“Where there is love there is life.”

So much has happened since I last posted and it has only been 1 month:)  We received notification at the end of July that our landlord was not going to renew our lease so we would have to move by August 31.  We get home from being in Boston for 2 weeks to get through Phase 1 of the IGF-1 clinical trial and BAM, we have to start house hunting for a reasonable rental that allows dogs and was close enough to her school so that we could hopefully keep her in that program.  Elizabeth is set to start school August 18 and moving is a huge transition for anyone, but most especially Elizabeth.  Fortunately, after explaining to her that we are just changing houses and that all her friends and therapists and teachers would still be near by she changed her tune.  She has been a trooper.  Charlie has been off, but I don’t blame him either.  In his short almost 3 years, he has been in 3 homes.  He doesn’t know if he is coming or going.  HaHa just kidding.  We keep reminding him and Elizabeth that we are all together and it is just a different building with all our stuff (which we have a lot of…moving from a 3600 sq ft house to a 2500 sq ft house to now a 1900 sq ft house has been interesting…people are getting some good deals and we are going to get some great tax write offs).  Today, on our 4th day in the new to us house, phone, internet, and cable are now connected…So when you haven’t had tv in 5 days what do you do? Bing watch Disney Jr… No unpacking, no running around, just chilling.  It was nice.

Back to the moving…even though we switched school districts by moving, Elizabeth gets to stay in her program as she was in a county program.  The new school district reviews her program and then says Yes, she can stay in the program or No, we have something comparable.  With school starting on Monday, I was hoping that they would keep her in that classroom.  They approved her to stay where she was so Yeah for small favors.  She starts full day kindergarten in a K-2 classroom with some inclusion.  My biggest focus this year and has been since age 2 is functional communication.  She is achieving so much and understands everything, we just need her to be able to get it out!  Overall, she is doing well.  She is learning how to communicate using pictures and icons.  She knows how to use a adapted computer switch.  She has played on an eye gaze computer.  After going to the Rett conference in June, I know that she will be able to read and write, but just differently.  One step at a time, but this is something we have to start working on.  Age appropriate learning is key.

She has been on IGF-1/Placebo injections since July 23 and she has taken each shot like a champ (shots twice a day and blood glucose testing twice a day when the dosage increases, which is does every 7 days for the first 3 weeks).  She barely flinches and is a super rock star.  It is hard to change the world, but when we see an opportunity to do it, we jump on it.  One day, one shot at a time.  Do we have a feeling one way or the other on whether it is IGF-1 or the placebo?  Not really.  I try to stay optimistic, but I also try to stay objective.  Yes, she is a child, my child, so how can one remain objective.  We signed up to participate in a major research study and clinical drug trial and we value honesty, integrity, and accurate data.  We want to help our daughter, but we also want to make sure that we can help others.  If this leads the way to do that then we need to be clear and honest and concise…we need to make sure that objectivity remains in tact.  I am as much as part of this clinical drug trial as she is.  There are interviews and data sheets.  There are rules to follow and symptoms to watch for, but in the end it is about making her life better…even if just a little bit.

She didn’t enjoy the testing, but she enjoyed the quiet time (semi non-scheduled 2 weeks) we had in Boston, but she enjoyed alone time with her Momma.  She also enjoyed time with her Grandparents, her Aunts and Uncles, and cousins, and all her Boston area friends.  Another family who is participating in the IGF-1 clinical trial shared a quote from Mahatma Gandhi and I leave you with his thoughts…

“Be the change that you wish to see in the world.”


“Where there is love there is life.”

    This entry was posted in Elizabeth, Rettology. Bookmark the permalink.

    One Response to “Where there is love there is life.”

    1. C says:

      So glad that it worked out to be in the county program after all! That is one of the perks, you can move. So glad that you made it and hope that you have lots of uneventful time soon :-)

    Leave a Reply

    Your email address will not be published. Required fields are marked *