Saturday, March 28, 2009

One year mark

Madeline was diagnosed exactly one year to the day today. I can still remember that out of body experience when hearing her diagnosis from Dr. B. Looking back, it seemed our life would never be the same again. Not the same for our family, and especially Madeline.

In the beginning, we didn't know what we were dealing with. And most physicians I know didn't know much about the disease either. That implemented fear. Fear of the unknown - the worse of all fears. Our luck did change with finding a doctor not too far away. We trusted his judgement and so far his medication regiment has paid off.

The first six months of her treatment plan were tough. Besides the side effects of the medications, her neurological effects and personal issues at school, we (her mom and dad) were having a very tough time adjusting to this reality. We didn't know where this was going to take us. And the most concerning thought...where is this disease going to take Madeline. Some of the most horrible thoughts crossed my mind...I could not lose this baby, nor was I going to sit around and hope she gets better. We'd find the best, buy the best and do what's best for her. And we did.

Madeline is back to her old self now...a year from diagnosis. She no longer looks ill. She no longer has the grottron's papules or visual rashes. She looks like a normal, healthy and happy 10 year old girl. She dances and shines on stage like she once did. She doesn't tire as badly as she did six or even three months ago. Is she in remission? No. And I know that. But is she in a better place than she was this time last year? Hell YES! And we are too...as a family. The horrible aspects of this disease has done one thing for all of us - made us thankful of today and thankful for each other. I hope I am a better mother to Madeline and a better person to friends and family. And I know Madeline will be a stronger and wiser young lady one day because of her challenge w/ JDM.

I started this blog as therapy for me. Being my personality is somewhat OCD..I needed to manage this disease in some fashion. And this is how I could do it. But hopefully other shocked, scared, newly diagnosed childs' parents can find this blog online and realize it does get better. Your child can get better. Thank God for modern medicine and the wonderful medical professionals who research ongoing to find better answers for their care.

In just one year...we've come a long way. This one year mark reminds us of this. And we are thankful. I am thankful.

Thursday, March 26, 2009

Bumps on eyelid

Madeline has three or four bumps on her eyelid. She's not had these "bumps" in a good while. I've always thought it was JDM related, but maybe is just the normal bumps and bites you get in life. I seem to always jump the gun w/ her and her JDM. They do not itch, but are sore to touch.

She just finished her prednisone but still has four more days of antibiotic. She is feeling well and I am glad she never ran fever. I promise you'd never know she's even been sick.

Thank goodness.

Monday, March 23, 2009

The doctor visit

Madeline had another ear infection and sinus infection. She was prescribed mucinex, an antibiotic and prednisone. She began feeling better Saturday. In fact, she mentioned to me Sunday..."Mom I feel GREAT!" I think it was the prednisone working for her.


I snapped a few pics of her at the ENT's office and at the hospital where she had her blood drawn. As you can see she has grown a lot this year and is beginning to lose her little girl look. In the picture is her favorite phlebotomist, Tammy. We were sad to find out Tammy is leaving the hospital. We will miss her.




Thursday, March 19, 2009

Big Tonsils

We got the call from school today - Madeline is sick. Looking down her throat her "not so little right now" tonsils are touching. It hurts for her to swallow, breath, etc. Plus her ear and head keep throbbing. We are going to see our ENT in the morning. Oddly enough though...no fever.

I'll update you after we see the doc in the a.m. Hopefully all we need are antibiotics.

Tuesday, March 17, 2009

Smile!

It's picture week for dance. That means many nights of taking photos and Moms sitting in a too full room waiting. Madeline has five costumes/dances and of course she wants pictures in all of them. And of course, I do too. It's nice to know we don't have to pile on the make-up this year. Last year the rash was prominent and we had to smear foundation on her to hide the evidence.

No need this year - Yea!

Monday, March 16, 2009

Rainy days

We've had four days of rains this past week/weekend. It was rather nice though for we were able to rest and regenerate for a new week. Plus it washed away a ton of pollen. Madeline is looking and feeling great. So many people around here have the flu right now and we've been very lucky so far to not been that yucky bug home...knock on wood.

Sunday, the boys went to watch the LSU baseball game, so the girls (Madeline, Grammy and I) went shopping for new house items. Grammy is building a new house by us and we are so excited. The kids will be able to get to her house on their own.

Wednesday, March 11, 2009

Big Brothers Big Day

Today is Madeline's big brothers birthday. Trey is "13" today. Hard to believe his daddy and I have a teenager. But he is a great child and a good big brother. Happy Birthday, Trey.

Another thing hard to believe is that we are creeping up to the one year mark of Madeline's diagnosis. In one sense it seems like it's been 10 years, then other times seem just like last month this all started.

Madeline didn't feel well yesterday after school. She has stomach problems after riding the bus home. It was almost in the mid-80s yesterday, so maybe she got a little car sick. Hopefully it is nothing else.

Monday, March 9, 2009

What are those stripes?

Madeline had a friend spend the night Saturday. They were playing beauty shop when I had to interrupt them for her to take her medicine. Of course, we then have to go through the process of explaining to the friend why she is taking the medicine, etc. Normally, Madeline is more than happy to explain her disease. And this time was no different.

Except...then her friend asked me what she had on her back. I, looking puzzled, lifted the back of her shirt. I saw nothing. I asked her again, what do you see. She said, "the stripes". I realized then she was talking about the hair on her back. Madeline busted out crying. We ended the tears with laughter in around two minutes, but it still breaks my heart that she has "all of this" built up in her still.

I asked her last night why she cried so hard about that comment from her friend. Her answer..."Momma, I thought I was done with all that".

I wish baby, I wish.

Thursday, March 5, 2009

My Favorite Memory

Madeline had a ton of homework and tests to study for tonight. Nothing new for a Thursday. But tonight she had to write a report on her "Favorite Memory". I asked her if she had decided on a topic thinking it would be when she won her crown, went to Disney, a favorite birthday, but she surprised me. She decided her favorite memory would be finding out she had her disease.

Okay, I know what you are thinking - the same thing I was...that doesn't make sense. I guess she just needed to write about it, which is fine. I thought I'd type it and save it for one day she may want to look back and have a little chuckle, or better yet a happy memory. But I also thought I share it with you. Now keep in mind she is only in 4th grade. Enjoy!

My Favorite Memory

My favorite memory was when I got my disease. My disease gives me a rash. The rash itches. The rash is usually on my fingers, chest, face, ears, knees, and elbows. My medicine makes my legs hurt. They itch and burn and it hurts to stand. My medicine also makes me tired.

On the way to the doctor, we take a trip. I got to see my doctor in Texas every three months. He makes me laugh because of how tall he is and how he wears a bow tie. On every trip both of my parents come, no matter if they have a lot of work or a meeting the next day. They’re always there for me.

When I found out about my disease, I was sad. My mom was sad, and I saw a tear roll down her eye. I never knew that I, Madeline Elizabeth Ducote, would have a disease. I was shocked. It was a sad, awful, rainy day as we drove home.

In conclusion, it was the saddest day of my life, but the best day because I found out what was wrong with me in and out of my body. Now, I take medicine to help me get better. And I will NOT be in a wheelchair.

Wednesday, March 4, 2009

Optimism

Madeline and I were watching one of our favorite channels the other day - discovery health. She has a real interest in healthcare and I do as well since it's my profession. While watching, she turned to me and asked..."could my kids have my disease?" She surprised me with her question. At first, I wanted to lie to her. But that's not fair or right. So I told her the truth - yes. But I also told her that chance is so tiny she never needs to worry about that happening.

Of course, in optimistic Madeline fashion her comment back to me was..."It's okay if they do have it, because I know what to do and what medicines to take. It's okay if they have it, it's no big deal." And that was the end of the conversation. She was satisfied...and so was I.

Monday, March 2, 2009

Update

I need to bring Madeline to have blood drawn this week. Next month we go back to Texas for her check-up. Dr. W said last time if she was doing as well as she looks and feels, we'd decrease her meds. How exciting...how scary. Well, she is doing great...so looks like the med decrease will occur.

I know I should be so excited. But it horrifies me. I just don't want a setback and too often on other sites and blogs that occurs. I'll just have to remain positive and pray for the best. So far we've been luckier than others...did you just hear me knock on wood? :)

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.