Friday, May 23, 2008

A game plan

Wednesday was the day we could begin calling UCLA to see if Zoey's medical record had been reviewed by the attending doctors and whether or not she would be able to get into there anytime soon. So I began my stalking at about 9:05 am. I of course got a message machine. I left my message hoping to hear back for someone, anyone. Didn't happen. So at 4pm I left my second message. By the end of the day I still hadn't heard back. Game plan for Thursday was: kick up my amount of calls, thinking I might semi irritate someone with my relentless calling and that I might hear back from an actual human. Well, if you can believe it, no stalking necessary, they called US before noon yesterday. They were so nice , so polite and so helpful. Our first impression is definitely a positive one at this point. Once we talked with them we were given direct phone numbers to reach someone, not a machine, if need be. Best of all we have a game plan. I love game plans. Little Miss Zoey will become an inpatient on June the 9th to under go testing to determine whether or not she is a candidate for surgery. I am sure it sounds kind of strange to some but we are thrilled. Others will know exactly how we are feeling. When your child has been suffering from seizures and you have stood by helplessly watching, waiting, hoping the latest medication will be their miracle and time and again another option fails, you are absolutely delighted when there comes another prospect on the horizon that may help you, help them, be rid of this devastating disorder.Even the prospect of a surgery, even a surgery as significant as the one we have been discussing, brings renewed hope. We certainly are not without concern and worry. We know we cannot get so fixated that she will definitely be a candidate that we set ourselves up for disappointment. Some find it unbelievable that we actually do hope she is a candidate. It even surprises me . The thought of half of my child's brain being removed is nothing short of mind boggling. But somewhere in my heart of hearts I feel as if this could be her golden ticket. Her chance to develop seizure free. Her chance to get on to the business of being just a regular baby. I am very realistic that it could turn out that she is not a candidate. However, I know that getting into UCLA is a gift in and of itself. Becoming a patient of Dr. Shield's and the incredible team of neurologists there is a gift. It ensures she will always be on the cutting edge of new developments in epilepsy. Being there will allow me to know that we have done everything possible for Zoey to have the best chance for the brightest future. I have peace with that knowledge. The testing is approximately 3-4 days. Longer if they decide to wean her off of Topamax to get a more accurate reading without medication influencing the results. I will be with her for whatever the duration. I am the feed source. Besides which, I have a problem putting her down let alone leaving her for any amount of time. It is going to take a lot of logistical planning. It is once again going to be a time we will have to lean on the support of our family and friends to help take care of things on the home front. I cannot believe that this time last year we were in the throws of keeping Zoey healthy and getting her to surgery in August. Once again we find ourselves in a crisis of sorts. Once again we must rely on our God to guide us. His hand to lead us. His strength to carry us. We leave you with this little video of Zoey. We have never heard her giggle until this past week or so. Since Zoey is a girl of few words it is magic to our ears to hear her little voice. To catch a glimpse, capture a moment of the possibilities. This is why we are doing what we are doing. It is the same as any parent would be doing for the love of their child. We are no different. We are all bonded in the desire to see our children grow and thrive and be happy. No more no less. She is happy. We intend to do everything in our power to ensure she stays that way. The rest we leave to the ONE who really holds the power.

5 comments:

rae said...

OMG that is absolutely precious! Fingers crossed and saying prayers that things go well on the 9th... I hope you get some answers and perhaps that well deserved "golden ticket"
hugs
rae

Anonymous said...

I will pray for Zoey. She is an angel.Im sorry that any parent has to go through this, it is not fair.My daughter is teaching me what life is about. She had a hemipherectomy, she is doing amazing.She is comming off all seizure meds.It was the best decision ever made for her. Good luck to you. Your family will be in my prayers. She is beautiful.

Mary said...

How stinkin' cute! I can imagine the smile on your face because it's on mine as well.

Reagan Leigh said...

Heather,
I'm so glad that everything is official now and you have a game plan for your visit with Dr. Shields...I'm sure you're breathing a little easier now. From what I hear, he's the best. It really is a blessing that you were able to get Zoey in to see him (and so quickly). As always...Zoey is in my prayers.
Tera
PS-the video is adorable!

labmeb said...

I love the video! We read the blog alomost every day.I like being up to date. You are in our thoughts.
Love, Lisa and Michelle