Wednesday, December 31, 2008

2008...You are dead to me!

It' almost over. This dreadful year of ours called 2008. We are only a little over an hour away (CST) and I am so happy for 2009 to be here.

The year started out great with Madeline's birthday to Mardi Gras to then all of us trying to figure out why this rash was not going away on our baby girl. Then we were wondering why Madeline's emotions and temper were so altered. Then March 28 happened - the diagnosis.

My boss and a very good friend and mentor of mine was diagnosed with cancer the same week as Madeline. Sadly, he didn't win his battle and died this summer. I still miss him daily. He was a wondeful man.

Then, the hurricane happened...and hurricanes around here are really getting old. Oh, and the economy...ugh. I'm not even going there.

But, the good news: Madeline's health has improved. She is dancing, playing like a normal 9 year old. Rick is still the most wonderful man I know next to my daddy. And Trey makes us prouder every day with his wonderful accomplishments. We also have a wonderful family of support and a faithful group of friends and co-workers who constantly support and pray for us.

2008 is dead to me. Welcome 2009. And for God's sake please bring good health, happiness and love to my family and friends. And most of all bring remission to my baby girl.

Happy New Year!

Tuesday, December 30, 2008

Results are in...

Results are in and Madeline's liver enzymes (AST and ALT) look within normal range. Yee-haw!

We visited our pediatrician today for Trey had to have warts removed - yuck. Madeline came along with us to observe and appreciate the torture her brother was to endure. This is the pediatrician who sent Madeline to the dermatologist, actually pretty quickly. He was so pleased to see how well she is doing and looking.

I'm counting down 2008 and glad to see it go. I've had many wonderful years, but 2008 can get the hell out of here. 2009 has to be a better year and I am looking forward to it's potential.

Monday, December 29, 2008

Blog Hiatus

I've been on blog hiatus during the Christmas break. But I am back on the wagon effective today. Like most, we've been so busy with family, parties, shopping and more shopping. We did have a wonderful Christmas though. The kids got too much...like always. We ate too much...like always. And we spent too much...like always. And we lack from sleep. Christmas Eve the kids woke up at 2:30 a.m. to see what Santa left. We coached them back to bed immediately. Again, a 5 a.m. visit from them. Finally, a little after 7 a.m. we dragged ourselves out of bed.

Madeline's favorite gift from Santa was a vanity set. She can now sit down in her bedroom and apply make-up for hours. She thinks she looks like Sandy on Grease. Trey got a boat, and yes, it was in the living room Christmas morning.

Everyone has commented on how wonderful Madeline looks. They can't even tell she has any kind of rash or redness. She is acting like the Madeline they always knew. In fact, Christmas Eve at my parents house, all she did was dance in the living room. I used to tell her to stop, but not any longer. That baby can dance her heart out.

We went to the hospital today to have her blood drawn. Great experience this time. I handed picked our phlebotomist. It went easy as pie. We then headed over to the gift shop and I let Madeline get another Webkinz. I guess that adds to the collection of 126 Webkinz...not really, but we do have too many. She picked out a dolphin and named it uniquely Flipper.

We should get the results in a day or two. Of course, I will post the moment I get them.

Monday, December 22, 2008

City of Lights




We went to Natchitoches this past weekend and had a great time. On Sunday, we made baked ornaments and plan to paint them tonight. The Christmas Spirit is picking up around here.

Madeline's feet bothered her some while walking in Natchitoches. This is concerning me more and more. She also mentioned to me a pain in her neck, but I am hoping she just slept wrong. Will keep you posted on that issue.

I have to bring her in for blood work tomorrow. Hopefully her experience will be better next time for last time they blew her vein. I'm going to hand pick our person this time.

I've included a picture of Trey & Madeline at the Lights in Natchitoches. Hopefully you can see the lights and fireworks in the background. It was an incredible show.


Saturday, December 20, 2008

Wishing for winter weather (or atleast 50 degree or below temp.)

We are on the down slope to Christmas and we are having a hard time getting into the spirit. Reason being...it feels like summer outside. Okay, I'm exaggerating. It's actually more like early fall. It's humid, sticky and around 75 degrees outside.

We do plan to force ourselves into the spirit by taking a close-by road trip to Natchitoches, LA. They do a great Christmas light display (Natchitoches is actually known as The City of Lights and the location they filmed Steel Magnolias) and fireworks each Saturday night. This has become a family tradition with the Ducote side of the family. We all go up, adore the lights, eat, shop, etc.

Hopefully, some of the cold air they are experiencing up north will blow its way down here. We need it...

Thursday, December 18, 2008

Red Cheeks and Tingling

I spoke w/ Madeline's teacher last night. She is going to assist w/ the taunting at school. I feel better this morning. Madeline does too.

She is still staying "red-free" today. That was a strange fluke that I am glad went away. An online friend of mine mentioned that his son, who too has JDM, has these red flashes as well. I guess this disease always wants to keep us on our toes.

I've mentioned in past blogs that Madeline has tingling in her feet when she wakes up in the mornings. This is still going on. The odd thing is that it also happens when she gets upset or mad. I've always thought it was a drug side effect, which is listed under cyclosporin. But now I am wondering if it is something else or the JDM. I googled (I know I am not a doctor) her side effects and MS came up. I immediately got off line and will not do any additional research on the subject again.

Our January appointment can not come soon enough.

Tuesday, December 16, 2008

Issues

Madeline looks good today. Her redness is not prominent at all. I just don't get this disease.

Madeline is having a few emotional issues though. She is an honor roll student and these past few weeks, her school work has not been at her normal level. Also, I noticed tonight that Madeline had "trimmed" her eyebrow. Yes, that is correct eyebrow. Not both of them - only one. I asked her why she did that to herself and she began crying. A few girls in her dance company told her to go look at her eyebrows. Of course they were implying they were bushy. She was trying to trim them herself. Breaks my heart.

At school classmates pick at her about how hairy she is. I keep telling her how beautiful she is, but I don't know how much longer she is going to believe me. Then we have the kids who call her a vampire because she has to wear sunblock or not be in the sun for too long. Her spirit keeps being broken.

I wish I knew what I could do to help her with the hair situation. I've thought bleaching (too extreme), trimming, laser..and then I realize doing something may make the situation worse.

Days like this just breaks my heart for her.

Monday, December 15, 2008

It's maybe back???

I think I've been avoiding the blog because I don't want to write what I think (and deep down know) is not a good thing. Madeline's cheeks and ears are looking red. And yes, it's the old red that we first experienced a year ago. I did a full body inspection this morning and at this time she does not have any papules on her hands, elbows, chest or knees. Neither is she complaining of any pain.

I'm not going to get down on this or anticipate a total setback. I'm just going to be thankful she is staying well, dancing like she loves and not in pain.

She had a big day on Saturday. She performed with her dance company at the Christmas Spectacular. They did a tap dance in a Rockette style. It was great. She performed in two shows and was fantastic. We are so proud of her. Her brother Trey (and dad) also had a big day. They had the Superbowl football championship game and won the title. Great job, guys!

I also wanted to include a picture of Trey & Madeline's Louisiana Snowman. Yes, the eyes are acorns...kind of gives you the idea how tiny Mr. Snowman is.


Friday, December 12, 2008

Snow Day in Louisiana

Not quite a picture you see often in Louisiana. What an incredible day we had yesterday. We woke up to sleet and snow and temperatures in the 30s. I've attached a picture that was sent to me by a friend of "Mike the Tiger" at his habitat on the LSU campus. This had to be a once in the lifetime sight in Baton Rouge.

Well the sleet and little bit of snow we received is gone already - I think temp today is in the 60s. The kids loved the surprise. They even got to stay home from school for they had to close due to icy travel. I know you Yankees up north think that is hilarious.

Madeline still has some redness in her cheeks lingering. I'm beginning to worry. If it continues to progress Dr. W will get a call from me next week. We see him the first week of January, but she may need to have her meds increased. I'm not real excited about that potential, but understand the need. She is not complaining of any muscle pain...so that's good news.

Monday, December 8, 2008

It's beginning to look a lot like Christmas




Last night, Madeline made Christmas cookies for the veteran's at the VA Hospital. She is showing off her work in this photo. You'll notice she looks red on her checks. This was right after her breakdown (oh boy, hormones).
She is really getting tired of taking the liquid form of cyclosporine. The taste is becoming harder and harder for her to swallow. We tried a new juice with it last night, but it was terrible. We'll stick with the OJ. Oh- and if you take the liquid form of cyclosporine, Madeline has found that Tropicana and Simply Orange are the best products to help her get the med down.
Madeline has a busy week this week. So do we! She is dancing in a Christmas program call Christmas Spectacular. She is a "rockette" in the production. Their outfits are fabulous. I'll try to get video to put on the site. It should be a great show.

Sunday, December 7, 2008

Hot cheeks...Hot flashes

Madeline is feeling well, but I've noticed she is having more "red check" spells than she has had in a long time. It's not like her rash she had this time last year. It's more that she is hot and her cheeks get red. We've had some cooler weather and finally had the chance to make a fire. It seems she gets a glow from the heat.

Madeline has also been somewhat "hormonal". She has had some crying spells lately. In fact, the bump under her chin that I was so worried about ended up being a really big pimple. Boy, I could not had been happier to see a little puberty on her face. It's beginning...my baby girl is showing signs of growing up. I hate it and love it at the same time.

Wednesday, December 3, 2008

Good week...

It's hard to believe we are in December. Madeline will be 10 in January so we will soon be in party planning mode. Birthdays are BIG at our house. Can't wait to hear what she has in mind to do. Last year we had a poodle theme birthday party with 30+ of her closest friends in attendance.

Madeline's having a good week this week. Her feet still bother her - the tingling, irritating sensation. It doesn't bother her when she is playing or dancing, only when she is standing still doing nothing...I don't get it.

She also has an odd bump coming up under her chin. I don't know what it is, but we will watch it closely. It doesn't hurt her, so that's atleast a good thing.

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.