" And now, let the wild rumpus start!" (Maurice Sendak)

It's going to be a wild 24 hours or so for the Needham family. We begin our day frantically getting ready for two drastically different events that are equally  amazing in their own right. We are so excited for both and although it will take patience and preparation, the end result will be well worth it. The day begins with the usual around here. Throw in a bunch of extra errands and whatever else will be thrown our way and it's sure to make for an interesting day. Team work is the name of the game today. Only way it will work. The picture posted is of my parents taken 50 years ago today. Wow, what an incredible milestone, to say the least. What an inspiration. What an example they are of two people who love each other more then anything else in this world. Talking to my mom this morning was like talking to a giddy bride to be. She recalled the day as if it were yesterday. Such joy in her voice. Such pride. Such love. She repeated how incredibly happy she was. How incredibly in love she was. My parents have always put each other first. As a young child you may not understand that concept but to be an adult now, I understand it perfectly. I am one of five. Smack dab in the middle. Life was chaotic but wonderful growing up. My parents raised us with faith and solid family values. Loyalty, kindness, unselfishness, moral responsibility. They did the absolute best they could and the rest was up to us. We would be going on to live our lives and that would leave them. Just the two of them. They made sure that each other was the center of their lives. Each others best friend. 50 years later they still remain each others best friend . Don't get me wrong. They love us all too. Just differently. Which I completely understand. Which I completely am in awe of. They are the very proud parents of 5 children. They are the very proud grandparents of 19 grandchildren. They are the very proud life partners of each other. This evening we will all come together at St. Monica's in Santa Monica. We will gather all together and celebrate mass at the very same church they were married in 50 years ago today. Pretty amazing. Afterwards we are heading to Malibu for dinner over looking the ocean and then the Needhams will pile into our car and head out for a 2 1/2 hour drive south to San Diego. There we will be part of another amazing accomplishment. Jessica will be running in the Rock 'n Roll Marathon. Participants are in the upwards of 30,ooo runners/walkers.  She is part of  Team in Training and she has raised $4,375 for the leukemia/lymphoma society. She runs in honor of her baby sister. Writing those words are difficult for me. Harder then I thought they would be. I could never express how proud of her we are. We can't wait to meet her at that finish line. It's going to be an exciting, emotional, amazing weekend around here. Keep us all in your prayers. Especially my parents, Margaret and Phillip Billings. May they feel how very much they are loved today. And for Jessica. Strength for her body. Strength for her mind. We ask for your  continued prayers for all of us, as we continue this wild, wonderful journey. 

* I have been meaning to post about an incredible young man, who just happens to have Down syndrome, that we watched on "So You Think You Can Dance", the other night. He brought us to tears and once again hit home the message we all so badly want to get out into this world. Check him out under my Learn more and Be Inspired links. His name is Brett Banford and he is nothing short of amazing!  

"Love doesn't make the world go round. Love makes the ride worthwhile"Franklin P. Jones

21 years ago (May 30, 1987) I married My Prince. My Knight in Shining Armor. My Best Friend. My One True Love. Sappy yes but 100% all true. 21 years ago Mark and I said "For better, or worse, for richer, for poorer, in sickness and in health, till death do us part"Who would have known, as we stood before each other and God,all those years ago, that those very words would  prove to test our commitment to each other and at the same time teach us lessons,far beyond what we could have ever imagined. Those words spoken, mean far more to us today, then they did back then.As we exchanged those vows, how could two love struck young people truly know what life had in store for them and how they both would be challenged to live up to each and every syllable. 21 years ago Mark chose me and I him, to travel this journey, to ride this ride, together side by side. The ride has managed to veer off course from time to time. This crazy ride has forced us to leap off at some moments and hold on for dear life at others. This unpredictable ride has taught me more about myself then I would have ever known, had I chosen a different friend, partner and "seat mate". This ride has been filled with compromise and sacrifice knowing that we both have had, in the end, the same goal. A life looked back on, reflected upon.One to be proud of , to savour, to cherish. Although this ride has had it's fair share of tears, those tears have forced us to circle back to one another, to unite, to revisit the strength of the love that brought us together in the first place.To become one, when it mattered the most. I am so proud to be Mark's wife. Thankful that he has so unconditionally loved me,no matter what. That he has forgiven me when sometimes the words that have left my lips ,spoken in the moment, didn't match what I held in my heart. One of my biggest faults. He has forgiven me, always. Mark never fails to see the best in me. Even and most especially when I am filled with doubt in myself, who I am and what I have become. He has believed in me and encouraged me through moments of hesitation,self deprecation, worry and fear. I thank him for the amazing gift and miracle of our children. I look at them and I see him. Beauty, light, and goodness. We came together before God 21 years ago and we stand before God today, stronger, grateful, humbled. The ride thus far has exceeded the dreams I had conjured up so very long ago. More wonder, more joy, more breathtaking. I pray that God continues to guide us as we navigate the remainder of this ride. That we try to not take life or each other for granted and when we do , because we will, that we can pause, take in all that surrounds us and regroup, to truly know it has all been worthwhile. It has been quite the ride thus far Marky, Mark. I would never, ever have chosen to take the ride with anyone other then you. 

And Zoey ......... well not too bad I must say. Status quo. Which I always like.No seizures that we saw today and I THINK yesterday. I say I think because some of these movements can be so subtle and unless they are really in your face you second guess every little thing. So, two possible days with no seizures, pretty wonderful. She still isn't eating her solids really well but I try at least 3 times a day and she manages to eat about half of what I make. We will keep on trying. Therapy is going fairly well also. She works so hard. This child just keeps moving along. Doesn't miss a beat. Rolling more. Trying to get back to sitting some. A little more vocal. So interested in everything around her. That brings me to the picture. That is her VERY concentrated face. She loves being outside but is very serious and very focused. She sticks that chin out and really zeros in on what is in front of her. It is one of our favorite faces she makes. She continues to amaze us. Our neurologist commented that it makes surgery a more difficult decision when you see her doing fairly well. Surgery will eliminate the cognitive dulling effects that the Infantile Spasms bring on and take away but as we see her continue to plow through and develop  and regain despite the Spasms, well, it will be a tough decision. But in the end,we are told, the benefits will out weigh the risks. We will face this as it comes. That is the report for now. Thank you for your ongoing prayers and support. Please keep them coming. 

  

The Needham 2 week mantra

Two weeks from today we will be at UCLA. Hard to believe that we will be beginning yet another new chapter in our journey with little Zoey. It comes with a mixed bag of emotions. I think once we actually get there we will feel mostly relief. Relief in that we will be at a premier epilepsy facility and we can begin to let go, knowing we are in such capable hands. Until that day arrives we have to decide what emotion will define our days. I spend a lot of time defining days it seems. I will be glad when one day the days will just happen and not so much thought goes into them and how I will move through them. We certainly could be and probably will be all over the emotional map but it is our prayer that we will again let go and let God lead us. We want to enjoy the days up until her admission, as a family, savoring each day for what it is. A blessing. Trying not to get caught up in the what if's. What if she is a candidate for surgery? What if she is not? Knowing that none of our guessing or speculation is going to influence the outcome. Knowing that none of our worry or anxiety that we project on ourselves is going to make any difference. The only possible thing worry and anxiety will accomplish is a really stressed out family that missed out on an opportunity to enjoy the days for what they were. So the Needham's are taking on a new mantra. It comes from a poster hanging in Zoey's room or rather Zoey's space, in our room.The poster was given to us by my cousin Victoria who has an extremely cool blog and sells some extremely cool stuff. You can find her here: sfgirlbybay.blogspot.com The poster is a reproduction of a British propaganda slogan commissioned by the British ministry on behalf of King George the VI in 1939. Keep Calm And Carry On. Says it all, don't you think? As far as the princess. She is holding her own. We haven't seen another cluster of seizures since Friday. Thank goodness. Gotta love that. She continues a few head drop, twitch type seizures here and there. Who would have thought we would ever say we were glad for a few" little seizures". See how you bargain and settle when you find yourselves in these surreal situations?She seems to be adjusting to her higher dosage of medication. Still a little sleepy but we think she is still playing catch up from her weeks and weeks of sleep deprivation. She slept from 9pm -4am last night. We sure will take that and she also continues to take 2 decent naps per day. Her schedule seems to slowly be returning to normal. She is still not digging her solids much but we are persevering and trying at least a few times a day hoping her appetite will slowly reemerge again. She is becoming a very distracted nurser as of late also, so that, coupled by her lack of interest in solids makes me happy she still has her g-tube ( feeding tube). I never would have thought in those early days in the NICU I would ever be saying I was glad to have it but it literally saved her life and has been a God send numerous times in the past year. We use it for all her medication and that ensures she gets all of them and when she is not eating well and not feeling well she can be supplemented through it. In fact, there are often times I think how nervous I will be when it is no longer there but know that the day they decide to pull it, will mean she has reached great milestones. Until then, it stays put and I am thankful for it.Zoey seems to be doing fairly good in our opinion. Smiling, playing and enjoying the craziness that surrounds her daily. You maybe can't tell from the picture but her cheeks are "deflating" a bit too. Maybe another indication that her body is returning to her" pre ACTH" state. So there's an update. We had a great long weekend even though Mark worked until 1:30 am on Friday night and worked Saturday until 3pm. Oh the life and lure of Hollywood. Seriously though, he works like crazy and we miss him when he's not here. Really honey, we do. My brother Stephen and his wife Melissa were here from Oregon. My parents are getting ready to celebrate their 50th wedding anniversary so my brother popped down to spend some time with us. I loved seeing him. Whirlwind though and made me realize how sad it is we all don't live closer. But in my new found Heather attitude, I thoroughly enjoyed it for what it was. The week holds a lot of GREAT stuff for the Needham's. I will keep you posted as they happen. With picture of course. Until then, if we don't say it enough, we thank you all for your love, support and prayers that keep us going each and everyday. None of it is ever taken for granted. We are certainly blessed and lucky for the love of our friends and family.

Changing things up a bit

Not too long ago, probably prior to starting this whole seizure fiasco, when people asked me how I was doing I would always say,"If she's good, I'm good." The same thing holds true today. I think the same thing holds true for all families traveling journeys such as ours with children who's medical issues dictate how the tempo of the their daily lives goes. How our children are doing on a medical front is indicative of how we are doing on a mental health front. The last two weeks we have been basking in seeing Zoey doing fairly well considering everything "going on" in her little head. We have really and truly tried to enjoy the moments as they have come knowing they may and probably would take a slight turn. It seems as though maybe that is the case at this new moment. Hard to put our finger on why they might have veered off course a bit. We increased her medication on Friday to almost twice what she was previously getting. We saw a little increase in her sleepiness, not much but enough to notice. Her smiles have waned a bit too and her giggles aren't coming as easily. When you are dealing with seizure disorders such as these there really is never a rhyme or reason to it, any of it . It is all speculation and a guessing game. Last night we saw an increase in seizures and for the first time in almost 6 weeks we saw our first cluster of them. Meaning one little seizure after another.We really,really hate these kind. I'd like to say we weren't disappointed but I would be lying. I'd like to say it surprised me, but it didn't. It's that double edged sword again. Prepared and not prepared. Accepting the course things are taking and on the other hand not accepting that you may be entering back to a place you would just as soon flee from. The truth of the matter is we will never know why this twist or any of the other twists or turns of the last 15 months  have occurred. If we are constantly looking for answers, we are setting ourselves up for disappointment. We want concrete explanations in a situation where there are no concrete reasons. All I know is things can go two ways today. We can slide back to the stressed out, bitter, sad and frustrated parents we have seen ourselves be in the past,mainly me, or we can muster up all we have within ourselves and gather up our strength for what the next moment will hold. We are heading to church this morning. Part of me is a little apprehensive. Today they will speak Zoey's name when they are praying for the sick of our parish. Part of me rejoices because I will find comfort knowing there will be countless others keeping her in their daily devotions. The other part of me will be a little sad. Nothing can quite prepare you for hearing your child's name spoken for those reasons. I pray that Zoey can just stay the course for the next two weeks until we get to UCLA. I am so proud of this little girl. She forges ahead again and  again. She is sleeping much better. Maybe up only once during the night. She is taking 1 really good nap or two small ones during the day. We have reintroduced her solids. You might recall that for what ever reason, again we'll never know why,she decided when she was on the Vigabatrin, that she no longer liked food. But slowly we are getting back into it. She is at least receptive to it instead of turning her head and pursing her lips and sticking her chin in the air. Can you picture it? Cute the way she does it but what a stinker. Zoey lets us know what she wants or doesn't want in her own unique Zoey way. The picture is from Friday. She hasn't been in the exer-saucer in awhile. When she was in the height of her seizures she would be sitting in it and boom, out of the blue a seizure would hit and her little head would slam into the toys and scare the heck out of her. Not a lot of fun. So I resurrected it and maybe she can get a little use of it for awhile. If the seizures don't put a stop to it. Can't she just do regular baby stuff like sit in a saucer and play? Those kind of things get to me. Little in the big spectrum of things but bugs me all the same. So that's the update here. Hope everyone has a safe and relaxing long Memorial Day weekend. Pause a moment and remember the reason for this holiday. The men and women that so selflessly serve and give their lives so we can enjoy the freedom we so often take for granted. Remember the loved ones of those who lost their lives courageously fighting for peace and justice. Memorialize them for a moment today and pay tribute with prayer and thanks for their bravery and sacrifice.      

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.

Familiar feeling(wrote this last night,fell asleep, literally ,before I could push the publish key)

That feeling that I have so been dreading, began resurfacing little by little today. That feeling that I promised myself, if I felt it again, that I would push it down and push it away should it choose to try and creep back into my being anytime soon. That feeling that I so vividly remember experiencing the morning of February 5 th of this year. A feeling that made me believe I could conquer the world but a feeling that cruelly vanished in an instance and was replaced with fear, that very afternoon. That feeling of being capable. I remember that morning so clearly. Each and every detail. The morning was filled with the usual morning stuff. Bed making, lunch making, phone call making, school dressing, laundry washing/ folding, house pick up, baby bathing ,nursing (a few times),dinner prep. and all that before 8:30am. Really. I kid you not. But I didn't miss a beat because I was feeling capable. I often told people that I finally felt as if I could take a breathe.I had no idea that morning that that very same breathe would be sucked out of me so soon. I took Joe to school then headed to Starbucks for my only vise: grande hot chocolate with whip,extra hot. High maintenance I know. But I love my hot chocolate. No coffee for me. Can you imagine me on a coffee buzz? Not what my type A personality needs.So here I am with Zoey in my arms strolling into Starbucks feeling capable and so like a regular mom. Whatever that is. I happened to run into a woman that I have seen at church occasionally. She was taken in by Zoey's smile and we started talking. When I am with Zoey I somehow always get into telling her whole "story". I have so much pride when I talk about all she has overcome. Such amazing feats for such a little soul. We talked a bit and as she was leaving she told me that running into Zoey and I was just what she needed. It gave her perspective. Something she needed that morning. I walked away with a smile. Thinking that Zoey's story and journey, however sad, difficult and hard to understand at times, seems more then worth it every time we meet someone that tells us that they are changed because of her courage and strength. I was so proud of her all over again that morning. We headed home I put her in her chair made her cereal and that's when it happened. A odd little movement that caused me to actually giggle a bit at first, ask her what she was doing" silly girl "but when she did it 6 other times, no longer a giggle from me, more like a gasp. .The day continued on but that capable feeling started to wane . And that made me mad. For 11 months we, she, I, had overcome such adversity with minor bumps along the way. When we hit a bump we rebounded quickly. Sure there were many moments of exhaustion, and balancing and just plain existing day by day but there were few if any moments where I questioned our, her, my, ability to ever be able to do any of it. The surgeries, the g-tube feedings, the oxygen, the abundance of medications and the complicated schedule, the endless doctors appointments. The other kids. My husband. It goes on and on. But I never felt incapable. And after heart surgery, after having to move, after finding one new norm after another, after so many life changing events, I felt even more capable. Not so much after that February day. And certainly not after her Infantile Spasms diagnosis. It all changed. Then came new medication, new routines, new uncertainties. So after four months and a myriad of emotions and more life changing stuff we find ourselves with all that difficult part already feeling like a life time ago. Funny how that happens. Even when we were in the midst of it and we never thought it would let up, it did, it has. As I revisit that February day it feels as if it is almost a carbon copy of how I was feeling today. But I am terrified of feeling capable again. Terrified of becoming comfortable. Just when I become capable and comfortable something comes along to shake me up, keep me on my toes and bring me to my knees. I found myself having to pray a little more today. I found myself resisting the urge to dig out that old bottle of Xanax to take the edge off. I resisted and continued on because not only do I have to but because I WANT to. God has brought to me an opportunity to embrace feeling capable again or to decide to wallow in self doubt a little while longer. I am done wallowing, wallowing doesn't do anyone , any good, ever. So tomorrow I will get up and try not to suppress that feeling of being capable. Tomorrow faced with the unknown I will choose to become my old capable self again. Even in the face of uncertainty. Tomorrow Zoey leads me by example because if she could talk she would tell us never to think we are incapable of anything. That's not allowed because not once in the last 15 months has she ever given us any reason to think she is anything other then capable. I once again owe her nothing less.

The smiles continue

I usually pride myself on being able to function on very little sleep however, today I feel as though things are catching up to me. I have been exhausted since the wee hours of the morning, as I blearily nursed Zoey , nodded off several times, couldn't remember exactly how many times she actually was up or whether I changed my diaper (yes, I actually typed MY DIAPER and left it so you could see the exact extent of my fatigue!) Anyhow, you get the idea. Tired, really, really tired. Zoey had a cardiology appointment first thing in the morning, at Children's, to follow up on her hypertrophic cardiomyopathy, thick heart. I think I could say with almost 100% certainty that we have been to one doctor or another at LEAST once a week, somewhere, someplace over the last 4 months. I hate to even think about how often it has been in the entire last 15 months. Yikes. Zoey is pretty much doctored out. I wish I could say that was going to change some time soon. Not likely. So off we went and unlike the past couple of appointments, Zoey did not have to be sedated. Other times they had no choice because she was so agitated they could not get accurate measurements, so sedation was the only option. This time however, Zoey was a dream. Down right flirty with the technician. Her measurements are the same. Her doctor is not concerned right now as long as there remains no blockage, and now that she is off the ATCH, the likely hood of that becomes much less. Hard to tell when we will see a decrease but her doctor compared it to her chubby cheeks. Strange but true. When those come down we will probably see a decrease in her heart size too. Just an outward indication that things in her courageous little body are returning to normal. Zoey charmed everyone and they all were so pleased to see her feeling so much better. Her disposition continued throughout the day. And my exhaustion continued as well. Zoey and I did a little therapy together. Although her OT comes 3 times a week we seem to be at a stand still, with the seizures having set us back. If it wasn't the seizures it was the meds. Or vise versa. We really are hoping to take advantage of her new energy and hope the reemergence of the seizures and the hypsarrythmia won't side track us further. Her medication seems to be continuing to do a fairly good job. On Friday we will start her on the final dose increase and we hope that might do the trick. If not her neurologist said we have lots of room for increase. She continues with single heads drops a few times a day and a twitch here or there. Not bad but better if they were gone. We will be adding yet another service to Zoey's already full plate: Junior Blind of America. Because of Zoey's stroke she has lost vision in her left eye. Not complete but enough. If you approach her from her left she will most likely not see you coming and once you get past her mid line from the front and cross over she will lose you also. She has done a great job of compensating however she now leans quite far to her left. You can see that sometimes when I post pictures, as well as her left eye is slightly lazy and floaty. Just another nasty by product of that crappy stroke. Makes me mad sometimes. Anyway, we continue to be amazed by her strength and determination. She has been so darling. So interactive. Zoey does not "talk" or babble or really coo at all. She is silent most of the time. But she sure "talks" with her eyes and her hands. Her hands are all over you . Especially your face and throat. I wish everyone were able to experience this love she shares with us in the most heart melting way. Her way. We are as determined as she is. Determined to keep our positive, prayerful way. Determined to seek out the best for her so she is able to continue this path of just feeling absolutely fabulous. Tomorrow I will be calling UCLA and may have some idea where we stand there. Pray for her that she will be able to get in there sooner rather then later. Tonight I leave you with a favorite quote of mine. It is from Albert Einstein. I know, you never pegged me for the "bookish" type. Well, I'm not but I do love this quote."There are two ways to live: You can live as if nothing is a miracle, or you can live as if everything is a miracle." Zoey has taught me to spend my days looking at all I see in this world, as a miracle. Not just in my little corner. Another gift from such a tiny little girl that leaves me a better person each and everyday. Who would have thought? What a lucky and very tired mom I am.

Stringing along some really great days

We seem to be settling into a new norm after the news of last week. Our norms are constantly changing and I fear that might be the trend for quite some time to come. People are so unsure what to say to us and the easiest thing for most is to ask is "How are you?". There is certainly nothing wrong with that and  I know it is so difficult to find just the right words, for I have found myself on the other side of the situation numerous times in my life. I want to tell everyone that we really are doing very well considering the uncertainty of what lies ahead. Our tears have been really few and far between since Wednesday. Joy has replaced that initial feeling of dread. How can we not be joyful when we look at all we are so blessed to have? Especially little Miss Zoey. My niece celebrated her First Holy Communion yesterday and although Zoey's immune system is still compromised due to the ACTH therapy, we headed to church and hung out in the back. The weather was beautiful, my niece Sophie Grace looked beautiful and the feeling of being back at church felt beautiful. It has been 7 weeks since Zoey and I have been there and it felt like a homecoming. It felt very peaceful to be there. At certain times in the past, church has been a difficult place to be. Sometimes it was because I was feeling angry at God and it felt forced or hypocritical to be there. When actually, it was the place I absolutely should be in, at that very moment. Other times it was difficult because I couldn't handle the looks of pity that often accompanied peoples faces when they spoke to us. Or when people were so uncomfortable they said nothing at all. Sometimes church has been difficult because I was always on the brink of tears. Knowing a song or a sermon might send me off crying. Sometimes it was because Zoey wasn't in my arms and I felt a part of me was missing. But not yesterday. Yesterday, church was the perfect place to be. The Holy Spirit held me up straight and strong and God sent me His grace. We also met a mom and her son, Hayden, and they touched us immensely in the short time we spent chatting. A beautiful family inside and out. You could just tell. Hayden is 9 years old and was born with a rare neurological disorder and has had more then his fair share of struggles. But in our brief time together, they became another example of strength and unconditional love that allowed us to say once again "We can do anything." Zoey continued with her abundance of smiles and giggles for everyone. In fact they haven't stopped since Thursday really. It reminded me of when her smile first emerged after heart surgery. As if once again she is saying thank you, I feel much better now. It is a double edge sword of sorts. The ACTH kept the hypsarrythmia away and the seizures away but left her body spent. Now the ACTH is leaving her system, the seizures and hypsarrythmia are returning but man does she feel so much better!! Why can't she have it both ways? No hypsarrythmia, no seizures AND feeling like all babies should always feel, all the time. We are cherishing the moments. I am taking lots of pictures and video. We are really living in the now. We remain confident that God will continue us in the path HE has chosen. That He will bring courage to us in the dark moments and lift us up when disappointment and discouragement has weighed us down. We remain so grateful that Zoey has gotten a reprieve from all the struggles the last 7 weeks had brought her. She has stopped having the larger, tonic seizures and now is experiencing some body type twitches a few times a day along with a single head drop here and there. We hate seeing ANYTHING at all but we have seen far worse in the past and for now we are pleased that her medication seems to be keeping things to a minimal. We remain hopeful that the Lord has great things planned for us and for Zoey and through the letting go of my need to know and to control, we will see our story unfold and marvel in the beauty of  this life. We are good for now, really we are. 

Not much of a break, I know

The allure of the blog. The pull. The reality that this blogging really is therapy. That and the out pouring of love and support that lets me know, on some level,that it would be selfish to not post about Zoey, about us. As pointed out to me quite eloquently in one comment ,people have come to love Zoey and care about us. So here I am. Needing to post. Wanting to post. Feeling that a few days has made a bit of a difference. The reason, I can't put my finger on. Way too short of a time to have processed it all through, however, feeling that for this moment ,I feel some peace. As I wrote to a friend today, I have no other explanation but to believe it has been God's work. Some might say denial of sorts, I choose to say His peace. There is that peace thing again. That quest I have been on. Maybe I actually have come to that place. God' grace. His presence. Maybe temporary, but for the here and now, not a bad place to be. Our little Zoey has found some peace also. The last two days she is a COMPLETELY different child. More of our little Zoey. She has gotten into the groove of the new medication, Topamax. It was only the initial dose that zonked her out. We are getting ready to ramp her up for the 3rd time and we hope she adjusts as well with this increase, as the last. She is sleeping much better. One good thing about Wednesday's visit was that we could end the ACTH 3 days early. No more injections and that feels amazing,for me and her. Her personality change is nothing short of a miracle. She smiles all the time and has started to giggle..... all the time!!! She never giggled before, EVER! She was back to rolling today also. What a difference a few days has made for BOTH of us. We are trying to enjoy each day for what it is. Knowing that the seizures could and probably will get worse. Knowing that the Infantile Spasms can and most likely will, if we can't rid her of them, rob her and us, of all the wondrous things I just mentioned. That is why they refer to Infantile Spasms as a catastrophic form of epilepsy. But for the last two days I have to believe that God is giving to us little gifts and hopefully glimpses of what will be if we can get a hold of these seizures. Which brings me to our game plan. The very day we received the news of the recurrence of the abnormal brain waves , our fabulous neurologist and pediatrician began the process of getting us into Dr. Shields at UCLA. UCLA is one of the premier centers for treatment of epilepsy and they were the pioneers of the Total Hemispherectomy. I heard from UCLA the very next morning,started the necessary paper work, received her medical record number and should know early next week if and when she can get in. We have to pray for when, not if! Unreal the pace at which it is going already. We know that if we can get to UCLA soon we will either include or exclude surgery as a possible option. We also will be meeting with the surgeons at Children's. They have a more conservative approach and would most likely recommend a Functional Hemispherectomy. Meaning only the removal of the damaged portion of her right hemisphere rather than the entire half. UCLA has a more aggressive approach and would more then likely opt for the latter. The sooner we know, the less time we stay in limbo. And everyone knows how much I love limbo. We are all doing far better then we could have ever imagined. That does not mean we are not filled will fear of the future. However, we MUST continue to trust in God, trust in ourselves and trust in this remarkable child who guides us with her courageous and resilient spirit.

*How do you like the ACTH chubby cheeks?

Zoey's Story

Zoey's entrance into this world marked the commencement of a miraculous journey- a journey of challenges and obstacles, a journey of beauty, grace, and hope. She made her entrance with an extra 21st chromosome, and so began our family's walk with Down syndrome. One extra chromosome, a multitude of blessings, trials, and lessons. Her frail body arrived with AV Canal Complete and Transient Myeloproliferative Disorder, a transient form of leukemia, necessitating a lengthy stay in Children's Hospital Los Angeles. It was also determined that Zoey had suffered an in-utero stroke. Despite these initial trials, Zoey flaunted her feisty spirit and persisted on to complete a successful heart repair surgery. In February 2008, Zoey was diagnosed with Infantile Spasms, a catastrophic seizure disorder emanating from her stroke site. After various therapies and treatments, Zoey's seizures finally were brought under control with Topamax, a drug that gave Zoey the upper hand on epilepsy.She is also blessed and lucky to be a candidate for a hemispherectomy if her seizures were ever to return.Strange to call that lucky but it many ways,it is. In October 2008, Zoey was diagnosed with AML M7, Acute Myelogenous Leukemia, and, in true Zoey fashion,she remains in remission after six rounds of chemotherapy. But to limit Zoey's existence and achievements to a medical timeline or the confines of a genetic condition would be the ultimate disservice to our little fighter girl and our God. Zoey is a testament of God's faithfulness and timing. Zoey is a beacon of light in a shadowy world of hardship. She is an illustration of perfection in her innocence and resiliency. She is a representation of all that is good. She is a daughter and a sister who has been the guide for her family and their faith on a walk into the unknown. She serves as the captain of a ship on uncertain seas. She is an expert teacher on living each day and each moment in the present. Though her strides thus far have already been numerous, she undoubtedly has much more to share with this world.

With a Heavy Heart

The day has seemed never ending and it is only 4:20pm. For those of you who did not know we were at Children's today for and EEG and neurology appointment due to Zoey's recurrence of seizures. This was her 6th EEG in about 31/2 months. Too many for a child who is only 14 months old. Actually everything up until this point has been way to much to ask of a baby her age. Today was no different. I absolutely hate to see her cry and cry and cry. I also feel there has been enough of that too in the last year. Too many tears from all of us. From her. The appointment unfortunately yielded a very poor prognosis for Zoey and her seizure battle. And a battle it has been. Just a week and a half ago we had a clean EEG. Today, major chaotic brain pattern once again. 10 weeks of two front line treatments, Vigabatrin and ACTH and both have been deemed a failure. Return of the Hypsarrythmia, the cognitive damaging brain waves, is a devastation. We had such hope. Although Zoey possesses two possible reasons for her Infantile Spasms, Down syndrome and the stroke, the stroke is most likely the culprit. She suffered a Middle Cerebral Artery Infarction inutero, a major stroke, that has left almost 2/3 of her right hemisphere irreversibly damaged. At this point the direction we are being encouraged to pursue would be a Total Right Hemispherectomy. The removal of half of her brain. I know, unreal to say the least. I cannot even believe I wrote those words. Mind boggling. We are trying to process this the best we can right now. There are literally a million things going through all of our heads. The biggest thing, what is in Zoey's best interest? I wish that answer would magically be placed before us because we are at a total and complete loss. Why this child has had to endure any of this and ALL of this, completely escapes me. I will never understand it. Ever. At this point we can do little else but pray. Pray that God has a bigger plan that we cannot see or envision right now. This child is the sweetest, most gentle little girl that you would ever meet. She is the definition of pure innocence. Her spirit carries us through our days and her strength allows us to tell ourselves that we can do this. My faith is weak. My spirit is broken. My ability to see the fairness is clouded. I have promised from the beginning that I will do all I can to see that Zoey is given the opportunity to lead the life she deserves. Not by definition of society or medical science. She defies all of that. Her mere existence defies all of that. Pray for her. Pray for her future. I am sure she will far surpass all expectations and as her Mother I will continue to fight for her with the same strength and courage that she has shown us thus far. I may take a little break from posting for awhile. Just to sort things out a bit. When I began this blog over two months ago I had no idea the life it would take on, the friends I have made and the gifts others journey's would bring to me. I have been amazed by the human spirit. The generosity of strangers and the love of my family and friends. Daily I receive emails and phone calls from families offering their wisdom, support and love. Many of which I have never even met, I am humbled. I am thankful. I am blessed. Till next time, Heather

At days end

Today was filled with a wide array of emotions. The most prevalent was joy. Something that has been quite hard to find lately. That and peace. Strangely enough I found peace at numerous times in the day. Now if I could only come up with contentment then I would feel as though I was on to something. That something might just be acceptance. Acceptance has been something I feel I have purposely avoided. Maybe because I feel it would mean that all that has happened to Zoey, to us, has been okay with me. I am certainly not okay with it but perhaps I have to truly look for a compartment within myself where I place the events of the last year and let them dwell there. Not to forget them but not allow them to define me. Us. Her. Giving room to other places within me so that I can allow joy, peace, contentment and acceptance to cohabitate together more often. Today I found joy in my children. Pure joy. Watching them laugh , their faces full of life and beauty. Today I felt some semblance of peace. Which is again odd because I have lived so often for the last year, in such an unsettled state, that unsettled has just become comfortable. Contentment goes hand in hand with peace. However, I often think of contentment as settling just for the here and now and I know for sure that the here and now is not where I want to stay indefinitely. There has been a bit of acceptance today. A knowledge that if I don't let acceptance in a little more often, then bitterness may totally take over and that would be just another unfortunate by product of the last year. So the emotions of the day were not as horrible as in days past. Sadness, anger and fear did creep in every now and then. Zoey's seizure's were not nearly as bad as yesterday but still present. Maybe not as violent as yesterday but present nonetheless. The dose of her new medication is really low still so I can't really attribute the seizure reduction to that. So I will just take the day for what it was, a better seizure day. She was really out of it though, lethargic. Not our little Zoey . That is the part that made me sad. It is going to be a long road I fear but with faith in God , which I must admit has been difficult at times, with His Grace and His guidance I have to believe He will lead us to the place we are all meant to be. I had a wonderful Mother's Day. A really wonderful Mother's Day in spite of all the uncertainty occurring right now in our lives. I will give the credit to God today, for I have no other explanation . I ask God tonight to continue His work within me so I can continue to find joy, peace, contentment and acceptance more often. Pray for us. Added prayers for Mark. The most recent seizures have hit him harder then before. Watching her struggle has been more difficult on him lately. I feel we are going through a little role reversal this time around . God perhaps is giving me strength to allow him to play out his emotions and feelings. It is a role I gladly take on. Mark has carried me so often this last year and I love him all the more for that. If I am able to keep it together more often so he can fall apart every now and then that I thank God for helping me stay strong. Tomorrow is a new day. The unknown , the uncertain but maybe because of the range of emotions of today I am more equipped to face what ever it has in store for us. I leave you with the photo above . A tattoo not from the wild days of carefree youth. Instead a recent acquisition. One done August 12th 2007, the day before Zoey's open heart surgery. Done on a whim but with no regret. Done as a tribute of sorts. One done to share as a permanent reminder, just as the scar that would remain on Zoey's chest would remain on ...... me. A reminder of peace given to a restless body and the peace I still so often yearn for but perhaps lies before me in the not so distant future.

Mother's Day Reflection and a Zoey update

Eight years ago this weekend, was a weekend I will never forget, for two reasons. First, I will not soon forget it because it was the last time Mark and I went away alone together, and more importantly, it was the weekend that Mark and I decided to have this "second set" of little ones. Those closest to us know the story of how we got here, to a family of eight. Others are probably curious. The majority of people first assume that this is a second marriage. Others think that Jake, age 7, must have been unexpected. When in fact, none of it was unplanned and certainly the only unexpected part was that we would be blessed three times over. In May 2000 Mark and I went away to celebrate our anniversary that was on the 31st. Mother's Day weekend was the only weekend we could work it out for my sister to stay with the girls. We planned to be back early Sunday so I could spend time with the girls. As tradition goes, Mark knew he would be in for "baby talk" the entire weekend. It was just the way it went. Ever since I had my tubes tied after Taylor, in fact from that very first day I had it done, at her c-section, I had regretted it. It haunted me , literally. I agonized and pondered and schemed. How was I going to have another baby in my life, our lives? I felt there was another soul out there waiting. Something more was waiting.Maybe adoption? Maybe foster care? But Mark was always very content. Me, not so much. Eventually I came to acceptance. After all, I had been blessed with three amazing girls. Which was much more then some women will ever experience. Things began to change in late summer,early fall 1999. I was privileged to be part of one families very private, very heartbreaking journey with leukemia. Their story is a story that deserves much more time then this. One I will share on another post because it truly changed me in profound ways. But I will say now, that because of their journey ,I saw first hand what life and living were all about. What family and children were all about. I cannot speak for Mark but I think that same journey had a great deal to do with Marks change of mind. A change of mind that quite frankly ,I did not ever think would happen. Mark always referred to our baby discussions as "the talk". So on that weekend 8 years ago Mark said let's get "the talk "out of the way. He proceeded to start it off by saying that he was actually on the same page as me and wanted to see how we could add to our family. Shock was an understatement. Overjoyed was an understatement. By the time we got home on Sunday I felt as if I was in a dream. After almost 10 years we might be having another baby. Unreal.We arrived home to celebrate Mother's Day and the girls greeted me at the door with my present.The girls were anxious for me to open it and what was in it was the statue you see at the beginning of this post. It is called "My Confidence". If you look closely you see a mother and 3 distinct GIRLS and a tiny nondescript little one at the foot of the mother. Tears flowed immediately. The girls just thinking it was only because I loved it, which I did. But to see FOUR figures, to me, it really was a sign of things to come. The next month I flew to North Carolina to have my tubes "put back together" so to speak. I was pregnant the very next month and the rest as they say, is history. A wonderful, beautiful history. I am so blessed to be doing what I have always dreamed of doing ,being a mom. It comes very easy and natural to me and although the last year has been any thing but easy , it has been natural. I am so blessed that God saw fit to entrust me with these precious children To all the Mother's reading this, to my mom, my sisters and sister in laws and to my dear friends and to the mothers who are sharing this common latest journey with me, thank you for your daily inspiration. It is a honor to share this bond with you. May your day be filled with joy and love, surrounded by these great little (and big!) people you have created. You have much to be proud of.

Zoey had a very heartbreaking day as far as seizures go. She had 4 pretty significant episodes. Very difficult to see. Difficult on her and her body. We are trying to adjust to this latest crisis and trying hard to do it with strength for her sake as well as the sake of the rest of the kids. We pray that this little fighter will find her way out of this latest challenge. My sister pointed out to me the other day, that although Zoey has fallen into the lousy end of the tiniest percentile for everything under the sun, she has also beaten every one of them also. We are trying hard to hang on to that. Please continue to pray for our strength. Her strength. We feel so beaten down sometimes. We can only imagine how Little Miss Zoey must feel.

Is the day over yet?

The day went from bad to worse. Zoey went on to have another doozy of a seizure. I once again am back to not wanting to leave her side for fear I will not be right there if something happens.It is how I spent the majority of the last 4 months, up until she stopped having spasms 4 weeks ago. Only then did I start to leave her in her swing or bed or bumbo when I needed to get the stuff that's got to get done , done. Anyway, she was very unsettled most of the day . Held her pretty much all day long but finally she seemed content in the swing. It did not last long. I no sooner set her in and turned my back when Caitlin said " Mom, she's seizing!" Okay, not to be over dramatic but I do not think I will EVER get use to these types of seizures. They don't last long but man are they ugly. Poor sweet baby. She cried and cried. In fact she cried for 2 hrs. straight. The stress level in the house reached monumental proportions! Mark brought home dinner at around 8 or so , which was nice. Late dinner. Late bedtimes. Just winding down at ..... 11pm. Zoey is finally sleeping and I should take advantage and head there myself. Hard to tell when she will be up again. So off to bed I go with a very heavy heart. Weighed down with questions that I know I may never receive answers for. Fearful of the future. Unsure of my ability to once again carry on like this is just normal, everyday stuff. Tomorrow I am certain I will rally again, as usual, but for this moment I am just sad. Plain and simply just sad. Pray for us. Pray for Zoey. Send all you have her way. Our way. We could sure use them. She could use them. Keep them coming. It is about all I can cling to at the moment and it is a very weak grasp at that.

Dealing with the aftermath

There is a bit of a lull in the craziness for the moment so I thought I would give those wondering, a quick update. Although no post of mine seems to ever be quick once I get started. Little Miss Zoey first. She is alright. Not bad, not great. Just alright. Extremely tired. We think it is because she is coming off the high dose of ATCH and her body is saying, "HELLO, I am exhausted from weeks and weeks of nothing that resembled sleep!" The new epileptic drug does have a sedative component to it but since we just started it last night that probably has no bearing at this point. We will most likely hit that in a few days. To be honest, as much as I do not want her laid out so to speak with a drug, I will welcome some respite to her body for some much needed rest. She did have another seizure this morning. Nothing too terrible that we could tell but any seizure is pretty terrible at this point. She is stingy with her smiles. They are few and far between. You can just tell she feels like garbage. My heart continues to ache for her and it is my humble opinion that she should really be cut a break. Why is it I feel that just is not in the cards any time soon? The rest of us? Managing. Caitlin was holding her when she had that first nasty seizure the other night and I felt so bad she had to experience that. She is okay now but it truly took a toll on her. Mark is Mark. Trying to be optimistic for me. Trying to be strong for me. He remarked to me the day before this latest fiasco, that it is not that he doesn't feel the same things I do, or think the same things I think but he said if both of us were in the same place where would we be? Unselfish of him. Then reality hit as I saw him with Zoey in their favorite spot, the shower, sobbing and telling her how much he loved her. That just about killed me to witness. Finances continue to plague us, so that is added stress to him. Thank goodness he loves his job, works for a great company that is very understanding but ....... it is still Hollywood with demanding clients , show deadlines and ungodly hours. He so wants to be home more but it is just going to happen. But no complaints from Mark. Ever. He just keeps doing what he's got to do. The kids. Jess just finished up her Jr. year at Pepperdine and is now living with a few friends in a townhouse. I miss her daily presence in the house now that school is out. But at the same time am so happy that she is happy. Continuing to spread her wings the way it is suppose to be. Caitlin just finished up her freshman year of college and continues to balance life in spectacular fashion as usual. Proud beyond words of that child. I hope I tell her that enough. Taylor is getting ready to wind down her junior year of high school. She just finished taking her SAT'S and her AP tests. Should be relatively smooth sailing the rest of the year and then , yikes, college applications before long. She also is juggling school, her job and life so effortlessly. They all are enthralled by their younger siblings beyond any words I can come up with. Miss Zoey the object of most of their adoration as of late. They too are full of worry for her but seem to be handling it fairly well. The boys. Boys will be boys. Some more then others, Joe being the focus of that statement. But all in all just trying to let them be as little effected by the most recent events as possible. Me. Well, I am far better then most would have thought this time around. I almost expected it. I find it better to expect the worst and be thrilled if it turns out otherwise. That does not mean I am not mad, sad, angry, scared, stressed and quite frankly really fed up with Zoey getting nailed with yet another thing. But I am handling it. I remember someone saying to me as we were winding down to last weeks of the ACTH, "There is a light at the end of the tunnel" Well, it caused me to recall that very same statement I read on a "ZOEY"S FRIENDS" blog ........ same beginning however the end part had a twist. "There is a light at the end of the tunnel but I had no idea it was a train. " Well, a full on locomotive just hit me and maybe, just maybe, I will survive.

Where we are right now

Heck of a 24 hrs here at the Needham's. Zoey had a pretty restless night after her seizure last evening. She managed to string 2  1/2 hrs together early this morning, thank goodness. Her body is so spent. It is so very heart wrenching to see. We spoke to her neurologist this morning and we are in agreement that probably what we are seeing are tonic seizures. Feel free to google it. It's not pretty. These are nothing like what we saw with Infantile Spasms. Way scarier! Our plan of attack is this... We will see him next week for ANOTHER EEG. Never dreamed we would be having one again so soon. So we will see what that shows and go from there. In the mean time he is reducing her ACTH again with the plan to be finished with that a week from friday. The plan this morning was to pick up another anti-epileptic medication, Topamax, to have on hand in case we saw another tonic seizure and unfortunately she had another one a little bit ago. So we will start Topamax tonight. I am in complete and utter disbelief that we are dealing with such a major crisis this soon. That SHE is dealing with another major crisis so soon. The really sad thing about these types are that afterwards she cries a cry we have never heard before. A help me I'm scared kind of cry. It absolutely breaks my heart. Totally and absolutely. So, this afternoon we start yet another drug to the ever growing list of unnatural substances placed into my 14 month old babies body and I have no other choice but to accept it and move on. I am not as scared yet, as I was when she began her seizure disorder in February. I feel more prepared and more educated, unfortunately. I feel bitter though. Like I lose a little piece of myself each and every time we are faced with a new challenge. I feel angry at God. A feeling and place I have dwelled in far too much over the last year. Faith and hope feel a bit elusive at this moment. But I will do as I have done so many times on this journey. I will continue forward for the sake of Zoey and the rest of my children. They are the only reason I have not crawled back to bed everyday and pulled the covers over my head, never to be heard from again. I go foward because I have to.

Disappointed beyond words!!!!

Well, it is 10:45 pm and poor Miss Zoey just had a seizure. Kind of a scary one at that. My worst fear just became a reality. I cannot believe that on day 5 of a reduced dose we have seen a return. How disappointing to think that my child has had to endure 6 weeks to hell and back for....... nothing! I am absolutely not scared. I am ABSOLUTELY pissed off!!!! Sorry, but true. I need to ask all you believers out there to pray for us because I can feel a crisis of faith right around the corner! Pray for this child and pray hard. God's purpose becomes a little more foggier to see the deeper we go into this. We have just put an email out to her neurologist and we are trying to get a hold of the neurologist on call tonight. Don't know what they can possibly do at this time of night but I will not sit by for one day, one minute, until I know I have absolutely exhausted every avenue to rid her body of these awful things for good!

Reality check

Tonight I hugged Zoey just a little bit tighter and a little bit longer before I laid her down to sleep. Tonight I kissed my boys goodnight and cherished the fact that I am able to watch them grow and thrive right before my eyes. Tonight I gazed upon the faces of my beautiful girls and marveled at how blessed I am to have seen them evolve into these kind, loving, selfless, human beings. Tonight I was given a reality check. Again. A lesson not to ever take this life we have with our children for granted. For one moment. The lesson came at the expense of a precious family who had to say goodbye to their far too young, baby girl. An innocent child who came into and out of this world fighting but all the while touching the lives of so many. Her time far too short but her gifts to those she left behind, ones to last a lifetime. Her name ..... Ava. Her mommy Amy, daddy Nate and brother Kaden will forever miss her. So I ask all of you who read this , even though you may not know their story, to say a prayer for this family who should not have to endure this kind of pain. Courage to travel this new road God has laid before them. A prayer for Angel Ava who now looks down upon all that loved her. Our connection came through this crazy world of blogging. Bonded by a desire to reach out and find comfort and strength with other families that are part of a club that we would just as soon not be in. I feel privileged to have had the opportunity to follow their journey. To exchange a word or two during moments of trials and triumphs. They unselfishly allowed people like myself into their lives , at the most trying and often painful moments. I thank them for that, as their daughter touched my heart with her determination and resiliency. May the Lord bring peace to their weary bodies tonight and may time begin to heal their broken hearts.

Forgot to mention

I added a couple of new links under Learn more and Be Inspired. The one I really want to bring to your attention is The National Donor Marrow Registry. Please consider checking it out. For a few weeks in May they offer FREE kits to those wanting to get on the registry. It is a simple first step of a cheek swab that could potentially lead to you being a match for someone fighting for their life. If you have  ever considered being a donor maybe now is the time to act. There are thousands and thousands of men, women and children waiting for their life saving gift. This program hits home to us for numerous reasons. One , plan and simple it is a beautiful unselfish way to reach out to others suffering and searching for their miracle. Two, because Zoey has Down syndrome and was born with a rare blood disorder, she is at an increased risk of the possibility that some time in her lifetime we will need to reach out to such a program in our hour of need. Three, we were privileged as a family to be part of another families journey with leukemia, that were given renewed hope due to an unselfish act such as this,  from a complete stranger. Their journey became a life changing experience for us, one I will share  with you all at a later, more appropriate time. Thank you to Carey, Chelsea's mom, who brought this great cause to my attention. And thank you to all of you for taking the time to listen once again to my ramblings, this time I hope it was worth it.

Joe loving on Zoey

Today was one of those days that feels like the morning was a completely different day. One of those days that feels so long that I barely remember the beginning part. One of those days that if someone were to try and tell me an event that actually did occurr this morning, in fact was on a previous day, I would probably believe it. One of those days, that as I am writing this, I am pretty confident that those of you reading this are saying," What in the world is she talking about!" Well, it's definitely been a long day. Zoey and I headed to Children's at 6:45 for another sedated echocardiogram. She was a real trooper, as usual.  Sedation at 8:30, echo at 9:oo, with her cardiologist popping in to check things out. Zoey's Hypertrophic Cardio Myopathy has increased again. A little disappointing but not unmanageable. Seeing we are in the process of weaning her ACTH, her cardiologist is confident we should not be seeing any further increase. As long as there is no blockage, we can continue this path with no beta blockers necessary. Thank goodness. We go back in 2 weeks for a recheck. By that time she will be off her meds for 4 days. Hopefully the heart issue will start to resolve and we can file this under, crisis averted. The rest of the day was filled with the usual stuff that makes up the life of a busy family of 8. Physically demanding as well as emotionally demanding. The toll of the last year begins to show in all of us in one way or another, including  and mostly especially, the little guys. I yearn to bring back some normalcy to their lives. And try and try as I might, I feel I often fail. Another one of those guilt's I carry. Sorry, fatigue has caused me to digress. I will not torture you with the tedious ins and outs of the rest of the day. Most come to check in on the little Princess. So, as far as she goes, well, she's going. Exhausted. Not eating her solids ..... at all. Sleep continues to be so-so, even loving her hammock. She is still up every hour or so. Makes for very long nights. I will be glad when her sleep returns to a more normal pattern. She does seem a little less irritable since the reduced dosage. She wants to cuddle more, where as before it was as if it actually hurt her to be held. We are loving being able to love on her more and happy for her to want the loving! She was a little more out of sorts today. Maybe because of the lingering effects of the sedation but it caused me some worry. At one point she made a face and movement that reminded me of when she was having seizures and it truly made be feel sick to think she was maybe having one. I am becoming increasingly anxious about the wean and the possibility of the return of seizures. It is a very real possibility. I need prayer for Zoey, as always, but I ask you to put me into that loop today too. I need people to pray for me to let go and give this to God. To know I CANNOT CONTROL THIS or anything else to do with Zoey and the plan HE has already set forth. Faith and humanness. My biggest struggle. Sorry folks, that's all I have today. It has been a long day.  

Roller Coasters and Sleeping Beauty

A few weeks back I responded to a post by our blogger friends an ocean away. Zoey's little friends mom, commented that she felt that she was already riding a roller coaster, when asked by one of her sons if he could ride one one day. I was immediately compelled to respond as I have come to  know a little about these types of roller coasters of late. My response did not take long to write as I wrote directly from my heart, one mom to another, riding the very same type of roller coaster. I especially thought back to when Zoey was in the NICU. I could be heard on occasion saying "Stop the NICU roller coaster, I want to get off!". I still feel I am riding a roller coaster. Different coaster, same unpredictable ride. I have always disliked roller coasters, ALOT! I am looking more at this point for perhaps something not as wild. Maybe a merry-go round would be nice! I asked permission from our friends to post this because as much as they are my words, my comments are actually meant for them. A personal, private response in a very public forum. If that makes any sense? I never comment unless I feel it heart and soul and mean it heart and soul. I never comment for the sake of commenting. I never want to come across as cliche or pat. Only with sincerity and conviction. Heart to heart. So here it is. And in the process of posting it, if it speaks to someone else then I will be happy. Happy knowing that the precious little extra time I actually have, that I have poured into this new found blogging thing, has not been in vain. Maybe there is actually value to it.

When this roller coaster began, it began it's ascent to places filled with twists and turns we had no idea about. But it began it's  climb nonetheless and was filled with unexpected highs and lows which often left us mouths wide open wanting to scream but unsure if even a sound would be made or whether anyone would even hear us. We held our breathe and at times we were able to level off a bit, feel the wind against our faces and gaze out at the beauty that surrounded us. But just as we caught our breathe another steep drop came upon us, one again unexpected and one that left us gasping for air, asking, pleading, to be let off. The great thing about it is, that as we look around us we are surrounded by others riding the coaster right along with us. All filled with the same fear. The great thing also is that the ride will end and waiting at the end are all the people who love us who will be ready to take our hand and lead us to a different sort of ride. They will say ...." We know this ride has been difficult, we know at times this ride has made you literally sick to your stomach, we know you are ready to get off. We are here for you, ready to lead you to the next ride and because of the roller coaster ride you just rode and SURVIVED, you will be able to see all the magic that awaits you. You will be able to appreciate the new ride far better than most." And one day you may be able to look back and say with pride, filled with gratitude and utter ever so softly, I made it. I rode that roller coaster and made it.

* Zoey just loves her hammock. She is sleeping better. Maybe 1 1/2 to 2 hrs at a stretch at night. Mark checked on her tonight and this is what he found ........ he dubbed this photo "Sleeping Beauty" Her O.T. loves the hammock too as she feels it keeps her nice and compact and her arms and legs close to her body. Otherwise some of these little ones tend to fling them too much out to their sides. I think all in all, a good idea for the princess!

In Thanks and Gratitude

Today felt like the perfect day to say a few long, over due things. I know we have expressed some of it in the past. Most of you will say it needs not be repeated but we feel strongly about reiterating it anyway. Mostly because we love you all so much and never, ever want you to feel that we have taken any of you for granted, for one moment. Being that this is Zoey"s one year "anniversary" since coming home, the timing seemed appropriate. I truly know that mere words could never, ever adequately convey my thoughts and inner most feelings right now. Any words would surely fall short of what I want so many people to know. With that said, if some things are lost in translation, I do apologize. I hope those of you who know me best will know what is in my heart. There is a saying out there, it's origin is somewhat debated, but nonetheless, a beautiful and fitting quote for my purpose. It goes something like this, "It takes a village to raise up a child". I could never have felt this more to be the truth then in the last year and a half. If not for this incredible "village" that surrounds us, Zoey, we would never have made it this far. Truly. It begins with babysitting, to cooking , to cleaning, to gas cards, gift cards and groceries, to our favorite Coffee Bean, to presents and lavish, unnecessary gifts,to massages and pedicures, to phone call after phone call that were sometimes ignored , only because of the place we were emotionally in, to emails with great inspirational links, to every other little and big thing in between. It has been in being there for the other children when Mark and I could not. Physically, emotionally and spiritually. These things more then humbled us and were appreciated beyond words. But it will be the love you so freely gave to us that will remain with us for a lifetime. The pure,unconditional love bestowed upon everyone of us. It came from our friends and families. It also came from strangers. You all took time and energy away from your own lives to give to us in our hour of need. You reached out and reached directly into our hearts and touched us in ways that will leave us forever different people. You continue to reach. You let us be ourselves and allowed yourselves, at the same time, to bear the brunt of our difficult moments. You took our bad days upon yourselves and forgave us for our transgressions. Knowing it was the horrible moment speaking, not the true us. You forgave us. You prayed for us. When we could no longer pray, you did it for us. You even enlisted those unknown to us, to pray also. You continue to pray for us. It is the greatest unselfish deed you can do for us, even now. You all have had a part in seeing Zoey accomplish miracles and God willing you will, along with us, watch Zoey continue the path that God has set before her. You have shed tears of sadness right along with us and rejoiced in the unimaginable. Zoey belongs to all of us. A gift given. One we all received with open arms and open hearts. One who came having to endure more then we felt was fair, but continues to teach us daily with her endurance, perseverance and strength. So on this day the Needham family extends a very humble thank you to you all. We look forward to continuing this journey with all of you and are rallied in hope that one day Zoey herself will be able to reach out to each and everyone of you, embrace you and thank you for herself, in her own very precious way.

Above are two pictures. One is the last picture we took of Zoey before she left the hospital. The other was taken today. It doesn't capture how she has been feeling these days, but we know it reflects the good things to come. (I bet Caitlin five bucks she couldn't get her to smile. Looks like I'll have to pay up.)

Prayers answered

It has been a very long day to say the least. Zoey has weathered it fairly well. Probably better then Mark and I. The up side is that Mark ended up taking the entire day off. Which is unheard of. Gave us some time together. Maybe not all by ourselves  but at least some time . Wish it were not under the circumstances they were but what can you do? We spent some time reflecting on the last year while we wandered the hall's of Children's hospital. Some tears shed. Other moments of laughter to bring some levity to the situation. Our method of coping. Some may not understand our humor at times during this last year but for our family it has made all the difference in keeping our sanity. The day began with the much anticipated EEG. Zoey has come to HATE being prepared for it. All of it. It use to be the head wrap that bothered her the most, now it is the entire process. She was exhausted before we even began and after crying the entire prep time, she was more than ready to fall asleep. As the EEG began I was able to tell right away we were looking at improved brain waves. There is a very definitive pattern to hypsarrythmia , very chaotic, so to see flat smooth waves, the difference is glaring. Of course I am far from a neurologist but after observing 5 EEG'S it becomes easy to see subtle changes. Hook up was about an hour. Then we cleaned her all up , fed her and waited, and waited and waited some more for her appointment. We must say that we love our neurologist and trust him implicitly. So waiting was not so bad. Dr. Kim came in and did the once over , asked us how she was fairing. I believe her glazed over, bleary eyed look spoke for itself. He told us that the hypsarrythmia was indeed resolved and what he believed to still be seeing was a pattern consistent possibly, with that of a child with Down syndrome. He called the areas deltas and his biggest concern was it could possibly be the last remnants of the hyps. Therefore, because she has come all this way he felt better if we continued for another 2 weeks. Because of her heart issue we came to a compromise to reduce her dose from .15 2x a day to .07 2x a day, with weekly echo cardiograms. Her cardiologist agreed. So, we'll keep going for another 2 weeks at which point there will be no alternative other than to stop then. We were elated by the results but continue to be slightly uncomfortable with the heart situation. Hopefully the reduced dose will keep things from progressing in a further negative direction. We asked a few questions about her stroke site and it's role in this whole picture. They are fairly certain the origin of spasms began there. The hope of course is that this treatment has kicked the brain into a permanent new pattern. I struggle a bit with the fact the damaged portion will always be there and there is no guarantee that the lesion, as it is referred to, won't start kicking off irregular activity again. There are never any guarantees on this journey though are there? In life really. On the other hand he reminded me that 25-30% of children who undergo ATCH treatment will in fact fail. I have to take solace in that. For ONCE Zoey fell into the larger percentage! We are so thankful for the news of today. We will go to bed blessed with the outcome thus far and we will continue with our prayers that Zoey will once again beat the odds and triumph over another battle set before her. Thank you to everyone who has prayed for us today. We felt them. We truly did. I leave you tonight with a photo of a very angelic little lady. We purchased this Ambybed, a baby hammock, for her, after seeing on a blog archive, that her friend Dawson had gotten one awhile back. Thank you to Dawson's family for sharing the idea. We hope it brings comfort and peace to her. We hope it might help soothe her and bring rest to her tired body. Tonight will be her first night in it. We hope it brings her sweet dreams. She deserves them.

To wean or not to wean .......

....... that is the question. We are off to Children's. EEG at 8 am. Drs. at 11 am. Should be an all day excursion. We pray for a normal EEG so we can begin to see little Zoey reemerge. Also a  wean would mean no beta blockers for her heart issue. Keep the prayers flowing. A double edge sword of sorts as the uncertainty after the wean weighs heavy on me. I will post an update when we return. Thank you again for everyone's love and support. It continues to sustain us.