We are all back to school doing full-day classes. Rachel has settled into 5th Grade, Julie is loving 2nd grade, London can’t wait to go to Kindergarten everyday and Boston is enjoying going to full-day Montessori. Boston has been acting up A LOT so I am trying to find ways to give him 1:1 time and so far I’ve been taking him on morning bike rides before school. This morning we went to the beach because we had a few minutes to spare and looked for shells.
On my walk home from Julie and London’s bus stop I was lamenting to myself that getting all 4 kids ready for full-day school in the morning (NOW) is easier than it was when it was only Rachel who was going to school. I can only imagine what the neighbors thought while Rachel screamed and cried and yelled and hit us while we got her dressed in the morning and that is pale in comparison to the intense sensory agony she was in while we brushed her hair, her teeth or put socks on her. I am so grateful for medication and how it has given us intermittent good times with her at home and substantial amounts of good time at school, and with Granny or one on one with someone.
Tomorrow we are running our annual jewelry table for Endless Summer (www.endlesssummerhull.com) with a twist because this year we are seeking runners, walkers, volunteers and business sponsors as we are raising money for Juvenile Batten Disease. The race planning is going very well and we are getting a lot of buzz around our town through all 3 schools, loads of residents and our customers. I am very excited about this race, c’mon October 23rd!
We have put Rachel’s name in the hat for the trial and are waiting to hear as to when she can start I have filled out all of the paperwork, caught her up on vaccinations and have gotten permission from Dr Sims (Rachel’s Neuro at Mass General) to be her local doctor.
Things we have planned? Outside of the upcoming road race I have two pretty giant things in store for my kids. A day or so after Christmas we are driving down to florida and renting a house with a pool and will spend our Winter break in the warmth.
Next summer? A few days after school lets out I am taking a complete cross country road trip with my cherubs going from Boston to California and back. We are also planning to drive north for a few days and spend time with James and his family (James is Rachel’s biological father). I know people have asked me why I would bother doing that as James has been out of her life (by his choice) for many years but really this isn’t about me or about him. This is about the kids. I think it will be great for my 4 children to meet their twin sisters. Technically they are only Rachel’s half sisters but my motto has always been “You can’t have enough people love your kid.” (Or in my case, kids). I have a lot of planning to do for that but the details are all on hold until after this road race.
London especially wants to dip his toes in the Pacific ocean, his life’s dream is to live in California and drive a minivan. I figure a good test drive through Cali could help him to see if this is something he wants to aspire to do or not. Yeah, he is barely 6 but he talks about it everyday.
Life is too short to waste it waiting for things to happen so you can move forward. Move forward, move things into place. Make things happen. Your life could be over tomorrow. Live without a lot of regrets. Live enthusiastically. IF we only know, truly, how many people in this world, in America, in your own town, maybe even on your street, who are fighting for their lives… Just thinking about it is very humbling to me.
– With love, Kat.Read More
I feel so cool blogging on a Friday night.
I took Rachel to her monthly girl scout meeting tonight and she had a good time. It was hard to watch her try and weave a bracelet (to raise $$ for Juvenile Diabetes) because she can’t see and has a hard time with mental processing activities that require sight. I promised her that I would finish the bracelet AND she could buy it off of me towards Juv. Diabetes. Such a good kid.
She is on day 3 of the lamictal. She is definitely more alert now that the risperdal is totally out of her system and her appetite is MUCH lower. I wouldn’t say that she is totally under control (behaviorally) but I think even the baby dose of lamictal (25mg for the first two weeks) is helping somewhat. She hasn’t been in school since Monday but I think she will go back next week.
There is a possibility that the Juvenile Batten Disease drug trial – the first one ever – will be starting soon. There has been talk of it as long as I’ve know about Batten Disease so I’m holding onto a shred hope. Hope, even if only a shred, is a good thing.
The drug trial won’t be for a cure, it it to test out the safety of using Cellcept (Mycophenolate) on JNCL kids. Cellcept has shown that it can slow down the effects of the disease on mice that have been genetically altered to have JNCL (Juvenile Batten Disease). (jist of JNCL and cellcept usage in knockout mice)
Featured Picture: That’s me (Kat), Rachel, Julie and Auntie Jacquie. A park ranger took our picture on Peddock’s Island… (wiki on Peddocks)Read More