We need your input!!

I spoke with Nicora Gardner (NPF) the other day about this summer's NPF conference. The conference will be in San Antonio and as a Texas family we are thrilled! I think I will be bringing the whole family this year, even though it is still a good 9 hour drive (Texas is huge!!) I sure hope everyone will try and attend, Jake and I had a fabulous time last year getting to know everyone and having so many experts to address our concerns and questions too. As much fun as last year was, I think this year can be even better!! I would love to hear from you about some of your ideas for the upcoming conference. I know Nicora will be reading your ideas as well so here is your chance to let the NPF know what you and your kids would like to see happen this year.

I personally think it would be a ton of fun to have the kids track have a "summer camp" feel to it. I think Jake benefited the most from the bonds of friendship he experienced with kids like him. I like the idea of crafts, swimming, games, and maybe even a field trip to one of the many kid centered activities in the San Antonio area. Jake's biggest and best memories came from just hanging out with kids who also live with psoriasis.

What do you all think? What did your kids benefit from the most? Please post your ideas for this summer so that the Foundation can start planning things for our kids.

Thanks!!

Morris Girls

Hi Everyone! I wanted to post an update on the girls. They had a wonderful Christmas and have been feeling really good. We are still on the MTX injections. We were at Children's Hospital on Tuesday for a checkup. Katelyn's liver functions were elevated, but they aren't concerned right now. Katelyn is also flaring. She suddenly has lesions on her scalp that are reminiscent of Carly's scalp. So far it's responding to the topicals. Carly is doing great. She is still clear and maintaining the same dosage on her injection.

So ... I recently met with a photographer for the New York Times and did an interview with the girls about psoriasis. It was published online tonight and I'm mortified! There's something about seeing it that really hits home and brings back all those feelings from when we were first diagnosed.

Check out the link : http://www.nytimes.com/interactive/2009/01/15/health/healthguide/TE_PSORIASIS.html

I hope it is ok, I'm really not sure what to think?!

Jake update

Jacob went to Dallas to see his doctor last week and we were told he needed to increase his MTX to four pills a week. If we do not see an improvement in the next 3-4 weeks the doctor would like us to start Jake on cyclosporine a "rescue" drug to help him with his most recent flair up. The doctor's office is currently working on with our insurance to see if we can switch Jake to Enbrel. I think this will be a great switch for Jake if we can get approval.

On a lighter note are any of you planning on going to Washington D.C. for Capitol Hill day? I have gone back and forth on this one but I know it would be wonderful experience if we went. I think if you all are going to be there with your kids we would need to make the effort to go. I think Jake can use a little friendship and understanding right about now. It has been a rough year at school. The kids have been a little brutal and he is such a sensitive boy it really gets to him.

We hope you all are enjoying this holiday time with your families and loved ones.

All our love and hope for a fabulous 2009,

The Clement Family

How is everyone?

I know it is a busy time of year but I wanted to check in and see how everyone is doing? We are doing great! We've had a few checkups lately. We are still on our MTX injections, weekly. It will probably be the new year before they start backing the girls off the medication. Unfortunately they still have some lesions that haven't cleared.

I hope everyone had a great Thanksgiving .... Happy Holidays to all!

Chris

New Member of the Morris Family

Hi Everyone! I hope you are doing well.

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!

The Morris Girls

Hi Everyone! I can't seem to get the girls to slow down lately! They are doing well and really miss their PS friends! Between school and Dance, they 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 and 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. 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!

I hope everyone is have a great time at school and doing well with their psoriasis ....

Benjamin's P

Hi all. It's been way to long since I've visited here, so I figured I owed at least a little post. Thanks Liza for steering me!

Benjamin is well into the school year and is having a great year. His goal this year was to have perfect attendance. I thought it quite lofty given his P flare ups, drs appts, etc, but he really wanted to try. Unfortunately, yesterday that plan was derailed! And not from P! Ben has been home for two days now with a fever and vomitting. Nothing seems to want to stay down. We saw his pediatrician yesterday and to my disgust, he basically did nothing. So here we sit in bed, still fighting this bug, but well enough to play xbox!

Benjamin is also busy in soccer this fall. His team hasn't been doing so great, but he is enjoying every minute of it. He actually scored his teams first goal last week and is still in heaven. His older brothers are in fall baseball, so our weekends are filled with sporting events.

Benjamin's P: As many of you know, Benjamin has had pretty severe psoriasis, but never has been on any biologics. He has been lucky enough that his P has only effected him from the neck down. Though most of his skin is currently clear, he does have a few small spots that worry me. Those small spots usually mean more is on the way. Usually the summer clears him up quite a bit and by this time in fall he is covered again. We are very lucky this year that things are still good. I am attributing this to Barney's formula. Ben has been on Barney's since the end of August, and though we've missed a day here and there, I really believe that this is what is keeping him well. We shall see....always the pesimist, I'm just waiting to wake up one morning and see him covered again!

We hope that everyone is enjoy the fall weather (it went from high 80's to 50's overnight here) and having a healthy begining of the new school year. We look forward to hearing from everyone.