Saturday, November 29, 2008

This Thanksgiving - Gratitude with Attitude

This Thanksgiving weekend I can't help but recall how much has happened in our life this past year. It was this time last year when Madeline's first sign of what we thought was "poison ivy" appeared on her face. Little did we know at that time our life was to change so much.

I feel there is somewhat of a conquer at this one year mark. So many families told me it could take a year or two before the effects of the muscle take place. Well, it's been one year. No muscle problems yet. Of course, I more year to worry.

I've completely stopped asking why this disease has happened to my baby. It was not healthy for me. I was struggling, along with the rest of my family. But I was angry too and did not want to admit that to anyone, especially myself. I realize now that my struggling was actually my healing process. I'm not angry anymore and I'm not scared (well, most of the time). I've accepted this disease as a shifting of sands in our life and one that will only make my beautiful daughter in the long run a stronger, more incredible woman than she is already destined to be. I also believe it will (and has) make our family even closer .

This Thanksgiving I am so thankful for my husband, son Trey, parents, in-laws, sisters, friends and co-workers. I am also thankful to the many individuals who have contacted me whose child too suffers from this disease. I appreciate hearing their comments and sharing their life stories with us.

And of course, I am so thankful for Madeline. I am constantly amazed that a nine year old little girl can teach me so much. She teaches me with her steadfast attitude that she will "be done with this disease by the time she is 12" comments or her determination to dance for four hours even though her medicine makes her so tired. With this disease, I have learned so much from her. And that main lesson is Attitude.

Wednesday, November 26, 2008

Dried blood in toe nail

Many months back I wrote about Madeline having dried blood in her nails. This went away rather quickly and I've not thought about it any more. Several weeks ago Madeline mentioned for me to look at the spot on her big toe. I didn't think much of it. I thought maybe she'd hit her toe or dropped something on it or maybe it was the pressure from her pointe shoes. The dried blood under the toe nail is still there.

I know w/ JDM the nail beds are important to look at to see if you have active disease. But does that include the toe nails??? It would make sense, but I've only heard other parents talk about hand nails. Another question I'll have to ask the doc.

Monday, November 24, 2008

We're back...

We are back from Dallas. We got in late Sunday evening and all of us were exhausted. Madeline was sore, but for good reason. She danced three hours Friday, eight hours Saturday and five hours Sunday. They worked those little girls hard at dance camp. She had a great time and we did too.

We went shopping, of course, but we also went to an ice exhibit and ice skating. Madeline had a bad fall skating though and hurt both of her knees. She cried and cried and is still complaining her knees hurt. She fell straight down on her belly, hands, stomach and knees. She was soaking wet, poor thing.

I took a lot of pics of our weekend getaway and will have to post some of them soon.

Thursday, November 20, 2008

Texas, Texas, Yee-Haw

It's an exciting evening at our house. We are packing to go to Dallas for Madeline's dance convention. This is our third year to attend this dance camp and it is top notch. Her entire dance competition team attends. We also have some fun on the side by going to the Galleria to ice skate, a little (well okay a lot) shopping at Grapevine Mills and great restaurants. This year we also plan to go to American Girl. Madeline's had her eye on a doll so we need to go check this place out...I guess. $

I attended an event we sponsored at the hospital tonight called Blessings of Life. It's targeted to our oncology patients, but the service was one anyone could appreciate. The message was faith, hope and healing. It, of course, touched a nerve with me.

Oh - funny thing Madeline said tonight on our way home from dance. The leaves are finally beginning to fall around here. She said she hates seeing the leaves on the road because she keeps thinking I'm running over frogs. I didn't know what she was meaning, but then I realized the leaves blown by the wind look life frogs jumping across the road. She is so funny.

The kids are now out of school for the week. We look forward to a great Thanksgiving and a long weekend trip to Dallas.

Tuesday, November 18, 2008

Changed days for meds

We changed Madeline's chemotherapy treatment (methotraxate) to Saturday night instead of Friday night. Her medication really wipes her out and she sometimes has sleepovers, birthday parties, dance on Saturdays. It worked out really well this past weekend. She was able to rest all day Sunday. She actually had a neighbor friend come over that afternoon and they played until late in the evening.

She did have her competition dance team practice Saturday. We were able to go into the room to watch their routine at the end of practice. Madeline has one part in the routine that she has to pull up two girls from the floor. I could tell this was hard for her. Keep in mind she weighs around 70 lbs., is only 9 years old, is the youngest girl on the dance team (like two years younger) and she was pulling up girls somewhat larger than her. But in the back of my mind, I always wonder if it is something more.

Will that ever stop?

Sunday, November 16, 2008

Tooth Fairy Inflation

Madeline had a big day yesterday. She pulled her tooth out (well, actually her cousin Sarah pulled it out for her - yuck) and prepared for a visit from the tooth fairy. For some reason she believes that if you shine the tooth up real good, the tooth fairy will leave you a tip. Great! She has so many teeth loose right now. The tooth fairy is going to be really busy in the next few months.

She also had dance practice and a birthday party to go to on Saturday. She was not in the best of moods yesterday. She is battling yet another cold and maybe that was the problem. I noticed her face looking a little redder than it has been, but Rick tells me to calm down and not over react. We'll see. But, the redness on her face and moodiness concerns me. I know there is possibilities of set-backs....but I'm praying for her to be one of the lucky ones. Please say a little prayer for her too.

Thursday, November 13, 2008

Aching Heart

My heart is aching today. I follow the Cure JM site that is dedicated to children w/ myositis (JDM). On the blog today, I saw that one of the JM children had passed away. This young lady's blog was one of the first I read when Madeline was diagnosed. This just breaks my heart. I do not know this girl at all, but can somewhat comprehend the pain, love, concern and anguish she and her family dealt with for many years in regards to this disease.

Madeline is not near as ill as this young lady. At times, I feel guilty when chatting w/ other mothers or fathers whose children are much more ill.

But, I do count my blessings. With Thanksgiving just around the corner, we do have a lot to be thankful for.

But tonight I recognize that Heaven just welcomed a new Angel and my prayers of strength and love float to the parents of this sweet girl.

Tuesday, November 11, 2008

Another ear ache

Today is Veteran's Day - we salute all of you wonderful and brave veterans. We are a better country because of your sacrifices. Thank you.

The kids were off school today and the Courthouse was closed so Rick was home with them. Madeline was invited to go to see Madagascar 2 with a friend and had a good time. She said it was AWESEOME! But...she came home with an ear ache. She says it has hurt her all day so I will call the doc in the morning for an appointment.

I don't know how many ear aches she has had these past six months, but it seems like a lot. But if this is the worse we get - fine by me.

Monday, November 10, 2008


We had a GREAT time at the LSU vs. BAMA game Saturday. We have season tickets and normally go to every game. But this year we've sold many of our tickets. I am glad we went to this game. The day was beautiful. We found a lot of shade. And the atmosphere was awesome.
The game was great and ended up going into overtime. If only LSU had an experienced quarterback, I believe we would of won. Oh well! It was still a blast and tiger stadium was loud and so much fun.
Madeline had a good time except for a melt-down in the second quarter. She takes her methotraxate on Friday nights and normally this causes her to be very tired on Saturday. We did a lot of walking, riding, etc. She started crying and saying she did not feel good. Once I calmed her down and gave her a little mommy attention, she was better. I thought she was getting sick at first, but so glad to know it was just the tiredness kicking in.
Rick and I discussed changing her metho to Saturday nights. I think this will be a wise choice for all of us.

Thursday, November 6, 2008

When did she get JDM?

Still to this day I agonize on what caused Madeline to get JDM. With my type A personality, my mind ponders and ponders different situations which may of lead to this disease. One that comes quickly to mind is on our vacation summer of 2007 when I became ill with a virus. I was sicker than I'd been in a long time during that trip. I don't recall Madeline getting sick (very sick) like I was, but do recall she had the nose, cough going on. This was in June.

We ended up taking a second vacation that summer to Florida. We went mid - August. Madeline never burns and we always wore sunblock. But on this vacation she showed me that the skin was coming off her hands and feet. Not deep peeling, but more like dry skin exfoliating a lot. I didn't think very much about the skin, but now I wish I'd had.

My mommy gut tells me this was the beginning. It was three months later the redness on her face began. This was late November, early December.

I often wonder what would life for Madeline be today if we'd not gone to the Smokey Mountains. But then again, only God really knows.

Wednesday, November 5, 2008

A syte in her eye

Madeline woke up this morning with a stye in her eye. This is her first ever. I looked up today what a syte is exactly and here is what I found:

Styes are caused by staphylococcal bacteria. This bacterium is often found in the nose, and it's easily transferred to the eye by rubbing first your nose, then your eye.

Poor Madeline. I need to call her doc and get an ointment for the stye. Plus, I can't help but wonder if it could spread and with her weakened immune system we experience worse issues.

Of course, I picked at her and told her "you must of told a lie to have a stye." She responded quickly that she had not. I then had to explain to her what an old wise tale is. Speaking of wise tales...a co-worker told me to rub yellow gold on the stye. It's supposed to be the cure all of stye. I'm taking my ring off now. LOL

Tuesday, November 4, 2008

Halloween was fun. Each year we have our immediate and extended family members over for chili and a hay ride. Our neighborhood is very large and it's too darn hard to walk to each house which are on 2 acre lots.
Madeline was a beautiful witch and Trey was a dead pirate. I dressed as a biker babe, which did nothing for Rick. He thought I looked a little too masculine. Too funny.

The weather was perfect and Madeline never missed a beat. She ran non-stop and never tired until around 11 p.m. She actually fell asleep in her costume.

It's wonderful to see her energized and looking so healthy. What a treat.

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.