Saturday, November 7, 2009

VNS update, 9th birthday, and therapy update

October 2009

So it has officially been 6 months since the implant of the VNS.  The neuroloy explained that it takes the body about 6 months to adjust to the device.  We have not seen any significant changes in her seizures yet -but we are still hopeful.
We took a trip to Chicago in September.  Mackenzie did very well on the airplane ride.

For Halloween this year my angel Keni dressed as an angel. 


Saturday, August 8, 2009

Summertime fun

13 June 2009

School was out the last day of May and we are enjoying summer break.
Mackenzie has become more and more frustrated with her lack of communication and she cries and fusses A LOT now days.

We haven't seen much change in her seizures yet but we are still hopeful.

01 August 2009

Having a good summer.  Keni likes to wake up to early in the morning though.  She is getting past being frustrated all the time.  Still no change in the seizures but the doctor says not to expect anything until 6 months out from the surgery (October) - so we are still hopeful.

Mackenzie enjoyed her visit with Amy from Ohio.  Thanks for coming to Colorado, Amy!!!
Amy Reed-Fuhrer

Mackenzie is doing well in therapy.  She is taking excellent steps, learning to swing, and doing well with sitting and rolling.
Keni's New Seat belt -the EZ-ON Safety Harness
Jackson Hole, Wyoming
Our next adventure is coming... this week we are on vacation and taking a road trip to Washington and Oregon.
Spokane, Washington

08 August 2009

We are enjoying our vacation and our visits with friends and family.  Mackenzie is doing well on the trip and is happy to see everyone.
With her big sister

Saturday, April 18, 2009

VNS Implant

02 April 2009

The VNS implant surgery is complete and after six hours of observation we are now home.  Mackenzie is doing well. She seems to have very little discomfort at the moment but she is very tired.  She will have about five 'ramp up' appointments in the following weeks to find the right frequency, intensity, and duration of the 'shocks' that the device delivers to the Vagas nerve.

11 April 2009

Happy Easter friends and family.

We are a little over a week out from the VNS implant surgery.  Mackenzie is doing very well. The incisions are healing nicely.  She had her first 'ramp up' appointment this past Thursday.  So far there hasn't been much change in the seizure activity, but that is to be expected.  The device is not yet set at the appropriate level.  According to our research, it could take anywhere from six months to a year to see the results we are hoping to get from this device.

18 April 2009

Two weeks out from the surgery.  The neck incision nearly blends in with her neck creases.  The incision near her armpit is a little bigger and not as easily hidden,  as she grows and develops more body fat it will blend in more naturally (we are told by the doctors).  The device was turned on following the surgery but it is set at its lowest level.  Mackenzie is still having seizures. 

Monday, March 23, 2009

2009 March

6 March

Happy Valentines Day
We have done some research and have decided to try the VNS to help control Keni's seizures.  This device is similar to a pacemaker and is attached to the vagal nerve in the neck area.  The device will intermittently send electrical pulses through the vagal nerve.  The result should be a reduction (or if we are lucky, an elimination) of seizure activity.

Mackenzie is scheduled for this outpatient surgery on 12 March 2009.  With no complications we should return home later the same day.

This past year, Mackenzie's seizures have undergone significant changes.  However, currently they are much less severe than what we saw the first 3 years following the incident and she has been off all anti-seizure medication since October 2008.

10 March

Got news today that our insurance company (Tricare/TriWest) has not approved the implantation device (VNS). 
So for now, while we appeal their decision, the VNS for Mackenzie has been put on hold.

23 March 2009

Mackenzie's VNS implant surgery has been approved by insurance and is rescheduled for 2 April 2009.

Thursday, January 15, 2009

2009 January

Happy New Year.

We celebrated the holidays at home again this year.  Mackenzie was happy Christmas Eve and didn't want to go to sleep. 
She was happy and smiling all of Christmas Day as well.

The day after Christmas Mackenzie's cousins arrived (from Oregon) for a week long visit. 
She was so excited to see them.  We then spent the weekend at Keystone Colorado so that Mackenzie's sister and the cousins could do some snow skiing.
Keystone, Colorado
Keystone, Colorado


It was a fun weekend.  Mackenzie and I enjoyed watching her cousins learn to ski for the first time.

We hope everyone had a wonderful holiday season and we wish the best for all in the new year.