Madeline's Blog Archive
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Thursday, December 31, 2009
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
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
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
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
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!
Tuesday, November 24, 2009
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
Friday, November 6, 2009
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
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
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
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
To describe the course of patients with juvenile dermatomyositis (JDM) treated effectively without systemic corticosteroids.
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.
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.
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
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
Friday, October 9, 2009
Monday, October 5, 2009
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
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
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
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
Saturday, September 12, 2009
Friday, September 11, 2009
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.
Thursday, September 10, 2009
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
Tuesday, September 1, 2009
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
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
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
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
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
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
- 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.
- 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.
- 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.
- 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.
- 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.
Monday, August 10, 2009
Friday, August 7, 2009
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
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
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
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
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.
Tuesday, July 21, 2009
Sunday, July 19, 2009
I'll post a picture of her on her way tomorrow. She is so excited.
Tuesday, July 14, 2009
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 - 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
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
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
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
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
We are getting ready for vacation...and it can not be soon enough!
Wednesday, June 10, 2009
Wednesday, June 3, 2009
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
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
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
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
- 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
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
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
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
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
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
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
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
Tuesday, April 28, 2009
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
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
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
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
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
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
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
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
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.