The Websters

Grace has been doing much better since she’s been back on her anti-seizure medication.  The episodes/explosions of anger are very seldom and it’s making school and home much more enjoyable for her.   We do continue to see what seems to be involuntary actions/movements and are not sure what is causing them, but feel they could be related to the potential seizure activity.

We were lucky to get video EEG scheduled fairly quickly with Grace’s neurologist and will be heading to Sacramento tomorrow afternoon.

Our appointment is on Wednesday morning and will take 1-2hrs to get Grace all hooked up with the EEG.  The good news is she won’t be admitted to the hospital.  The neurologist has order an ambulatory video EEG which is completely portable.  Grace will be hooked up to the EEG and have a little backpack to carry around and Perry and I will have a separate bag which holds the video camera.  Needless to say we’re happy to know we won’t be spending the 3 days in a hospital room and instead get to spend it with Grace’s Aunt Renee.

Although the doctor has order 3 days, we’re not sure Grace will tolerate being hooked up that long and we are simply hoping she’ll keep it on long enough for good data to be gathered.

And for those of you that miss our daily updates on sodium, you’ll be happy to know were including a special section of this post just for old times sake.  This past Wednesday Grace came down with the first of the school flus that was going around and as always we’re always worried when this happens because keeping an accurate record of her fluid ins and outs is critical for ensuring her sodium levels stay in range.  Unfortunately, this past week something went out of whack.  She never had dumping sessions on Wednesday, Thursday or Friday and when we weighed her Friday night we found that she had gained 4lbs even though her in/out ratio seemed to be okay.  We called the endocrinologist and he wanted us to get her levels check as soon as possible.  We called the on-call pediatrician and he said we’d need to be admitted to the hospital as it had the only lab that could process the blood work STAT.  So Friday night we headed to the hospital and Grace had blood drawn.  I guess the good news is her number was 145 and for those of you that remember our weeks and months of sodium level posts you might remember the normal range is 135 - 145.  That means Grace was actually perfectly in range and once AGAIN the sodium levels baffle us and her doctors.  When we talked to the endocrinologist later that night he said, what so many have told us before, this number doesn’t make sense considering all the other information (fluids in, out, weight gain).  He stressed that unless she started to dump fluids by Sunday he wanted us to drive to Sacramento and have her admitted to the hospital so he could monitor her.  I’m happy to say by Saturday night she started to dump and has been back to normal dosages of DDAVP over the past couple of days.  As always, once we think we’ve figured out this DI issue it smacks us in the face just to let us know who is in control.

Thanks everyone for all the supportive comments and emails you’ve been sending!

Wings of Angels Bowl-A-Thon Update

On April 4th we participated in the Wings of Angels Bowl-A-Thon.  This was our third year in taking part in this fantastic fundraiser and we’re happy to report our Webster Team raised over $2000 this year.  Perry’s mom ended up winning the most money raised for an individual and our team won 1st place for most money raised for as a team.   THANK YOU so much to all of you that made donations this year. 

Overall the event raised over $16,000 which is truly amazing considering the financial circumstances so many folks are in right now.

Thank you for your continued support!!!

I contacted Donna Araiza recently regarding the upcoming Wings Of Angels Bowl-a-Thon and asked if there were any specific children that this year’s event was going to be focusing on helping.  As many of you may know they help so many families in the area, but with each event they try to raise funds to help those that are going through current treatment and really could use the support of family, friends and the community.

This year’s Bowl-a-Thon will be for two little girls suffering from cancer and undergoing current treatment.

Here’s the background information Donna provided:

“Right now our plans are to help a four year old little girl diagnosed with leukemia.  She’s been going through treatment about 8-10 months but really suffered a set back and spent 40 days in the hospital from just before Thanksgiving to Christmas Eve.  Her dad is self employed and mom is working as much as she can. 

The other (and I haven’t asked them yet) is a beautiful nine year old little girl who was one of our kids for
two years, five years ago.  She relapsed this month and has started another round of chemo.  They are at our spaghetti feed every year, her dad is a fireman for the city of Redding.  They are a private family and are currently in the hospital.  This one breaks my heart!”

We really want to help as much as we can and need your help in raising money.  We want to thank all of you that have already sent donations.  

The Bowl-a-Thon is April 4th and we are asking again for our friends and family to help us raise donations for the event.  Last year our team was second in the total amount of funds raised. Hopefully this year you will be able to help us be in the running again. Please remember this organization is a non-profit and therefore donations are tax deductible.  We realize times are tough financially for everyone right now, but we’re hoping that you can give a little even if it’s only $5 or $10. 

Here are the details to donate:

1.  All donations are tax deductible

2.  Two ways to donate (make sure to include ‘Team Webster’ in your donations):

- Make Check Payable to ‘Wings of Angels’ and note ‘For Team Webster’ and mail to

The Websters, 18962 River Ranch Rd. Anderson, CA 96007

- Go to Online Donation (click here) to make a donation via Paypal. Make sure to enter ‘For Team Webster’.

Thanks so much for all your prayers for Grace and support you give to us!