Turning Out to be a Busy Week

Roger took Charlotte to the clinic this morning.  In true clinic form, everything was running late.  They had to draw her labs and check her numbers before they could administer the Velcade.  I guess adding to that the "normal" Monday delays and Roger didn't leave the clinic until after noon (it was an 8:45 appointment).  We did a quick changeover at RNR, grabbed some lunch at home, and then zipped off to the WE for OT. 

Charlotte's tremors are continuing and today she had a lot of trouble just walking.  She would start walking, take a few steps, and just stop.  I mentioned to her OT that we hypothesized the valproic acid was worsening the tremors and I said, "You know, she almost reminds me of someone with Parkinsons in terms of her motor planning issues."  Sure enough, when we looked up the side effects of valproic acid, one is Parkinsonian-type motor planning problems.  The clinic drew some additional labs to measure the level of valproic acid in her system and determine whether they need to adjust the dosage.  Between that and the velcade, she is T-I-R-E-D!!  She's kind of a zombie this afternoon although she did make it through OT with a LOT of prompting.

Granny and Gramps head back home to Florida tomorrow.  Thanks again to everyone for recent meals that have been delivered.  We should be good for at least a week or so. 

Not much else to report.  I have a much-needed and long overdue appointment with Dr. Bitsko tomorrow.  Charlotte has a PT appointment in the afternoon (that should be fun...) and we have the regular RNR busy-ness.  Wednesday afternoon we are slated to receive the check from the ReeseStrong Foundation for the race.  Friday is MRI day.  Dun-Dun--DUN!!!

That is all. 
Rachel

Good News and Other News...

The good news is my mom seems to be much better.  Thanks for all the well-wishes and notes/messages of concern.  The heart cath revealed no blockages but some spasming in her hear muscle.  They kept her overnight and doc cleared her for release today (she's on her way home now).  She will follow up with a specialist in Floriday (probably a cardiopulmonologist) and hopefully will be able to strategize ways to prevent these asthma attacks in the future.  I guess Virginia is just not a great state for those with both asthma AND allergies.  Many of you already know that.

Other good news: Charlotte was evaluated by Hanover County Preschool program on Friday.  They did the developmental eval.  A few more assessments still to be done before her official eligibility but I think they are seeing where her weaknesses and needs lie.  There's a very good chance that she will qualify for some services through the school district.  This will certainly help with the therapy as well as giving us some extra support to help us meet her needs and prepare her for Kindergarten. 

In other news, the parties at RNR were great yesterday and Charlotte even made an appearance as a beautiful fairy (pics posted soon).  I ran myself on 3 hours of sleep, caffeine, sugar, and adrenaline and CRASHED last night.  I think I was in bed before Charlotte.  She was up a few times in the night and decided at 4 AM that she was HUNGRY so I brought her cheerios and a little applesauce.  She did go back to sleep for a little while.  I've been nursing a headache all morning and still feel exhausted.  I almost feel like I'm hungover...but without the benefit of alcohol the night before.  Ha ha.  Charlotte's been eating like a champ all morning and even ate some peas.  YES!  She actually ate a green vegetable!

This weather is not helping my mood or energy level today.

To make matters worse, my SCANXIETY isn't getting any better.  The looming date is enough but Charlotte's tremors seem to be worse (don't know if that is medication related) and today she began to complain of her head hurting.  In the back.  That's the first time she's complained of that in a long time.  I'm trying not to worry and know that we will have some answers by the end of the week but, well, it's a challenge.

I've got to take care of the little princess and get myself ready for a 4 PM party at RNR (happy b-day Sebastian!!)

More soon...
Rachel

Granny's episode, Kolbey's Birthday

Charlotte has been doing very well. Still eating like a horse and increasing her energy slowly but surely. The tremors continue but that's to be expected.The problem child now is Rachel's Mother. She had what everyone thought was an asthma attack at about 9pm last night and got to ride in an ambulance to the hospital. The real fun began when none of her treatments were effective including inhalers, prednesone, albuterol (all spellings are subject to change), deep massage, boots to the head, nothing worked. Then when the ambulance arrived, they put the mask on her and carted her out the door.I guess they tried to intebate her (put a breathing tube down her throat) in the ambulance before they left but were unsuccessful.When they got to the hospital, they did labs and an EKG and saw something they didn't like so they decided to keep her overnight (much to Granny's chagrin). They ran more tests and decided to do a heart catheterization but found no blockages. Rachel said Granny was having a spasm that should resolve over time but they were going to keep her one more night just in case.
On top of that, yesterday was Uncle Kolbey’s Birthday. At least it was memorable.
Rachel stayed at the hospital for most of the night and I taught her Saturday morning classes (great classes by the way!). We’re still on for all the Halloween festivities this afternoon but I don’t think we’ll make it to the R-MC Field Hockey playoff game at 1pm. Sorry ladies.
More updates as they come.
Rog