Tuesday, February 17, 2009

Another long day -

Another long day...Roger and I were up early to appear on the American Family Radio show (did you hear it?). It was a great chance to share our story again with the world and talk about how much we appreciate the thoughts, prayers, and support we have received in the last (GULP!) four weeks. Yes, indeed, it has been FOUR weeks since all this happened. Hard to believe. It seems longer, mainly because each day and week seems to bring a new adventure with logistics and knowledge.Anyway, Charlotte slept well last night and we had to get her up for a busy day. We got her AFO brace fitted for her leg (PURPLE!) and she got a new pair of orthopedic shoes too (pink and purple!). Then it was off to Children's Hospital where we got to go through all the intake stuff and then met with Dr. Montaserio (her rehab doc). He was most impressed with her progress, especially when she reached up with her left leg and kicked his hand! Still working hard on walking and release the grasp or using her left hand. It was very interesting that while we have been surrounded by people at MCV who knew all about brain tumors, PNETs, and all the other vocabulary with which we have become familiar in the last few weeks, few of the folks we talked to at Children's Hospital knew about her type of tumor. It made me realize how rare this thing is that happened to her...even at another hospital it is considered relatively "rare". When you are involved in something so much, you tend to forget that it's not a normal part of everyday life for other people. I constantly have to remind myself that it's not "normal" for your child to have a brain tumor...or even to be this sick for that matter. It starts to seem normal to me after a while. Probably weird but that's where I am...Anyway, we actually didn't have PT/OT or speech today. They had to set up numerous appointments so I know I am getting out the calendar and scheduling our world around CJ. Have to make sure we don't double book! Since they are having to bump us up around waiting lists (due to the urgency of her case), we actually have to go to some of the satellite Children's Hospital offices (West End and Midlothian) for some of our appointments. Not as convenient but that's ok. She will have PT/OT tomorrow, speech Thursday afternoon and they are also scheduling a NeuroPsych exam soon. This will be to get a "baseline" for her neurologic functioning and will probably take a few days to complete due to her age and the breadth of the exam.After getting home, she had a wonderful visit with Larson and Alexander and then mom tried to take a nap. Much thanks to Grandpa and Juanita for domestic chores and a yummy dinner. Dad came home and got her to sleep after much fussing. We just had to wake her up or would face another sleepless night. She's currently eating her dinner in her new cozy footie pajamas and listening to Dora stories. Does life get much better?At the risk of waxing on (and on), here is my moment of enlightenment for the week: I never wanted to be a stay-at-home mom. EVER. I always knew that I would need to go back to work after having my kids for many reasons. While the primary reason was probably income, the secondary reason was my sanity. I just would probably never be a great SAHM and needed that balance of home and work in my life. After I went back to work from my maternity leave, I never regretted it. Those first four months home with Charlotte were great but I definitely needed to go back to work and I never (ok rarely) felt guilty or wished I stayed at home.Fast forward to our new situation and oh how things change. Over the past week, I have wanted nothing more than to stay home and take care of my little Charlotte. I want to be the one who is with her (even when she drives me nuts), be there for all her doctor appointments, and be there to watch over her...Because of that, other things in my life are definitely slacking. Romp n' Roll has (unfortunately) taken a small back seat in my life and I have trouble motivating myself to get work done. Not to mention the time and fatigue factors...even if I did have the motivation, I usually have neither the hours in the day nor the energy.Anyway, I will end my mini-novel here (mainly because I must get back to my daughter) but if I seem distracted, antsy, grumpy, or in any other way not myself (yes, Roger, grump is NOT my normal self...) I am sure you understand why...Must run...Rachel

A quick addendum to the evening:
Charlotte was rather grumpy for a while (channeling her mom's energy???) but looking at recent get-well card arrivals and reading for a while really made her day. Her eyes completely lit up when she saw the homemade pictures from Kyle and Katie (Thanks!) and the homemade painted heart from Ketty's friend from church. Thanks, All! Then we read her High Five magazine (I think each story 3 times!). When she ran out of options, she said, "I want to pick some new books myself". I got her off the couch and she walked with me barely holding her hands over to her bookcase. She carefully picked out two selections and returned to the couch. We did this TWICE and each time her walking was more and more independent. By the end, she was walking with very little support and doing a GREAT job holding her hands out to grab a chair or the edge of the couch if needed. Yay!
BTW, forgot to mention in a previous post that the doctor has told us that we don't need the wheelchair. We can get by with our jogging stroller (and it will probably actually be more supportive). Because of this, I don't think we will need the wheelchair ramp after all (thanks to those who had offered).
Must rest and enjoy some time with my hubby...once CJ finally falls asleep!!

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