It’s Friday, Baby!
Life isn’t going to slow down anytime soon. Rather than send Rachel to Ophthalmologist #3, I let her go to the musical that the High School kids are putting on. I just don’t want to put her through anymore tests until we reach someone that can actually perform the ERG.
One of my teeth is infected again and I wound up at the dentist yesterday with ALL 4 of my children in tow. Imagine having a dental examination and xrays while you have a 9, 5, 3 and 2 year with you. Seriously. The day before I had the four of them for cleanings and that was bad enough. I ended up getting a script for antibiotics as we are already working on the treatment plan and will extract the problem teeth next month. All this to say that while I am in the Dentist’s chair, the phone rings and it was Children’s Hospital letting me know that Rachel has just been set-up with an appointment with a Geneticist next Thursday!!!!!!!!! Very excited.
I’m not so excited about the fact that John is having surgery on Thursday and all the stress that comes with tight scheduling. I’m glad that he is having his nose and uvula taken care of but wish that it were on a different day. We will make it work.
This weekend I promised Rachel a Star Wars marathon. She’ll watch 1, 2, 3 on Saturday and 4, 5, 6 on Sunday. I need to figure out what room to have it in because of the light factor and I must come up with some snacks.
These kids are going to bed early tonight because Mommy needs a mental break. Hopefully my husband will come home soon (he is at a service call).
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.
Hi Kat, Glad your finally getting some answers. I can’t even imagine trying to have a dental appt with 4 in tow. But understand the pain with infected teeth, hope your able to fix the rest of the problem without all 4 in tow
Good Luck w/ the surgery for John and the appt for Rachel next week.