Thursday, July 31, 2008

School starts in 11 days

I can't believe the first day of school is in 11 days. Madeline is very excited and in fact already has her backpack ready to go. I wish I was as enthusiastic. Our parent/teacher meetings are next Thursday which makes me dread having to go through the whole story again about Madeline and her JDM. I hope we get a teacher who "gets it" and understands how important it is for her to communicate with us what is going on emotionally w/ Madeline as well as understanding the importance of sun protection. I also dread all of the "germs" she will encounter and what illnesses Madeline may acquire since her meds suppressive her immune system. Actually, I'm horrified of what she may get.

All we can do is use hand sanitizer, pray, swab neosporin in her nostrils, pray some more and hope there are no serious illnesses at our school. Either way, fourth we come.

And speaking of horrified...Trey starts Junior High...SCARY!

Tuesday, July 29, 2008

Updated pics of Madeline's JDM rash

I brought Madeline shopping Sunday. This is how she looked w/ her new foundation to hide the "redness". It looked great and better yet is in a powder form and has built in sunscreen. Yea!

Elbows look somewhat better. This is still her area of most difficulty. Also, notice the abundance of hair..ugh.

This is a before we put the makeup on. She still looks so much better. Below is a better picture showing her improvement on the face.

Her knees change daily. She shaved the night before and this seems to bring out the bumps and redness.

Her blister is finally disappearing. Only took FOUR MONTHS! She really needs a manincure. :)

Her hands took better, except for the tips closest to the nailbeds.

Sunday, July 27, 2008

Didn't miss a beat

This weekend we were invited by our good friends Becky & Wendell to go water skiing (actually tubing). We took them up on the offer and off we went to the Ox Bow and Red River. I didn't know how Madeline would do since this is a very physical sport and she took her methotraxate Friday night. The girl didn't miss a beat. She tubed longer than any of the boys and crawled in and out of the boat to jump off the back deck into the river. She even learned how to do a front flip. I told Rick this morning how reassuring it is to see her so active. I hope this "crude" stays out of her muscles. Keep praying for that.

As mentioned earlier, I'm going to include new photos of Madeline's hands, elbows, knees, face. I believe her recent increase in cyclosporine has really done the trick. I can't attach tonight due to camera problems, so will try to put on tomorrow.

Friday, July 25, 2008

Bumps, ear ache and throat pain, again?'s Friday night so that means taking both methotraxate and cyclosporine. We just finished taking our meds, so I am sure she will sleep in tomorrow. She has those "bumps" coming again around her nose ridge. Not as many as last, but it is coming back. We put some more aloe vera on these since it did help last time. She also woke me up last night with an ear ache and sore throat. I guess here we go again. I hope not though. She's not mentioned either hurting today. I'll keep my fingers crossed.

It's so great to have everyone back under one roof. We picked up Trey yesterday in Baton Rouge from LSU Baseball Camp and he was exhausted. He is definitely not prepared to take care of himself yet. He did not put on the sunblock (like I told him to), he did not wear chapstick (blisters on lips) and I'm not even sure if he bathed daily. I made him bathe the moment he walked into the house. Deep down, I'm a little happy he still needs us. I know only in time he will not.

Wednesday, July 23, 2008

Red legs

Madeline woke up very tired today. I also noticed her lower calves and feet were very red this morning. No bumps, just fire engine red. After a few hours though, it went away. She also twisted her ankle at pointe last night and complained of it aching this morning. I will have to keep an eye on that.

We have a good day planned - we will travel to Baton Rouge and spend the night at the refurbished Capitol Inn. We've heard it is beautiful. Hopefully we will get to see the underground tunnel Huey Long used to escape the hotel...for whatever reason. We want to finish our school shopping at the mall in BR and then watch Trey at the LSU camp. We bring him home on Thursday - yea. We all miss him terribly.

Monday, July 21, 2008

Lazy day

Madeline had a lazy day today. She slept in and then laid around most of the day. We took a full dose of her meds last night, so I anticipated this reaction. Her rash looks pretty much the same. The things I am noticing is her hands and face are looking very good. I will take some new pics in a day or two to post so you can compare the improvements from just two weeks ago.

Another 2 1/2 ml of cyclosporine tonight.

Sunday, July 20, 2008

Stomach pains

We decided to increase Madeline's cyclosporine on Saturday night instead of Friday. She took her methotraxate Friday night and woke up Saturday feeling fine. She said a little tired, but no big deal. Last night we decided to give her a half dose increase instead of the full dose. Tonight, we will give her the new full dose. After taking the half increase, she doesn't feel good today. Her stomach is hurting and I feel like again we are only going to see her get worse before she gets used to the additional meds (I guess I am being pessimitistic). Her eyes look very tired and she has has several trips to the bathroom. She is also very quiet today...a sure sign she is not feeling good.

I guess it is best that we do this now before school starts. Hopefully her little body will be able to handle it better by then. School starts in three weeks...Madeline is so excited. She loves school. She already has her back pack packed with all school supplies labled and by the back door.

We bring Trey to Baton Rouge today for his week long LSU baseball camp. He is excited and seven of his good friends are going too. He is a little nervous too. This is his first time to be so far from us (2 hrs. away). His stomache bothered him too...but just nerves. Madeline told him this morning..."Trey-Trey, I'm going to miss you." Of course, he ignored her. Typical brother. :)

Friday, July 18, 2008

Increasing meds

I received a phone call today from Dr. W. He informed me that we need to increase her cyclosporine A intake. We will increase to 2 1/2 ml per day (from 1 1/2 ml daily). He also said to repeat labs and urinalysis one month from date of last test.

I hate to increase the meds. Just last night Madeline was laying with me and I felt something on her lower back. It was HAIR! All of a sudden on her lower back she has hair sprouting out. This is a common side effect w/ cyclosporine. At least others will not be able to see it. Poor baby.

Thursday, July 17, 2008

Flexibility and Foundation

I just received a phone call from Madeline. She was excited to tell me she bent all the way down and held her hands flat on the ground. She has been stretching more and more lately wanting to get more limber...which is great for her. I don't know if her flexibility issues are from the JDM (which I somewhat suspect) or just dad's genes. Our son Trey (and dad) is not flexible AT ALL. Madeline is shaped just like them too - long and lanky. But the good thing is she is working on those stretches. Her dad doesn't know this, but I told her if she could get that stretch with her hands flat, we'd get her a cell phone. She deserves it anyway.

Madeline's face is really looking good, as well as her knees. Her poor little elbows still stink though. We didn't take her methotraxate on our normal Tuesday night. When we saw Dr. W we told him about the issue of being tired a day or two after her metho and he said to just change it to Friday nights. So that is what we are doing. We really should of done that from the start, but were so anxious for her to get started on her meds. I think this will help her w/ dance (Tuesday & Thursday nights) as well as CCD night (Wednesday). Plus, school is just around the corner...UGH!

Speaking of school...I just told Rick last night that I was going to bring Madeline to Dillard's to purchase foundation for Madeline's face. She had a tough time with classmates picking on her at school and I think this will help her..if we even or ever need it (she looks so much better). They have different makeups that individuals w/ rosacea use. It looks very natural and light. I know many of you may think this is ridiculous, but I don't care. Madeline has had enough to deal with this year. I don't need her confidence and spirit beaten down by classmates. She is now a confident girl, but at the end of this past school year she was really having a hard time with the picking. I'm going to do everything I can to keep my beautiful, smart, confident little girl.

Wednesday, July 16, 2008

We have results

I went down to medical records yesterday and requested Madeline's tests results. At that time I only got the urinalysis. Today I received the serum test. Results were good -

Glucose - negative
Biliburin- negative
Ketone - negative
Spec. Gravity 1.012 (1.000-1.030 range)
Blood - trace
PH, urine - 6.0 (5.0-8.0 range)
Protein, urine - negative
Urobilinogen - 0.2 (0.1-1.0 EU/DL)
Nitrite - negative
Leukocyte Ester - negative
RBC - Rare
WBC - Rare
Epith Cells - none seen
Bacteria - trace

I also just got the cyclosporine serum results. It is: 141.0. Looks like this is where it should be, which means she is absorbing the medicine - good. Not sure how Dr. W will interpret, but will post if med dose changes.

Her little body seems to be handling the medications pretty well for now. I hope that continues.

Monday, July 14, 2008

Brotherly Love

Madeline came to the hospital this morning to have more blood drawn and a urinalysis. She thought the idea of pee in a cup was really funny since she had never done that before. She can't imagine what they want that for. :)

She did a good job having her blood taken again. One of the sweetest things happened while she was having her blood taken. Her brother Trey (age 12) came back to see what was taking place. He harassed her, of course, the entire time up to when the blood was taken. When the actual time came he saw she was nervous and started talking to her and reassuring her. He even rubbed her hair to coax her and counted down when they would be done. That boy is a sweetie.

They have to send the serum test off, but should be back tomorrow. I am very curious if she is/or is not absorbing the meds.

Madeline is rather red today. I don't know why. She wasn't outside more than 30 minutes yesterday. I just don't get it.

We did go and see the new American Girl movie Kit Kittenridge - very cute. Now Madeline wants one of those dolls. I'm sure they are only a couple hundred dollars. Thank God we don't have an American Girl store in our neck of the woods.

One last note, thank you to so many of you around the world, literally, who have emailed us such wonderful and encouraging notes. Madeline enjoys hearing all of your kind words. I told her we would get a map and mark all of the places that everyone lives who emails us. She loved that idea. Thanks again.

Saturday, July 12, 2008

Madeline's Quarterly Photo Documentary

I wanted to document quarterly photos of Madeline's rash with hopes of improvement each time. So, this is the first of the quarterly photo updates. We have Lulu in several of the shots too since she went to the beauty shop today and "just looks beautiful" says Madeline. Looks like Madeline needs a manicure, since Lulu's nails look much better than hers. Boy, that dog has a better life than all of us. ;)

Friday, July 11, 2008

Madeline's 12 week visit in Texas

It is hard to believe we have completed 12 weeks of treatment for Madeline's JDM. We drove yesterday to Texas for her three month appt. with Dr. W. It was an early start, but the kids slept until we got to Texas.

Madeline went through the normal history & physical process and the results were:
Weight 73.3 lbs.
Temp 98.5
BP 102/59
RR 18

Next, we visited w/ Dr. W for over an hour. He tested her muscle strength (which was excellent by the way, yea!) and he also tested her flexibility (which was extremely good as well, yea!). I know her daddy and I both felt relief when these tests were positive. He asked us and Madeline how things were going. I don't need to go into that here for it's all documented on this blog. He was somewhat pleased with her face rash, but agreed with us that her elbows, knees, etc. had not improved as much as we had hoped. I showed him the red bumps Madeline has and he believes these are associated with her strep throat.

He asked Madeline a lot of questions about dance, how she is feeling, how she feels about her face rash, is she tired, etc. Madeline did a great job answering him, but kept telling him every time "kind of tickles" when he asked if something hurt, like her elbow rash. She is nuts.

I then whipped out the notebook of questions which he patiently answered all. :) I told him also about some of the things we are experiencing now with Madeline like getting a runner's cramp very easily (not a norm for her), her being tired often, her mouth ulcers, etc.

I mentioned to him that her face seems to burn lately. Her face almost appears raw around her nose ridge. I put the prescribed cremes from dermatologist on these spots, but they burned to. He recommended putting aloe vera on her face to see if this helps. We will try it.

He wants us to do a cyclosporin serum level and urinalysis to check on Madeline's medicine absorption. We decided (well actually we let Madeline decide) to get home and do that testing at my hospital. He also told us to continue her meds like they are until we see the serum level test results. He also prescribed her 1 mg of folic acid daily to combat the mouth ulcers.

Overall, it was a long day, but a good day. We are so happy to know her muscle strength and flexibility are great. We will do the testing Monday and let you know the results the moment we do.

I will also take pictures of Madeline to post on Saturday's blog so we can document her visual evidence of JDM each quarter. Hopefully, each quarter we will see this stuff disappear.

Everyone's prayers are paying off...please make sure they continue.

Tuesday, July 8, 2008

Madeline's new rash form (red bumps)...any ideas?

Madeline's face rash to date. Notice redness and bumps around nose/chin.

Madeline's mysterious red bumps...they come and they go.

Monday, July 7, 2008

A Great Monday

Great day today. Madeline looks and feels wonderful. Yea! Plus, we traveled to Trey's all-star baseball game tonight and they won - score 14 - 5. Trey pitched and had an awesome game. We even lucked up that there was plenty shade at the park and the cloud cover and nice breeze made the July b-ball game tolerable for Madeline and us. We play again tomorrow night, but will not have to skip out of work as early as we did today, which is a good thing.

Good luck to my favorite P-ville All-Star, Trey. :)

Sunday, July 6, 2008

Madeline is feeling somewhat better

Madeline seems to be feeling better. She can that is good news. Last night her face looked so good. She still had a few of those bumps around her nose ridge. I wondered if the antibiotics may clear up those bumps. Well, I got my answer this morning - a big fat no. In fact, it looked like she had more this morning.

I just don't get what that is. We go to Texas Thursday so I can't wait to ask Dr. W if he thinks this is the JDM or do we get to win a trip to the dermatologist. I will keep you posted on the outcome.

We start Trey's All-Star Baseball Tournament tomorrow in Natchitoches. It will be an exciting, but tiring week. I know he will do great. He is a great player and an awesome boy. Good luck, Trey - Trey.

Saturday, July 5, 2008

Madeline is worse...

We did not have a good night Friday night. Madeline ended up crying herself to sleep due to how bad she was feeling. She couldn't swallow at all from her sore throat so she ended up either spitting when awake or drooling once asleep. She woke up still hurting very badly. She didn't want to talk, swallow, drink, eat and it even hurt for her to move her tongue. When I looked into her throat I knew what it was - Strep. She has red speckles all in her mouth and nice white fuzzies all in her throat. Her tonsils were so, so swollen. No wonder it hurt to talk or do anything else.

I ended up having to call a pediatrician taking call for our regular doc due to he being out to town. This was a pain. His nurse said to call our ped. rhem. to make sure what meds she could take. I had to page Dr. W and I felt terrible doing so...but that is what I am paying them all for. It just seems such a shame that I have to bother him. It was just an odd situation since our regular doc was out of town.

One good bit of information I received from Dr. W was that Madeline can take any meds necessary for her common childhood illnesses. Her meds/treatment will not be interfered. Good!

We received good ole' fashioned amoxicillin. She's already taken two pills and guess what...her throat has already improved 50%. Those antibiotics are good. Wish they worked on JDM.

Friday, July 4, 2008

Fireworks, food and fun

Happy 4th of July.

As I sit hear typing, the fireworks are still going strong in our neighborhood. It was a rather calm day for us. We pretty much just did some yard and house work. Then, we had all of my sisters and their families, as well as my parents over. We made hamburgers & hot dogs for all and ate too much. The kids swam and later came the highlight of the evening - Trey's firework show.

Right before the fireworks Madeline disappeared. I went inside to check on her and she was on the couch laying down. She was not feeling well. It seemed all day her throat was pretty good, but once the sun went down...her throat began to hurt her badly. In fact, she decided to spit instead of swallow her saliva. Poor thing. Once everyone left, she felt up to riding behind the four-wheeler on a trailer around the neighborhood. We like to ride around and admire all of the fireworks.

I hope Madeline begins to feel better soon. Dr. M told us to expect the virus to last at least three days. Oh - I forgot - Madeline grew another inch (now 58" tall) and weighed 73 lbs. (she has lost 1 lb.) She never has been a big eater. She's long and lanky like her dad - which is a great thing.

Another Fourth of July has come and gone, but it was a good one.

Thursday, July 3, 2008

Sick again!

And we have another virus...

Just two weeks ago we were at the doctor's office for a sore throat and today Madeline called me at work and said her throat is hurting worse. It even hurt her when she moved her tongue. We went to the doctor and Dr. M said her throat was "angry". I just love how he words things; I find it entertaining. He decided we needed to swab for strep...but it was negative, thank goodness.

So...those bumps around the nose ridge I've been mentioning daily....part of the viral infection. I was right. Gosh, I'm going to earn my medical degree through this process. HA!

She didn't feel well enough to go to dance tonight. We'll just take it easy for the Fourth weekend - which is fine by me.

Wednesday, July 2, 2008

July 2

Good day today. Madeline hung out at home w/ her brother Trey and Aunt Ashlee. Her bumpy rash is to prevalent. The rest of her (elbows, knees, hands) looks pretty darn good. We start All-stars next week which means out in the heat and sun. We have to travel to Natchitoches. Most of the games are in the evening. I just hope the heat does not get to her.

She mentioned today that last night she had a sharp pain in her back. She explained it like a shock in her back, but it did not stay hurting. Hmmm????

Tuesday, July 1, 2008

Blood work results

I called to get Madeline's blood work results and all were good. She was within normal range, so no liver damage - which is a good thing. Her rash has increased again specifically the rash around her nose ridge and chin. I still think this looks more like a viral rash rather than the JDM rash.

She had pointe today. I did not ask her about her muscle pain, I'm going to let her tell me. No comments from her today.

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.