Hair Success
Many thanks to my friend Mary who organized Rachel’s haircut today via her friend Jess. Rachel loves it and I think she looks awesome!
Less hair + less hair in Rachel’s face = good for me!
Rachel's new haircut
Posting information
In the weeks leading up to her diagnosis, I did a lot of research looking to see how other Batten Disease kids present. What their eye symptoms were, previous testing, bloodwork, etc. One site in particular I found myself going back to a lot even although this family is touched by a different form of Batten Disease. Looking at Nathan’s medical reports was so helpful to me, I have decided to put the same type of information online. In the coming weeks I am going to have a column on the right hand side (you’ll probably have to scroll down to the bottom to get there) but I plan to make the medical stuff available in the interest of helping other parents in my shoes (with a child who has language, memory, visual problems and probably a cognitive decline) try and pinpoint if they should talk to their Dr about being tested for NCL (aka Batten Disease).
I’ll start by sharing the fax report of her diagnosis. Click here for the diagnosis PDF
Rachel was a little irritable today and very excitable. I have finally settled them in for a little while with Ice Age. I am about to start dinner in a few and then head to a nighttime Dentist appointment. Tonight I am meeting Lulu and her friend for a drink after the kids go to bed.
I also wanted to announce that London (who is turning 4 in October) is FINALLY POTTY TRAINED! Now we just have to convince Boston to lose the diapers and I’ll be a happy Momma.
Read MoreLast day
I met with Dr Rappaport today and am very glad that life can relax a bit and get back to normal (which is always a relative term, right?). Until she starts having visible signs of seizures and unless anything else crops up I plan to keep her out of the hospital and Dr offices as much as possible. Tomorrow they have a little bit of summer school in the morning and I am going to do a quick round of miniature golf (she has her heart set on it so we’ll make it as fun as possible) and probably an hour or two at the beach courtesy of Mrs P.
Maybe this is kind of a gift. If I spend as much time with her as possible and fit several years of life into a small amount of time I won’t have many regrets. Maybe I am fooling myself but at this moment in time, I am doing better than most people would (in my unprofessional opinion). I’m sure that will change and change back but I don’t care.
Now I need to figure out the next step as far as getting her into a school for the visually impaired. This is definitely something that will be immensely beneficial to her and hopefully keep her mentally PRESENT for as long as possible. If we didn’t live so far away from Perkins it would be a “no brainer.” I’ve figured out harder problems. I’m sure I’ll sort this one out soon enough.
Read MoreLots of pictures
Julie (5) in the swimming pool at a birthday party
Rachel (9) enjoying the pool at Tony's party
John (too old to admit) at Tony's 4th birthday party
London (nearly 4) with a sandy face
Boston (nearly 3) pointing
Rachel listening to Mary
Boston (nearly 3) pointing at an airplane
Rachel (9) with Trevor
More walking Trevor
Rach is thirsty after walking so much
Julie (5) the Duck Whisperer
Julie (5) with a face you can't say no to
Julie, Rachel, Boston and London
Juliebean, Rachey, Boss man and Jack
This is Rachel, 3 weeks ago at her Granny's house
Sunday morning
Had a pretty good day with the on kids on saturday. I nearly cried once but held it together. Rachel got to spend 3 hours with Mary’s dog today and was in LOVE. I was so impressed how she handled him and loved him. I can see how she will benefit from her own canine companion down the road. I’m able to better understand her now that I understand the WHY now. She is definitely responding positively to my new lease on our relationship.
Today we have a birthday party to go to for one of the little boys in daycare with London and Boston. I am going to walmart to stock up on the things we eat a lot (and buy a present for the birthday party). I’ve been a little behind keeping things stocked but, again, I am thinking/hoping things will slow down.
Tomorrow I am meeting with Developmental Medicine to talk medication.
Lots of pictures tonight. Lots. I also wanted to share that:
Rachel’s favorite songs are “Sun Goes Down” by Kenny Chesney and “Honkytonk Badonkadonk” by Trace Adkins.
Julie’s favorite song is “Fidelity” by Regina Spektor
London and Boston’s favorite song is “Old Mcdaonald had a Farm” LOL
TeamRachel aka mrskatvon is both a website to gain public awareness of Juvenile Batten Disease (which affects my oldest daughter) as well as a journal to remember the events in our lives.
Rachel was diagnosed with Batten Disease in July 2009 and while we knew something was "not right" we had no idea that such a nightmarish disease existed. There are dozens of nasty, orphan disease which affect people both very young and old.
Aside from dealing with the changes of Batten Disease in my daughter, Rachel, I have tasked myself with making life memorable for all of my children to make sure that (at least) 3 of them grow up to be as well adjusted and happy as possible.
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