Wishing for happier times

It's the beginning of another school year and while all the other kids are excited to be back in school with their friends, Jenna is frustrated with the fact that she will not be able to go to school full days again this year.  This just breaks my heart as a Mom.  I wish I could take her pain away, I wish I could make her smile.  She has missed so much not being able to go to school.  Although she has been able to keep her GPA at a 4.0, she has missed out on making new friends, getting involved with clubs and most of all the things that 13 year old girls do.  She will turn 13 in two weeks and she has been so excited planning her "big" party.  I wish I could be that Mom that is running back and fourth to Cheerleading practice, back and fourth to Dance class, instead I run back and fouth to the Doctors office and hospital for IV treatment.  I don't want to sound selfish when I say that, I just wanted so much more for my kids.  Don't get me wrong I have great kids and that is one thing that I would NEVER change, I just wish I could change the medical issues.  Jordan has had to work so much harder than her peers to get where she is at.  I am so very proud of the beautiful young women that she is turning into.  When we see our child hurting we try to do everything in our power to fix whatever it is that is broken.  How do you fix sickness and illness?  How do I find the answers?  With Jenna's disease being so rare it is difficult enough to find infomation on her illness, let alone how to explain it to others.  At times I feel so alone in this battle.  The panniculitis issue seems to be getting worse no matter what we do.  The Doctor pulls back on the treatment and her labs go up, she develops more "spots", he gives her more meds and she is sick all day long.  When is it enough?  I find myself asking..."Why me? Why Jenna?"  I wish someone could answer that question for me.  I know that there is so much sadness in this world and that we need to find the good in everything we do, but at times that is difficult for me to do.  As for the schooling issue for Jenna, she will have the same homebound teacher that she had last year so that is going to make things so much better for her both educationally and emotionally.  My Wish for her would be that she would feel better and be able to keep up with her peers.  She has lost her childhood to dermatomyositis.  It has been a long 7 years since her diagnosis.  She was so little and sheltered from the world.  Things were simple and fun then.  It has been one heck of a roller coaster ride.  I have spent countless nights looking for any new information that I can find.  From what our Doctor has told us, there are not even 30 cases of panniculitis in the country.  That doesn't leave us much to go on.  Believe me whatever info is out there I have found it!  We will continue her weekly infusions and go every few weeks for IVIG.  Her oral medications have changed a bit, but for the most part have been the same since the panniculitis dx in January 2010.  I pray that we will find something that will work and get this issue under control.  I know that I don't write much but I will try to update a little more than I have been.  I appreciate all of the support that you all continue to give to me and my family.  Without the love and support it would be so much harder to deal with.  Thanks I will update soon.

1st day of Summer brings New Hope

It has been a while since my last check-in.  We have very busy running to the hospital every week for Jenna's treatments.  Things are getting a bit better, I say that with such hesitation as I hold my breath LOL.  Jenna seems to responding well to the new protocol and we are happy that things have been "good" for the past few months.  Don't get me wrong we are not out of the woods yet as the fire is at a slow burn.  Her labs are still elevated and are being watched.  Since the Doctor added the Cyclosporine her panniculities spots have looked a bit better.  As I watch her get older I can't help but be so angry that this disease has taken her childhood from her.  She has been sick for as long as she can remember.   She is not the same "little girl" that was diagnosed all those years ago.  She is still getting the IV Solumedrol & IVIG but is on no oral steroids!!!  She was able to attend Camp Boggy Creek again this summer so that has been a total boost emotionally for her.  After being on Home bound school for her 6th grade year it will be a week that is so needed for her mentally.  I miss her every minute that she is gone, but I know that she is in the greatest of care at camp.  I have not made a decision about seeing another Doctor yet, I am going to wait until we see where she is at the beginning of July.  It is just so much to "start over" with a new Doc and having to go through all the info from the past 7 years...it is just too much.  I have tried very hard to have a positive attitude through this long journey, but there have been those days that I felt like giving up.  This has been a crazy roller coaster ride and when I look in my daughters eyes it is because of her that I keep going with purpose through all the dark days.  I pray that there will someday be a cure for JM so that no other child has to suffer.  I have grown so much not only as a Mother, but as a human being.  I hope that I can be half the person that both of my girls are.  I think that when a child has an illness it changes them some how.  It makes them softer, it makes them notice things that so many of us take for granted.  It makes them process things differently.  They are gentle souls that have touched me in a way that no words can really describe.  My wish for this summer is that we can continue to show some improvement  and that my Jenna will be healthy enough to be back in school full-time come Aug.  I will keep you all posted on her progress and how things are. 

New Year-New Treatment

Hello Again, I  know that it has been a while since I last posted, but things have been a bit crazy in my world.  Jenna's panniculitis issue has not been resolved.  She has been having a difficult time with this issue.  I can't believe that it was a year ago that all of this started.  She now has about 16 panniculitis spots, and lipodystrophy has started in some of the larger ones.  It is so sad to see her in pain.  I would do anything to take it away from her.  We have started a more aggressive treatment with the hopes that it will help and solve this problem.  She is now taking cyclosporine 2 times a day and they have increased her IV solumedrol to every week.  She is still getting the IVIG every three weeks. 
When I sit and think about how long she has been dealing with all of  these issues it breaks my heart...she has spent her childhood in and out of the hospital for the past 6 years.  I sometimes wonder what my life would be like without this illness?  There are so many things that I wanted to do.  Please don't mistake this as me being selfish because that is the last thing that I am.  I will always put others before me...sick or not!  There are just so many adjustments that have to be made when you have a child that is sick.  I sometimes feel like I am alone with the pain & hurt that I feel, but I know that is not the case because I have so many people that care about me and my family. It's just they really don't know how I hurt or what I feel inside.  I feel dead inside at times and it takes everything that I have to get myself going.  It is because of my kids that I keep going.  I want so much for them in life.  I want them to be happy and healthy and reach for the stars because nothing is impossible.
I am greatful for everything in my life I just want Jenna to be better.  I want her to be able to run and play without pain.  I want her to feel comfortable with herself.  My kids are the best thing in my life!!!  These next 8 weeks are going to be rough for Jenna and I give her so much credit she has been so strong through all of this.  I am so proud of her for the way that she has been dealing with everything  that she has been going through. I really think that she will be better off once the port is put in next week, it is just that I didn't want it to come to this.  I will keep you all posted.  Thank you for all the love and support that you give to me and my family.