Thursday, October 30, 2008

Good blood work results

Good news on blood work. AST was 24; reference is 0 -31 units/L; ALT was 10; reference 0 - 31 units/L. So glad her little body is handling these big drugs. Once less thing to worry about.

Madeline woke up with morning with her upper eyelid swollen. She has not had this happen since this past spring. There's always little reminders that her disease is still active.

Wednesday, October 29, 2008

Irritating pain

Madeline is still experiencing pain in her feet in the mornings. It breaks my heart for her especially since we don't know if it is the JDM or just growing pains. The unknown with this disease makes me so worrisome.

Each morning, while I do her hair, she wants to sit down or for me to hurry up and finish her hair. The pain is still explained as tingling -more like it is irritating to her. Yet, once she up for an hour or less, she is fine and running around like nothing is wrong. Ugh!

Monday, October 27, 2008

Field Trips and Fall

Madeline had a really good weekend. She was not tired at all and have a wonderful time with our cooler weather. Cooler weather in these neck of the woods means low 80s, high 70s. That is great for October. Fall is we just need the leaves to start turning. Maybe by Christmas. ;)

Madeline has a field trip tomorrow. They are going to a train station and then the park for a picnic. After dance this evening, I asked Madeline if she was excited about her field trip. She said of course but then said, "but momma, I've got to remember to bring my sunblock with me." It's amazing how mature she is about this disease. I am so proud of her.

Saturday, October 25, 2008

An inch a month..I hope not!

I mentioned in an earlier post that Madeline has had heel pain. Our son experienced this same pain when he had a quick growth spurt. Well...Friday morning Madeline came down to go to school and she mentioned her heel pain. We had just (actually on Sept. 20) measured the kids last month so I asked Madeline to come over and let's see if she'd grown any. And yes she had - exactly one inch in one month.

I can't believe she's grown an entire inch in a month. I would not even think that was possible. No wonder the poor baby's feet hurt. Oh, speaking of feet. She is now in a shoe size a 6 1/2. Her feet have grown as well. She was in a shoe size 5 at the beginning of the school year. And she is only 9 years old. Holy cow!

Geaux Tigers...beat the bulldogs!

Friday, October 24, 2008

No geaux to tigers game

We just got back from the hospital where Madeline had her bi-monthly blood draw. This is the first time that we had a little problem. She had a vein blow. It hurt her so badly. I thought for a moment she was going to either vomit or pass out. It really stung bad and I can already see the bruise coming. They then stuck her other arm and that went easy for her.

I've also decided that we are not going to go the LSU/Georgia game tomorrow. They moved the game time to 2:30 p.m. and I don't want her sitting in all that sunlight for four hours. I hate missing the game (you have no idea how bad), but we've come to far to let the sun get to her. Plus, she's always a little more sensitive to the sun the day after she takes her methotraxate. Her dad and brother are still going to the game and her aunt and uncle are going to use our seats. They'll have a great time. We'll just cheer from home and have a little girl time togetherness. Sounds good to me.

Wednesday, October 22, 2008

My mommy gut is telling me something

I've got a gut feeling that is making me a little nervous. Madeline has been doing very well. You wouldn't even notice looking at her she has anything going on such as JDM. But yesterday I noticed redness in her face. Her eyelids (like red eyeliner) has redness again. I've noticed this happens on and off, but it normally goes away. But this morning, while doing her hair, I noticed under her eye was once again that bright red like you've rubbed your face really hard redness. I'm going to give it one more day and see how she looks in the morning. If I notice the redness again, I may call her doctor. Am I overreacting?

We also bring Madeline Friday for her bloodwork. She's actually reminding me now that it is time to do her bloodwork. That girl constantly amazes me.

Monday, October 20, 2008

The worlds grumpiest cheerleader

Madeline went Saturday to a local schools cheerleading camp. I had not thought about her taking her methotraxate the Friday night before and how tired she would be at the camp. Boy was she a grump. She was in no way a happy, perky cheerleader. She was the exact opposite. I was almost embarrassed with how she was acting - rolling her eyes, body language. I had to address her about her behavior. Even if she is tired or not feeling well, she doesn't have to be rude. Tired and rude are two different words and actions. And I will not tolerate attitude.

We had a "come to Jesus" discussion and I believe she understood what I was talking about. Now, to see if she actually acts on our discussion.

Friday, October 17, 2008

Madeline's Quarterly Photo Documentary

In July, I began to document Madeline's "rash" photos so we could document quarterly photos with hopes of improvement each time. So, this is the second of the quarterly photo updates. To truly appreciate Madeline's improvement you must go back to the July 12 blog and compare then and now, what a change. But...she is very hairy as you can see on her arms.
One thing I notice in both quarterly photos - Madeline's chipped pink nail polish. Pink is definitely Madeline's signature color. :)

Thursday, October 16, 2008

Heel pain

Madeline is doing good this week. The only complaint she has is that one of her heels are bothering her. My first reaction was to freak out, but then Rick reminded me that she is really growing a lot (height) right now and that our son Trey at this same age complained often about heel pain. In fact, at one point he would tiptoe from the pain for it hurt too bad to put his foot completely down. Of course he has not experienced this pain in a long while, so maybe this is what is going on w/ Miss Madeline.

Rick has calmed my fears (for now).

Sunday, October 12, 2008

Update of doctor's appointment

I know I am late posting Madeline's doctor appointment update. We have just been very busy between school, dance, sports, projects, work and life in general.

The visit w/ Dr. W was great. He was very, very pleased with her skin. In fact, he said if I didn't know she even had JDM, I would not even know looking w/ the naked eye. She still has a few spots on her elbows and around her nailbeds. Her knees are clear, chest is clear, as well as her face. He then tested muscle strength...strong as a ox! Not surprised with that, but oh so very relived.

We then let him know what we are experiencing, the tingling legs in the mornings, letting him know about her recent illnesses. I also brought the picture I posted on this blog of her odd bumps on her face that were straight in a line. He had no answer for that one - odd. He didn't think the JDM was causing the tingling in the legs, but possibly it was the medications. He told us to continue to watch this. He reminded us to have our blood work done (which is due in a couple of weeks). He did say do not worry about the cyclosporine serum level checks since last time we did this the results showed less absorption after the increase of meds (plus, she is doing better than ever).

He had just come back from a conference in London and mentioned the key to JDM is what we all know aggressive treatment. Therefore, he wants her to stay with her drug cocktail for now. Fine by me and her dad. We are in no hurry to stop this process that is going in the right direction. He wrote us scripts and we were on our way.

For consistency purposes, Madeline weighed 83.4 lbs. (that's almost 10 lbs. in three months), her height was 57 3/4 inches (and she is only 9), temp was 98.3, blood pressure was 119/76, and her heart rate was 74. She has really grown so much these past three months. I read somewhere one time that this disease can stunt growth...not happening here.

I am so thankful how well Madeline is doing. I will take quarterly photos (like last time) documenting her rash this week. Otherwise, another trip to Texas in January.

Monday, October 6, 2008

Squirrel gumbo anyone? Pics included...

In case you don't know...that's an alligator snapping turtle.

We had an eventful weekend. We are from Louisiana and our culture is somewhat different from other areas of the country. With that said...we went squirrel hunting/camping this weekend. It's opening season (always the first Saturday in October, if you ever wanted to know) and a family tradition for all of the grandparents, aunts, uncles and cousins to head to the woods.

The kids had a blast. They rode four wheelers, go carts, fished, hunted, walked in the woods and looked for critters. Then, Saturday night after the big hunt, squirrel gumbo was prepared and everyone ate. We also celebrated (belated due to the hurricane) my dad's 70th birthday.

I know what many of you are thinking....redneck, I understand. :) But it's really about family togetherness and tradition which is so strong in this neck of the woods.

We leave for Madeline's checkup in Texas tomorrow. Say a little prayer for us.

Thursday, October 2, 2008

Doctor appointment in Texas coming up...

Madeline completed her antibiotics and is doing much better, but she still has a cough. I did finally make contact w/ our physician in Houston and we are on for our appointment next week. I don't look forward to the drive, but do look forward to asking another plethora of questions. :)

I feel like our appointment should yield good results for I feel Madeline is doing better than ever. Keep your fingers crossed.

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.