Happy 10th Birthday Jenelle!

Jenelle, you are an amazing child and we are so very proud of you. You've overcome the odds, and done what they said you couldn't. You are such an important part of our family, and we love you very much. Happy Birthday, and thank you for making our little family so very special!

Please say prayers for a very special young woman.

Last night while relaxing on the couch and scanning through stuff on my iphone, I ran across this post/picture from a very special young lady in our extended family.  Natasha, "Tashi" is the niece of Brett's cousin Shelly, and Tashi has been fighting Hodgkins Lymphoma for many, many years now... since before I had cancer in 2008.  We've met a couple of times at family gatherings, and have kept in touch via social media.  She is an amazing, beautiful, vibrant young woman who always seems to remain so very positive and such a vigilant cancer fighter. 

Tashi is in the midst of undergoing a stem cell/bone marrow transplant that could save her life.  However, that fight is not without its risks.  Last night, she posted an update that she has been fighting a fever of well over 103 and an ensuing rash for the last 5 days.  This resonated with me as I remembered my own battle with fever and rash that nearly took my own life in June 2009.

My mantra during cancer was KCA - Kick Cancer's Ass.  In June of 2009 we added KRA to that mantra, "Kick the rash's ass" or "Keep the Rash Away!  As I look back at that post, and the photo .... it's just a horror I would not wish on any human being.  Ever.  I'm thankful that because of my state of mind during that time, I still do not remember much of the experience.  Recently, more than three years later, Brett is beginning to share with me some of the horrific things that happened, and just how close I came to dying.  I can only imagine what Tashi is going through, and that is very unsettling to say the least.

Please take a few minutes today.  Think of Tashi.  Say a prayer for Tashi.  Pray that her white blood cell counts start to rise.  Pray that she can beat this!  KCA.  KRA.  We love you Tashi!

Annual IEP means changes for Jenelle

Jenelle's annual IEP started Thursday, September 13 where we met with her IEP team to review all of her recent medical set backs (new seizure meds, constipation, and the smaller left side of her body, etc.)  After updating the team on her medical issues and our concerns with her regression, we adjourned to meet in two weeks to discuss goals.  The initial meeting went well, and Jenelle's one on one YMCA aide was there to giver her observation and feedback and it helped.  I was surprised that the District actually suggested at the initial meeting that we consider moving Jenelle to a smaller class and possibly add on the assistance of a one on one aide.  Both suggestions were actually something I agreed with, and it looked like we were going in the right direction.

Last Wednesday, I got a call from Jenelle's occupational therapist who was going to be missing Jenelle's IEP.  One of her goals for Jenelle last year was not met; they have worked on trying to get Jenelle to feed herself with a spoon and it was very, very unsuccessful.  We agreed to put the goal as a "collaborative" goal for all of Jenelle's IEP team to work with her on.  Then, the kicker... "Oh, and I will personally see to it that Jenelle makes up the 20+ hours of therapy she missed last year."  Uh, what?  Jenelle missed 20+ hours of Occupational Therapy???  And, this is the FIRST I've heard of it?  I was livid and went to the continued IEP on Thursday with my "law firm" attitude in check.

In the end, Jenelle has really been doing well, but overall unsuccessful in two goals - feeding and potty training.  Thus, here is where the "smaller" class may be of more benefit.  Last year and this year, I've always felt that Jenelle's new class and teacher seemed to be more focused on "academic" skills (i.e. pointing and tracing her name on a smart board, identifying colors and money, etc.)  I've always wondered whether or not it was a big of a big step for her.   There is another class for severe to moderate children at Benson, but it has 5 students in the class instead of 12.  At the end of the IEP, we agreed that once the District hires an additional aide, the smaller class would be a better fit for Jenelle. 

Medically, Jenelle is stable.  The decrease on Onfi has been a good change for Jenelle, except now we are seeing many more absence seizures.  Not enough to cluster, but enough to be disruptive.  I've been waiting to see if it stabilizes and soon will consult with Dr. Shields to determine if this is the best we can do.  Also, a week ago Jenelle started seeing Dr. Gudapati, a child psychiatrist to discuss her behavior issues.  This is the same doctor that has been seeing Jack for ADHD for the last 4 years.  Normally, Brett and JD go to his appointments without me - after school and before practice.  After discussing all of her medical history, Dr. G felt that Jenelle's Risperdone dose was adequate for Jenelle's behavior issues (biting herself and pulling out her hair.)  She added on Clonopin wafers for an "as needed" additional drug for those days her behavior gets a little worse than normal. 

So, that is all for now.  I'll keep you posted.