Lucky

It is so great to be home and to find ourselves here, earlier then we expected, is even better. So much to share with everyone. A lot went on in a very short period of time. I'll do my best to hit the main stuff, do it justice and convey to everyone where we find ourselves emotionally once again. We arrived home last night and we both are so exhausted.  Zoey and I crammed a whole lot into 2 short days. Wish I could say it was some great sight seeing but not so much. Although I did see parts of UCLA that I had never seen before. Anyway, I first must tell you that Zoey did an amazing job once again. Did we expect anything different? She certainly captured the hearts of more then a few staffers there at UCLA in her brief stay. Including Dr. Sheilds. Our experience at UCLA was unparalleled to any other stay we have had before. Not that we don't love our second family at Children's but UCLA ....... well, it was excellent. From the moment we arrived to the moment we exited those doors, we were met with the highest degree of professionalism and care. From admitting ,to the transport team , to the fabulous nurses, incredible EEG tech., the anesthesiologist, everyone and I have missed plenty, everyone went above and beyond. I did however have to literally share Zoey's crib with her at night but other then that, it all was great, considering it still, in the end, was a hospital stay. I could give you detail by detail but probably the bottom line would be better. First, Dr. Sheilds was really pleased with how well Zoey seems to be doing . I made a comment that she had seen her fair share and he commented back that she has had seen MORE then her fair share. One of the first things upon meeting her he said was, that when a neurologist first meets a patient they can try and  instantly assess whether a patient , in his words, "Has it going on" and he felt very strongly that Zoey "has it going on". I was touched he said that because it is something we, as her parents and her family, have always said, even in our early days of the NICU.  It has always been something about the twinkle in her eyes. But sometimes we can be bias. Possibly  see things that maybe really aren't there. So for him to say that meant the world to me. We started with a  extended video EEG, 24 hours, and kept it in place until her PET scan, a detailed patterned type MRI, and then a traditional MRI. She was sedated for both procedures. Dr. Sheilds popped in several times over the 2 days and I certainly appreciated being kept in the loop by him. Sometimes, in days of testing, in certain situations, you may never even see a physician or at least not your physician. So I was impressed with that, seeing he is a very sought after, highly respected doctor, in his field. He really gave Zoey his undivided attention and spent as much time with me to answer questions and clarify anything I was uncertain about. First, the results on the EEG. There is no sign of hypsarrythmia at all. Incredible news. There is also no sign of Lennox Gastaut Syndrome either. L.S. is another devastating form of epilepsy that can often develop after Infantile Spasms. Again, incredible news. Her EEG however is not normal but that was not unexpected. One ,because she has damage in her right hemisphere due to her stroke and secondly because of the fact she has Down syndrome. Children with Down syndrome will often have some pattern slowing, so that is not unexpected either. The EEG news was nothing short of a miracle. Topamax seems to be Zoey's miracle drug right now. Hopefully forever. The funny thing is, that when she first started having seizures, her pediatrician was going to start Topamax but instead he sent us to Children's and well you know the rest of the story. I have visited, momentarily, the thought of what if. What if we had started it way back in February? Maybe her journey would not have been as difficult. But no sense dwelling there. We all did ,at the time , what we thought was best for Zoey. Today we know that Topamax is working. It has been over 2 weeks since Zoey has had a seizure. That, in and of itself , is amazing and coupled with a change for the better in her EEG and what more could we ask for. Her PET scan and MRI results will be ready Monday. Dr. Sheilds will call us with those results. They will give us the clear cut answer as to whether her seizures are originating from her stroke site. Then what you may ask? Well, for now we stay the course. We gather all the information together and we have it at the ready as we need it. Meaning ,her treatment will stay as it is for now until we have to decide otherwise. Dr. Sheilds reiterated what we all know so well already and that is that seizure disorders are VERY unpredictable. When and if they may change is anyones guess. For now, we say what we know for sure. That is that Zoey is seizure free again. Her hyparrythmia is gone once again. She is feeling and looking better once again. For today, what more can we hope for. I feel fairly confident in saying that Zoey has faced a catastrophic form of epilepsy, Infantile Spams, and won. Another battle. Another victory. I woke this morning feeling very similar as to when Zoey's heart surgery was over and we were home. I feel confident and that scares me a bit. But I will do Zoey a disservice if I dwell in the what ifs. I do her battle a disservice if I dwell in the what ifs. So I live for today and today feels pretty darn good. School for the kids winds down tomorrow. Last year at this time our life was at a stand still. Summer was basically non existent because we were home g-tube feeding Zoey 20 hrs. a day keeping her healthy for heart surgery. This summer I intend to have it go differently. We are going to get out there and do some living. Have some fun. Rejoice in the here and now. There will probably always be something to conquer on the Zoey health front. That is just how it goes with these medically fragile little ones. Maybe it will level off one day. I sure hope so. For Zoey's sake. Today she is one tired little girl. Fighting her naps however, but I enjoy seeing her up and involved and not feeling lousy. She has a lot of work ahead of her. Tons of PT and OT and Junior League of the Blind thrown in there as well. Stuff. Lots and Lots of stuff. Everything will take just that much longer for her but I know she'll get there in Zoey time. Or rather Sam time ........ Slow and Steady. Today is a new day. If you can make it out in this posts picture, you will see that Zoey's shirt says lucky. I thought it was appropriate for the day. Lucky simplifies it a bit but certainly says more than enough. We want to once again thank all our friends and family for your prayers, all your help with the boys, most especially your love. We love you right back. To our blogging friends and their amazing children, your journeys continue to inspire us , your children's journeys continue to inspire us. We look forward to the day when we all can check in on each other and hear about just regular kid stuff. Some of you are inching your way there already. Others are still searching. Which ever one it is, we continue to pray for you all daily. A new normal begins once again in the Needham household. Normal around here is like a revolving door sometimes. Keeps us moving though. Never leaves us standing still. Makes life interesting. I wouldn't have it any other way. Even the heartache. It has shaped us into who we are today. The only thing I would change is that Zoey has had to suffer in any way through any of it. That I would change. I leave you with this poem today. It comes from a book called "Gifts". I have wanted this book for awhile now but never got around to picking it up. I wasn't meant to. It is a book on mothers reflections on how their children with Down syndrome have enriched their lives. It is a beautiful book given to me on Saturday by a friend who also happens to have a daughter with Down syndrome. Her daughter, appropriately named Hope, battled Infantile Spasms and Lennox Gastaut Syndrome. Today Hope is a bright and beautiful 12 1/2 year old living a happy, healthy, joy filled life. Her mom had meant to get this to me months ago she said but life got busy and she was sorry for the delay. I say, I wasn't meant to get this book until that day, that moment. God had the timing on that one and His timing was perfect. 

 Life is so generous a giver,

but we, judging it's gifts

by their covering,

cast them away as ugly

or heavy or hard.

Remove the covering

and you will find beneath it

a living splendor,

woven of love, by wisdom,

with power.

   By Fra Giovanni

      

Zoey is my gift. She has enriched my life beyond words. May all the world see her beauty and the beauty of all children like her. Your lives will be fuller, richer, better because of them. Promise.