I am just not capable of a short post, I tried, sorry.

Zoey spent the first 2 1/2 months of her life sleeping in a crib courtesy of "Property of Children's Hospital Of Los Angeles". We tried to make it look as much as a baby's nursery crib as we could. But try as we might, no matter how many pink blankets, stuffed dolls, mobiles, name plates, crosses or music boxes, that we adorned it with, it looked exactly like what it was ..... a hospital crib. When the day was quickly approaching to finally bring Zoey home, our biggest dilemma was what would she sleep in when she got home? Where would she sleep when she got home? She would require elevation, as she was pump fed nearly all day long. She needed to be hooked up to one machine or another all or most of the day. And most importantly she would require to have someone nearby at all times. All of our time as a family was mostly spent downstairs. We were blessed to live in a large home with a lot of space down stairs. The most logical solution was to bring her large crib down to the family room to be amongst the action and activity. The crib was sturdy. Large. And quite fitting for our little princess. So we moved it down stairs and it became one with the furniture. In fact it was placed directly under surround sound speakers and Zoey LOVED the noise. Noise from TV and CD"S. Noise from her brothers plasma cars that they drove around and around and around the entire living room/kitchen area. There was no such thing as "be quiet the baby is sleeping" For 2 1/2 months she lived in the hustle and bustle of the NICU. She was absolutely use to noise. At night we would transfer her up to our room and in the morning we would transfer her back down stairs. Thus became our lives. Transferring stuff. Medical equipment and this tiny, tiny baby that I often had nightmares of dropping or tripping with as I went from place to place. She was so fragile. But getting her out of the NICU and away from potentially deadly virus's became more important and superseded my fears of bringing home such a medically fragile child. She lay on her back for 3 more months. Only enough energy to breathe. She never cried once in all of her little life that first 5 1/2 months. She never made a sound other then to cough or gag, for 5 1/2 months. Absolutely the truth. Can you imagine that we never heard her cry for 5 1/2 months? She knew that all her body was capable of doing was to lie there in her big, over sized for her tiny body, crib, and breathe and grow, grow and breathe. Surgery came and went. We kept the same bed deal afterwards. It was all she knew. She was comfortable. She was secure. She loved her little nest that we created for her in that over sized crib of hers. When we moved to the townhouse in December, no way was there room for the crib down stairs. So away the crib went and made way for a port-a-crib down stairs if needed but now she became stronger for Bumbos and bouncy seats and saucers and the floor to explore. She kept her night time bed which was a co- sleeper. A co-sleeper is just a fancy port-a-crib that attaches to our bed.The co- sleeper was given to us by a very special friend of mine named Kari. I will never forget the day her husband and her father brought it over to us. It was Zoey's very first day home. They were our first visitors. The first people to to see Zoey out of the hospital environment. Kari's dad is a Deacon at our parish and before he left he ask if we could all gather together and pray. So there we were. Zoey, surrounded by her family and people who loved her,her very first day home,circled together, praying for this tiny blessing of ours. That moment in our living room was one I will cherish. It was a perfect moment and the co -sleeper would come to be a perfect place for Zoey. Perfect for a pint size little soul who still found comfort in the confines of a small space. Well, tonight that all changes. I use to hate change. Dreaded it really. Feared it honestly. Now I mostly embrace it. It means we are living. It means we are moving. It means life is waiting to grant us new moments. Hopefully we are ready. Often we are not. But change comes nonetheless. Mark and I headed over to the "old house" We still own it. Sort of. It's empty. It's beautiful. I miss it. But it's just a house. Normally I just go into the garage and retrieve something from a box or tote that I need or the kids need or Mark needs. We are still in limbo. Some things still there in the garage. Most here. Today I actually followed Mark into the house. Big mistake. You know how a smell can instantly evoke and trigger a memory. Like a hospital smell. That's one I wish I could erase. Or the smell of a baby's freshly lotioned skin. That's one I hope to never forget. Well, today, my "old house" smelled like my house. Visions of my children laughing, fighting, playing, lounging, kept flooding back. Visions of Zoey. Innocent, fragile, fighting, surviving came flooding back. The vision of family gatherings, past and future, came flooding back. Tears came flooding back. I sat on the floor of my living room and cried. Why? I have never been one to yearn for or covet things. They are just things. We were fortunate to have a beautiful home, that had ample room and more for us all. I always felt lucky and fortunate to have that. The home we have now is equally beautiful. I miss the boys having a yard. I miss room for Zoey to roll and hopefully one day crawl, walk and run. I miss a neighborhood. But we are together. We are happy. We are healthy. Zoey is here. I do not understand the tears. They make no sense to me even at this moment. Maybe it was a release. Maybe the limbo of no longer living in that house but still having that house is weighing heavy on me. It will be better when it is someone else's. Maybe then I won't have this strange, uncharacteristic yearning of wanting it back. Change. No matter what we do, it still comes. So tonight, Mark builds Zoey's "new", "old" crib. How strange it will be to see her in it again after 7 months. A long time in the life of a 16 month old. I hope she adjusts well to her change. I hope I adjust well to her change. I am excited for her. She has been so full of change lately. Her two top teeth are almost through. Her kisses she gives are magical. My child who has hated her tummy has suddenly, in 3 short days decided she loves her tummy. My child who only rolled from her left side up and over, now initiates it from her right. Changing everyday, my little wonder. She sits in a high chair. Be it on two blankets to lift her bottom and a blanket to keep her from leaning too far left, but she is still sitting in a high chair. Changes. Tonight my baby sleeps in her big girl crib, no mattress elevation, no blankets to prevent her from rolling. No pumps. No machines. Just my baby, laying peacefully in her big girl crib. Change is good.

Zoey's Less Than Perfect Heart (warning: it's a marathon post!)

*Zoey, being a little leery of this new high chair thing!

My pregnancy with Zoey began quite differently then my others. Ignoring the obvious, which was that in two short months I would be 43, ancient in some peoples books. A full ten years older then my very good friend who would deliver her daughter only a few weeks before Zoey came into this world. We knew what medical statistics stated but pushed that aside, digested the impending arrival of child number 6 and moved on. The beginning weeks were difficult. I was sick from the get go. Unusual for me, as that normally doesn't hit till slightly later. My HCG levels were through the roof but ultrasound didn't show a baby. Over a weeks worth of blood draws, numerous ultrasounds, ruling out an Ectopic pregnancy and several Dr.'s visits, the day came and there it was, that familiar flicker. A baby's heartbeat. Huge sigh of relief. For as much as I had to wrap my head around another child at my age, I really, really wanted this baby. So that little heart beat on the screen was all I needed to see to let me know all would be well. A few weeks later and we actually heard the heart beat and by then we were already in love and planing the arrival of our newest addition. After the worst morning sickness I had EVER experienced subsided, I was able to settle into life again. We opted out of AFP testing as well as an Amnio. We knew what the numbers meant at my age. A level 2 ultrasound was scheduled for me at 18 weeks with a Perientologist. A doctor who often sees women "of advanced maternal age", I love that term. The first time I saw it on my chart, my eyes popped clear out of their sockets. What the heck were they talking about? I was just 30 yesterday, how could I become know as "advanced maternal age" so quickly? Oh well. I have learned to embrace the term today. Proud actually. Mark and I went to the appointment. Chatty little technician. Pointed out all the important things. Informed us that baby number 6 was going to be a girl. Cool. Moving on. Dead silence. Chatty Cathy, not so chatty any more. Mumbling something about not being able to get a clear picture of her heart, baby moving too much, blah, blah, blah. That sinking feeling took over my being because I knew, in that very moment, that something was wrong with my baby's heart. Mark, the ever optimist, dismisses my worry and assures me I am reading WAY TOO MUCH into her changed demeanor. The Dr. pops in, fills us in on the findings, instructs us to come back next week when the pediatric cardiologist would be there and well, we all know the way it went from there. So much transpired over the next several months, too much too tell here. But it all revolved around my little Zoey's forming heart. Specialists galore, too many echo cardiograms to count and the planning. Planning for delivery, planning for surgery, just planning and waiting. Her defect was a significant one. The easiest way to explain Zoey's defect was that the wall that separates all the chambers and divides two valves, never formed properly. Blood just whooshed aimlessly around. We would find out close to her birth that she actually had a larger "hole" then most with her type of defect. Alarming but manageable. Because Zoey came into this world so sick, her manageable defect soon became much less manageable. She entered already in congestive heart failure and they had not prepared for her lungs to have been so "flooded" We walked the pulmonary hypertension/heart failure tight rope for months. Administering numerous and various amounts of medication around the clock. Watching her struggle to be g-tube fed 20 hours a day, at such a slow rate because her body could not even handle the stress of DIGESTING breast milk. Gagging, coughing, retching. She fought. She fought hard. Surgery came and her fix was perfect. With a defect her size they expected to see some leakage afterwards but there was none. Zoey got her first big break. A perfect heart. That 5 1/2 months to get her to surgery was beyond insane. Keeping her healthy. Ordering the same hand sanitizer that they used at the bedside in the NICU, by the case. We still have it on our counters and in our cars to this day. We are all full fledged germaphobics. So where am I going with this you ask? I have touched on it before but now it seems official. Well ,Wednesday Zoey had a cardiologist appointment to check on her heart due to the side effects of the ACTH and how it had an adverse effect on her perfect heart. She is now categorized as having Hypertrophic Cardiomyopathy. Thick heart in lay man's terms. It has not gone down one bit. They like to see it as a 5. Zoey measures at an 11. So the drug that put her body through so much over 7 weeks. The drug that had me administering two shots a day into my little angels thighs. The drug, that in the end, did not work. That drug, now has left her with a less then perfect heart. They would have liked to have seen some reduction by now. Something. We will recheck in a month. If no change by then then we are looking at having to put her on a beta blocker. Beta blockers are relatively harmless but the idea of having to give her yet another medication, harmless or not, bugs me to no end. So Zoey's new perfect heart back in August of last year, is less then perfect, for now. We pray next month that we will see it measuring even the slightest bit smaller and then we will know it is heading in the right direction. Discouraging, a little. Her heart was the one thing I felt I could truly check off the list and not have to revisit after the surgery. Unlike her blood disorder, that hangs over my head like one of those giant anvils in the Bugs Bunny /Road Runner Cartoons, remember those? But we have been discouraged far more over the last 15 months and have gotten past those moments. This is just a moment. We are so blessed to be seeing her progressing in other areas and over coming obstacle after obstacle. We thank God daily for bringing her this far. Our hearts are full of gratitude for where we are today. Where she is today. As I leave you today, I leave you with one small request. Nothing really to do with us. Rather some of the other little ones, some of Zoey's friends. Zoey's friends have become very dear to us. We have come to love them and their families in a strange cyber space kind of way. The beauty of the Internet has also allowed us the gift of some amazingly, beautiful children and the privileged of being part of their journey. We are all in various states of our journey's. The process is forever changing. Some good days. Some, not so good. These children are in a constant state of flux. Never knowing which way the tide will be turning. So if you too have found a little one or two, through Zoey's Blog, I ask you to not only peek in on their lives but to pray for them . All of them. They are all in need of prayers of one kind or another. Some have struggles that feel insurmountable to their parents, parents who just are in search of answers for the children they love more then any spoken words. Not many can understand the sheer state of helplessness you feel as a parent, when you just can't, no matter what you do, you just can't help your child. They all need your prayers. These precious little ones. Their amazing families are just trying to get through each day the best they can, when really they often would like to retreat to their beds, but can't. Why? Because of the courage and resiliency of their children who never give in or up. I know that I am forever changed because of these children and my hope is that, through the prayers of many, that their journey's may be made lighter because of the love of others, even complete strangers.
"In life we cannot do great things. We can only do small things with great love" Mother Teresa

Kiss Me Cait

We've always said that if she never did anything else, we'd be content...

looks like we got our wish....

Got milk?

Well, if so, whatever you do, DO NOT give it to Zoey. Yep, Little Miss is allergic to milk. Spoke to the pediatrician today and that's the news. Could be worse, a lot worse, like Topamax worse. I will take milk over her miracle seizure medication any day. Boy did we get lucky with that. Blessed really. His recommendation for now is to not introduce milk for at least 6-12 months. I am fine with it. I did however have dreams of giving her licks from her first ice cream cone sometime in the not so distant future. Seems like a right of passage into toddler-hood. Lots of alternative's though. Soymilk, sherbet for instance. Thank goodness she started breastfeeding after heart surgery.Although shes on a hunger strike from that at the moment.But none the less hat was nothing short of a miracle either. No cows milk,no big deal really. See I tend to be a slight organic, natural, no pesticide, no red meat, freak. Ask the big girls. They will tell you. That and probably more. Funny though. As much as they were far from happy that they couldn't have the Lucky Charms, Fruit Loops, Coco Puffs cereal "like all the rest of the kids!" I know I have at least two and 3/4 grown children that see it my way. The little guys go with the flow for now. But there's nothing like your child calling you from Trader Joe's inquiring about granola. Now, don't get me wrong. They love a good fat In N Out Double Double Burger now and then but imagine being my child and telling people you have never had a Happy Meal. Now imagine ME becoming best of friends with a couple, Zoey's Godparent's to be exact, who OWN several McDonald's, and them finding out my kids never had a Happy Meal. Imagine me talking my way out of that. Point is I guess, that Zoey not having milk products is not so big of a deal to me. The Topamax, now that would have been a big deal. So, what's new here? Not a whole bunch. The weekend was full. Mark did fun stuff with his little buddies. They, Mark, included needed it. Boy time. It's the one thing around here that I can't completely pull off. They swam and went to a party and went to a concert in the park. Friday was the movie and Saturday was Eddie Money in concert. Now, if you weren't at least a teenager in the 80's then you are most likely saying "who the h#*& is Eddie Money. But if you were ,because Mark was, me well I think I MIGHT know who he is, seeing I am MUUUUCH younger then Mark. Needless to say the boys loved seeing live, jamming music, with close to 5,000 people crammed into a very small area, rock'n out! Sorry I missed it but after all, remember I have NO idea who Eddie Money is. Sunday, church. Great to be back. Mark has been consistently going with the kids but Zoey and I usually hang back. Time to get into the swing again and it felt good. People loved seeing Zoey. Our church community has embraced us totally and completely. It feels absolutely amazing knowing we have had the love and support of our parish community. Those we know personally and many we have yet to even meet, have touched us beyond words. As I have said before it truly has taken a village to raise up this child. Church was the place to be yesterday. The day finished as the weekend had begun. Uneventful and relatively relaxing. Well, except for the fact that I awoke this morning and realized that because Zoey had gone to bed early that I had not given her her medication. I have never done that before so to say I was a bit wigged out was an under statement. After googling "missed dosage of Topamax" like a crazy person, I snapped out of it and talked myself down, with the help of Mark of course. Then I realized he is the Dad, why didn't he remember? Easier to put the blame else where. Not fair but easier. Like the good guy he is, he took it and we moved on.I continue to embrace the tempo at which summer has begun and my only regret is that the older girls are not here more often. My favorite time is when a everyone is home, in their beds, doors locked, the world locked out and it's just us. All together. Not realistic to last but a mom could dream. Zoey had OT/PT therapy today. Monday, Wednesday and Thursday are her days. Vision therapy two of those day too. She is so determined that little one. Smiles through it all and some of it she really hates! Like tummy time of course and most especially messing with her left hand. She is absolutely bugged most of the time it is manipulated with. She wears a soft splint occasionally but again, not her favorite. Poor baby tries to "get it off" with her right hand, to no avail. We have many areas that will present challenges as we move into the future but that cute, chubby little hand will most certainly pose the biggest one. Her cute, kinda, chubby little leg will also but to a lesser degree. The medical term for this condition is hemiplegic, or one side paralysis or more specifically in Zoey's case,hemiparesis, or one sided weakness. All circling back to her stroke. Darn strokes. Really do a number on these little ones. But she marches on and on. My little trooper. That's the news. Not much but enough for now. Thanks for putting up and still coming back for my lengthy, disorganized but always heartfelt posts. We are blessed and lucky to have you checking in on our little corner of the world.

*Picture from movie night and Zoey in her Amby. She no longer sleeps in it but LOVES to play in it. I found her today,happy as a clam moving and swinging that thing around.Proud of herself I think that she had "control" to set it in motion.

Regular

A very uneventful day,which was heavenly! As an added bonus to the day,Mark surprised me and took the entire day off. Virtually unheard of around here. I think he's trying to score a few points seeing he has already laid the ground work for July to be an insane month of projects. Translation...... Mark will be M.I.A. for July. I seriously have fore warned my girls that although their Dad is an awesome father and husband,please no matter what, do not marry anyone in the entertainment business, it's a tough go of it. Seriously.Probably the heads up was unnecessary as Caitlin once uttered from the back seat of the car, at the tender age of 9 or so ... "Remember when we didn't know who our Dad was?" Just about broke Mark's heart. The cold hard reality of life in Hollywood. Anyway, the day was relaxing. A few small errands here and there. We hated to venture far as the temperature was around 100 in most areas. Caitlin left work around 5pm and her car temperature gage read 112! Brutal. I managed to escape for a quick pedicure for an hour or so. Very relaxing. We barbecued and then Mark and his boys headed to movie night in the park. It is a really fun event the Park and Rec. sponsors all summer long on Friday nights. Tons of people with blankets and chairs and popcorn and candy. Kids in P.J.'s. Just an all around great time. Last week I took them. This week was Mark's turn. Next week we all go. As per Jake's scheduling! Caitlin is with her boyfriend . Taylor is at work. Jess, well, spoke to her a bit ago and she was at Barnes and Noble.I love that even though she doesn't live here, she has total freedom and she still calls everyday. How lucky am I? So that leaves Zoey and I. She went down around 8 or so. So in reality that actually means .... just me. All alone. Solitude. What ever will I do with myself? Blog a little. Bath perhaps. People magazine definitely.Maybe even a glass of wine. Just some regular stuff. I love regular. Regular is definitely underrated. I crave regular in my life now a days. Tomorrow, more of the same. Regular family stuff. A birthday party here. Grocery shopping there. Throw in some extra errands.Mundane and well, down right regular. Little Miss Zoey continues to rock steady. No seizures in, oh I don't even know, quite awhile though. Gotta love that Topamax. Eating, well we press on. I am trying a few things. I'll let you know how they are working once I give them a fighting chance. Till then I continue to keep her orally stimulated and g- tube feed the rest as needed. She was slightly cranky today. Still working on those teeth I suppose. I say cranky but actually she is so darn laid back if she so much as utters anything other then a coo along with a smile , I call that "a little cranky". She has always and remains to be, the easiest child. Minus the heart thing, blood thing, stroke thing ,seizure thing. Other then those small items, easy as pie! I leave you with the Princess just kicking back with big sister Taylor. Too cute for words.

Surrender and Sunshine

Several months back, I believe at the beginning of Zoey's ACTH treatment, I was having a heavy conversation with Caitlin in my bedroom.. Heavy in the sense it was all about the emotional coping I was or was not doing at the time, regarding Zoey and the new journey of Infantile Spasms we found ourselves traveling. As we spoke, me usually with frustration, fear and anger dominating my tone and Caitlins tone usually coming from strictly a calm spiritual perspective, I found myself again talking of surrender. Grappling with finding myself in a place of surrender where Zoey's medical state found her and us in again. Feeling as if we, I, must once again roll over and take whatever was thrust upon her and saying AGAIN, "It was just the way it was." I was so very tired of surrendering to something, anything, once again. As I said surrender, for the umpteenth time, Joe happened to walk in the room. He proceeded to say," Hey, surrender is when you do this..." and he thrust both arms sky ward. At that very moment, surrender took on a different meaning for me. As I saw his little arms fly up I realized it was exactly what I must do. Throw my arms to the Heavens and surrender myself, Zoey's situation, our lives to God. I know that prior to the seizure diagnosis I SAID my control, her life, was in the control of no one other then God, but I wasn't truly living my words. From that day in my bedroom and beyond, I have really tried and in my opinion, others might differ, but in my opinion, I think I have surrendered it all, wholly and completely over to God. The simple words and action of my 4 year old gave me a moment of clarity and the gift to rethink my definition,as it applied to me, of surrender. So yesterday when we spoke to the Dr. at UCLA and our neuro at Children's I had to put my new found relinquishment of control or surrender, to action. We were told that more likely then not that Zoey will have some type of seizure disorder for the rest of her life. Disorders that we hope can be controlled by medication but never cured because of the damaged portion of her brain. It is the consensus of all to not rush to surgery but surgery will continue to be an ever present possibility. As long as the seizures are being controlled and the spasm/hypsarrythmia are not present, then we stay the course. It is not as if I was wanting surgery but ..... if that could "cure" her seizures then in some weird way, it sounded logical. It sounded like a fix of sorts . We as parents are always trying to fix things. Even in the face of the un fixable. For now though, she is doing really well, but for" NOW" is the key word where seizures are concerned. Seizures can change on a dime. That's the scary part. I was not given any guarantee, there are never guarantees in neurology,that her hypsarrythmia would not reappear or how long we could hope for the Topamax to continue the job it is currently doing. We as parents are looking for clear cut, concrete answers and it just is not going to happen. I feel I now have 2 really huge things lurking out there that hold a very real possibility of happening. Both in their own right, terrifying. One, re emergent of seizures and two, her blood disorder turning into leukemia. Two nasty possibilities both of which I have no say or control in. My surrender continues. I turn to God to allow me the wisdom to focus our lives on the things I do have control of and the rest throw up my arms and give it all to Him. I once was at a Women's retreat and we participated in this one exercise. It involved us bringing attention to all the things in our lives, past, present, future, things we were finding were weighing us down as we continued to fruitlessly make sense , logic and peace with them. It went something like this: We were told to think of all those things, the good , the bad and the ugly, gather them together, lift them up, bless them as Holy and let them go. It had arm movements that went with it and I found it then and find it now, to be so freeing. Much like the idea of raising my arms to God in constant surrender and letting it go to Him. In many ways the Needham's, all of us , are in a decent place right now. One we are grateful for even with it's uncertainty. Because in the end , even if you are not, have not and never will find yourselves in the life circumstance that we have, aren't all of our lives filled with uncertainty. Most of us know this. It is a matter of implementing that knowledge into our daily lives. Zoey is good today. Really good. We never take that for granted, ever. This summer begins quite differently then last. We are grateful for the moments that allow her and the rest of us to bask in some normalcy. Unfortunately we cautiously bask in that normalcy but know how blessed we are to at least be basking! Zoey is wearing a onesie today that says... Sunshine On My Shoulders Make Me Happy. Sunshine, for us this summer, is of course the actual sunlight that streams from the sky that we are able to feel upon our faces daily. That sunshine seemed to elude us through circumstances of last summer. But for us ,in this moment, it is also the light of God that illuminates our life daily through the gifts He bestows upon us that warms our souls as well as our earthly bodies. For us, Zoey is our sunshine, she lights our way and or lives and radiates such strength that it allows us to see each new day and the beauty it holds. Her sunshine make us all incredibly happy!

Kinda normal stuff

Day two of summer break is well under way. The boys began swimming lessons yesterday. They need to be be in the pool at 7:30. Yes, 7:30 am. The drive is about a 20 minute drive so there is no sleeping in around here. Yesterday was the hardest. We hated stirring them that early but today was a little easier. We'll keep this up for the next several weeks. At least until we see marked improvement in their skills. Last year was a lost swim season due to being house bound with Miss Zoey and g-tube feeding her 20 hours a day and keeping her away from germs. So this year becoming strong swimmers is our goal. Hopefully we can make up for a lot of lost time this summer. We really want to fill it with fun stuff. One of my guilts is certainly that the boys have missed out on some things over the last 15 months as well as time spent with me. I don't think they are any worse for the wear, but I still carry that guilt. Time to let that go of that with them as well as the girls too. I know what they have gained far exceeds what I classify as a loss. I continue to be so proud of everyone's ability to adapt effortlessly with the ever changing times around here. Zoey's weekend was fairly uneventful. The great news is she did not break out in hives again. I really felt strongly that there had to be another explanation other then the Topamax. I decided to do my own experiment and I discontinued the Pediasure. It was the one new thing in her system that I had the power to play with. Meaning, anything that went on and into her at UCLA, I would have no idea how to eliminate those as possibilities. Pedisure seemed to be a good start. Well, coincidence or not, as soon as I did that, no more hives. We saw her pediatrician Monday morning and he was thrilled. He certainly would have hated to see us having to change up her medication at this juncture. You can see it in his eyes how pleased he is on how well she is doing. So, hopefully we have solved the case of the hives. Today we went to have a blood sensitivity panel, an IGE , that hopefully will pinpoint where her allergy might fall. We are thinking milk or soy. Till then I will stay in a holding pattern. We are really struggling with her appetite. She went from 16 lbs. 4 oz. to 15 lbs. 12oz from Friday to yesterday. Topamax is a major appetite suppressant for some of these kids. In fact I have found out that Topamax is highly sought after for some adults as a diet aid. Strange but true. It is pretty surreal to hear your child's' physician speak into his wireless recorder and say, child's ANOREXIA is most likely brought on by the Topamax she's taking. ANOREXIA, my gosh she's only 15 months old. But that's the official wording of it. So time to plump up the child. The routine now becomes nurse her as long as she will. Which is not much and she is very distracted. Then I pump when I think she is done. Then try some solids, which she is not really into, but I have to continue to offer her orally because we don't want her to lose the desire to feed by mouth. After I do all the oral stuff then I will g-tube feed her 3 ounces or so. We will then go to a Pediatric nutritionist after we decipher her allergies and maybe they can give us some pointers. Feeding issues are not at all uncommon with children with developmental delays as well as seizure disorders. It is just going to take phenomenal perseverance on our part to work through it. So of course that's what we'll do. She had ot/pt yesterday. She has that 3 times a week. She is working so, so hard to regain what she has lost. I believe we find ourselves back to where we were before the seizures took over in February and even slightly ahead of that. People often ask me what she can or can't do so I'll give it in an abbreviated version: Zoey can roll both ways, sit with support, has great neck strength and head control, she grabs her toes and has just begun putting them in her mouth (so cute!), she nurses and can eat/swallow with no problem (when she wants to.) She can put minimal support on the floor if you stand her in an upright position, Zoey hates to be on her tummy, we believe it is because she laid on her back for her first 5 1/2 months until her heart surgery, so the minute you place her on her tummy she flips over. Tummy time is so important for core strength but no matter what we do we cannot keep her there long. She lifts her head way up and over she goes! She can turn pages in a book, she can play with toys in her hand for prolonged periods of time, she purposely reaches for any and all things within her sight and beyond, however, Zoey can only use her right hand due to her stroke. Her left is basically just as strong as her right but she often doesn't realize it is there. She has disregard of it. But if you place an object in her left hand she will immediately transfer it to her right because she feels more comfortable. It remains one of her biggest hurdles and our biggest struggle to help her with. I guess if I had to put her physical development at a month level I would say maybe 5-6 months. Her stroke and seizure combination has really set her back. Socially though she is really on top of things . She loves people and activity. She smiles and reaches towards people. She is very interactive with her surroundings. She can be shy at times also. She is truly a darling, endearing soul. She will find her way in time. We know she will. We did hear back from UCLA today. Dr. Sheilds is away for the week so a Fellow called us. We are hoping to talk to Dr. Sheilds when he returns next week but here is what she was able to tell us and what I was able to understand. Nothing new on the MRI. Stroke site of course the same. We didn't expect there to be anything different there. The PET scan confirmed that her seizures originate from her stroke site and everything is limited to her damaged right hemisphere. Which is good news. They are happy that she is doing well on the Topamax however it will not allow her to be seizure free. It is just controlling the seizures which is great but it is not a complete fix. If she stopped the medication we would most likely see seizures return as well as there is a chance she will develop another seizure disorder at some time. She told me that because Zoey had her stroke prebirth, that her left side has most likely taken over what was needed from the right. All that probably remains on the right amounts to just damaged / dead tissue. Sounds so harsh but it is most likely the reality. Our question to Dr. Shield will be, where from here? In his expert opinion and he is one of the renowned experts in his field, where would he proceed? Do we remain on this path seeing she is doing so well or if they truly feel that seizures will return because of the brain damage do we do something now or when we see some outward expression that things are changing for the worse. My initial reaction was why would we wait until she did some sort of downward spiral, why not do the hemishperectomy now but then the reality of the surgery is slightly overwhelming. I am anxious to speak directly to him . I often like to pose questions to Doctors in the manner of, What would you do if this was your child? I think we will say the same to Dr. Shields. Next week may hold some interesting things. That is the update for now. The picture today is from her therapy session. We try and occupy her with a toy in front of her to keep her on her tummy but it doesn't last long. We are so glad to have summer break here. Even though our home tends to be often hectic, summer brings a welcome break from the monotonous routine of the school year. Another thing, since I have the blessing of having such an age gap between children I am able to look past the insane moments and know in a blink of an eye they will be grown and they will be doing their own thing and they will not need you in the same way. Sometimes that is what I try and convey to mom's in the midst of life with young ones. It all passes. Far too quickly. Even in the throws of tantrums. You will miss it when it's gone, trust me. See what happened to me ....... I kept going! Just a little gift of wisdom that has come from being a "seasoned" mom and the very lucky mom of Zoey who puts instant perspective on it all. As always, a huge thank you to all that keep tabs on our little crew. It continues to be such a source of strength and comfort knowing we are loved and prayed for.

Marks Father's Day plaque

To all the Dad's out there ..... May your day be filled with love and laughter and may you be surrounded by God's grace as you gaze at your children and the miracle of all you have created. To my Dad, mere words could never express to him how very blessed and lucky I am to be his daughter.He continues to inspire me each and every day. To my husband, thank you for the gift of my beautiful children. I know it is a few more then you bargained for, but look at their faces, are they not all amazing! To all the Dad's out there who find themselves today, with a heavy heart because they have had to helplessly stand by as their children have had to struggle through this life to find their way. May the Lord be your strength today and for the reminder of your journey with them. And finally,to all of you who find yourselves without your Dad today, may God send you His peace.

Prayers already ....... no joke.

Did I really say I was feeling confident? Did I really say that I felt like I could take a breathe? Did I really say maybe we could find ourselves getting into a new normal? Did I really say those things? If I did, can you remind me never to do it again! And if I do,slap me.Hard. With Zoey I should learn to never, ever become comfortable. There will always be something. Today's something is kind of a biggie. It all started the other morning. I got her dressed, did the usual morning stuff and went to lie her down for her nap. I went back in to check on her, she was asleep but I also noticed she had broken out in hives. Kinda weird. By the time she woke up they were gone. With everything that has ever gone on with Zoey, there are some things I don't sweat and this was one of them. Well,yesterday afternoon she broke out in them again. A little more severe and they lasted a little longer. My doctor was out of the office, spoke to his partner and we both decided that since I had an appointment in place for this morning that we would stick with that plan and give Benadryl if needed. I opted not to give her the Benadryl because she didn't seem uncomfortable and I hate giving her things she's never had before. Benadryl being one of them. She slept well last night, woke up happy, no hives. 2 hours later , right before we are ready to go to her appointment ........ hives. Big time. Get to the office, joke around with her doctor. Saying , you know Zoey , there's always something. Me thinking no big deal right? WRONG!!!! He thinks her body may be having an allergic reaction to the Topamax. You know, the medication that has been her miracle. You know, the medication that has allowed her to be happy and seizure free for almost 3 weeks. You know, the medication she ABSOLUTELY needs to allow her to develop in the forward direction. Yeah, that medication. Well, if you could have only seen my face. I literally said, no way, she needs this medication, she can't NOT be on this medication. He said that some of the seizure medications are notorious for this. Even though she has been on it for this long. The body can set off a reaction at anytime. I really cannot believe this is happening. How can this be happening? Could this child catch a break for more then a few days at time, please. Is it too much to ask for? The plan is to wait it out for the weekend and then we have an appointment set for Monday morning. Till then we need to put ALL of our prayers into high gear. Pray that there is another explanation to it. Maybe some type of reaction to the contrast they used for her procedures this week. Maybe the sedative. Maybe a virus. Maybe even the Pedisure we have been supplementing her with. Anything else BUT the Topamax. I am pretty angry right now. Angry we enter into yet another weekend unable to just BE! Instead another uncertainty. Another thing to have to worry about. Another shoe waiting to drop. Maybe it already has. My Pediatrician even said, with any other kid he would not be as concerned, but this is Zoey. She always manages to do things in her own unique way. If there is a .05 % chance of something ,then that's what Zoey will fall into . Often not on the positive side. I am extremely disappointed. Good thing Zoey can't understand a word I am saying,at least not swear words, because the things that spewed from my mouth,on the car ride home, weren't pretty. I cannot even imagine if we have to take her off the medication. Then, I suppose the possibility of surgery becomes a much, much bigger consideration. For now I have to try and push this aside. Let go of my intense anger. Useless. Not helpful. Instead I go into prayer mode. Won't you do the same?

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. 

I'd prefer a beachy destination

Well, tomorrow begins another leg of the journey. Another chapter in the chronicles of Zoey's amazing story. Time to venture off she and I, into new and uncharted territory. Time to put our trust in the bigger plan. "You saw me before I was born. Everyday of my life was recorded, in your book, every moment was laid out before a single day passed." Psalm 139:16. Time to put those words into action with the knowledge that no amount of worry, surmising, hoping or wishing will change the path this journey will take. Trust and faith has got to be our guide from this point on. When anxiety and worry creep in and try to take over, we must look to this child for our strength once again. She really has been the one who has carried us this year. We have watched her triumph over every obstacle placed before her. She has courageously faced all the unfair circumstances thrust upon her and she has emerged stronger each and every time. These last weeks have been perfect examples. She weathered weeks and weeks of Vigabatrin and ACTH with all their side effects and still pushed through all the pain and discomfort. When the drugs were finally weaned from her body, she proved to us that she was still there, fighting all the while. She did indeed come back, with renewed strength. She regained her resilient spirit and taught us once again the tremendous power held within such a tiny body. We have often been told that Zoey came to us, our family, because of our innate strength and capability. I diagree. I believe Zoey came to us because of our weakness, our shortcomings. She came to us because we actually lacked certain characteristics and qualities. She came to us to teach us. Teach us lessons in courage, beauty, forgiveness, resiliency, faith, love, hope. Tomorrow brings uncertainty but it also brings another opportunity to open ourselves up to new lessons that we may never have had a chance to experience had we not been given the gift of Zoey Grace. She is a gift. A miracle. We have been blessed that the last 4 weeks have been filled with such joy. We have been blessed to have Zoey feel better and look better then we have seen in a long time. My one prayer weeks ago was that we could get Zoey back to a stable, happy place before we went to UCLA and that prayer has been answered. There have been a few glitches thrown in along the way, but what else is new. For the most part it has been an amazing time once again in our lives. We have cherished the moments. Our prayer for this week is that God will grant us peace in our days and the wisdom to do what is in Zoey's best interest. That the doctors that are placed before us, will also have the wisdom to do what is in Zoey's best interest. I will miss the rest of the crew while we are gone but I know the love of each other and the help and support of family and friends will see us all through this next transition and time of change. We have no idea how long we will be at UCLA. We will take it one day at a time. One now at a time. I will miss checking in on all our little blogging friends and their families, as you all have become part of our extended family. The lap top is needed at home, but hopefully Mark can bring it down one evening so I can glimpse at the faces of these other precious children that have touched my life in an incredible way. A huge thank you to all who take time out of their days, even for a minute or two, to check in how things going with us, with Zoey. Your loyalty, friendship and love means the world to us. Your prayers mean the world to us. We are challenged once again to let go. We are challenged once again to relinquish control. To let ourselves be led by a power far greater. I can't promise that it will be easy but I understand I will have no say, once again. I can only be Zoey's voice and the control I give up to the One who sent her to me. I found a quote by Walt Whitman:" The steps of faith fall on the seeming void and find the rock beneath" I feel I have several "rocks" in my life. God. My friends. My family. My husband. My children. My little Zoey. She is my rock. I endure because she endures. This week we endure together, her and I. I truly am the luckiest mom to have been blessed to walk this journey with this wondrous little girl. Tomorrow we venture, my girl and I. I must tell you that I would much rather be packing for a trip say, to Hawaii. But not tomorrow. Tomorrow UCLA. Another day maybe some place a little more exotic. Zoey deserves exotic don't you think? I will update as soon as I am able. Maybe I will get one of my helper bee's to do it for me. Till then, thank you one and all for all you give to my life. I am stronger because of it.

In like a lion, out like a lamb

I know I have mentioned my intense dislike of Fridays before.I am not sure why Friday's seem so difficult. Possibly the culmination of a very busy week and the fact I am more then ready for Mark to be home with us. Our weekends go far too fast, are often far too busy and Monday comes far too quickly, but at least we are all together. Mark and I do errands together and we can also divide and conquer with kids to be more efficient or try and spend one on one time with who ever seems needing it most at the moment. Well, Friday started out wild. Morning craziness. Kids in all directions. Some to school, some to work, some to therapy. Joe had therapy 45 minutes away and to say he was less then a treat to drive with would be understating it.  He pulled a Mr. Hyde move and was more then charming for the therapist when we got there. I am convinced she probably believes I am totally off my rocker where Joe's behavior is concerned. He was agreeable, cooperative and very soft spoken. Give it a couple more sessions and I am sure he'll find himself feeling comfy and his alter ego will emerge. The session ran an hour and half, Zoey was perfectly content just watching the goings on. On the way home we had to stop off at our local hospital for Zoey's routine and one month over due blood work. I usually have Mark take her and call for results because it is the one aspect of all the things that she has going on that really makes me come apart at the seams. I had a pit in my stomach the whole drive. I kept thinking about this fever she has had lately and how she's been so tired and  a little off. Instead of logically thinking she has picked up what the boys have had and that she hasn't been sleeping due to teething, I went to worst case scenario. I don't think I will ever get comfortable with these draws. But I wanted it done before we went to UCLA and before the weekend so we would have results. It's not watching her having it drawn that bothers me,it's the fact that we have to have them done in the first place that I can't stand. So I sucked it up and took her myself. We were in and out of there really quick and the girl who has drawn her several times in the past was there.She is super sweet and she put a STAT order on it, took my cell phone number and called me within a half hour with the results. The results say ....... we are good for another 3 months. Relief. Sheer and utter relief. Finally got home at 1:55 after being gone since 9:45 , picked up Jake , Jacquie came for Zoey's therapy, and then we turned around and went back to Jake's school for a very fun carnival. Just me and my boys and Zoey. Two hours of watching  wide eyed , wonder filled, darling children running aimlessly from booth to booth, having the time of their lives. Jake was very proud, he won the cake walk. Joe , ticked off because he didn't. Zoey just kicking back enjoying the ride. Homeward bound and dinner, showers and one of our favorite movies, The Iron Giant. We topped it off with a piece of Jake's winning cake, cookie cake actually. As an added bonus Jess is home. See how that works when you have as many children as I do?Some leave at times but there's always someone coming back home. Caitlin went to San Diego, Taylor is out with her boyfriend but the one who lives away from home, came home. The boys were thrilled to see her. She did the night time book readings and said their prayers with them. One of the really beautiful things about having had these children so far apart is watching the interaction between them. It is absolutely priceless. So as crazy as the day began, at 8pm ,there are three little ones down for the count. Mark is on his way home and Jess and I get some quality time together, just us two. Well, right after I am done blogging. Down right calm around here. The weekend is packed full of a little of this and a lot of that. Graduation parties, sleepovers at big sisters house, lots of errands and all the planning and scheduling for when Zoey and I are gone next week at UCLA. The week has flown by but all in all I feel, despite the insanity, and maybe because of the insanity, I feel we are achieving some normalcy. Just in time to change it up again next week. But I feel ready. I feel that peace I having been longing for. I have been repeating a verse lately, "I can do all things through Christ who strengthens me". If I can keep repeating that verse I think I can find my way through the days that lie ahead.

A picture is worth a thousand words

Some may remember, a while back I posted that I was the one who often set the tempo for our days. My mood dictated the way things either progressed or digressed. Well, I lied. Joe definitely is the tempo setter around here and today boy did he set the tempo! He did not even set foot out of bed, our bed I might add, when it was obvious this child was going to be a handful. Actually handful is and was an understatement. I did nothing that came close to resembling handling him either, in the least bit. In fact Joe believes he does the handling around here. He has been known to go so far as telling us, "I make the rules, not you. I say the way it goes, not you." That's Joe.  At 8:15 Zoey's O.T. arrived and even she could tell Joe was on fire. From the decibel of his voice, to literally jumping from counter to floor, to couch, to floor, to counter. In about 3 seconds flat. Yeah, Joe was going to make it known early that life was going to be anything but mellow around here today. And so it went.  Joe fulfilling the tempo of our day.  Too many examples to sight for you all.  Too exhausting to even replay them in my mind, let alone set it to words. So, I will leave you with the high points. One in particular. It will say it all. To our landlords, I apologize in advance if you happen to be reading this. We promise to take care of this "accident" (Joe's word, not mine). I was upstairs feeding Zoey. Lately she is so distracted when she nurses that I try to sneak away to get her to eat a little better. First mistake when it comes to Joe. Never leave that child unattended. So in strolls Joe, through my bedroom door, with a jar of maraschino cherries. Requesting an ice cream sundae with a cherry on top. No problem Joe, but bring the cherries down stairs and I'll be right down. A brief thought flashed through my mind. Glass jar. Tile flooring. Maybe I should take the jar. No, he can do it. He's 4 1/2. One minute later I hear, "Mom, it was an accident". Up I fly from my chair. Scaring Zoey with my sudden movement. What did I find you ask? Well, since I didn't hear a crash it unfortunately had nothing to do with the jar vs. tile. Instead, cherry juice vs. carpeting. Light, light beige carpeting. Trailing down my stairs. He said, "I was was just trying to smell them." The rest of the day went something along those lines. I tried so hard to let the voice of a young man who wrote a book called "ADHD and ME", reverberate in my ears. He said something like this, "Parents, we are not out there trying to make you mad. Look at it as a wiring thing." I'm trying, really, really trying. Today I failed. It was a difficult day for Joe and me. As the day ended I sent him up to start his shower. After 10 minutes I heard no shower. I flew upstairs fully intending to find him up to no good. Instead I found the sweetest sight. There was Joe leaning over Zoey's bed, singing to her, right along with her music. Holding her hand. Rubbing her little forehead. Talking so gently and lovingly. My two littlest ones. My ones that struggle each day trying to find their place in this crazy world. My Joe, who needs me so badly right now and I often feel guilty that I'm not able to give him all he deserves because Zoey needs me so much right now too. Because she is smaller and more fragile she ends up with the biggest piece of me. The great thing is, tomorrow is new day. I will try and disperse my pieces a little more evenly tomorrow. The tough thing is I need to spread it to cover not only two little darlings, but four others and a husband and maybe, but not likely, a little sliver for myself. 

*Side note: That fever thing Joe had going on on Sunday, turned into a nasty sore throat. One my Dr. was certain was strep. Turned out not to be. Instead, a yucky virus. Joe was back to himself today, obviously, considering prior post but Jake came home early from school with a fever and napped  and went to bed at 6:20. Zoey was a little off on Monday but we discovered two top teeth trying to pop through that explained it, however and this is a big however, she fell asleep at 7:30 tonight and woke back up at 9:15 and was warm. How warm, I'm not sure. Enough to warrant some tylenol. Please keep her in your prayers as fevers and seizures DO NOT MIX! We are huge germaphobics since Zoeys birth. So much so that we purchase the exact hand sanitizer that they used in the NICU. It stands waiting for any and all who enter. We use it without thinking, at all times. No one can hold Zoey without using it. No one can touch Zoey without using it. We have been so blessed that Zoey has only really had a cold and a little stomach virus since her birth 15 months ago. We are fanatics inside and out of the house about germs. In the beginning it literally was a matter of life and death for her. She is much stronger from a medical stand point now, but we are still vigilant about her staying healthy.  And with a family our size and all we come in contact with on a daily basis, it's a miracle there is not more floating around here. So please say some extra prayers for Zoey. She doesn't need another thing to battle right now, even if it's only a virus.  

   

"life is not measured by the number of breathes we take, but the number of moments that take our breathe away"

Well , it's been 3 weeks since we found out that the ACTH didn't complete the job of ridding Zoey of her seizures forever. It's been 4 weeks since she started having seizures again and it's been 4 months since her seizures first began. Time. We often measure things by days, weeks, months and years. It's just what we do. Zoey has given us a chance to measure things instead, by moments. Something I am sure all of us can pretty much say we have trouble doing. However, when someone so amazing, such as Zoey and countless others like her ,enters your life, you pause and look at time on a whole new level. You soon stop wishing away the days. You stop yearning to catch glimpses of what lies ahead. Because not only will you spoil the magical moments coming but living in the here and now may become unbearable if you knew what was waiting for you on the horizon. Instead, one courageous little girl bestowed upon us a precious gift of right now. This moment. One that can be gone in an instant, but if we are lucky, will be followed by yet another moment. Another moment holding something new. Sometimes that moment may not hold what we were wishing for. Sometimes that moment may hold a pain so deep we will want to trade it for another. But each moment holds what it's meant to hold . No amount of wishing, praying or hoping will change that which has already come. So the moments keep coming. And we thank God for them. A child such as Zoey brings to our lives an opportunity for gratitude, humility,selflessness.To live our moments with the very best we hold inside. The very best part of ourselves. To project and carry that out into the world. To do good in this moment. And when we don't, because we sometimes won't, this moment allows us a chance for forgiveness. Asked for sometimes and given at others. Because one thing we should all know by now, is that we may not get a heads up on when the next moment won't be coming our way. That holds true for any of us. Zoey has taught me that lesson. The frailty of today. The fleeting of every moment. I would never have imagined that a child of mine, so small, so innocent, so young, would teach me the priceless lesson of living in the moment. Zoey's gift's just keep coming. Her moments absolutely take my breathe away.  Moment by moment. Each one more beautiful then the last.  

*We all seem to be getting back into the groove of things since our busy weekend. Time to buckle down in preparation for Zoey going to UCLA. Lots of logistical planning. S.O.S. to all our family and friends. We once again won't be able to get through these moments without you. Asking for help has NEVER been my strong suit. I have had to learn the fine art of giving that up. I do need you all. Physically, emotionally and spiritually once again.  Zoey continues to live these moments seizure free. Simply amazing. She is a little off today. Not sure what's going on with her. Has been sleeping away most of the day. Not like her. Although she has been taking her naps like a dream, this is a bit different. Smiles aren't coming in bunches and she is not particularly interested in eating. Again thankful for the insurance of her g-tube. I'll be keeping a close eye on her. Pray for her that she is just catching up on weeks of lost sleep. She was unable to get her 3 month blood draw due to the ACTH causing inaccurate results so ...... my mind wonders to very" not helpful" thoughts of her numbers being off and her" nasty little blood thing" rearing it's ugly head. Trying to remind myself that after all she has been through that she is entitled to off days. Trying hard to push those thoughts away and get back to living in the moment!

And still more pictures from our weekend!!!!

More pictures of our great weekend!!!!

What a wild rumpus it was!!(and still more pictures!)

Oh, my, gosh!! There would be no way I would be able to encapsulate this weekend into a post, especially without boring you all to death so I will hit the high points. Even with the abridged version I am sure to keep you here a lot longer then most would like. You do have lives and days to attend to, I am sure. I will try to let our pictures do the talking for us. I hope they give a small glimpse into the the prevalent theme of the weekend. That theme would definitely be joy. A lot of pride along with that joy too. And blessed beyond words, definitely blessed. Throw in a little crazy,hectic and insane, at times, and you get the idea. My parents anniversary celebration was wonderful and touching. Filled with laughter and love. How lucky we were to all gather to celebrate such an incredible milestone. We didn't head out for San Diego until about 9:30 pm so that put us at check in at the hotel at around 12:30am, yikes! We forgot Joe's melatonin (natural sleep aid), double yikes, so he talked himself into exhaustion at about 1:15 am. We had two rooms, 9 people and we had to be up and out of there by 7:30 am. Showered, fed, packed checked out. Well, we were in the car at 7:35 am, not bad. Good thing I am a drill Sargent, actually that's the kind version of what I have been known to be referred to as! Everyone was amazing. Especially the little ones. Especially Zoey. What a traveler. After a drive, a walk , a shuttle and another walk, we arrived. The 11th annual Rock N Roll Marathon. Jess' start time was 6:30 am. The older ones, Caitlin, Taylor, Caitlin's boyfriend Danny and Jess' boyfriend Matt decided to find her at one of the mile check points. Her pace made it so by the time we arrived she already passed mile 13 so they headed to mile 22. Matt caught up to her . Spoke briefly to her and she let him know she was a little disappointed, she was off her pace but plugging along.Extremely tired but plugging nonetheless.Mark, the boys, Zoey and I stayed near the finish line and enjoyed the festivities. 1o's of thousands of people. Quite the event. I was so excited, so nervous and so anxious to see her. Well, 4 hrs. 28 minutes after starting her very first marathon, Jess crossed the finish line. We got it on video. All of it. Including a little throw up from complete over exertion. Sorry to be graphic but in some weird way it speaks to the limits Jess was able to push herself to and through. But there she was, my baby. I was so proud of her. I am always proud of her. But today, wow, she was amazing. We headed to the Team in Training tents. What a neat group. All so supportive. All raising money for incredible causes. We took tons of pictures. Savored the moment and then headed out. Joe decided to throw in a high fever to end the day. Threw up in the car as an added bonus.I have no idea what that's about. Tomorrow might tell more. Jake decided to throw up as well while watching America Funniest Home videos because he was laughing so hard. So that was nice. Maybe now that I think about it maybe throwing up might be the theme of the day rather then joy. Kidding. Zoey, well she was a dream. Content. Happy. No seizures. In fact, since I have come to hate counting days and numbers of seizures I have stopped all together. However, I believe it has been almost 5 days or more since we have seen any type of movement or anything. We'll take that. Great days for what they are , seizure free, for the moment. The big kids. They are great too. Everyone was a real trooper. Considering we packed in a whole lot of stuff in a very short amount of time. But it was some really wonderful stuff. I end the day so full. Full of joy, love,awe. I am astonished by the strength and abilities of my family, of my children, on so many levels. Some may pity us at times. Some may feel sorry for us at times. Some might even feel sad for us. But what I really want people to feel is envious of us. Not in a conceited way do I say that. It is in a way that I really believe that through all that God has placed before us over the last 15 months He has bestowed real gifts of opportunity in front of us as well. Opportunities that have allowed us to see things from an entirely different vantage point. A chance we might not have had. To look at life slightly differently. Gifts to cherish and savor, each and every moment we share together and this weekend was definitely one to cherish and savor.