meds, temper tantrums, the itchy rashes, tiredness and on top of everything being picked on by classmates.

It's hard to believe school will be out in three days and I will have a 5th grader. One thought that came to me while driving was Madeline mentioning that all her JDM will be gone by the time she is 12. Maybe this little girl knows what she's talking about. I am so hopeful.


We had a great 4th grade year. She is becoming such a little lady - or better yet a pre-teen as she announced yesterday. She never lets her JDM get in her way. And I am so proud of her for that.


Oh - and she made the competition team for dance again. Tryouts were Saturday and she did great. Go Madeline!!!

Thursday, May 14, 2009

Update

I had to go out of town for business this week. The good news is when I came home I was happy to see Madeline is feeling much better. She is still taking her medications, but she is back to the high energy, sassy, sweet girl I am accustomed to. We go back to see the ENT tomorrow morning. Hopefully she will have great improvement.

Madeline has field day tomorrow, which always makes me nervous. It looks like it's going to be a hot and sunny day too. I just have to trust she is going to do what she knows she has to do - wear sunblock. Hopefully, she'll wear a hat too.

Monday, May 11, 2009

Horse pill

Madeline went to the ENT Friday. She has again in the same ear a terrible ear infection. In fact, the doc asked her how long her ear had been bothering her. He didn't seem to believe it had only begun a day or two prior. But it had. Madeline always has had a high pain tolerance. She is now on prednisone and sulfamethoxazole. He wanted to try something different since this is the same ear having the same problems. We go back to see him again Friday to see if the regiment is working.

So, all good right? Wrong! We picked up her prescription Friday after work (also after doctor office hours) and her antibiotic was a horse pill. She cried, panicked and then eventually vomited again her entire medication dose. Saturday I crushed the medication and she drank it w/ OJ like she does her cyclosporine. Plus, I spaced out her medications since she had six different kinds to take on this particular day, including her methotraxate. It has been horrible. But, finally on Sunday she did not vomit. She does still panic when she knows she has to take more meds. Poor baby.

She still sounds congested, but seems to feel better. She has really had a tough time getting over this illness. It has not been fun at all.

Wednesday, May 6, 2009

Flu, Ear Ache, Bloody Nose

Day 5 of the flu was very good. I stayed home with Madeline and she never ran fever. We actually had a good day together. Therefore, Madeline went back to school today. She is still coughing and somewhat congested, but otherwise fine. Tonight is her last dose of the Tamiflu.

Until tonight.... Madeline had a good day at school, except she said she was tired. But tonight, around 9 p.m., she began crying terribly. Her ear is killing her and she has a bloody nose. My poor baby - she can't get over this. I will now call our ENT in the morning. Honestly, wanted to call him tonight, but what are they going to do. Nothing. I don't know if this is secondary or just the left overs from the flu effects.

I know one thing...I just want her to get well.

Monday, May 4, 2009

And the flu saga continues...

Day 3 of the flu was a little better. Madeline slept often and her fever remained around 100 degrees. Today, which is day 4, her temp has not been over 99.6 degrees. So, good progress. Her daddy stayed home with her today and I plan to stay with her tomorrow. Hopefully, her temperature will stay normal all day tomorrow and she will be ready to go back to school on Wednesday. She'll also have to miss pointe tonight.

Rick called Dr. W today for we had an appointment w/ him tomorrow. He told us to stay home. We will make up the visit in June. Shocker...guess they don't want our cooties. :)

Sunday, May 3, 2009

Day 2 with the Flu

Okay, day two with the flu stunk. Madeline is still running fever, but it's hanging around 101 degrees now. Her mood is good to bad depending if and when the ibuprofen is running off. The worst part was it was Saturday night so that meant taking her cyclosporine as well as her methotraxate. And now we had to add the temiflu to the mix. She took her temiflu, then the cyclosporine, then her methotraxate. Just as she finished her last sip...I knew what was about to happen by the look of her face. The poor thing projectile vomited everything she'd just drank right into the kitchen sink. Thank God her daddy was there to help for I thought I was about to be right with her. After just a few moments she said she felt so much better. Poor baby.

But, this also brings the next question (which I will ask Tuesday when we go to Texas for her appointment). What do you do in that situation? Do you re-give her the meds or just don't worry about it? I know everything she just took ended up in my kitchen sink (which, by the way, was bleached thoroughly). We didn't give it to her though. She and her stomach could not had handled it.

Saturday, May 2, 2009

Madeline has the flu...but not the piggy kind!

Madeline has the flu...not the piggy kind everyone is talking about these days - thank goodness. She came home from playing yesterday and her fever was 102.8. She went right to sleep. I went right to calling the pediatrician who told us to go to the hospital to have labs drawn...which we immediately did.

We went home to wait for the results. The Emergency Department is not place for a little girl with a suppressed immune system to hang out with a ton of very ill people. Her white count was not evelated. He did call her in a prescription of Temiflu. We started her first dose this morning. Her fever is now down to 101.

I can not express to you the fear her daddy and I had. We've not had to face Madeline getting sick...you know really sick. And she's never had a fever this high before. Plus, this whole swine flu thing scares the dickens out of you, too.

Please say a little prayer for our baby girl to get well. I'll give an update on her tomorrow.

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.