Saturday, October 30, 2010

Ready for Halloween

The twins are in their spider jammies and ready for Halloween. Tomorrow we will have a small party with family followed by trick or treating. I have all sorts of fun food concoctions for the kids and some yummy treats for the adults planned. We are all anticipating a festive day!!
A quick update; I did hear from the Ketogenic dietician at Strong hospital and I am now waiting to schedule a date for our week long hospital stay. The diet is closely monitored by a trained dietician and neurologist and could decrease seizures. If the diet works well for William we plan to wean him off one of his three seizure medications. Hopefully this will increase his alert time as well as help him to sleep better at night. If you would like to know more about this diet; here is a link....
I have my reservations as well as hopes. This diet is very intense; every calorie and gram has to be measured out and only certain foods can be consumed. Absolutely no carbs and mostly fats in creams and butter. Honestly the diet sounds outright disgusting. The fact that I am willing to subject my son to it speaks of my desperation to stop his daily seizing.
On a very personal note; the doctor recently confirmed that I have a lump in my breast. So I am starting my week with a mammogram at a local breast clinic. The doctor thinks it could be a simple cyst but considering that I have had it for awhile she wants to check it out. Of course I am not thrilled to be getting a mammo at 31 but better to be safe than sorry!!! Hopefully it is nothing but the whole thought of "worst care scenero" is topping off my cup of worries to overflowing.
Well, I always think better to be proactive. So November may be a busy month here in the Beyers house but I am hopeful that good things will come from being proactive. Positive changes!! In the meantime I am trying to push worries aside and celebrate a fun Holiday with my beautiful family! Happy Halloween!!!

Monday, October 25, 2010

Catch a breath...

Late Summer and early Fall have passed in a whirlwind. I can't seem to catch my breath.... and I am told by friends with older children that it only gets busier; more commitments and running around. Not to mention that at some point in the near future this mommy has to go back to work. Where, when, what; all those W's I haven't figured out yet but living off of one income these days is nearly impossible!!! So even when I am not physically running around my mind seems to be spinning. You know those nights that you head to bed with good intentions of sleeping and only toss and turn; stare at the ceiling.... stare at your husband... just stare while your mind won't shut off....
I can't even remember if I was like this before kids. The BEFORE KIDS seems blurry. I suppose I have always been restless. Yes, it has always been hard to quiet my mind and relax; whether it's worry or daydreaming.

These days I have plenty to worry about and I do try to find some things to anticipate and look forward to. Of course I look forward to each and every day with my kids. Even if the day before was a hair-raiser (like today)... with myself feeling a little under the weather (again), a punchy and very defiant typical three year old, and a half asleep when-not- seizing William love.... anyone's patience could be worn thin. I am waiting on Strong hospital to mail a stack of genetic testing forms to review before more blood draws for Will man. We have a new list of x-linked syndromes to test for; which of course may eventually lead to testing my x chromosomes. I am also waiting for a dietician at Strong to call about starting the Ketogenic diet (for seizures). William's seizures have been getting considerably worse and he is on the max dosages for all three medicines. So I am starting to look at other alternatives before adding more meds to the mix. I say "waiting" but I have actually left several messages for this dietician. She must not know what it's like to watch your child seize multiple times a day and to feel the near constant sense of urgency and helplessness that I do.

As a mom of twins; I must equally represent both ;-) Ella is doing well in her pre-school class. Initially she had a difficult time leaving me but has now made a few friends and waves goodbye like a pro. Some of you might know that I had her evaluated for speech a year or so ago. My concern was always articulation which is addressed in preschool rather than EI in some cases. I still feel pretty strongly that she could benefit from speech and think she may be getting frustrated due to her teachers not being able to understand her. Other than that she is happy, full of imagination, wonder and always on the move :-) She has struggled a bit adjusting to all of William's new therapists. Every afternoon he has one or more therapies and the providers are all new to us. So far though William seems to like and do well with all of them.

As for myself and catching a breath; I am very fortunate to have my family. My mom loves to watch the twins and this past weekend I got a much needed break. A delicious dinner out and a quiet night of sleep can make a world of difference. Especially when followed by brunch and lots of coffee at my favorite diner the New Yorker. So I would like to end this blog post on a positive note. Cheers to super Grandma's that help in times of need; give us some down time to catch our breath and regroup; to see that we are truly blessed with a beautiful family.