Madeline's Blog Archive

Thursday, December 31, 2009

Farewell 2009

Click here to view these pictures larger


Here we are again. Another year has flown by and we are entering the year 2010. Seriously, 2010! As a child, I always thought we'd be flying around like the Jetson's. Remember that cartoon?

I've attached a variety of pictures from the entire month of December. December has been a terribly busy month for us, hence the lack of submissions on the blog. I believe the lack of posts also means a lack of anything worthwhile to report regarding her JDM . What a great thing! We finished off the year by having blood drawn. We will get the results in the new year, but I don't anticipate anything shocking. How wonderful!

For many around our country, 2009 has not been a good year. Thank God, 2009 has not been a terrible year personally for our family. Madeline continues to do well health wise. The only true scare we had was her illness - the swine flu. We were able to eliminate one of her medications this year and have yet to experience any issues from this change. She still continues her methotraxate though. She is still very strong and continues to dance, have fun with friends, make great grades and we are even experiencing some teenage tendencies...like attitude. I feel payback coming!!!

Rick and Trey and also great. Trey's been busy with baseball, hunting, etc. He will be 14 soon...hard to believe.

Our New Year's Eve is being celebrated at home - like we do every year. Each of the kids have friends over and they are playing hide and seek outside in the dark. We've already had a massive fireworks show, which I dread to see all the mess in the morning, and eaten way too much chili. I'd not want to bring in a new year any differently than being at home with my family.

Here's to 2010. Wishing you all happiness, blessings and health!!! And here's wishing the same for our family and remission for Madeline in 2010.

Happy New Year!!!

Monday, December 14, 2009

Over the month mark

It's now been over a month that Madeline's cyclosporine has been eliminated. So far - all is good. Yesterday she mentioned to me her hands were very dry and her wrist was itching. I inspected thoroughly, but didn't see any evidence of JDM...just dry skin. Guess that panic feel will never leave me. Her methotraxate does still continue though. Still 10 mg once a week.

Madeline and I attended her Dance Company Christmas Party last night. We ate, had an ornament game, fellowship and then the dance soloist who plan to compete in January performed for the group. Madeline is one of those soloist. She did beautifully. I did all I could not to cry. I'm going to try to upload it to the site. Hopefully I can so you can see how wonderful she did.

How blessed we are she can still dance. What a blessing!

Monday, December 7, 2009

Winter Wonderland in Louisiana...well kinda!










































We had so much fun in the snow. We played in it until 9 p.m. Friday and then work up Saturday before the sun was up. We wanted to make sure we enjoyed it before it all melted. It lasted longer than I thought it would. By noon...it was gone.

We had a great time. What a wonderful early Christmas treat. Enjoy the pics!







Friday, December 4, 2009

It's snowing!!!! REALLY!

OMG!!! It's snowing...really, really, really. I told my husband today between the Saints being 11-0 and it snowing in Louisiana.......I think hell may have actually frozen over!

The kids have been outside all evening playing in the foreign object we never see around here. I just hope it lasts long enough so the kids can play in the snow in the morning.

One of the funniest things was I had my husband carrying my plants under our porch. Our hibiscus are still actually blooming and last weekend it was 75 degrees. And now, it's snowing. Nuts!!! But AWESOME!!!!

Thursday, November 26, 2009

Happy Thanksgiving!

This Thanksgiving I am so grateful for…

being able to share our family’s story. I hope our story shared online with others is a source for you to grow hope, optimism and peace knowing there can be good outcomes with this disease.

I am so grateful for…

my wonderful and supportive husband who was especially strong at the beginning of our daughter’s diagnosis. He held me up for those first three to four months when I was living in a fog of depression and doubt.

I am so grateful for…

the talented and skillful physicians who diagnosed Madeline so quickly and developed a treatment plan that worked beautifully.

I am so grateful for…

being a mother to two incredible, beautiful, happy children who are growing up way too fast.

I am so grateful for…

my parents and in-laws who love us unconditionally, as well as our sisters, brothers and extended family and friends.

I am so grateful for…

our wonderful news that Madeline is on the course to remission.

I am so grateful for…

having the capabilities to provide for her care and in our small way assist with her healing process.

I am so grateful for…

God believing in Rick and I as parents - especially for the fact that he chose us as parents for a child who is ill.

I am so grateful for…

now seeing life differently.

I am so grateful!

Hope you have a wonderful and blessed Thanksgiving!

Gobble! Gobble!

Tuesday, November 24, 2009

Oops...we've already messed up!


One - forgot to post pictures of Madeline and her brother from Halloween. Two - we already got out of the habit and forgot to give Madeline her methotraxate Saturday night. I woke up in a panic Sunday morning. I couldn't believe we forgot. I guess not having to take medicine every night, you get lazy. I guess being able to think this way (forgetful) is a good thing....but only as long as we remember to take the medicine quickly.

Thanksgiving is just in a few days. But first, we will celebrate the birthday of my sweet husband and the wonder daddy to my two babies. Happy Birthday, Rick! I love you...I love us...I love our wonderful family!

Friday, November 13, 2009

Still celebrating...


We are still celebrating and adjusting to Madeline not taking her nightly medication, the cyclosporin. It's actually very odd. I keep thinking I'm forgetting something and then realize, our routine of her taking her meds is no longer happening. And that's a great thing.
I wanted to share some other doc day pics of us celebrating while in Texas. One is she and her daddy waiting to see Dr. W and the other being a celebration dessert at Olive Garden after the appointment.

Madeline is doing fine except she has a nasty cough and congestion. I believe she just has a cold, but will continue to watch her. Another thing she has just began to complain about is the top of her foot. She has a knot on it, but does not recall hitting it. We'll have to keep watching...and not thinking it's other things caused by JDM.

Breathe...relax. :)

Friday, November 6, 2009

And the results are....drum roll please!!!!



Does her face say it all??? Madeline's appointment went great. The doctor took her completely off her cyclosporine. This made her so excited. She hates taking that medication which is mixed w/ orange juice. It tastes terrible, so she says and so I can smell.

He was so happy with her results, strength, activity level, etc. We go back in three months and if all is still good, he will begin to decrease her methotraxate.

Pinch me...is this for real??? We are on the road...that beautiful road of remission. Thank you God!

Monday, November 2, 2009

A Texas We Will Go...

We leave at 7 a.m. to head to Madeline's doctor appointment in Texas. It's amazing how easy these appointments have become. I can remember the nausea that would set in and anticipation that would worry me the entire drive to his office. Now, it's not too bad. Especially since Madeline is doing so well.

Madeline's doctor is a pediatric rheumatologist at Texas Children's Hospital. I've always referred to him on the blog as Dr. W. At our last visit, he decreased her cyclosporine to 1 cc vs. her former 2.5 cc. This decrease began in September. As of today's date, we see no change in Madeline. She is doing really well. She still takes her methotraxate, 10 mg, each Saturday.

It will be interesting to see what he thinks. I don't believe he will decrease her meds any more tomorrow and we are okay with that. Slow and steady...slow and steady.

Wish us luck and say a little prayer for Madeline. I'll give an update when we get back.

Thursday, October 29, 2009

Punk Rock Girl

We are ready for Halloween. Madeline (after changing her mind around 10 times) finally decided she is going to be a punk rock girl. Wasn't real sure what she was thinking, but once we bought everything and she tried her outfit on I realized she's not a punk rock girl but an 80s girl. She is wearing almost everything I did in 7th and 8th grade...kind of an Madonna look when she first started out with Lucky Star. Too funny.

We are planning our annual Halloween get together so the house will be packed. Speaking of house packed...we have new live-ins - my in-laws. We moved them in this past week while their new home is being built. Plan is they will be out before Christmas. Thanks goodness I love these people.

Thursday, October 22, 2009

Journal of Pediatrics on JDM

I'm always interested on any study conducted on JDM. Found this one which would include Madeline in the mix since she never took corticosteroids. Interesting...

Favorable Outcome of Juvenile Dermatomyositis Treated without Systemic Corticosteroids
Deborah M. Levy, MD, MSa, C. April Bingham, MDb, Philip J. Kahn, MDc, Andrew H. Eichenfield, MDa, Lisa F. Imundo, MDa
Received 2 March 2009; received in revised form 6 August 2009; accepted 2 September 2009. published online 21 October 2009. Corrected Proof

Objective
To describe the course of patients with juvenile dermatomyositis (JDM) treated effectively without systemic corticosteroids.
Study design
A retrospective study of 38 patients with JDM treated at a tertiary care children's hospital identified 8 patients who had never received corticosteroids. Disease presentation and course, pharmacologic, and ancillary treatments were recorded.
Results
Patients in the no corticosteroid group were followed for a median of 2.8 years (range, 2.1 to 9.5 years). Treatment was primarily with intravenous immunoglobulin (IVIG) (75%) and methotrexate (50%), with favorable response in all. No serious treatment complications were observed; headaches were reported by 3 patients receiving IVIG. Two patients had a myositis flare after discontinuing all medications for more than 1 year; complete resolution of symptoms was observed after either 1 or 2 further doses of IVIG. Two patients had calcinosis (at 1 and 9 years of disease); however, no patient had joint contractures, muscle atrophy, lipodystrophy, or functional limitations.
Conclusions
Systemic corticosteroids can be avoided in a select group of patients with JDM. Alternative agents such as methotrexate and IVIG may be prescribed to effectively treat JDM and prevent complications.
ALT, Alanine aminotransferase, ANA, Antinuclear antibodies, AST, Aspartate aminotransferase, BMI, Body mass index, CMAS, Childhood Myositis Assessment Scale, CPK, Creatine phosphokinase, CUMC, Columbia University Medical Center, DsDNA, Double-stranded DNA, ENA, Extractable nuclear antigens, IVIG, Intravenous immunoglobulin, JDM, Juvenile dermatomyositis, LDH, Lactose dehydrogenase, MMT, Manual muscle testing, MTX, Methotrexate
a Department of Pediatrics, Morgan Stanley Children's Hospital of New York-Presbyterian, Columbia University Medical Center, New York, NY
b Department of Pediatrics, Milton S. Hershey Medical Center, Penn State College of Medicine, College Station, PA
c Department of Pediatrics, New York University School of Medicine, New York, NY

Sunday, October 18, 2009

Fall has finally arrived

After a week of 90 degree temperature, along with humidity of 100 percent, the cool air has finally arrived to Louisiana. It's a beautiful weekend with temps in the 60s-70s. Madeline is enjoying the day by playing outside and riding her bike with friends. Love it!

Madeline's decrease of meds is still on course. I've not seen one effect due to the decrease. I don't want to jinx us, but I really think she has beat this stuff. It has been a year and seven months...I think that's long enough. Oh - I hope we're this lucky.

Wednesday, October 14, 2009

2009 5th grade school picture



This is the official photo of Madeline's 5th grade school year. My, my...she looks way older than 10 years old. But, she is beautiful and looks, feels wonderful. God is good!

Friday, October 9, 2009

Geaux Tigers!!!

We are heading out today for the LSU/Florida game. We are so excited! Everyone tells us it's nuts in Baton Rouge already. We plan on dressing the kids up and bringing them to ESPN Gameday. Hopefully, we'll get on TV...watch for us!!!

Geaux Tigers!!!

Monday, October 5, 2009

Madeline's weekend

We had a nice weekend. Our son Trey went out of town for a birthday party so we had Madeline all to ourselves. We let her select what to do so off we went to Copeland's and then the Halloween store. We had fun except for the part that the Halloween costumes all looked like stripper attire. We decided we could find a better costume somewhere else and pushed her out of the door quickly.

Madeline went to a cheer camp at a local school Saturday morning and had a great time. She was as tall and talented as most of the cheerleaders there. But I guess I am biased. :) After, we watched a very incredible, yet nerve wrecking LSU/Georgia football game. Our Tigers WON!!!!!!

Great, calm weekend. It rained, was relaxing and enjoyable. We needed this simple time. Oh- her Texas doc appointment can't happen until early November. No big deal though for all is good.

Thursday, October 1, 2009

All is good

Madeline continues to do well. I was so concerned that she would return to school and be out again with another illness. Luckily, this has not been an issue.

We are calling today to schedule her check-up w/ Dr. W in Texas. This is the longest (3 months) we've gone without going for a check-up. This was because he wanted to give her a chance with the decrease of cyclosporine. He wanted to see if we experience any changes or flares w/ her JDM due to the decrease. So far - we see nothing.

I know it's way too soon to get too excited, but at least it's good news for now. I believe he is going to be very pleased with her results. And of course, I then wonder when we will be able to decrease other drugs and be on our way to the big R...remission!

Friday, September 25, 2009

Update on Princess Madeline

I am terrible. I've dropped the ball and not updated Madeline's blog. So many of you have sent notes worrying about her. Thanks for caring.

She is better. It took 10 days (9 days straight w/ fever) to get over the flu. Her rash is healing. The pits have healed nicely, just hope there are no scars. I do not believe the rash is JDM related, but due to the illness. Now, don't get me wrong. If my healthy son had the same illness, I do not believe he would had reacted like she did with the longevity or rash. But who knows. I'm just glad she is back at school...which she missed way too much of...back at dance....which she missed over two weeks worth...and back to being a happy, well little 10 year old.

This illness scared Rick and I. I've never had either of my children sick for this long. Even my son who had meningitis got over the illness faster than this.

But all is now good in Madeline's world today. She's well, dancing and playing w/ friends. And, she got her first report card for the school year and almost made straight A's. She missed it by one point! But we are still SO proud of her. What an amazing little princess.

Wednesday, September 16, 2009

Day 6 and we still have fever!

I am almost in panic mode. Madeline has now had fever for 6 straight days. I've decided that if she still has fever tomorrow (after also taking a z-pack) I'm calling our local pediatric infectious disease physician for an appointment. Our pediatrician is nice, but not as aggressive as I'd prefer. Plus, the doctors' offices are packed with kids with flu, mono, strep and that's that last place I want to bring her right now.

I'm trying to not worry, but I can not help it. She has never had a constant fever, that's very high at times, for this long. Neither of my kids have ever done this. She has now missed a week of school and I can't even imagine how she will get caught up. But then again, who cares. I just want her well.

She seems more congested today. Her nose, head is very stuffy. When she does not have fever, she's in good spirits. She freezes constantly though - with or without fever. And her arm and chest rash still looks bad.

I guess I am rambling...but I'm concerned.

Monday, September 14, 2009

Look at her arm!




Madeline is still very sick. She has a high fever and can't seem to get over this quick enough for Momma. One concern I have is the rash our doctor says is poison ivy. I'm not convinced. Here is a picture. It looks terrible.




Saturday, September 12, 2009

The nose swab - yuck!


Here is a pic of Madeline having her nose swabbed to identify the flu strain. She said, "it tickled very much but did not hurt at all." She is a little better today. Her fever is not as high. We've been inside all day and it's getting a little old.

Friday, September 11, 2009

The Flu is HERE!!!

We tried to protect Madeline as much as we could, but it didn't work - she has the flu. We went to the doctor today and they swabbed her. We still have to wait on the confirmation of the swine flu, which to me really doesn't matter because by the time we get the results hopefully she will be well. My understanding is they send the swab to Atlanta and it takes 3 -5 days for results.

She is experiencing the normal flu symptoms...sleeping a lot, fever, shakes, burning up, high fever, aches and headaches.

We had a weekend getaway planned to Baton Rouge. It's the first home game for LSU and we go to every game. Plus, we planned to do some girl shopping while there. The Tigers will have to win without us. But, we will be cheering for them from home.

GEAUX Tigers!!!

Thursday, September 10, 2009

Not feeling well

Madeline came home from school today not feeling well. She called me at work crying and weepy. She didn't go to dance tonight. She is not running fever, but her throat looks terrible. She is very tired and just not herself. We'll have to just wait and see.how the night goes.

I did notice a rash on her arm. My first reaction was a little panic, but the more and more I look at it I believe it's poison ivy...I think. She went camping with a friend last weekend. So, maybe that's what she has. She has never been allergic to it, so if it is poison ivy this is a new allergy for her. I will keep a close eye on it.

We are on day 10 of her decrease of meds. This couldn't be the JDM - could it?

Tuesday, September 8, 2009

Blood work results

Great news on blood work...see for yourself!

SGOT (AST) - 22 (0-31, normal)
SGPT (ALT) - 10 (0-31, normal)
CPK - 125 (24-170, normal)
LDH - 211 (120-300, normal)
Aldolase - 4.6 (3.3-9.7, normal)

Tuesday, September 1, 2009

First day of decrease of cyclosporine

Today was our first day of the "decrease". We decreased her cyclosporine, by doc orders, to 1 cc per day. When I made her medication, which she drinks w/ OJ, I didn't think about not putting as much OJ in the glass. She made an awful face. I asked her, "what is it"? She said, "I can taste how sour the orange juice is...it's terrible".

I've had a very busy week at the hospital and not had the chance to pick up her bloodwork results. Still have the fear of the flu in our community. Our local schools and hospitals have been hit hard. Today, while walking through our emergency department, there was a line out the door for people waiting to be triaged...all obvious flu-like symptom patients.

Thursday, August 27, 2009

Busy Day

We brought Madeline today after school to have her blood drawn. Right after, we brought her to dance. She did great. She is so brave. Now we are spending the rest of the evening studying. Summer sure was easier.

I will go to medical records tomorrow to get her results. It will be interesting to see what her blood work does once her cyclosporine is decreased. Four days and counting!!!

Tuesday, August 25, 2009

Bloody nose

Madeline had a bloody nose tonight. She told me once I saw the blood that she'd had a few nose bleeds today at school. It's been a long time since she had a nose bleed. She had them mostly when she first started the cyclosporine. I guess it could be sinus problems, but she's not having an symptoms.

I did a media story today on swine flu. The hospital has a lot of flu coming in the ED. Not a good sign since it is only August! On the news tonight, our local private schools have around 120 students out due to the flu. They have a total of 2100 in their schools. Stress!

Only 7 more days of the full dose cyclosporine. The countdown begins.

Saturday, August 22, 2009

Regurgitate

I hate nights like this. Madeline had her Saturday night "big medicine" night. She took all her pills and cyclosporine...and then vomited everything right back up. No matter how often this may happen, I never get use to it. I always worry if we should retake everything, wait until the morning or just not worry about it. We decided to have her retake her meds in the morning.

Poor baby...and she had a friend spending the night. Her little friend's eyes were wide, but she handled it fine. She was actually making light of it for her. Sweet friend.

Wednesday, August 19, 2009

Going strong!

Madeline needs to have her blood work done again. With school in session, kids are already beginning to get sick. I have one friend whose daughter has confirmed swine flu and another today who said her daughter has the flu, but doc did not test for swine. Horrifies me to think what fall will bring!!!

Madeline is still looking, feeling good. It's been a little over a month now, but I need to give her a good check over of her hands, ankles, chest, etc. I've not heard her mention any changes with her skin...which is good. But, I like to confirm that with my own eyes. I guess it makes me feel better. :)

Sunday, August 16, 2009

Sample letter to teachers, school nurse, administration

What a week!!! Homework, dance, football practice, after hour work events and projects. Yes, projects...the first week of school and Madeline was assigned two. Ugh!

I never had time to post the letter I give to teachers at school. But I wanted to in case any parents would like to use any or all of it. Besides speaking to each teacher, I also provide them with this letter. I want to make sure they UNDERSTAND!!!

I found this sample letter off the Cure JM site. I made it my own, but it had many areas I would not had thought to include, but were important.

Here it goes...

August 7, 2009
Dear Fifth Grade Teachers:
I wanted this letter to serve as a follow-up to our conversation regarding our daughter, Madeline Ducote. Madeline is currently battling a very rare disease called Juvenile Dermatomyositis, or as she calls it JDM. She was diagnosed on March 28, 2008 at 9 years of age.
JDM is a rare autoimmune disease which attacks children of all ages, causing them to suffer from weakened and painful muscles, skin rash that worsens with sun exposure, severe fatigue, digestive problems and a variety of other debilitating symptoms. This disease is very rare as it only affects between 3,000 to 5,000 children currently in the United States. As to date, we have only found one other person in the state of Louisiana battling this illness. Some children may experience a remission, while others will battle JDM their entire life. Madeline is now 16 months into treatment, and she has yet to reach remission.
In Madeline’s case, she is doing much better than she was a year ago. Madeline’s treatment currently involves taking Cyclosporine A (a medication normally used for transplant patients) and methotraxate ( a chemotherapy drug). Combined with her medicine, it is absolutely necessary to keep her protected from the sun. JDM is peculiar in that although Madeline may look good now, having her in the sun unprotected can cause big problems. This is due to her disease, as well as the side effects of her medication.
My husband, Rick, and I request the following guidelines be followed concerning Madeline’s activities while attending class at J.I. Barron Elementary:
  1. Madeline is very sensitive to the sun as a result of her dermatomyositis/medications. As a general rule, it is important that she avoid unprotected sun exposure during the times of the day when the sun is at its peak (10:00AM – 4:00 PM). We are aware that Madeline can tolerate minimum sun exposure in the late fall and winter months with proper protection. It is imperative that Madeline wears sunscreen at all times. If I feel Madeline should not be outside due to a flare or extremely high Ultra-Violet Index (UV Index) I will advise you and the school via a note whether Madeline is or is not permitted to participate in outdoor recess. In the past, she would have a friend stay indoors with her when she could not go out for recess. This really helped Madeline a lot, mentally and emotionally. She’d also go to the art class with Ms. Noel and help her. She enjoys this very much too.
  2. Madeline will need to put on sunscreen before recess, and any time before she goes outdoors. Please allow her to go to the bathroom or hallway so she may apply the sun block in privacy. It is necessary to have her sunscreen applied to her face and all exposed areas. Madeline should re-apply sunscreen to her hands prior to dismissal. I will supply the sunscreen for her to keep in her backpack or your location of choice.
  3. Madeline may participate in gym class; in fact exercise is very important for maintaining her muscle strength. My understanding is that from time to time gym class is conducted outdoors. In general, Madeline is permitted to participate in outdoor gym class, but must apply sunscreen prior to going outdoors. I will notify you (see #1) on those days when Madeline is NOT permitted outside for gym class.
  4. Madeline is taking methotrexate, which is an immunosuppressant medication that puts her at increased risk of infection. It is important that I am notified if there are serious infections in the school (i.e. staph, mononucleosis, flu, etc.). Also, she will need to wash her hands and desk more often and will carry hand sanitizer with her at all times. I will also purchase hand sanitizer for your classrooms if that will help you. I can not stress enough the importance of this. What can be a simple cold for you or me, can become serious for Madeline.
  5. Madeline must visit various physicians throughout the school year which are located in Texas at Texas Children’s Hospital. She may tend to be ill more often. These events will require that she is absent, late or dismissed early. I will keep in touch with you when these events occur in order to coordinate her schoolwork.
Juvenile Dermatomyositis can be a physical illness but does not impact Madeline’s ability to think, feel and participate. You will find that Madeline is like any other child her age in all other respects. She is competitive, somewhat of an over-achiever, a dreamer and a very well-rounded little girl. I am very interested in her mental health as it relates to her disease and ask that you inform me should you detect any concerns in her emotional well being. I value your expertise and welcome your assistance should a concern arise.
One way you can learn more about Madeline’s experiences with this very rare disease is by visiting her blog at www.madelinesjdmstory.blogspot.com. She loves to tell you about her pen pals literally from around the world, in which, she has made from this site. Plus, it will help give you an idea of the path we have taken in these past 16 months.
Thank you so much for taking the time to attend to this matter. I look forward to the new school year, as does Madeline, and developing a new partnership with each of you.
Sincerely,

Monday, August 10, 2009

First Day of School


Today was the first day of school. This is a picture of Madeline and her big brother Trey. Madeline is now a 5th grader and Trey is an 8th grader.

First day was great. Now only around 160 more to go.

Friday, August 7, 2009

Open House

I can't believe we start school Monday. It's just plain too hot to go back to school.

We had open house today. Did the routine hello new teacher, this is Madeline, she's excited about school and by the way she has a disease...and you know the rest of the story. I do give each teacher a letter regarding Madeline's disease and restrictions (which I will post a copy of the letter Monday) and a bottle of hand sanitizer. I am a big advocate on supplying the classrooms with hand sanitizer. Anything I can do to keep the germs away.

Madeline is now officially a 5th grader. Her brother is now an 8th grader. I do hope they have a great school year. They are wonderful kids. I know they will make Rick and I very proud. Just like they do each year.

Wednesday, August 5, 2009

In less than a month

We are on the countdown for Madeline to have her first try at decreasing her medication. September 1 is the big day. We will decrease, per doc orders, her cyclosporine from 2.5 mg to 1 mg daily. She will continue her weekly treatment of methotraxate at the same dose level.

How do I feel about this? Horrified.

I find it very interesting that my fear, when Madeline was first diagnosed, were the medications and their side effects. Now, after I see how much the meds have helped her, I am now having the fear of what will happen when her meds are decreased. We've come so far. I just don't want to see her experience a setback.

I'm staying positive for her, of course. I'm making sure she understands this is the step towards remission and not having to take medications forever. She's glad to hear that. She just wishes it was the methotraxate going away.

Tuesday, July 28, 2009

July is National Juvenile Arthritis Month

If you are reading on this site you know...I'm a parent with a child diagnosed w/ Juvenile Dermatomyositits - a rare form in the juvenile arthritis family of diseases. I came across this information online and wanted to share with anymore who may not know how many children are affected by arthritis. On my site, I have a firstgiving block. If you feel compelled to make a donation to Cure JM - the organization my daughter's disease is most associated with - please do so. And thanks...

When we are becoming parents, our one wish is that we have happy, healthy children and that no harm comes to them. Imagine if your child were living with pain every single day of their lives. This pain can be controlled but not eradicated. There is no way to prevent it and no cure- only hope to keep the progression to a minimum and the child in as little pain as possible. Can you imagine how you would feel? I know how it feels...it's the absolute worst feeling possible.

July is National Juvenile Arthritis Month. Facts from the Arthritis Foundation:
Juvenile arthritis (JA) refers to any form of arthritis or an arthritis-related condition that develops in children or teenagers who are less than 18 years of age. Impact of Juvenile Arthritis: Approximately 294,000 children under the age of 18 are affected by pediatric arthritis and rheumatologic conditions. Juvenile arthritis is one of the most common childhood diseases in the United States. Common Symptoms of Juvenile Arthritis: Pain, swelling, tenderness and stiffness of joints, causing limited range of motion• Joint contracture, which results from holding a painful joint in a flexed position for an extended period• Damage to joint cartilage and bone leading to joint deformity and impaired use of the joint• Altered growth of bone and joints leading to short statureTypes of Juvenile Arthritis:• Polyarticular JA affects five or more joints and affects girls more frequently than boys, most commonly affects knees, wrists and ankles can affect weight-bearing and other joints, including hips, neck, shoulders and often affects the same joint on both sides of the body• Pauciarticular JA affects four or fewer joints and usually affects the large joints: knees, ankles or wrists often affects a joint on one side of the body only, particularly the knee may cause eye inflammation (uveitis) which is seen most frequently in young girls with positive anti-nuclear antibodies (ANA)• Systemic Onset JA can affect boys and girls equally cause high, spiking fevers of 103 degrees or higher, lasting for weeks or even months cause a rash consisting of pale, red spots on the child’s chest, thighs and sometimes other parts of the body; cause arthritis in the small joints of the hands, wrists, knees and ankles. Other Types of Juvenile Arthritis:• Juvenile Spondyloarthropies (ankylosing spondylitis, seronegative enthesopathy andarthropathy syndrome) are a group of diseases that involve the spine and joints of the lower extremities, most commonly the hips and knees.• Juvenile Psoriatic Arthritis is a type of arthritis affecting both girls and boys that occurs in association with the skin condition psoriasis.• Juvenile Dermatomyositis is an inflammatory disease that causes muscle weakness and a characteristic skin rash on the eyelids and other areas such as knees, ankles, elbows, wrists, chest and hands.• Juvenile Systemic Lupus Erythematosus is an autoimmune disease associated with skin rashes, arthritis, pleurisy, kidney disease and neurologic movement.• Juvenile Vasculitis is an inflammation of the blood vessels and can be both a primary childhood disease and a feature of other syndromes, including dermatomyositis and systemic lupus erythematosus.

Causes of Juvenile Arthritis:
The cause of most forms of juvenile arthritis is unknown, but it is not contagious and there is no evidence that foods, toxins, allergies or vitamin deficiencies play a role. The primary goals of treatment for juvenile arthritis are to control inflammation, relieve pain, prevent joint damage and maximize functional abilities.

How does the Arthritis Foundation help?The Arthritis Foundation supports research, health education and government advocacy efforts to improve the lives of the nearly 46 million Americans with arthritis, one of the nation’s most common causes of disability. Check them out at www.arthritis.org.

As mentioned earlier, another organization closer to my daughter's disease is Cure JM. They are also doing great things. Check them out at www.curejm.com. Today, I ask for you to take a moment to give thanks for the healthy children or grandchildren in your life and then check out these sites to learn a little more about these debilitating diseases that affect so very many children.

Friday, July 24, 2009

Home from camp

We got a call from Madeline Wednesday night. She was crying and very homesick. She said she hated camp and wanted to come home. I tried to coach her to stay. She called back three times. Once she couldn't breathe for she was crying so hard...we left to go pick her up.

She was so tired and so unhappy. She said it was too long to be away from us. She also said she couldn't sleep, people kept stepping on her toes, she couldn't take long showers and they made her clean. I guess the princess is not up to camp life.

We were so tired the next day at work for we literally in the middle of the night drove to pick her up. But, I also slept very good knowing she was back under the roof with us.

Oh - and she never, never, ever wants to go to camp again. She says she is more of a shopping and spa person.

What a nut!

Wednesday, July 22, 2009

Camp update

Madeline is on day three of camp now. Her first night she called and said she was homesick and began crying. It was all I could do to not get in my car and go pick her up. But, she never called back.

Last night, she called and was happy and content. She said a boy asked her to dance at that dance, but she told him no. I asked her why she said no and she replied...he wasn't cute. She went on to tell me no one cute is asking her to dance. I then told her I'm sure you are not getting asked to dance because boys are intimidated by you because you are so pretty. She actually told me...That's exactly what I was thinking too!!! She is nuts!

Glad she is having fun. I can't wait for Friday to get here.

Oh - and the good news for mom...it's raining there. I was so worried she'd not apply and reapply her sunblock. So, this makes it one less thing for mom and dad to worry about.

Sunday, July 19, 2009

Packing, packing, packing

We've been packing for camp for now three days. We are finally ready. I think her luggage is around 40 lbs each though. It will be interesting to know how she will bring all this to her cabin. Hence, we don't get to go to camp w/ her. We drop her off at a school where a bus will bring her. Oh...this is going to be hard.

I'll post a picture of her on her way tomorrow. She is so excited.

Tuesday, July 14, 2009

Madeline is going to camp!

Madeline is going to camp next week. This will be her first time to ever be away from us more than one night. She is so excited. Her mom and dad, not so. :)

I've made a list so we can start packing. Madeline found out there are dances each night so I am sure she has outfits already selected. I wish I could be a fly on the wall. I'm sure there will be loads of 10 year old drama going on at the dances.

It's really going to be hard letting her go for a week. I'm so excited for her, but selfishly wishing she stayed home. She'll be fine though. She's a smart, tough little girl. Now, I just have to work on myself.

Monday, July 13, 2009

Which is better?

We had a great weekend w/ family at our house, swimming, etc. Madeline did get a little sunburned on her face. It seems no matter how much sunblock we put on and repeat applying she still can get a little red. It makes me feel terrible and irresponsible as a mother.

Which is better - never letting your child go outside or to get sunburned? Either way, there is no good answer. Never in my life would I think I'd have to worry about such things. Ridiculous!

Thursday, July 9, 2009

Vacation Pics




I wanted to include a few pics from our vacation in the Smoky Mountains. The first picture is Madeline doing her signature super model pose at a stream we stopped at and explored. The second picture is of Trey and Madeline in downtown Gatlinburg.

We had a great time and never slowed down. Our favorite was horseback riding in the mountains. We were even surprised by seeing a bear 100 ft. away from us. Scary!


Tuesday, July 7, 2009

Been on hiatus

I know...you've probably wondered what happened? I've been on hiatus. Not because anything is wrong. We've just been going and going.

We had a great vacation in the mountains. We also had a wonderful 4th of July weekend w/ family and friends.

Madeline is doing great. I see a little redness sometimes on her eyelids...but I may be looking too close and may be seeing something that is really nothing. Who knows....

Great news about Madeline is that she is doing a solo next year for dance. She began last week her private classes w/ her teacher. She will perform lyrical ballet. I can't wait to see her. She practices constantly and is loving every minute of it.

We still plan to decrease her meds in September. I am honestly horrified. All is so good...and I want it to stay that way.

Sunday, June 21, 2009

To the Mountains

We've left on day one of vacation - the Smoky Mountains. Madeline is feeling and looking great. We'll post pics and give updates on our vacation.

The last time we were here was two years ago...before Madeline was diagnosed. I got sick while on vacation, as well as Madeline. I often wonder if this is what triggered her JDM. But who knows???

No thoughts like that now...only good ones and good memories to make this week.

Friday, June 19, 2009

Great news - blood work

Great news regarding Madeline's blood work. Here are the results.

AST - 25 (0-31 normal)
ALT - 11 (0-31 normal)
CPK (CK) - 112 (24-170 normal)
LDH - 225 (120-300 normal)
Aldolase - 5.2 (3.3-9.7 normal)

I was so excited when I saw her results. I know the reality is he probably had her do these tests as a base point to follow when we begin to decrease in September. But at least I know the medicine is working great and her little body is not inflamed. I do wish he'd ordered an ANA. I'll have to remember to request that next time we see him.

Now, it's time to pack...VACATION!!!

Tuesday, June 16, 2009

Blood draw

Madeline is attending art camp this week. They are making stained glass and I can't wait to see all the beautiful pieces she is making. Yesterday, after camp her dad dropped her off to me at the hospital and we had her blood drawn. I'm anxious to find out the results, especially with the additional testing. I'll go down to medical records later today.

We are getting ready for vacation...and it can not be soon enough!

Wednesday, June 10, 2009

Quarterly Photo Update

Attached you will find new photos of Madeline's JDM affected areas. She is looking great and has somewhat of a tan. I promise we are wearing sunblock, it's just her complexion tans easily. Last year, we almost totally stayed out of the sun. She only played outside in the evenings. She couldn't handle the heat and it hurt her skin. This is no longer a problem. Great strides...
















































































Wednesday, June 3, 2009

Dr. Visit in Texas

We traveled yesterday to see Dr. W in Texas. Overall we had a good visit. Here is an overview of her height/weight, etc.

Height - 5 foot - a very tall 10 year old. Three more inches and she passes me up.
Weight - 95 lbs. - her brother, who is 13, only weighs five pounds more.
Temp - 98.5
BP - 112/64
Heart Rate - 103

We started out the appointment with the regular questions of how she feels, how is she doing, etc. We discussed her only problems being the various illnesses and ear infections we constantly battle. He discussed her flu and other various items. He then viewed her skin and completed her muscle strength testing. She pasted the strength test with flying colors. He even commented how strong she is. Nothing wrong there!!! GREAT!

From our last appointment he mentioned decreasing her meds at this visit. This left us anxious and excited. I had finally convinced myself this was a good thing and then yesterday he decided to not decrease her meds. I was a little disappointed. He wants her to get through the summer and decrease her cyclosporine in more than half in September. We will go from 2.5 cc to 1 cc. We will not go back to see him until October so he can see how she reacts. We will not decrease the methotraxate yet.

He also added additional blood work for her every two months. Now the order includes ALT, AST, aldolase, CPK and LDH. I will bring her this week for those tests.

Overall, this was a great appointment and I feel we are so lucky to have such great outcomes so quickly. With the decrease of meds this fall, we are actually at the two year mark for her first "symptoms" of JDM. Hard to believe it's been this long, yet at times, it seems just like yesterday.

One fun part of the appointment....Madeline watches a show on TLC called Little People. She realized that the female - Dr. Jennifer - works at Dr. W's hospital, Texas Children's Hospital. She wanted to know if he knew her, which he did. She thought that was awesome. Too funny.

Monday, June 1, 2009

If it ain't broke...

We spent the entire weekend outside playing in the pool. It was great weather and we loved every moment of it. Madeline had her good friend, Madeline, over to play. We put sunblock on many times, but Madeline's face still got a little red. When she woke up Sunday, it was still red. I feel so guilty.

We go to see Dr. W in Texas tomorrow. Besides the red face, Madeline also has a tan. We've put sunblock on but she is still tanning. She is like her dad who can get very dark easily in the summer. If he says anything, I'll remind him (Dr. W) that he was the one who said to continue letting her be a child and do regular activities. Swimming during the day (especially w/ a pool in your backyard) is one of those things. :)

I anticipate Dr. W decreasing her meds tomorrow. One moment, I am so excited. The next, I am horrified. I guess I have the mentality 'if it ain't broke - don't fix it.' We'll see.

I'll update you on the visit tomorrow. Wish us luck!

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.

Thursday, April 30, 2009

Making headlines...




Madeline was in the newspaper today. This is she (left) and her friend Chesney at the Mobile dance competition. This was their tap outfit that they danced to the song "New Orleans". It's an awesome routine. They also performed this routine at our recent competition in Florida. Go Madeline!!!

Tuesday, April 28, 2009

Feeling Good and Blessed

We are the traveling family lately. This past weekend we were in Baton Rouge for Madeline's big brother Trey's baseball game. We played three games and enjoyed more beautiful weather. Unfortunately, both Trey and Madeline caught a stomach virus. Only lasted 24 hours and never made them run fever. Thank Goodness. Madeline was over the virus just as quickly as Trey, so that's always reassuring.

One thing regarding her suppressed immune system due to her medications - I remember when she first started her medications this was my biggest fear. What if she caught something she was not able to overcome? So far, so good. Hand washing, hand washing, and lots of sanitizer are good things. And now we have the Swine Flu knocking at our back door. UGH!

Madeline has two field trips this week. I'm going with her tomorrow to SciPort - a science museum in Shreveport. Amazing in just one year how wonderful this spring is compared to last. She looks good, feels good and I feel blessed.

Friday, April 24, 2009

High emotions..or just plain tired

Madeline had a rough day yesterday. I'm not sure what is wrong with her. She had dance (her three hours of classes she has each Thursday night) and kept calling her dad and I to pick her up early. I ended up going the last 30 minutes and getting her early. The moment she walked out of the classroom, she began crying. I didn't know what was wrong. She said she didn't either. She had no fever, no pain, etc. It did bring me back to this time last year when she would do this for no reason at all. Except last year she'd also have a "breakdown" of anger she could not control - all part of the disease I know now.

I'm hoping she is just tired. I know I am. We've had a busy week with the dance trip to Florida, then back to school and no again leaving this weekend for her brother's travel baseball tournament.

Good thing there's only 20 days of school left. Summer break should help us all.

Tuesday, April 21, 2009

We're back!!!

We made it home from Florida late Sunday. Madeline and her dance team did an awesome job. They won Top First, Gold Elite (which is very, very good) for both their jazz and tap routines. They had a wonderful time and we had great weather. Oddly enough, it was actually a little cold there. In fact, it was warmer at home in Louisiana than it was in Florida.

The bad news...Madeline's face got a little red. I don't know if it was truly sunburned or just her rash irritated. The odd thing is that today there is nothing there. So a little confused by that one. It was really a struggle getting her to come to me to reapply her sunblock. She had all her friends there from dance and she wanted to run, swim, play on the beach...like any kid would want to. She and I got into a fight at one point and I had to get drastic with her. I told her, "if you don't put on the sunblock we are going to the room and staying there". I think she thought I was bluffing her, but then she saw I was dead serious. I kept reminding her why this was so important. But it was as if she had blinders on. This makes me nervous for her teen years. In fact, she commented to me (yes, at the age of 10) how jealous she was at all these pretty, tanned girls. She even said, "Momma, remember how dark I could get? I hate how white I am now."

Again, I see this battle only getting worse with age. What do you do?

Wednesday, April 15, 2009

Dancing at the Beach

We leave today for Madeline's national dance competition. And we are so excited for they've worked so hard to earn a spot at nationals. The downside...it's in Florida - on the BEACH. Literally, they are building a stage on the beach where the dancers will perform. UGH!

So, here we go again. This will be an entire day of me stressing about her getting too much sun. I know it will be stressful for her too because I bother her with my worry. I plan to bring a golf umbrella and tons of sun block. I just hope the heat does not bother her. Last year, when we had already planned our vacation to the beach before her diagnosis, Madeline barely went outside. She ended up staying in the beach house almost the entire time. Not fun for her.

Wish us luck. I do hope they win. They deserve it.

Monday, April 13, 2009

Helplessness!

We had a great Easter, except that it rained. But we didn't care for we had enough chocolate in the house to keep us occupied.

Madeline had a strange thing happen on Saturday night. She's done this a couple times in the past. We had Madeline's grandparents and Aunt Ashlee over to dye eggs and eat spaghetti. She sat down to eat supper and just started crying. Not just the sad cry, but extreme "I can't handle the pain" pain. We asked her what was wrong and she said it was her hip. She pointed to the middle section - between her pelvis and outside hip. It makes you think it is her hip flexor...but what do I know.

I really want Madeline to have an MRI done on her legs and hips. I plan to ask..or more like demand this test at our May appt. I would feel better if we could just know if this is the JDM or find that it is something else. She still has the red splotches on her legs and the irritating, itchy feeling it gives her in the mornings or if she is standing for a long time. This drives me nuts. I'm not quite sure what to do if he says he will not order the MRI. Helplessness!

Wednesday, April 8, 2009

Results

We were supposed to go to Texas yesterday for Madeline's quarterly check-up. Unfortunately, we had to cancel her appointment due to her fourth grade required LEAP testing. We will go in May instead, which is fine since she is doing so well.

I just called to get her blood work results. All good - ALT - 11; AST - 24. Good news.

We are gearing up for the Easter bunny and have big plans Saturday to dye at least two dozen eggs. We will get together with family as well on Sunday after Mass. I just hope it doesn't rain so the kids can do their Easter egg hunts. Just doesn't seem like Easter without being outdoors and hunting for eggs.

Monday, April 6, 2009

Drama

We had drama this weekend at our house.

We woke up Saturday morning since Madeline had to be at a meeting at 8 a.m. and then dance from 9:30 a.m. - 12:30 p.m. The boy's had baseball...so hectic day. As I was leaving the house I mentioned to Rick that last night Madeline's cyclosporine was empty and needed refilled. I asked him to take care of it and I'd pick up the script. Well, long story short...the pharmacy didn't have any in stock. Nor did the over 10 - 15 pharmacies in town. Rick even tried Lafayette, no luck. Rick and I had phone calls going back and forth trying to figure out what to do. I was in a panic! He was too. We have NEVER missed a dose and I felt so guilty for dropping the ball on her refills.

So, Madeline has not had her cyclosporine for two days now. The pharmacy assured us we would have it today (Monday). I don't really know what I expected by her not taking the meds, but I sure the heck didn't want to have her affected by my lack of filling her meds. Oh, the guilt...it's terrible.

Thursday, April 2, 2009

April showers

Another new month...hard to believe. It seems to rain daily...it's getting rather old.

I've slacked somewhat on keeping up w/ the blog since I've been a little down and out. I'm heading to the hospital in just a bit to get a nerve block in my neck. I can't wait to get this done for it give me great relief in a day or two. Gotta love those interventional radiologist...this is much better than back surgery!

Madeline is doing great. She has a busy week for they are doing their LEAP testing. This is a test that determines if she gets to progress to 5th grade. She's nervous, of course. But I am not. She is a great standardized tester, so she'll do just fine.

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.

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.