The Websters

Has it really been over a month since we’ve posted?  Unbelievable how time flies!  We have 2 things for you.  The first is an update on our sweet Grace and the second is a request for all of you to help Perry and I raise money for Wings of Angels (see the end of this post to see how you can help us help).

We were in Sacramento January 23rd - 26th to meet with two of Grace’s specialists (endocrinologist & neurologist) and to have a new Physical Therapy assessment completed.

The appointment with the endocrinologist went well and he was amazing at how tall Grace has gotten since our visit last August/September.  She grew an inch and a half!  He’s made some modifications to her DDAVP dosages as we had a hiccup in our ‘normalcy’ when Grace’s sodium level jumped to 165.  This is after months of everything moving along so smoothly, but hey, it’s DI, so we’ve learned by past experience, that just when you think you have it figured it out that’s when it either drops or spikes.  Anyways, the adjustments to the morning dose seems to have leveled things out again and we’ve reached ‘normalcy’ again.  Next steps are for a full blood work up to check her hormone levels and thyroid to make sure her current doses of meds is still appropriate.

The appointment with the neurologist went great.  We received the okay to begin weaning her off the last of the anti-seizure medications.  She’s been off Tegretol since Thanksgiving and we’ve really noticed an increase in energy, balance and in her expressive speech.  Needless to say were are excited to begin the weaning of Kepra and how getting her off of it will improve other areas of her development.  We are doing this weaning very slowly as we don’t want to take any chances that residual seizure activity takes place.  We’ll keep you posted on this as we progress.

We’re working with the school on providing services to Grace to make her successful in the school environment.  She’s currently receiving speech, OT, adaptive PE from the school.  There is a dispute regarding physical therapy needs and as result we had an outside group assess Grace.  Let’s just say the results from the school are completely out of sync with the assessment we had done privately.  So, we’ll be meeting with the school again to figure out next steps.  Wish us luck!

Now here’s where we are asking all of you that have been so supportive to us during the past 4yrs to help us help Wings of Angels.  For those of you not familiar with them all I can say is they have gone beyond the call of duty to help our family and other families with children suffering from life threatening illnesses.  Last year was our first chance to start giving back to them and to pass on the support to other families.  Last year our team, which includes Perry’s parents, succeeding in raising nearly $4,000.  Our team was 2nd in amount of funds raised.  We’d like to match or surpass that for this years event on April 4th, 2009.  We need you to make this happen!!

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’.

We realize this is a tough time of year for everyone, but please realize there are several children in our area that are undergoing painful medical treatments and the support they get from Wings of Angels helps them make these treatments possible.

Last but not least here are some recent pictures of the Webster crew:

Thanks again for everyday of prayers and support!