Happy Holidays!

It's hard to believe that the holidays are in full swing! As always, time is flying by!

Katelyn is excited to be trying out for Tap/Ballet 3 tomorow! It's hard to believe that she is in her 5th year at Premiere! Keep your fingers crossed! If she is accepted into this class, she will be in the same recital as Carly! This means one less day at Boyertown High School this summer! YAY!

Carly is also enjoying Dance and Kindergarden! It sounds like she is the social butterfly in the class. My big achievement is making it to the 1/2 way point in school! Woo Hoo!

Tomorrow will be a big day; we are being interviewed by the New York Times at Premiere Dance Studio. They had contacted me after reading the information on our PSKidsConnect Blog and talking to the National Psoriasis Foundation!

The girls are definately an inspiration to me. They have been through a lot this last year and never complained. OK, they do complain when they see the shots coming ... but we try not to think about that :-)

I really think this is another example of our experiances make us stronger. I hope we can share our story and help other kids and their families fight this disease!

Newest Member of the Family

Hi Everyone!

We are busy as usual! Last week we took the girls to the pumpkin patch. They are so excited for Halloween!

Right now Katelyn is fighting a sinus and ear infection. This is the 3rd in two months. The Dr's are waiting for some tests to come back. We will go on Monday evening to get the results. I'm figuring between her allergies and her MTX imune supression, this was bound to happen.

Katelyn has been great though! I wouldn't have known she actually had this infection, had I not called because of her chronically runny nose. She hasn't complained one bit.

Anyway .... we got a new Puppy! I have had my eye on him for months. He's a 5 month old Miniature Schnauzer puppy. He's just the sweetest thing. The girls are so happy, it may be one of the best things I could have done for them. Katelyn jumps out of bed every morning (ok almost every morning) ready to walk "Scruffy".

I hope everyone is doing well! We had to share our newest member of our family!

Hi Everyone!
Between school and Dance, we have little down time. Katelyn does Ballet two days a week, she really loves lyrical ballet. That's interesting to see for a girl who's so full of energy! She just joined a Detective Club at school (That should make daddy proud!) and she started swimming with her 3rd grade class. Ooh, did I mention she has Brownies once a week too! :-)

Carly does tap/ballet 1 once a week, along with Daisy Girl Scouts. She loves kindergarten and all her new friends.

We traveled to CHOP this week (Children's Hospital of Philadelphia) for Katelyn. She is in a ADD study and had a check up. She is doing really well and it shows in her school work. Tuesday we head back to check up on our Psoriasis. They look great and have continued the Methotrexate injections. Tuesday I think we will have blood work and start lowering the dose to back them off the MTX. WISH US LUCK!

A fresh start

I was a little hurt in my last post, I have since seen the light! :-)

I really loved my job and without warning it was gone. I always knew that was possible. I just hope that our organization continues to grow. We were on the verge of so many great things that would have been amazing for the kids!

This is a fresh start for me. I met some wonderful people and really value the experience and opportunities I have been given. I have since put more focus on my school work and my future.

I hope to open my own business by the end of the year. It really is true that when a door closes a window opens ... there are good things coming!

'Tis better to suffer wrong than do it ~ Thomas Fuller 1732

Today is day one of life as a stay at home mom ... again! My position was terminated yesterday. It was quite a surprise and honestly I am heartbroken. Working in the non-profit world is emotional work for many. For me I put my heart into it and my belief in the organizations potential consumed me.

My mind knows it is for the best. As work demanded more and more, my family was seeing me less and less. So what will I do with that day off I always wanted ...

Psoriasis

This blog is a product of ta recent trip to Florida with the girls. We attended the Psoriasis foundation national conference where we met other children and families dealing with Psoriasis.

Eliza created PS Kids Connect to keep everyone connected after this event. I hope that what we share here will support others dealing with the physical and emotional effects of the disease.

The girls were 7 and 5 when Psoriasis entered our lives. I'm not sure exactly where it all began? I think it was a small red bug bite (or so I thought) on Katelyn's leg after summer camp.
Gradually over the next few months she had more "Spots" and her sister developed them as well. Last fall (2007) we were searching for answers. Nothing really made sense. Why did her sister also have the spots? Was it contagious? Why didn't I have any "spots"? We tried creams, Allergists, Dermatologists and of course our pediatrician. We had several different guesses at what was wrong. People stared, we cried and I struggled with so many different feelings. We had parents questioning our attendance at school and spent months on a strict gluten free diet.
In December it was obvious that Carly was now much worse than Katelyn. The lesions covered her entire body, her ears were covered inside and out and her scalp was covered by THICK lesions. The daily bumps and bruises of childhood led to pain and bleeding. Emotionally this was tough for everyone!

We found a great Dermatologist who diagnosed Strep and explained how Psoriasis is most commonly triggered by Strep. (Stress and Injury are two other triggers) He did a biopsy on Carly's spots and prescribed UV treatment three times a week for three months for both of my children. We also began trying tons of different topical medications, nothing was helping. Both girls were treated for strep on several occasions and in February we thought the UV Treatments were helping. Then suddenly they were worse! Strep again!
When everything else failed, we decided to take things to the next level. Our Dr. called some colleagues and we soon received a call from Children's Hospital of Philadelphia (CHOP), who wanted to see both girls right away.

By the time our appointment arrived, Carly was showing signs of Psoratic Arthritis. The appointment was rather intense and we were given some medication options. These were not nice options. They are serious drugs with serious side effects. We needed to be sure. Sent home with the information needed to make an informed decision. We researched the medications and chose to begin Methotrexate (MTX) Injections right away. Of course right away meant a few weeks .. however long it would take for the physicals and blood work to get a baseline for monitoring.

Our first injection for Carly was in the Pediatricians office. I didn't think I would ever be able to do it alone. She was wiped out after that injection. Just not her self and tired. Our next injection was at home and went rather well. I soon learned about the auto injector you can purchase to insert he needle in and that made it so much easier!
Soon, Carly started loosing her hair and Katelyn was becoming very self-conscious and withdrew. We decided to start Katelyn on MTX for concern for her emotional health and a fear she woudl worsen. Carly was soon fitted for a wig and before we knew it school was out for the summer.

We are now 4 months into our treatments and the girls are finally clear. Since the injections began we have seen few side effects and no complaints of sore joints.
There are so many details I can share about this journey. The thing to remember is that everyone needs to make the decision that is right for them. Finding the right Dr. and facility to treat your child is one of the most important thing you can do. And,as always, rust yourself to do what is right for your child!