A year revisited. Abridged version.

Saturday May the 3rd will mark exactly a year since we brought Zoey Grace home. One of those things that feels like a lifetime ago but in other ways feels like just yesterday. 10 weeks spent in the NICU. 10 weeks filled with uncertainty. 10 weeks filled with trying to balance being there for an innocent, fragile newborn ,while at home, there were 5 other children that needed our physical presence but more importantly our emotional support. The idea of bringing her home was so surreal. We were overjoyed to finally be heading home after watching so many others go before us. What was harder though was watching the families who would not be going home anytime soon and still harder yet those who would not be bringing their baby home at all. Our time spent at Children's changed us forever. Mostly for the better. We found strength we never knew we possessed. We were able to walk out of there daily, even on the bad days and know we were blessed. We met people who we know now, will for sure, be friends for life. The good bye was difficult in some ways as it had become our home away from home. The people there saved our daughters life and were there to love her and comfort her when we were not. In a strange way we would miss it. Miss them. We left full of fears but also full of hope. Fear was probably my over riding emotion. I remember walking through the front door and wondering how in the world I was going do this. I had an urgency to run back out the door with her, to the safety of what I knew. I looked at all the equipment and the medication and the other kids and for the first time, doubted my ability. The first night was so terrifying. The alarms going off. The pumps needing changing. The fear that she might stop breathing. It all was so beyond scary. But we did it. One day turned into two, days turned into weeks, weeks turned into months. We managed to keep her healthy and quite frankly alive and get her to surgery. It would not be until after the heart surgery that the reality of how sick she had been, how weak she had been, became apparent. And maybe if I had known how medically fragile she was on the day we brought her home maybe I wouldn't have been as successful. Maybe my fear would have paralyzed me. After surgery, I would be lying if I said I did not have expectations. I felt that the most difficult was behind us. Behind her. In November we went to the Buddy Walk that benefits the local and National Down syndrome Association. I made big plans to immerse myself in our new found family. I over came my fear of speaking to large groups and after being asked to talk at a fund raiser, I really felt that maybe this might be my calling. I felt like, okay world , I can do this. Bring it on. Then came the seizures. They took me out at the knees and took me to a place that first weekend , that was so deep and dark. A place I had not even visited the entire past year. But here I was in a place I so did not want to be. I have kinda been hanging out in that place since that first week in February. Limbo. A middle ground. A purgatory, if there is such a place. Funny thing is, that the last week of Zoey's stay, she was in a room they referred to sometimes as purgatory. It was off by it's self. A holding place of sorts, for those babies waiting. Are they staying a bit longer or were they on their way home? Stuck in that middle ground. I feel rather stuck there right now. And although I thank God daily that Zoey's is here with us , it is so not where I thought we would be a year later. I never dreamed that after we got past surgery that we would find ourselves at such a point of crisis. Medical crisis. When you look at the list of things that Zoey's little body has been through , if you just take one of them, that would be enough. Instead you have a half dozen of really intense, really serious, potentially life threatening "things" she has seen and conquered. I never expected to be here but as I have heard on occasion, "Life is under no obligation to give you what you expect." It goes both ways though. I never expected a year ago that our lives would be filled with so many life altering moments. Wondrous, magical moments. Through adversity and sometimes despair, we found joy and hope. We found that one tiny child could change the way we lived. Change the way we viewed the world. Change our hearts. Change our lives ...... forever.

Did I fool You?

You probably are guessing that the sleep cocktail prescribed by Zoey's doctor was the magic she needed to get that much elusive sleep? Well, you would be guessing....... WRONG!! In fact I could say for certain that I could have logged on and updated this page no less than every 45 minutes last night starting at 9 pm and continuing right up until now, 8:20 am! I have no idea why it had absolutely no effect last night but worked yesterday morning. With Zoey, it is anyone's guess. Two points I must reiterate.First, thank goodness I am high energy and require little sleep to be productive and second, thank goodness I pumped for the 5 months prior to Zoey's surgery AND that she began nursing after surgery because this kid would be one hungry, frustrated little one throughout the night. I think Mark quite likes it, as it renders him helpless, as he lacks the "equipment" to pacify her ALL THROUGH THE NIGHT. No , that is actually unfair to him because he is always willing to take her and try to soothe her. I am thankful for that but I tell him it just is easier for me and easier on her if I just feed her a bit. Good thing I absolutely adore this child and feel blessed to get our little bonding time together. Don't get me wrong , I still would love a few hours of consecutive sleep. Even two would suffice. Well it is not forever. This too shall pass. And I often remind myself of some of the difficult moments in my lifetime and when you are living in those moments you feel as if you will never forget them or the feelings they have evoked, but somehow as time passes, the intensity of those moments dwindle and soon they become a distant memory and are replaced by other, new life changing moments. This moment will just get filed under, difficult, doable  and done. Hopefully sooner then later. 

Could have been worse, could have been better

Today's doctors appointment did not yield anything unexpected, which I am thankful for as I am not sure how much more of the unexpected I can handle at the moment. After a lovely LA commute of an hour and a half, Zoey and I arrived just in the nick of time for our appointment with her Cardiologist. Actually we saw our usual Echo tech first. Well, actually we saw our favorite  nurse Dacia who was oh so kind to administer Zoey's sedation. It was a simple liquid sedative that goes by the name of Chloral Hydrate and boy was Zoey ready for the much needed rest. At this point she will take it any way she can get it. Even in the form of drugs. For me it actually made me cry. Cry because I had such relief to see her body be granted a little reprieve from the last 5 weeks of total, absolute, sleep deprivation. I HATED that they had to wake her before we left. She was SOOO peaceful. Her body was in a complete restful state and her coloring was so beautiful and calm. Not that red , vessel popping color that we have come to call "the ultimate roid  rage "! She woke up ravenous as it had been hours since she ate. I fed her and awaited the report. Which of course I already had a pretty good inkling. After a multitude of Echo cardiograms in Zoey's little life, including pre-birth, I knew which measurement they were after. I knew we were looking at an increase in thickness but didn't know quite what the game plan was going to be. Dr. Badran, her cardiologist, came in and told me what I already knew and proceeded to call up Zoey's neuro and after some contemplation it was decided to hold off until Friday to see what the EEG says. Zoey's heart condition at this point is referred to as Asymmetric Septal Hypertrophy. In other words a thick heart. Which could possibly lead to a blockage. It is a known side effect of the ACTH but in Zoey's case her heart was already thick and now measures about double what it should. No blockage is great at this point but unless we start the wean process Friday it may mean a beta blocker to keep her from running into problems. Discouraging from the stand point that Zoey fought for 5 1/2 months to get to surgery. Surgery came and went and in essence gave her a new heart and now to think it is less then perfect again is a little scary. However, she continues to be in the best of hands and we thank God for that daily.We know her doctors will do whatever is in Zoey's best interest. We continue to feel blessed that we have been surrounded, this past year, with so many people who have come to love Zoey as their own. Friday will certainly shed some light on how this will unfold. I will continue to let go and let God lead me. This latest journey has been my ultimate test in that endeavor. As I have posted in the past, a quote I try to let resonate in my ears," If God brought it to you, He will see you through it". So, there it is in a nutshell. The upside of the day was that after some discussion they have sent us home with Chloral Hydrate to give to her before bed and maybe, just maybe, it will bring some rest to my littlest wonder. As you can see she is in need of it.

Quick update,more to follow tomorrow

First, a little business of sorts. Please check out the new link I posted under Learn More and Be Inspired. Tera, mommy to Zoey's friend Reagan, posted a great opportunity for all of us to make a difference . They are gorgeous bracelets, that when purchased, kick back a portion directly to the Epilepsy Foundation. Please take a moment to visit my link to the right and consider doing your part. Mother's Day is right around the corner and they are not only beautiful but become a tangible reminder of what people of all ages , fight daily to live with and overcome. Even babies,like Reagan and Zoey and countless others like them who live with this potentially catastrophic disorder. I thank you, Tera thanks you and Zoey, Reagan and all their friends thank you too! Now, a little update. Not a whole lot of change for Zoey the last few days. Feel free to reference photo number one from below if a visual reminder is needed. As well as today's picture which to me and all who know Zoey, just screams"Mom, I am so very tired of this" She is absolutely exhausted. Her eyes say it all. Her and I are off to Children's at 0 dark 30 for a sedated Echo cardiogram. In light of her results last week her cardiologist decided to ere on the side of caution and take another peek at her septum. Hopefully there will be no further thickening as that would open a whole other can of worms that I would prefer not to have to digest. We are coming down to the wire here and we have been so pleased to not have seen Zoey experience any of the more serious side effects of this potent drug. Let's not start now.  Pray, pray , pray for her. As for us, we continue to march forward like the good soldiers we are. Led by the bravest of all ...... a wee little leader with the strength of a giant!

Not very nice, I know.

How would I like it if on my very worst, of worst days, someone decided to post a picture of me for all the world to see? We are not meaning to be cruel, we promise. Caitlin and I were trying our best to interact with the little princess. Trying to no avail to distract her from her constant state of agitation. However, by the looks of the first photo you can tell we weren't doing a very stellar job. Caitlin had the camera near by in case we were able to catch a glimpse of a smile or two. Instead she captured photo number one. A few moments later big sister was able to calm" Zoe muffin". ( Caitlin's personal little nickname for Zoey!) So I moved quickly for fear the moment would pass and I caught, picture number two. Zoey probably resembles photo number one 90 % of the time, since beginning ACTH. We prefer the Zoey we find the other 10% of the time and I know for sure Zoey feels much better when photo two inhabits her being. Today was a rough day. She was really "off". Even in a different way then these last few weeks of ATCH. I think this course of treatment is beginning to take a toll on her tiny body. The sleep deprivation is beginning to catch up. How could it not? She went from sleeping 15 hours a day in a 24 hour period, to maybe 5 hours if she is lucky. Even those I do not believe to be restful hours either. My heart yearns to bring her back to her natural state. I feel often she has spent so much of this first year of life in such a fight, a battle. She has always emerged victorious and I am sure she will prevail in true Zoey form in this one too. It is the road to get there, that I wish could have been kinder. She is a courageous little one and on days like today I once again stand in awe of what one tiny soul is capable of conquering. So, one day I will apologize to my little love for my lack of loyalty  during such a momentous task that is taking all she's got to complete. I am proud beyond words of this child and that too I will share with her each and every day of her life.

The simple things

Zoey has a new trick and we think it's pretty cute! We spend alot of time marveling in her accomplishments. The little strides she makes on the developmental front, be it small to others, are absolutely huge to us. Nothing short of magical. Within the past week Zoey will start to reach for a person that she wants to go to. She reaches her little arm and stretches her little body and let's you know, in her own way, that she wants to come to you or touch you. It is so precious and brings immediate joy to our hearts. It is another way we know ,that Zoey knows, we love her and she us. So last night Zoey woke up after a evening catnap of 15 minutes. Which we will take the 15 as it is more in totality then the previous ENTIRE day. Anyway, she awoke, bleary eyed of course but once she caught a glimpse of Mark, her face lit up and she reached towards him. It really, truly, not to sound sappy, brings you to tears.We managed to capture a moment between a Daddy who adores his little girl and a little girl who absolutely adores her Daddy. It took Mark 21 years and a long hard road to get it but I think he has finally got his "Daddy's Girl". And I couldn't be happier for him!

Sorry folks no smile, I was lucky to even get the picture!

A new day can often bring with it some clarity of sorts. Today is such a day. After my marathon post yesterday I will try to be more concise so those of you that are so kind to check in on us, can get back to your lives. Today is a better day for Joe. Which makes for a better day for all of us. It is amazing how one 4 year old can be so all effecting to an entire household. I had a brain storming session with his pediatrician via the phone yesterday and we have decided that the medications we have tried, all stimulants, are not for Joe. Stimulants for you and I, would see us bouncing off the walls. For kids with different Attention Deficit Disorders they work in the opposite way. For Joe they bring out too much of his obsessive compulsiveness thus making for a very stressed out Joe. What he needs is a mood stabilizer such as Strattera but it is not approved for children under 6. Our Ped. has a large percent of his practice devoted to Special Needs children and when he says he's not comfortable placing Joe on it, then I take that as gospel. So this morning with the minimal of clarity I am working with I have begun to delve into other options. First, another O.T. / behavior evaluation and thanks to our fantastic O.T. that we have for Zoey , she is setting us in the right direction. We are blessed beyond words to be surrounded by the clinicians that care for and love our children. So, it's not much but it's a start. The beginning of a game plan and game plans do wonders for that feeling of just being stuck in that spinning your wheels mode. As for the Princess..... last night marked the worst nights sleep to date. Finally at 4am I had to bring Mark into the mix of things. I usually manage myself. I always have with all the kids. I have felt that he has had to get up and function at work and at least I have been able to be at home. Yes ,needing to be functional but not in the same manner. I operate better sleep deprived then him also. But last night was different. My body just cannot keep up with her milk demands and when I am with her that's all she associates me with. So today I think after I nurse her I am going to supplement her with a couple ounces through her g-tube. We have only used it for meds. for months  so it feels a little like a back slide but maybe if her tummy remains full it will help with her crankiness. Who knows, just a thought. Nothing earth shattering I know but today I feel a little less apt to completely go over that edge rather I am still precariously teetering. Which way I go is anyone's guess.

Heartbreaking

This morning was already filled with tears and this morning they were not shed for Zoey but rather Joe. I have hesitated posting on Joe for a few reasons but today I feel drawn to share a little bit about this charming 4 1/2 year old who is struggling to find his way. Joe is what I have come to terms lately saying, my other Special Needs child. I have hesitated to label him that for unknown reasons. I suppose mostly because I far more think of Zoey as Special Needs then Joe. I hesitate with the term Special Needs not because I fear it but rather I highly respect it. Special Needs children run the spectrum, a broad one. I of course find myself on what appears to be both ends of that spectrum. I would never want to offend other parents with a Special Needs child with what, on outward appearances, appears to be a pretty typically developing child of my own. But the reality of his needs can no longer be referred to as anything other then Special Needs. Joe was born with a disorder called speech apraxia. In a nutshell he spoke not a word until he was 2 1/2 and only made sounds too difficult for the rest of us to even replicate but no words or syllables at all. No real sounds that could be understood, just indistinguishable noises. His receptive language,what he understood, and his expressive language, what he spoke, were on complete opposite ends of the spectrum also. The inability to speak manifested itself in many ways but anger and volatility were dominate. He also, since infancy, has been a horrible sleeper and it has only been in recent months that, with the use of a natural sleep aid called melatonin, that he is , for lack of better words, able to "turn" his brain off. Although he still wakes in the night and is a very restless sleeper. His speech has primarily caught up and he has minimal lapse in articulation. He is behind in recognition of letters and numbers and most likely when it comes time to read he will need extra attention. He also cannot write but only a few of his letters can barely write his name. So we are looking at some learning disabilities he will face has we move along. Just by products of the apraxia. However, other effects left behind because of the apraxia are very apparent. Because we know Joe had a wiring problem we knew about, the apraxia, it makes sense that if there is a "glitch" in the brain there could be more issues to contend with. In Joe's case, severe ADHD. More specifically,Oppositional Defiance Disorder. The exact symptoms too complex to explain here but suffice it to say, difficult to find the proper tools and medication to treat it with . Succumbing to medication was very difficult for me. I felt like a failure once again. The meds. can help in some areas but make other areas worse. Like obsessive compulsive tendencies. The balance is so delicate and it will probably be years before we find the right combination of things to help him on his way. Even at that it will require regular "tweeking" to compensate for the ever changing brain. Especially in a growing child and adolescent. I recently read a article about a freshman in college at Berkley who wrote a book called ADHD and Me. I am inclined to read it as it may give me some insight on what goes on in Joe's little head at times, from a first hand perspective. It may help me to help him, as I often feel completely helpless. Once again.It is absolutely heartbreaking to watch this child vacillate between carefree child to a child unable to control his temper and emotions. He acts out physically and is extremely impulsive. Unable to decipher between right and wrong and mostly, safe choices versus unsafe choices. It is a scary proposition to even let him out to play as his impulsively is a real danger to his well being. The medication is heart breaking to watch take effect. Heart breaking because it becomes apparent how much he needs it but when you see something actually taking effect on your child's brain the stark reality of things slaps you square across the face. I yearn for Joe to not have to struggle everyday , every step of the way. We are keeping him back from kindergarten in hopes we can give him the gift of another year to get all his things in check so when he does get into the public school system it can be as positive as possible. He is an extremely bright child. Most of these kids are. He is funny and friendly and engaging with everyone. He just plain and simple cannot control his little brain. Heartbreaking. On some days I am much more well equipped to handle Zoey's needs then Joe's. Some days I feel far more incompetent facing the challenges of Joe versus Zoey. Crazy I know but true. I sent my little guy off to school today heartbroken to once again not be able to help one of my children. My heart aches for these children's struggles and I pray daily for the wisdom and strength to continue to do for them all I can to ease their way. As far as Zoey goes... She is still a very unhappy little one. She does not sleep during the day and at night she is up every hour or so. She is completely wiped out. Her cardiology appointment went alright. The cardiomyopathy,thickened septum, we have been keeping our eye on, has increased in size a bit so that will require a sedated echocardiogram next Tuesday. As well as she will be having another EEG next Friday to see if we can begin the weaning process of the ACTH. Should be a fun week. Continue to pray for me as today I feel a little like a mom on the edge.

Please, for me.

I seldom post twice a day but I felt compelled to add a link to my 'learn and be inspired' section. So those of you who are visiting please check it out to the right. It is a speech given last year by an incredible high school honors student from Illinois by the name of Soeren Palumbo. It is a speech that needs to be heard and shared. A speech that needs to be really read and digested. And then maybe reread again. It is a speech which can make a difference. I have a new favorite quote that I have been known to slightly over use lately. It's origin, Gandhi. It goes like this, "be the change you wish to see in the world" This is just my little part. Now, I also want to say that the "R" word that the speech is about, is not, and has never been allowed in my house. EVEN before Zoey. So please, for me, take the time and read it. Talk to your children about it. Even your friends. Most of the time people mean no harm by it. It has become habit and flows from tongues easily without thought to the way it can be received. Society has even stepped away from using "retardation" when referring to it in clinical terms." Developmental delayed" has become a more accepted phrase. As for my family, we seldom if ever, hesitate on commenting when we hear someone use it. It's  not easy, trust me. But it does become easier. We don't mean to embarrass, we just are trying to bring awareness. Could you please do the same?

Sunday check in

Mark just left for church with the kids. Sad for me as I look forward to that time and place to be all together. For the duration of Zoey's treatment and for several weeks later, her and I must stay clear away from crowds due to her suppressed immune system. Church will wait. I have just laid her down in an  attempt to try a nap because yesterday she did not sleep, for even a minute, all day long. Not terribly miserable but certainly not happy. I managed to get 3 bowls of cereal with fruit or veggies into her and that made me, and I think her tummy, feel good. This morning however she wanted no part of it. I'll try again later. Sleep was so-so last night. Up three times... I think! I just kinda nurse her and lie her back down and if she stays quiet I count myself lucky and try to get a little more sleep in. Thank goodness I operate fine on minimal sleep. My dreams were crazy last night. They all involved Zoey and medical issues of one kind or another. One had to do with her kidneys, which is weird because it's the one system she has never had problems with. Knock on wood. The rest were all over the place. I think if I had to analyze it, I would venture to guess it is due to a few impending things on the horizon. One, she heads to the cardiologist to check on her heart tomorrow. I'm anxious to find out if her "thickness" has remained statue quoe. Let's all pray it has. I hate that it was an issue to begin with as it becomes more of a reality that we could face a complication / side effect in that department. The second issue is her next blood draw. She is due in a few weeks however one of the things this ACTH can do is mask potential problems due to it's steroid type influence. Meaning, her marrow could be up to no good and we wouldn't be able to tell. Soooooo, we put it off by a month or so and pray there is no change and we have risked losing precious time. I believe I am in my "When is another shoe going to drop" mode. I am also extremely nervous as we draw closer to the wean of the ACTH. Weather or not we see reemergence of her seizures weighs heavy on my mind. I have absolutely no idea what the percentage for recurrence is or the time frame. Quite frankly I don't think I want to know. Zoey is in a symptomatic category for her infantile spasms. Meaning we THINK we can pin point a cause. One is being Down syndrome and the other is her stroke . Both of which are NOT going away. So I often wonder if those things essentially caused the seizures how can we be certain they will not return because those two issues will still be present. Follow me? The bottom line I guess is, we can never be certain of anything. It becomes a clear case of me relinquishing control once again. It becomes a clear case once again of acceptance of where we are right this second. Tomorrow will at least yield some answers in how her heart has weathered the latest dose increase and the rest I guess I  will try to take as it comes. My biggest challenge. Today would have been a good day to be at church but I'll do my ritualistic shower praying instead and that will suffice. I hear Little Miss Zoey beckoning for me. I think that was a 30 minute siesta, not bad, I'll take it. My best to all who drop by and check on us. Just knowing people take the time to check in really means alot to us and please keep those prayers coming not only for Zoey but for any of her other little friends you may be keeping tabs on. We all appreciate it immensely.  

My Friday felt like a Monday

I should have had an inkling the way the day was going to go by the way it started. Fridays across the board for me are never great. They are a culmination of a usually very long week. Most of those close to us know Mark works crazy long days. He drive 100 miles a day, to and from work and that's LA traffic miles. Meaning, it is going to take you longer to get to where your getting to then say,  if you live and worked in rural upstate New York. (random place to choose say some, but that's where we are from originally!) A normal day sees Mark home between 8 or 8:30 pm. So Friday's are one step closer to the weekend to have Mark around as company for me and a respite for the kids from a, how shall I say it,um, a crazy, stressed out Mom! So Friday begins with our 16 year old heading out the door for school and back in as quick as she left. Her announcement, " Dad, either someone stole my car or it's been towed." Oh,my gosh I am thinking, it best be stolen because $200+ dollars is not going to be found on that barren money tree out back. However, as luck would have it,or not, it was in fact sitting in a tow yard 10 miles away. Then came the logistics of getting her to school and getting the car and just taking care of the regular crazy stuff our mornings bring. Of course the tow company didn't open till 11am.  And why should they? Poor guys have been up all night perusing the streets looking for unsuspecting vehicles. Please take note of intended sarcasm. On to attending to Miss Fussy. Zoey had been up numerous times last night. Poor thing, poor mommy. Today was glucose check day that I do at home and as Friday luck would have it yep, you guessed it, positive for sugar. On the phone to the neuro and the pediatrician to figure out what's next. Thank goodness they are both highly accessible. Up to drs. at 10:30 with a continued Miss Fussy. A glucose prick later and we find out her numbers are alright for now but will require closer monitoring. A quick check over and we are sent packing . Home to the usual mommy stuff. Which really I never mind. I am probably one of the few people around who really doesn't mind laundry. Cleaning either but as of late what I wouldn't give for a magic fairy who did it all for me. Anyone know of one?  After constant nursing of Miss Fussy, every hour sometimes, after attending to the necessary household stuff, after lunches, school pick ups and a park outing squeezed in there, it was back up to the Drs. for another Needham clan member. Today our Pediatrician actually said he was thinking of adding a wing just for the Needham's. I would have laughed had it not been 6:30 and the day was far from over. The boys were home with Caitlin and I called to have her stick them in the shower. This is what I walked in the door to...." Mom, Joe just peed in the laundry basket" screamed Jake. Are you kidding me? Joey is, well Joey. Often hard to describe. but today  I saw a description on a friends blog of her son and today it fits Joe to a tee. Joey is..... full of piss and vinegar. Literally. Today, very , very appropriate. Not very nice but very appropriate. Bath, bed and books and the littlest set was in bed. Older ones are busy doing their own thing. One home, two not and Mark home at his regular time, 8:30. To finish the kid portion of the evening I had to" stick" my poor little Miss Fussy when she was sound asleep. Broke my heart but had to be done. She only slept 1 hour today and fell asleep before I had anyone to help me give her her injection. Felt like a perfect end to the way the day happened to begin . Could have been way worse of course. But needless to say I am glad the weekend is here even if they are fleeting. Monday will be here before I know it!

We all should be as lucky

At 19 weeks in my pregnancy I was sent for a level two ultrasound due to my "advanced maternal age", I love that term! While there we found out that our 6th child was to be a girl and we also found out she had a hole in her heart. At first we were assured it was probably nothing, come back in a few weeks and they would rescan her little heart. 2 anxious weeks passed and after the second echo of her heart it was determined that this was not just a hole but a serious heart defect called AV canal complete. The seriousness of which was explained to us with an added question of how we wanted to proceed. Proceed? What were they asking? It took just a moment for me to realize that they were asking me if we planned on terminating. An actual feeling of wanting to be sick waved through my body as did the desire to get up off the table and bolt out of there.I managed to pull myself together wipe that look of shock off my face, to ask a few more questions. They continued to explain to us that this particular defect was primarily found only in the Down population and the chances off it not pointing in that direction were... slim to none! Now they asked, did I want an Amnio? No thank you. Why? Because I did not want to be that 1 in 200 that end up miscarrying therefore giving her no chance at all. Am I sure? Yes, lets move on people. This banter could have continued on and on. I leave the office. A bit shell shocked for sure but determined to face this the way I have faced every other thing in my life. And I did. WE did. We embraced the idea of raising a special needs child. We were far more concerned about her heart defect then anything else , and that proved rightly so. We were very open with everyone to share what we believed we would be facing come March. I wanted others prepared more then myself and I mostly wanted people to see the way we were handling it so come March we would not be encountered with looks of pity. Better said then done as we still got that and a whole lot more. I could write a book, literally, with the kinds of things that have been said to us, our children our family over the last year. Yes, some beautiful, others, well, not so much! One thing we heard often after she was born was, "Do they know how high functioning she will be?" Now, most said this out of just plain not having a clue, they meant no harm but lets be real here, do any of us know how any of our other children are going to function on an intellectual level? Even my mom , who I love dearly said "I just know she is going to be high functioning" I know she said that out of love for Zoey. Wanting her to be the best she could be but did it or does it really matter? Zoey is going to be exactly who she is meant to be. I often look very intently at her while she's playing or swinging or when we are talking together and even I wonder what she understands. We treat her the same as we did our other babies. Well alright, actually she is absolutely spoiled and has never cried herself to sleep, ever! We progress with her and her future with the same hope we have for any of the others , to be happy and healthy. Although the healthy part has been a bit elusive . One thing I absolutely know is she knows right now, all she will ever have to know and that is that we all love her more then mere words could ever, ever describe We know this by the way she looks right into our eyes when we hold her. We know this by the way she gently touches our faces as only Zoey can do. Those of you that have held her know exactly what I am talking about. It is as if she is mesmerized by our faces. We know this by the way she touches our throats as we speak to her, she is comforted by the sound and feel of our voices. We know this by the way her smile lights up when any of us that adore her enter a room. Yes, we have had to alter plans and dreams a bit. We have had to change our expectations a bit. Mark and I have had to talk about the day when we will no longer be here to care for her but then out of the blue be told by Caitlin, maybe God planned on us having such an age difference so they would be here to love and protect her instead. I know for sure, at the tender age of 13 months that Zoey knows all she will ever need to know. She knows that she is totally, completely and unconditionally loved by us all.  

*Zoey continues to be utterly and absolutely miserable. We resurrected the baby swing and that does bring her body some peace. Night time is not bad. She is usually up once, maybe twice to eat and go back down. Hard on me as Zoey has always slept through the night. We were very spoiled, I know. I do worry that she is in actual pain and that I am missing some other serious issue but logic tells me it's the medication. Continue to pray for my baby that she finds her way through this and is on to better days. 

Terrible,horrible ,no good,very bad day!

Helplessness is defined as" powerlessness revealed by an inability to act." That definition pretty much defined my day yesterday. What that word or rather that feeling did for me was to bring to the fore front of my memory some very distinct images from our life this past year. Memories that I did not necessarily want to forget, for they are important parts of the journey, but they are memories that immediately evoke such feelings of sadness and despair. For instance the memory of my 5 hour old baby being brought to me for me to see her one last time before she was airlifted to a hospital more equipped to handle her fragile state. The memory and sound of helicopter rotors and the actual smell of fuel as she was medi-vaced away as I lay in a heap on my hospital bed unable to do a thing as I had just had a c-section. The memory of knowing I was not able to hold my 10 hour old babies hand as she went through a rare procedure called a double exchange that in essence transfused her ENTIRE BODY......TWICE. The memory of seeing my child for the first time 5 days later and all I could do was actually lie across her isolette and cry. The helpless feeling of not being able to hold my baby, to comfort her, because she was hooked up to so many machines. The helplessness that occurred with each passing moment as diagnosis after diagnosis just kept being hurled at you day after day after day. Yesterday I was reduced to such a helpless state again. As I tried to no avail to comfort an innocent, 15 pound, 13 month old baby, as her body had to once again learn to adjust to yet another unnatural assault. No amount of nursing, rocking, singing, talking, playing or distracting could soothe this child. Her body was in a constant state of stress and rigidness. She was inconsolable the majority of the day and at one point as she lie flailing in my arms, her eyes wide open, looking directly at me, as if to say," please help me." And I couldn't. That is when the anger crept back to me. How much more must she endure before she is able to just get back to being a regular baby? And yes I say regular baby in spite of the Down syndrome. At this point the challenges that go with that label, cognitively and developmentally seem like a piece of cake. Can you imagine being jealous of people who "just" have a Down syndrome child with no medical issues and are busy focusing on when will they sit or when will they walk? I look forward to that day when our focus can be those things. I realize this ACTH medication is a necessary evil. I realize it is a means to an end however I am absolutely sick and tired of standing by HELPLESSLY watching my child under go one more hurdle. Come on people, enough is enough! Do I sound bitter? Must be because I am. When you have watched your child fight day after day , month after month and probably year after year, bitterness becomes your own worse enemy. The ironic thing is, amidst her horrible day she STILL managed to flash innumerable trade mark Zoey smiles. One was as I sat with my head hung, in tears ,only to look up and see her grin ear to ear at me with a look as if to say "I am alright Mom, I can do this too" I know you can Zoey my love I only wish I had the ability to ease the path a bit, to pave it with all the things you deserve , to carry the load so it no longer weighs down your little body.   Zoey's daily strength is what keeps us all going. Her strength becomes a gift to us . But also comes with a price. Why is it that life's greatest lessons are learned in this way, at the expense of the innocent. When we rattle off the litany of all that Zoey has endured and conquered it is mind boggling. It is more in one year then most people will see in an entire life time. This is where my faith has got to kick in. On these days of deep helplessness I cannot be looking for purpose, I may not ever know the "whys" of this journey, ever. Instead I must look to the sky for strength. When I ask for help from the One who can only give it to me then I will be able to better face these days. I can only hope.

(Sorry Mom, I had to hack into your blog...)

Dear Heather's friends,

This is Caitlin, Heather's second oldest...she has created a beautiful blog, but she isn't the most computer/technology savvy (she will agree with me on this one). I decided to take it upon myself to add a little video so that she can see what kind of stuff she can do with this blog--pictures, videos, all that good stuff.

Today she has already gotten up, taken both the little boys to school, dealt with a very fussy baby who now has a 2nd tooth popping through, gone to an appointment with Zoey's pediatrician and is on her way to pick up Joe from preschool...she left herself signed onto her blog, so I thought I'd leave a little surprise for whenever she comes back and does another post.

This is a video we had on our computer, and it is one of my favorites. It was taken a couple months ago and captures Zoey's personality perfectly. She is so laid back and sweet, and her smile is unbelievably contagious. The tail end of the video catches a couple seconds of my brothers running around at the park. Not quite sure why that's on there. If you go to the bottom of the page and pause/stop the song from playing, you can hear the sound in the video.

It's always kinda funny to step back for a second and watch a video like this and realize, "Wow, that baby has a piece of plastic sticking out of her little belly. And she's got a huge scar down her chest!". But after a little while, you don't notice the G tube anymore, and the scar becomes nearly invisible. It's moments like these when you just smile and are grateful to watch your little baby splash in the tub.

Sorry for hacking into your blog Mom. I'm just trying to add some cute stuff for you. I wont do this again...I wouldn't really like it if you were hanging out on my Facebook.

Let's try and get more videos on here. I'll help you out.

I love you Mom. 

Caitlin

Pull up a chair, get comfy, you could be here awhile!

I usually start the day in the same manner as of late. By as of late I mean , ever since I started this blogging obsession. Did I say obsession, I meant thing, blogging thing. Anyway, I usually check Zoey's special little "friends". See what their day had been like. Find out if I need to say any extra prayers in the shower. Yes, shower. I do my best praying and thinking in the shower. One, it is the only place I get maybe 10 minutes of solitude and two, I think it is a place we are most exposed,no pun intended, to face some of our rawest of emotions. There have been two specific times over the last year that Mark has found me on the shower floor in the midst of what I am sure he thought was an absolute breakdown. It probably was one of sorts. A type of breakdown  where you are crying and no sound comes out. Some of you unfortunately know exactly what I am talking about. Well anyhow, when I check on her friends I am also checking on the families of these incredible children and specifically , the moms. Today I checked on our buddy Sam. He is doing so good. Taking steps and for me to see that, it is nothing short of magical. His moms name is Rae and I KNOW a higher power led me to her weeks ago. I know it. Rae posted about herself today and about a girls night out she just had. I responded to her with some sort of sarcasm of  course but to be honest I did have a tiny tinge of jealousy. Not that she was able to go out but WHO she went out with. They were two friends of hers who have children with Down syndrome and not just children with Down syndrome but children with Down syndrome AND medical issues. How great is that?  What I would not sometimes give to have that. Let me clarify if I have confused you by my random somewhat convoluted way of writing. Not jealous of the medical issue stuff. I am talking  about a few friends who can totally relate to that place you have found yourself in. Strange thing to be envious of , I know. But still a little envious. Now, all my beautiful friends who read this,do not be offended. I love you all dearly , however and there is a however, as much as you try to understand and I in fact DO NOT want you to have to EVER understand, try as you might you could never understand this place. I recently said to someone that I equate myself to an island , surrounded by water and trying oh so hard to keep my head above sea level. When we found out we were going to probably have a baby with Down syndrome we were told of numerous families in town with T21 children. They surely could be a great source of support. But when Zoey came with all her medical issues I felt that I didn't even have things in common with them.We became a sub category of a sub category. That is not to take anything away from those children and families. I am sure one day they will be of invaluable help but right in this moment I feel a kindred spirit with those who have spent a vast amount of  their days just trying to figure out how to keep these kids alive. I know it sounds harsh but it is our reality. We must face that reality daily. So instead of people within arms reach , I have found this comforting community online. It enables me to feel not so alone. It allows me to at least tread water for the time being without being totally submerged underwater.My head remains temporarily above sea level. I had a incredible deacon ,really a dear friend, from our parish who taught me about a thing called "grace period". He described it as that time right after some life altering event has taking place, perhaps a tragedy of sorts,where you are surrounded by the grace of people who love and support you. Before long, because of necessity, their lives have got to get back to their normal. The constant company and phone calls and support becomes less and less. Not because they don't love you , just because it is how it has to be. So then there you are and you want to scream " Hey, remember me, I am still here, here I am, still in this place." So often I wish I had a couple of friends like Rae. They wouldn't replace the great ones I have , they would simply just fill this little place that I often feel to still be in.

You have got to be kidding me!

The weekend was shaping up to be quite an uneventful weekend ,which is fairly hard to accomplish with a family of eight. However, it did  appear we were going to skate by with only minor blips on the Needham radar when , wham! You guessed it, way too good to be true. Luckily catastrophe was averted. Barely. And yes it did involve Zoey. I would be posting way into the wee hours of the morning if I gave you each minute detail so I will try to be as concise as possible and hope I have kept your attention long enough to see you to the end of the post. It all involves her ATCH medication. You know, the one that costs $25,000 dollars a bottle which often lasts 1 week depending on dosage. The one that in late fall was about $1,ooo a bottle but demand and greed sky rocketed the cost. The one, that by the grace of God, an agency by the name of NORD helps people such as ourselves pay their 30 % co pay for each week over the five week course. Yep, that medication. Well, in Zoey's case she is on low dose protocol so a bottle for her should last 25 days. I will not bore you with the math on that but suffice it to say we could comfortably get by without a refill till mid this week and that's with a dose increase. I am the one who draws the meds and administers them and by this past Friday I was not comfortable with the amount that appeared to be left in the bottle. Mark and our wonderful nurse contact with the specialty pharmacy assured me we were alright. By Friday I was pressing the issue and by last night I was freaking! No way would we even have enough to see it through the weekend. Panicked to say the least. Our nurse angel gave us her cell phone number and after hours of back and forth communication, Zoey's medication is, as we speak , on a UPS Critical Air plane and we will have it in the morning. Phew!!! Now the million dollar question? Why was her bottle short almost 2mls. That is a huge discrepancy and come tomorrow there will be an investigation of sorts as to what happened. I have created a multitude of scenarios over the course of the day and none of them were pretty. In hindsight, when we look back at the shipment we received at our pediatricians office that first day, we have some serious issues. Tomorrow we will receive the new package and we will be able to compare each shipment and any inconstancy's we think might have occurred, will be much easier to decipher. So, that's the long and short of it. The story will continue to unfold over the next few days so we will keep you updated. As far as Zoey goes, she is definitely feeling the dose increase, I think. Sometimes it is so difficult to figure out what exactly is the problem with these little ones who can't use their words but are obviously very, very unhappy. Cranky is an understatement to say the least. It doesn't help that she is working on another tooth in a big way. And my good little sleeper has decided to change that up a bit. About every other night she decides to wake up literally every hour. Lovely. Thank goodness she nurses and goes right back down. I am reminded at this moment of something one of my girls said recently, she said "Mom, your post are so long , do you even think anyone even reads them?" Well, I concurred with her on the lengthiness of them and I thank those of you that are able to read them in their entirety without needing to take a break for a cup of coffee mid way through!  

Zoey saw her neurologist today and........

 Dr. Kim was very pleased with what he saw! Today was an extremely long day for all of the Needham's , especially Zoey. But boy was she a trooper as always. We started our day VERY early as to have Zoey sleep deprived for her EEG. Traffic into LA was horrible and we were sure Zoey would fall asleep in the car, which would not have been good! However I sat in back with her and the two of us just spent a little quality time together and she stayed wide awake. By the time we arrived at CHLA she was not a happy camper. She hated having her head held and wrapped but finally the exhaustion set in and she gave up. Slept like a dream. Woke up happy and then we had a  2 hr wait till we saw her doctor to review the results. That was o.k. as we ran into a few people who had not seen Zoey in a while.  It was so wonderful to catch up with them because each of them had been such an important part of this journey with us in one way or another. Like Edward, a respitory therapist that tried something he didn't often use that ended up being the difference between Zoey having to be re- intubated and not, after her heart surgery. We will never forget him for that and will always be thankful. Or Gaury, a resident who saw me one night after a long day in the NICU and she asked me if I was alright. I replied, yes I was just struggling with whether I would ever understand why we were going through all this with our baby. She said " One day Zoey will show you why." I reminded her of that today. It was one of many  defining moments in my journey this past year. We said our goodbyes, had a quick lunch then back up stairs for her appointment. Well, that's when I started to get nervous. What if there was no noticeable improvement? What next? Dr. Kim walked in and said yes we would be continuing for 4 more weeks, upping the dose to .15ml 2x a day and although he said her hypsarrythmia was not completely resolved it was on its way there! Oh, my gosh.... we were so thrilled. He said if he had to compare the EEG on the Vigabitrin vs ATCH he could only approximate , as it is subjective, but the Vigabitrin showed a 10% improvement while the ACTH showed a 80% improvement! Wow, that's all I can say to that. So, we'll take the 4 more weeks if that what it takes to rid my child of these nasty things.  She looks great and is weathering this treatment beautifully. There are moments, believe me but maybe we are on our way.Maybe she is on her way. I think I can see it in her eyes. I know I see it in her reemerging smile. I am of course very guarded with my enthusiasm. I have been taken out at the knees too many times before. I will continue to worry even if she kicks this thing. Will it come back? Will it evolve into another type of seizure disorder? Because they often do. I will always and forever worry about this child but for today, tonight, I will take it for what it is , a day that yielded some long awaited good news for this precious child . Thank you to everyone for all yours prayers and support, please keep them coming, there can never be enough. Tonight we will all sleep well and I will feel like I can take a baby breathe, a sigh of relief, for at least this moment.

Invisible Women

Tonight my dear friend Tanya stopped by with an amazing story and book about beautiful Cathedrals. You'll get the connection later. Read on. Her timing was impeccable as I spend some days wondering what the heck I am doing and accomplishing here on the home front.  Not accomplishments such as did the laundry get done or did the house get cleaned stuff.  I mean the bigger stuff.  The" Have I been a good enough mom?" " Is what I have done here really making a difference?", "does anyone even really care?" stuff.  Proud on one hand that I have been blessed to be able to always have been home with my children and be a mom, the only thing I have truly ever aspired to do.  The other hand however is, that I also spend days wondering how much money to put in these children's future "therapy" jars, for I have surely screwed theses kids up with some words or misdeed of the day. Some days are dollar days, others require a twenty spot! I had never read this story before.  Today was the perfect day. It meant the world to me so I pass it on to all you mom's out there.  Dedicate it to you, for so many of you inspire me on a daily basis.  Thank you Tanya, I love you. 

Click on the Invisible Woman link to read the story.  

Perspective

I need to encourage all who reads this, if you don't know about Carnegie Mellon professor Randy Pausch, you MUST read up about him. He has the potential to change your life and the way you live it. His lecture given on the heels of being newly diagnosed with pancreatic cancer, is now available in a book, Last Lecture. His intent was to leave his three young children with a loving message from their dying father and in the process he gave the world the gift and opportunity to change our perspective on how we live our life. If you caught him and his family on ABC last night with Diane Sawyer then you know exactly where I am coming from this morning. I was moved beyond words. I was so struck by the deep love, strength and devotion between he and his wife Jai. I paused numerous times and realized, sadly, how distant Mark and I have grown. Not because we do not love each other but because life circumstance, children, work ,time etc has caused us to miss out on each other. My gift of the night was to make a concerted effort to remember that without Mark and I , strong together, we will not see our family through this difficult moment or any other we may face in the future.For me I think his story is coming into my life at just the right moment. He said something in regards to his cancer that I am left with today. He said, Unlucky,yes, unfortunate yes but he would not call it unfair. I think I need to spend a little more time thinking about my families situation in a similar way. For us the last year has been financially devastating, the loss of our home and our savings and on a personal level , the last year has brought to our life a fear of the future for a child we love beyond words but I will no longer call it unfair. It is the life we have been given. A gift. Not a promise that we would not be tested. It becomes now, how we choose to face that test that matters. Today I choose to try and  tweek my perspective because of  a stranger who chose to share with the world his courage. He also used the analogy of comparing life to a football game. He said that at the end of the game the scoreboard does not necessarily reflect accurately the fight on the field , however if you can leave the field and know you laid everything you had out on that field then that is enough. No regrets. How many of us can say we will have no regrets? I can't right now. Maybe someday I will say that with ease. I intend to try. 

Long overdue picture and a random post

Well, I started building my wall today. Wall? you say. Your thinking , I know Heather is multi-talented, well versed in many areas but construction, I had no idea! No,No not that kind of wall. My wall of self protection. It is something I do when I soon will be facing some possible big revelation on Zoey's medical  home front. Usually a week to any number of days before an important doctors appointment I start my wall. I slowly start shutting myself off from the phone , answering the door, going outside and even stop contact with the most intrical people in my life. It's just what I do. Not very healthy I know but my mode of operation and my method of coping. It is strictly based in fear. Fear of the unknown and the uncertain. A way of not facing questions, not facing a breakdown right in front of someone who has no idea what to say to me because really what is there to say. Everyone WANTS to say everything will be alright but we all know thats what we hope not necessarily what will be. The only thing I sometimes want Mark to do for me is tell me that she is going to be alright, always and forever and it breaks his heart because he just cannot, no matter how much I want to hear it , tell me it is all going to be alright. I spent a great deal of today just gazing at her. Sitting with her, playing with her. Sometimes, yes, even feeling sorry for her. Mostly just marveling in her sheer perfection because to me she is just that, perfect. I came to an acceptance a LONG time ago that Zoey's life was not going to be as the other childrens will be. I was and continue to be fine with that. What I and most parents of children such as Zoey, struggle with and find most difficult to accept, is the possibility of a shortened time with them. Time we feel is entitled to us when in reality we have been promised nothing. With these children  or any of the others we have or any other of the people we love heart and soul. When I accept that aspect of this life we live, this earthly life, then I will be able to stop building walls and instead build memories in the days I so easily and effortlessly waste away frightened by the uncertain. Until that day my wall building will continue. Maybe the fact I recognize it is one step closer to acceptance. I leave you with this darling picture of my little love from this evening. She is so serious as of late but she is amazing. She amazes us each and everyday. 

Update

Sorry for anyone waiting on an update from Zoey's appointment yesterday but the day was an absolute haze to me by the time evening rolled around. Mark and I are usually up until 11:30 or 12:00 but last night I dragged myself upstairs around 10:30 and barely remember hitting the pillow. Good thing I went to bed a little earlier as Zoey had a restless night. Up a few different times for a short "snack" then back to sleep. She seemed uncomfortable but I can't put my finger on why. Probably the ATCH building up in her system. We are extremely fortunate that Zoey has always been a fantastic night time sleeper. Cat napper during the day but great at night. So we have been spoiled. Tide may be turning thanks to the meds. though. She is down for a nap now, so here's the report. Her heart looks absolutely perfect for now and we are thrilled about that. She will have another echocardiogram in 2 weeks to take another peek. Friday is the big day. Video EEG. We'll get a better feel on how this course of treatment is progressing after that. We pray for good news. I have already prepared myself for another 4 weeks of injections after friday and I am ok with that as long as we see improvement in her hyps arrythmia. For those of you that don't know, Hyps. are the chaotic discharges firing all over her brain that causes the spasms and leads to the deterioration and delay of development. BE GONE HYPSARRYTHMIA!!! So all of my prayer people, thats the focus of our week. That friday will come,we see marked improvement in her EEG and these nasty episodes are gone completely and a thing  of the past. Continue to pray for all of our strength to see this latest bump,or mountain , in the road, vanish and she can get back to doing just regular baby stuff. Thanks for checking in on us , it is appreciated more then you know.

A love, hate relationship

Monday starts with a lovely road trip to downtown Los Angeles, Hollywood to be exact. For all of you out of staters , trust me, it has nothing to do with glitz and glamour. Oh no. Zoey and I will be heading to our home away from home, Children's Hospital of Los Angeles. Sorry to disappoint. However, it is right near the big Church of Scientology. Maybe we'll catch a glimpse of Tom Cruise. No seriously . I SERIOUSLY HATE going down there. And in a really weird way love it. The morning always begins the same way. Me, in a foul mood, wondering how it is I came to be able to practically drive the drive with my eyes closed. How I came to know the parking attendants by name and that the front desk badge people recognize me. How is it that Zoey is known from Radiology to oncology and every where in between. Neurology,cardiology,hematology. Have I missed a "ology"? We have stayed in the NICU and CTICU and pray we do not ever have to go to the PICU. Suffice it to say we know our way around the joint! From Chaplains to cafeteria workers and countless others , we have come to know so many of the CHLA staff. They have become our family. Many ,we consider our friends.Thats where the love comes in. How can we not love the people who have literally saved our daughters life. The nurses who, became her second mommies when I couldn't be there. The doctors who have cared for her as if she were their own. Their faces light up when we return. You can see how pleased they are to see her growing and thriving despite set back after set back. You see the pain in their face when she struggles to over come yet another lousy hand dealt her. They encourage us each step of the way and remind us of what a fighter she is. How can we not in some strange way love this place? Now , don't get me wrong. I cannot wait till a day comes when we will not have to come back as often, if ever. But the people, the people I will miss. And as sad as it can be sometimes , I will miss the faces of the awe inspiring children that I see each and every time. They give us such strength. So , tomorrow I will make the trek,like I always do because I have to. On friday I will do it again. And unfortunately , and also fortunately, I will continue it for some time to come. Pray for Zoey tomorrow. We need a good report from her echocardiogram. Her heart needs to look just as healthy as it did  almost 2 weeks ago so she can continue on her ACTH treatment. We are not asking for much, just status quo. Keep those prayers coming .

The "S" Word

Early saturday afternoon and if you can believe it , the house is empty except for Zoey and I . The peacefulness is nice but I really do better when surrounded by people. My mind wanders too much otherwise. We had a fabulous celebration for Jess. I have a large extended family and I love being all together. Chaos, but wonderful at the same time. Jess headed back to Pepperdine, Caitlin is in San Diego, Taylor at work and Mark and the boys are at Jake's baseball game. As for Little Miss Zoey ...... asleep. She is weathering her ACTH fairly well. She is EXTREMELY cranky however. Imagine your worst colic and magnify it by 1000! Zoey is on a very low dose protocol of ATCH due to already dealing with cardio myopathy(thick heart) so I cannot imagine what she would be like on a regular dose that is some times 3x what she takes, her dose is .1ml twice a day!  She is especially irritable with me. I think it is because her appetite has increased so much due to the medication and I am the feed source and I am literally nursing her every hour. It is insane. It would remind you of a newborn where you feed them on demand. I welcome the chance to have a extra hand around for her sake as much as mine. She is much more content in the arms of someone else. She sleeps great though. Two nice naps a day and she sleeps all the way through the night. I am thankful for that and it gives her a chance to rest her tired little body. Now, most are wondering, "So what about the seizures?" Here's my take on it. How ever bizarre it my sound. And those who know me , know my mind can go every where and any where! My sister once said that my mind would be a nice place to visit but she wouldn't want to live there! Anyway, when the girls were little there were absolutely certain words we didn't like said. One being stupid the other shut-up. So they were referred to as the "S" words. The girls would hear someone say one of them, gasp, and utter, "Mom, they said the "S" word." From now on, seizure is the next generation of "S" words. I have instructed Mark not to ask me about the "S" word, only say " So, anything?" in reference to activity throughout the day. I know, crazy but I feel if we talk too much about the "S" word it will rear its ugly head in full force again in our home and I am on my knees praying daily that they will continue to make themselves less and less visible from our lives. Zoey's life. So , I will leave it at that. Read between the lines if you must but when you do please follow it with a prayer. I thank you and Zoey most certainly thanks you too!

First born

Tomorrow is a big day in the Needham household and it actually does not involve Zoey! Tomorrow is Jessica Leigh's 21st birthday! Our first born is 21! Wow, so hard to believe. It is so strange when your child reaches an age that you can vividly remember yourself. There is so much I would love to share with you about this amazing child of mine but none of it would come close to doing her justice in this small space of mine, you just have to know Jessica or Jeka Lee, ooggie -booggie or j-bird as she is often referred to. She entered this world at 5:25 pm eastern standard time and she instantly changed me forever, us forever. She was and continues to be the easiest child by far. You could at various times in our household , over hear one of the others saying, "Oh ,yeah, Jessica, the perfect one! " Now depending on what kind of mood I was in  at the time , my response could be either, "Don't be silly she's not perfect " OR " Yes, you are right, maybe you could get some pointers from her." I think you can get the picture. She came into our lives at just the perfect time. Getting us out of that early selfish 20 something stage. She also changed the life of my Grandmother. Mark and I were 22 and 24 when Jessica was born and we lived with my Grandmother who had had a stroke. Most of the relatives wanted to place her in a nursing home but my Mom and Dad who were already in California approached us with the idea of moving in and caring for her. We were young and extremely naive and figured how hard could it be? New baby, new marriage, grandmother who required around the clock care, no problem. It was a very challenging year and a half but so worth every moment. People have often said that if we could make it through that first year we could make it through anything. Who knew 21 years later we would be facing similar challenges with the same statement being applicable? I think however, that is where my first "medical training" began. Hospital bed , bed pans, blood pressure machines, P.T appointments, etc.. The gifts I received from that period of time far exceeded any burdens I had to carry. I had the opportunity to truly get to know my Grandmother. Not only recalling things from my childhood perspective but now as a young woman, a mom. I gained a new found respect for aging and that coming full circle thing as one is faced with illness and ailing later in life. It is a lesson I have taught my children, that we will all grow old one day, so treat others accordingly. My grandmother lost her zest for life but Jess gave her a spark back and was the only thing that brought a smile to her face. They loved each other, these two people, separated in age by decades but both needy and vulnerable at the same time. Thank you Jess for giving Grandma a reason to keep going. Thank you for saving me from myself. Thank you for being an incredible example to your siblings and  all the while knowing that this has been an awesome responsibility and at times a burden. Thank you for being a person grounded in goodness, honesty, loyalty and faith. We are so proud of you. So, on this eve of your birthday may you know how completely you are loved , unconditionally, always. God blessed us far beyond all our wildest dreams the day He sent you to us. May your day be filled with love and laughter Jessica Leigh, you have given us all that and so much more! 

Lurking around the corner

Well, I have managed to string along a number of days here that have seemed to resemble a new and ever changing level of norm. Our definition of normal has certainly changed several times over the last year!. However, that sneaking mommy feeling at this very moment cannot be ignored. You know the one that finds you sighing deeply for no apparent reason. The foreboding feeling that you can't quite put your finger on. That feeling that something is lurking around the corner to possibly take you out at the knees. I am trying to logically work through that feeling and I am coming up empty handed. I have a sneaking suspicion it involves little Miss Zoey. She is now completed day six of her ACTH injections. 12 injections down, who knows how many to go! I have become a LITTLE more comfortable giving them but that little stinker feels the alcohol prep and she knows what's coming! She went to the Drs. today. Blood pressure fine, urine negative for sugar. All good. She was Miss serious today though , did not even smile for Caitlin. This evening she cried for over an hour, very unlike her, so I dug out the baby swing and she passed out. I do believe the ACTH beast is about to rear it's ugly head. Little Miss fussy is giving every indication of that. She wants to nurse like, every hour ,so her appetite probably is kicking up. Another side effect. And as she slept in her swing I could not help but notice her cheeks looked a tinge bit more puffier. Another inevitable side effect. So get ready for a new chapter everybody. The unknown. Just when I start to get use to right here and now someone has to throw something new at me to keep me on my toes! So...... tomorrow is a new day . We are forced to keep a low profile, Zoey and I, due to ACTH suppressing her immune system and it leaves me a little stir crazy by weeks end. The boys too.The park is alright, but tomorrow calls for rain. The girls keep busy. They have the freedom of their cars and work and friends and boyfriends so I am glad they can go do their thing. They are great about offering to pitch in but I never want them to feel over loaded. Their plates are full enough. Then there is Mark. The guy is lucky to be home by 8pm each night and he is  pulled in so many different directions. He wishes so much to be home more with us but reality tells a different tale. One that doesn't seem to hold much promise of ever really changing. We don't thank him enough for how hard he works for us all, we are so fortunate. Well, I have digressed . Back to that feeling ........ if  it does in fact involve Zoey, it hopefully  won't mean too difficult of days ahead  for her. We continue to pray that this latest treatment is gentle on her body and that it spares her anymore set backs. Lord knows this child deserves a break! And as far as this feeling, I hope it proves to be little more than a mom who is being tested to the limits and turns out to be nothing more than something that  a good nights sleep won't cure.  That and a stiff drink ........ just kidding! Maybe.

Good stuff

I thought today might be a good day to catch you up on Zoey. You might say isn't that what she has been doing the last couple weeks? I mean, really catch you up , from her teeny tiny toes to that darling  little head of hers. All in all Zoey is doing amazingly well, all things considered. She receives O.T. (occupational therapy) three times a week. Jacquie, her therapist is incredible. Sometimes when Zoey tires out early, it becomes my therapy session. She has become part of our family, she is family. Considering  Zoey had to lie on her back for 5  1/2 months and could do not one bit of therapy till after heart surgery we all agree she is doing more then we thought she would do at this point. Well ,maybe not more but we are impressed. Seeing that seizures have also further pushed her back.She is one determined , hard working child that has found a way to do things in Zoey time. One thing we love to watch is her rolling like crazy across the floor! I often have to run and rescue her before she rolls onto the tile. She can sit supported and briefly unsupported. Her back is super straight and strong. You have to remember.... Zoey had a stroke, so her entire left side is out of commission. Not because it is not as strong as her right, it is referred to as disregard . It is as if she does not know its there. And boy if you force her to use it she is furious. It mostly is her hand that we struggle with. For instance, if you place an object in her left hand she IMMEDIATELY transfers it to the right. Not bad, uh? It will be one of the biggest things we struggle with in the future. She loves balls. All sizes. Rolls them back and forth with her little hand. She loves music. Whether it is in her CD player or being sung to. Yes, even my voice! She loves studying peoples faces and she does have her favorites...... my dad, her daddy and her sister Caitlin that can make her smile like no other!  Me however, she sees me and I am the "feed bag" so usually its an arching of her back and a little grunt that equates to "feed me now"! Zoey is also an absolute snuggler! She burrows her body into you and would stay like that forever if she could. I think that is one small up side to her size and development versus her age. It is as if she is a 5 month old and I love that. We can hang on to the baby stage a little longer. Sounds strange in a way doesn't it? Zoey does not make alot of sounds, a few here and there. That will slowly come. She nurses like a champ. Something she just "picked up" after surgery. Boy am I glad I pumped all those months prior to surgery. We are beginning to teach her to use a cup.It is a special therapy cup. No lid.It has cut out side and she really does a great job with it. I am so proud of her. She was eating baby food 3 times a day. Great at it in fact but for some reason she has acquired an aversion to it as of late. The current medication is suppose to increase appetite so I sure hope it picks back up. She does still have her g-tube(feeding tube) but we just use it for meds now. It is a good insurance policy for now till we find our way through some of this stuff. Lets see, what else can I share without boring you to death? Oh, did I mention she can turn pages in a book? No really! She PURPOSEFULLY turns the pages as we read books. It is truly remarkable. We are in awe of it every time. Well I guess thats all for now. There is more but I will save it for later. I just thought it was important to let you have a glimpse into Zoey and not just the Zoey with all the medical issues. We are determined to not let the bad stuff over take the good stuff. We are determined to not let all of Zoey's medical labels define her as a person  There still is good stuff too. I need to pause once in awhile and be reminded of it. I do Zoey a disservice if I do not acknowledge that there still is good stuff each and every day and remember to have faith in more "good stuff" to come.