Ugly Bug Ball

With Isabella turning seven today and Samuel's second birthday just around the corner for tomorrow, we decided they should share a family celebration. We chose an "Ugly Bug Ball" theme as the kids had these fun bumble bee spring outfits and since we were doing this as a spring picnic.. it just worked! Plus who doesn't love the classic Ugly Bug Ball music from Disney's Summer Magic.

We cooked burgers on the grill and enjoyed watching all the cousins play outdoors and perform Wii Karaoke for us. It was a great day. I was especially happy since Samuel's first birthday was not during a very strong period of wellness last year and I am so thankful he was able to dance and sing this time while surrounded by all the people who love him.

Bella really enjoyed belting out some tunes and showing us her best dance moves. I can't believe how grown up she has become in the last year! It really became obvious as I listened to her reading her birthday cards with ease and thanking everyone without the reminders. WOW.. they grow so fast!

Sammy also decided to use the party as an opportunity to flex some fine motor skills as I watched him all of a sudden pick up his fork and start feeding his own cake to himself. I guess I was not shoveling it in at his desired pace! Such a funny little man! He is learning new things every day but it is I who has learned the most from him. He was so sweet all day.. full of hugs. I just wish I could keep him this way for the rest of his years. I sure love all these cute bugs!

Hills and Valleys

Today I read about the loss of a sweet boy who I have followed online. He showed more courage on any one day than most adults do in a lifetime. I can only imagine the pain this family is feeling to say goodbye. His pain is over and I hope the family can find peace in that he touched so many lives with his warm smile. This family is in my prayers.

I began this post earlier today, amidst chaos of meeting the needs of my 4 kiddos on a busy saturday morning. I was feeling the weight of my worries today for Sammy which often comes and goes on a daily basis. I was originally writing about the hills and valleys of our life lately and how I wish I could stop focusing on the potential threats ahead. I then came back to my post after absorbing the news of this mother's loss. How can I live in fear of future hills ahead for Sam to climb when I see that so many other children's life journeys are cut short so early? God has given us a finite time on this earth but an eternity in Heaven. I really have no business worrying over the hills and valleys ahead for this earthly life. It is more important that we focus on the life thereafter and the steps we are taking now that will lead us all to that happy journey. Every day is precious with the ones we love and it is best to focus on what is in our current path.

This week we began the 30 day halter monitering with hopes of recording Sammy's symptomatic events again for the cardiologist so maybe we can further confirm his understanding of the dysautonomic crash of sorts that leads to his bradycardic and, in turn, hypoxic events. His Dr is concerned less about slowing heart rates but about his heart stopping for these periods, as he has had in the past. At the same time, we have increased his dose of the medicine he takes to counteract this problem and we hope it is the best solution. If not, we need to consider the pacemaker again. I just don't know if he could make it through the open chest surgery with his prior track record and I fear the regressions that always come with procedures.

Sam has been playful and happy this week, although more floppy in his walking. He has been moving much faster in exploring his world. He has taken more advances with his sipping of fluids as well. He still sounds somewhat wet with it, but far less choking behavior and less aversion. I am trying to weigh out more outside exposure to public settings as we did take him with us to the final cheerleading functions for the girls last month and he did well. Our worries primarily surround that bad combination of the risk of illness and the taxing of his system with exhaustion and stress.

In therapy, my main current focus is on his speech development. I have asked his therapist if we should try to increase speech sessions from once a week to at least twice as he is not moving far forward in this area. I fear the prospect of him remaining largely nonverbal if there is something we can do to push it forward. He is so quiet much of the time and then has days where he seems to be really trying to find his voice with the sweet sounds of babbling. The other day, I responded to his call for "mommy, mommy" which is a quite rare use of this word and I was ready to hear what else he had to ask of me..holding him and trying to understand.. he was unable to tell me and began a tantrum, banging his head against the crib in frustration. He signs for many things and we are working on expanding this but it is just not enough right now. He loves the ipad tools but our therapist does not want to try too many different communication avenues away from verbalization as he clearly knows what he wants to say.. just not how to do it. I am sure it will come in time. Meanwhile, he only gets OT on consult and greatly needs more as he still can't stack blocks or color or feed himself with a spoon. His PT has been wonderful for movement but recently has had personal issues and keeps canceling his weekly sessions. So I have to get involved now with that on a more aggressive, advocating level.

In 6 months, Sam will start the IEP process, preparing to exit the early intervention program and enter the school system with VPK-D (developmental PreK). This is something I know little about and need some help navigating.. so that will be my next hill to educating myself about how to best advocate for his needs.

Sam will be 2 years old in one week and I can hardly believe it.. this is such a joyful milestone for us all! Bella will be 7 the day before and I want to celebrate both of these special events but right now a big party does not seem possible. I want Sam to know how loved he is and how proud we are of all he has done this year. I think it is almost too emotional for me to even share how special this 2nd year was as we watched him make such strides in so many areas.

We also have the sleep study/ continuous EEG this next week so, it should be a pretty busy week for us. At least cheerleading has wrapped up for the girls so our schedule will be calmer than it was over the last few months. Spring Break is right around the corner and I look forward to some fun outings as a family.

Probably my greatest prayer for this coming week surrounds the approval of the nursing to continue. That would be the best birthday gift God could give to Sammy. The approval required renewal review is this week and
I can't think of a single more important thing that contributed to Sam's health and wellbeing this year. I just don't know what it would mean for him or frankly, our family, if he loses this coverage. I don't know where I could even begin to fight for this again.. where I would draw the strength. It feels like when that happened last year it was God reaching down and holding Sam in his hands. He knew we were at a breaking point and Sammy was fading fast. And then our prayers were answered.

I am also praying about a special project for Sammy and I that has been on my heart for some time. I am wanting to start up a music therapy foundation, bringing the joy and love of music to touch and help local children with challenges. I think it would be something I could do to give back what has been given to me. I am just working out a plan on how I want to develop it. I pray for guidance on how to begin bringing this dream to reality.

My final prayers are surrounding a friend of mine's family during a difficult time. My friend's husband is undergoing radiation this month and it will be a difficult time as they all go to be with him through this trial. He seems to be doing well after a surgery to remove cancerous tissue in his throat. They have so much faith and I am sure he will persevere through this time swiftly. I hope God helps them to cope and brings to close this scare with a disease that is hitting far too many families. I wish I could understand why cancer and other deadly diseases touch so many people nowadays.. indiscriminate threats that you can't see coming. Thankfully, this family is well supported by our church and community, with an army of prayer-warriers pulling for them.

Fight Or Flight

After a long day spent in Pensacola for Sammy's appointments, trying to figure out the origin of the sudden onset of the episodes he had over the past week, in hopes of creating a plan to avoid further life threatening concerns, it appears the specialists still find that our issues rest with his inability to effectively manage in "Fight or Flight" mode. His autonomic nervous system runs amok..yet again.

It seems our neurologist and cardiologist still think the episodes originate from a form of dysautonomia. This does not mean our pediatrician missed the mark by stating the event he witnessed might have started as a breath holding episode. He may have part of the trigger figured out but noone seems 100% certain on the entire chain of events. They think there is a misfiring in his brain that sets off a storm leading to bradycardia (very slow to no heart rate),a rapid drop in blood pressure, hypoxia and seizure. The trigger of this misfire is some mixture of external or internal stress, improper impulse control, involuntary breath holding, and hyper vaso/vagal tone. The behavior that seems like a seizure where his body is incredibly rigid and there is an obvious facial grimace and lack of consciousness, is likely a reflex anoxic seizure brought on by the lack of oxygen reaching the brain..not necessarily from not breathing but from a switch in how gas is exchanged and processed in his cells and is further inhibited from the heart not pumping it up to the brain at a fast enough rate. At least this is my understanding. The cardiologist said laying him down or him passing out and falling down should improve the ability to get blood into the brain faster as it stops fighting gravity. Stimulation with sternal rubs is key and getting to oxygen too.. but although hypoxia is a very important concern for avoiding brain damage, his concern is that the heart could stop beating and not resume. Sam has had concerning pauses in the past and we are now going to be watching to see if this remains a valid concern.

Our neurologist is ordering a continuous EEG to be done in their lab within the next week or so in order to see if we are able to capture an event. They don't think these are initiated by seizures but capturing one on EEG would bring confirmation. The Cardiologist has doubled his Glycopyrrolate (robinol) medication which has an anticholinergic effect by blocking the neurotransmitters which slow his heart rate. (Forgive me if my layman's understanding of these things is simplistic). But basically this medication lowers the vagal tone making it harder for messages to go out that slow the heart rate at dangerously low levels (a condition called Bradycardia). I like his cardiologist because he takes the time to explain things in a way that I can more easily grasp.

Until Sam's arrival I never even understood the nature of our heart rate and the delicate balance of our internal and biological rhythems. Everything has to be in sync or a traffic jam can occur. I liked how he described the heart as having one main job to do.. just to keep pumping and how the brain and nervous system are really the parts who act as the back-up pacemaker to ensure that the muscle pumps at a rate within the upper and lower limits. SO if the heart gets to pumping too fast or slow and that internal "fight or flight" is kicked into gear, the pacemaker or autonomic system needs to put things within the safe range. Sammy's does not always do this effectively and so if he decides to get mad and not take that next breath or take too many breaths, his internal autonomic switch needs to lay out the safe "fight or flight" limits but it seems to fail him and his heart rate plummets further dropping his oxygen saturation levels and bringing on a host of scary symptoms.

If on the new levels of medication, Sam has another episode than we will begin a 30 day holter monitering where an EKG is recorded during his events and based on those results, we might have to reconsider the pacemaker. This has been helpful to his Dr in the past. The pacemaker was advised a year ago for Samuel when he was having so many of these events but we saw the Robinol working and we opted to avoid the risks of major open heart surgery as it is with the placement of the pacemaker in an infant. The vessels of an infant are far too small for catheterization that is used on adults. This means the pacer has to be placed directly against the heart and will scar to the heart over time. The procedure is risky and I can't even imagine how we would feel doing this after seeing him nearly die following lesser procedures. This might also mean he would need more surgery later to change out batteries etc.. But that is getting too far ahead to consider right now.. for now, I will try to focus on the medicine changes and pray for no bad side effects. Those in of themselves are enough worry for this week. I wish I could handle things with more calm and grace, but honestly I don't think I could be anymore nervous after the stress of last week. I just don't want to see him having episodes so often as he did a year ago. It was a crushing time for me. On top of this, we are having normal family stresses of a new baby and such and I just have to keep remembering what is most important.

That said, I think my own "fight or flight" abilities are incredibly weakened lately. It would be so nice to say I have found the profound peace, the smooth ride (if you will), that I have so often sought with my planning and daily prayer... but I am just not there yet. When road blocks appear in my path or unsafe driving conditions loom ahead, I either take off in the opposite direction or worse I see red and can't even read the road signs pointing out the best route. I speed when I should slow down for dangerous curves and I find myself staring in my rear view mirror at things behind me that can't be changed. I lack the skills to survive when stranded on the side of the road and I can't seem to "fix" a single engine problem, let alone, change the tire when it blows. Basically, I lack the road savy skills needed to make this cross country journey alone.. so I find myself taking a lesson from Sam.. I will have to let God take the wheel on this one.

Searching for answers again..

SO it seems we are heading back down this road again... more endless questioning and confusion on Sammy.. I know God has taught us much in the school of life but I thought we had gone on summer break.. I guess school is back in session.

Here is what happened.. the quickest version I can type since I need some sleep and Max is needing to eat every hour on the hour.

We noticed this week that Sammy was a bit "off" but I could not put my finger on how or what was brewing. He was more fussy than usual. His coloring has been blotchy and he seems to be sleeping in odd patterns. He had some junky sounding periods after sleeping which would resolve after being upright. He has an open ulcerated area at the stoma of his G tube which is hurting him and causing him to yank at the tube.. so I thought maybe this was further pushing his mood a bit. Anyway, last weekend there was a moniter alarm for a brady that was asymptomatic. Then on Wednesday morning I was on one side of the house getting the girls ready for school and the nurse was on the other side changing a diaper when Sam apparently had a major hypoxic episode.. brady, seizure.. whatever you want to call it.. I am so confused at this point.. I just don't know. She described him exactly as I have seen in the past.. rigid, locked up and contorted. His skin purple and blue... not breathing and then going completely limp and then greying out and unconcious... the spelling on that looks wrong but I am exhausted and it is midnight.. so forget looking it up. I wish this thing had spell check sometimes. Anyways... he was out for maybe under 2 minutes and she put him on oxygen and then he started breathing again.

I guess she screamed for me but I could not hear her. This whole thing coupled with his recent funny behavior prompted us to call his Dr. but apparently he was out for the day and noone called us back. Then he fell asleep and we hoped he would get some calming rest. It was a few hours later when he awoke that we again noticed the junky breathing and arching pain. He did not want to be held and was irritated by everything done for him. We vented his tube and there were little black things in the fluid which seemed likely to be mini pieces of blood. Within the hour he seemed better and went out to play with his sister in the family room. I was in the kitchen when the nurse decided to puch in his meds while he was trotting around beneath my feet. I offered to hold him as he has been yanking at his G tube chords whenever they could be accessed. As I reached down to hold his hands, he instantly locked into the contorted rigid posture and stopped breathing and again became hypoxic. The nurse grabbed him up like one big solid log and ran him to the oxygen and again he went limp and grey in her arms. This one lasted about a minute and a half or so. WHY WHY WHY.. 2 events in one day after such a long time without incident?

Yes, we used to experience this constantly when he was a newborn home from months of investigation in the hospital.. and no they never fully understood these episodes.. but they seemed to respond to the medicines he was put on for seizures and for brady/ autonomic vaso vago syncope events. These have always been distinct from the bradys where he just drops his heart rate all of a sudden and turns grey..but I guess we came to think this was the same except that the heart rate maybe stayed down low enough to cause a hypoxic type of seizure. Yes, they have captured on on EEG during a code blue in the hospital and it did not show as a typical seizure but I am just perplexed because the one thing that did seem to be ruled out before has now yet again surfaced as a question.. breath holding or apnea.

Let me explain why this old theory is being resurrected. SO.. after having 2 of these events, we called the Dr yet again to see if we should head over there and they said probably not since our Dr. was out and the Dr covering was so unfamiliar with Sam. So.. I called the cardiologist and neurologist and left messages. The cardio nurse returned my call with a voice mail saying check in with pulmonology?? and they neurologist did not call right back. SO I made an appt with our pediatrician for the next morning hoping it was just some ear infection or something bringing on these symptoms.

During the exam, low and behold, Sam decided to perform for the Dr and sho him a mini version of this type of episode. I was actually somewhat happy to have him witness it. Again he looked incredibly scary and rigid and seizure like and hypoxic and then limp and then unconcious. This time, however, we did not have our oxygen and it was scary seeing him lay there so blue with no resources to help him. The Dr seemed stunned and did not even really seem ready to jump in to bring him back up himself. The nurse worked to stimulate him and within a minute he was back up and looking at us again. The Dr. threw up his arms and said it was beyond his realm of expertise and that we needed to see neurology and get on an anti convulsant right away. But then I explained that we are already on one (somewhat suprised he did not remember that since I am farely certain he has few kiddos as complex as Sammy).. but he said then that we needed another one and that he needed to not be provoked or made mad etc.. and that this could be very concerning behavior for a child with his underlying condition. He then explained that he thinks this was a breath holding event that led to hypoxia. BUT THIS SEEMED SOOO ODD TO US SINCE HE NEVER SEEMED TO HOLD HIS BREATH.. He went into the seizure looking behavior too instantly and it seemed completely out of his own control. He was not "there" if you know what I mean.. so chicken or the egg is again my issue.. seizure leading to hypoxia or hypoxia leading to seizure.. what happened?

I will not go much deeper into what our nurse had to say about it but let's just say that we are left very skeptical about this Drs opinion. This may be partly because he then seemed annoyed when the neurology office asked for a seizure medication blood check to see if he was at therapeutic levels. WHY would he question this request if he just got done telling me we needed another anti convulsant? Also.. further.. with his mito condition clearly being one where the crash of symptoms is worse with illness or underlying stress, why did he not order a CBC or dive a little deeper into the question of why this kid who has been mainly episode free for months and months all of a sudden starts having a string of episodes in one 24 hr period? Seems odd but I am not the Dr.. so I will have to ask these of the next Dr of which the buck has been passed to.. (sorry if I sound sarcastic or tempermental.. I am just so so so tired of this ping pong game of which new Dr will take a hit at the ball, with everyone hoping it falls under the next specialty brought into it).

SO.. then in final summation of where we are today. Luckily.. no episodes today and happy in the morning but very moody this afternoon.. We got a call afterhours from the nurse reporting that his seizure med levels had dipped below therapeutic levels and that the report would be sent to the neurologist. Then the nurse became concerned that it should not wait to be addressed till monday's appt so she called the afterhours neuro team and they (hearing the event info) decided to up his dose. Of course they and we have noo idea if our Dr is right and this is some kind of self inflicted life threatening breath holding event or if it is some reflex issue relating to his autonomic nervous system, a lowering of Heart rate/ brady or if perhaps it is a seizure. I just don't think anyone is entirely certain..but one thing is for sure.. they all feel these are very dangerous and he needs a management plan or to figure it all out quick. Until then, his Dr instructed that we allow no stress on him.. no pushing his buttons basically. He told Sam that for now he needs to be basically spoiled rotten.
Not so easy to do with 3 other kids including a newborn to consider..so.. praying for answers, peace and less frustration. Praying that the med increase stops the episodes and that he stays pink all weekend. :)

Maddox Alexander

After waiting so many months in great anticipation of meeting the little guy who had long been kicking me and keeping me up all night with his hiccups.. I am pleased to finally introduce our newest little man, our "Mad Max"..

Maddox Alexander Negron arrived January 24th, 2012, weighing 8 lbs 10 oz, and 20 inches long. He was a planned C section for 3 days before his due date. This was necessary as our local hospital does not have the resources to ensure a safe VBAC. Everything with the surgery went well and he was crowing loudly from the moment of his birth. He seemed to be crying, "Look Mom!.. I am here and doing great!" There is no sweeter sound!!

I know this is a graphic picture but I felt it really showed how caring the hands were that brought our dear youngest boy into the world.. it almost looks like she is praying as she holds his head in her hands before delivering the rest of him.

We were so thankful for the efforts made by our OBGYNs to ensure a smooth and safe delivery. They were so thoughtful in considering the bad experience we had during Sam's delivery and thereafter and keeping that in mind throughout my pregnancy and delivery. I felt far more secure in their care.

After delivery, Maddox was taken away to be weighed while they completed the tubal ligation portion of my surgery. Maddox will be our last child, officially completing our family. I was soon allowed to nurse Maddox in the recovery room and he took right to it. This was very encouraging to me. Things were going so well that it was a bit of a shock minutes later to be told that Maddox had been admitted to the NICU for monitering. This was devastating news for us as the memories from Sam's delivery came flooding back.

It seems that when they took Max to the nursery for his first bath, he had a dusky episode and a high rate of respirations. They wanted respirations between 40 and 60 and his were more like 100- 130. This is called Tachypnea and we later learned that it is not unusual for babies delivered by
C section. By not passing through the birth canal, they can often retain fluid in the lungs that is not squeezed out.

Looking at Maddox, he seemed great in comparison with what we experienced at Samuel's birth so this made it harder to have him in the NICU and away from us. I was very emotional about not being able to nurse him over the next day or so and the pain meds only made things even more confusing and emotional for me. There really is no way to express what it means to be seperated in this way from your baby after you carried them in your body for 9 months, all along anticipating the bonding you will experience in those first hours.

Then to make us even more concerned.. I watched as they measured a large port wine stain flat birthmark that Max had across his lower back and I asked the nurses about it.

They said he was scheduled for a spinal ultrasound in the morning and I immediately became concerned as I knew from my past experience at the March of Dimes that they were doing a check for spina bifida. This is because birthmarks and dimples can sometimes be a risk factor for an opening in the spinal vertebra underneath the skin. I knew they were just being overly cautious and that we would have likely known of any such risk as I had constant ultrasounds throughout the pregnancy and had such normal alpha fetal protein test results as well as taking my prenatals etc.. but after all we have experienced with Sam.. I guess I just could not handle the threat of anything like this. Needless to say.. it was hard night of worry and prayer.

Thankfully, the spinal ultrasound came back completely normal and furthermore his breathing began to slow to a safer rate. Labs that had shown some iffy immature white blood counts apparently looked far better and I was able to return to nursing Max. He was later discharged from the NICU in time to go home with me. So we counted this NICU stay just a bleep on the radar and were quite thankful to be blessed by no further concerns. At that time, however, I had no idea what was waiting for us at home..a house of illness!

Earlier in the week, Isabella left school with a bad cough, remaining pretty ill all week with cold symptoms. This was our first brush with illness in our home this season...which is really quite a miracle!

Maddox and I had arrived home on Friday to the house of gloom and doom..the dreaded RSV certainly had landed and Sammy was having back and forth issues as well. We were blessed to have my mom caring for Isabella and working diligently to keep the illness away from Sam. But even with his nurses keeping him apart off in his own room, he soon showed respiratory symptoms by Thursday of that week. The Dr saw them both but could not see the writing on the wall for Sammy until it was too late. They were on z pacs and Bella was doing breathing treatments but Sammy took a major downturn. By Friday night he was in full respiratory distress and could not keep his O2 saturation levels up even while on oxygen. The nurses were very concerned. We were up all night helping them and trying to decide what to do. He was miserable and obviously fading fast.

By the following morning, Sam had seen the pediatrician and Jason was rushing him over for an admission to Sacred Heart Children's hospital. I am thankful that one of nurses rushed over to help me pack his medications, protocol letters and equipment. It was not how I envisioned recovering from surgery or celebrating Max home, but I knew God would get us through it. We had the prayers and support of our church and community and for that there will never be enough ways to show our thanks. I felt like there had to be a break on the stress somewhere. Relief arrived when Tuesday Sammy showed signs of recovery and began breathing easy enough for his discharge home. This was a real saving grace as Jason had already missed too many days of work.. there is no vacation for the self-employed! I am not sure what I would have done during this time without the care of my mom, who rushed in to provide support with the girls.

With Grandpa Papi in the hospital..

Yay! Daddy and Sammy are finally home..

Once home, Sammy tried to take steps to walk over to me and promptly hit the floor flat on his face. He then did it once more hours later cutting up his lip which was followed by a low heart rate/ Brady episode. As in the past, we could see some regression from the illness and that we needed to help him ease back into doing regular activities. It took nearly two weeks before he was fully trucking around the house again and eating with a stronger swallow. He has slept most hours of each day and has required oxygen blow-by near his face to counteract saturation problems during sleep. Overall, however, Sammy is doing great and we are thankful that the illness did not take a greater toll on his overall health.

Sam getting back to walking in therapy..

After all this craziness..it was inevitable that Maddox would contract the same cold illness so I was not shocked when he began getting congested during week 2 of life at home. The Dr informed us the virus was all over town and unavoidable even with washing hands and wearing masks. Max proved to have a very robust cough that has been rather effective in overtaking the bronciolitus that the pediatrician had confirmed at our first followup appt. He had a day or two of bad junkiness in his chest and slower feedings, but still managed to make it back to his original birth weight by the 2 week followup appt. He does continue to have these fast breathing patterns which we first saw in the NICU but I think he is doing well overcoming the RSV, which apparently can be quite dangerous for all infants.

As we head into Max's 4th week at home, I feel so much more at peace. We are getting back on track and I look at my 4 sweet kiddos and feel utterly and overwhelmingly blessed. We have several friends who have also delivered recently and we are so happy for their families. Babies are such gifts from God!

We are getting into a routine with Max's feeding schedule and his little personality is starting to become more apparent. The kids have enjoyed getting to know their newest little brother and Sammy gently pats his head at each meeting and says, "Baby!." Max just seems content to watch all the activity constantly circulating around him. We are praying for the niece of our Pastor who was full term, now 3 days old, and has had some episodes of apnea. I pray for their family and that answers come swiftly. No parent is ever prepared for unexpected health concerns at birth and in my opinion it is the worst kind of pain to not know how to help your child. God's blessings on this baby and all new babies.

Peace in 2012

After a seemingly long period of no major episodes for Samuel.. we had one Friday. Stressful, yes.. but somehow amidst the flurry of the moment I found things oddly quiet and I was greatly impressed by how the nurse moved swiftly and without panic to do something about a situation that could have gotten beyond us quickly. I had just walked in from picking up Sofia from school and enjoying a special lunch out with Jason. We figured it may be the last one for a bit since I am due to deliver by c section this Tuesday. The nurse was feeding Sammy by mouth with small foods and I guess she had just tried to give him a goldfish cracker as well. We have been making progress with oral feeding..and even some water.. slowly and steadily.

He still has chokey moments periodically, but usually can work it out and clear the airway on his own. As you might realize where I am heading.. Sam choked on the goldfish. But I usually just tell him to clear and give him time and encouragement. If I hear any sounds I know some air must be getting through and he will do best to work it out on his own. Well this time I think it must have stressed him too much, triggoring his autonomic nervous system instability because within moments he looked like he was locked up in a rigored pose and starting to grey out. The flashes of red to blue coloring we first saw were gone and he was turning stone grey. The nurse yanked him out of the chair and his body went limp. She did the baby heimlich maneuver and I could not believe how much force was needed to pop out that one goldfish. It was hard to tell if he was breathing but color was still bad so she took off for the oxygen and ambu bag in his room. I was a bit unprepared this time as it had been quite a awhile since a symptomatic episode like this. I really don't think the choking aspect was what led him to deteriorate so fast. I think it was the stress.

Have you ever found yourself amidst complete chaos? Maybe a crowd of people each individually, hecticly moving in completely different directions, swept forward by invisible forces and creating noises of such conflicting origins that mix and churn in such a disturbing calamity that you can't quite take it all in? I guess I used to join the ranks and give in to that hurried, racing lifestyle. I think I am learning to stop and take it all in a bit before getting swept into the chaos of the moment. Which is why over the holidays I found myself trying to slow down and avoid the crazyness..

Recap of our Holidays..

It has always been a real challenge for me to stop and quiet my own thoughts.. to look around, to look back and at what lies ahead. To really measure and weigh out what I see around me. This said, I took a break from blogging over the holidays as I tried to take in all of the events of the last year, the current focus of our life including the anticipation of being 9 months pregnant and about to deliver our last child.. and then furthermore.. looking ahead to the promises on the horizon for 2012. My goal was to enjoy a quiet Christmas, full of thanks and joy at how far from where we were at that same time in late 2010. Somewhere between the music programs and excitement of Christmas morning as well as an unexpected trip to Atlanta for a medical procedure for Sammy, I think I accomplished my goal.

Looking Back..

Last year's holidays were such a blur. With hospitalizations for Sammy before and after Thanksgiving, I had hoped we were going to give Sam a very special 1st Christmas in 2010. I still find it hard to remember that his first meeting with Santa had to be between the walls of the ICU. Then a few days before Christmas and after receiving his 9 month immunization shots, Sam fell pretty ill and by the weekend was in full respiratory distress, on oxygen and experiencing increasingly troubled GI pain. It was hard to focus on the joy of the season when feeling such sadness for his misery. Then the day after Christmas he awoke with seizures and increased issues and we opened our email to find the long awaited biopsy results from Atlanta sent to us on Christmas Eve, after 3 months of waiting. 76 pages argued for a diagnosis of Probable Mitochondrial Disease, Complex 1 and 3. Although no gene had been pinpointed, the malfunction in the electron transport chain in his cells where energy is made showed complex 1 and complex 3 deficiencies, showing that Samuel was experiencing problems creating energy (ATP) from the oxygen and food that passes through every cell in his body. This pointed to a degenerative, devastating neuromuscular disease that would be effecting many different organ systems and we had to swallow the news that this could and probably would steal our son's life. Not the Christmas gift anyone wants to unwrap.

That day Sammy ended up back in the hospital for several weeks and thus we began 2011 in a somewhat dark place grasping for some kind of hope with childlike faith that God had a bigger plan than we could yet see. Over the course of the year, God answered our faith with many unforseen gifts for Samuel, bringing incredible growth and better wellness. 2011 may have begun in a bad place, but we certainly ended the year in a completely opposite and brighter world. I don't know what particular change to attribute the promising improvements and wellness of the last 6 months of his life but all I can say is.. Thank you, God.

After several bad months in the first quarter of 2011, we had hit a particular low as Sam was beginning to lose weight instead of just not growing bigger. From birth weight of 8 lbs.. Sammy was just over 14 at 1 year. By the grace of God we finally received full time nursing at home for him in late March, avoiding hospitals by having help during a bad illness and further avoiding taxing outings and illness exposure during well periods. His routine was strictly monitered and he was getting much more rest than the typical 1 year old. Our new pediatrician started him on what we later called.. the "magic" oil, a medium chain triglyciride (MCT) oil that immediately produced weight gain results and may have had some other metabolic impacts as it bypassed the liver and was directly absorbed without major digestive effort. Additionally we hit the 6 week mark of taking the mitochondrial cocktail of vitamin supplements and levocarnitine ordered by our Dr in Atlanta and of which we had been told would take that period of time before absorbtion would start showing results.

Beyond the 16 hours of intestinal formula feedings through his GJ tube, Sam began also getting hourly pedialyte to keep him far from any risk of dehydration. Apparently all of these factors combined with avoiding illness to be the ingrediants needed to turn things around for him.

In March and at 1 year of age, he had not even really been able to hold himself in a sit for any period of time when placed there. Holding his head up straight was incredibly taxing and he was having multiple bradycardic events each week. He was not eating or drinking by mouth and had little to no vocabulary. By June, however, he was a different child. He began playing with toys for the first time and was trying to communicate with sign language and some simple phrasing. He was not only finally holding up his head with strength and getting into a sit position on his own, but he had started getting up on his knees and trying to crawl. He had never made progress with swallowing any food or fluids but during the summer was finally getting in tiny, miniscule bites.

How far we have come..

His growth continued to improve up to where we are now.. using sign language, playing with sisters, laughing (something he never could do in his first year), eating small volumes of various foods for the first time, experimenting with textures and just recently.. swallowing fluids. He is not in intestinal pain half the day anymore but does sleep more than any child I have ever met. He has had many ear infections and some short fallback respiratory and intestinal illnesses later in the year with one incredibly major cardiac event when we thought we might lose him.. but most issues have been overcome more quickly or have been few and far between.. such blessings for us all. Even as he has had to be on antibiotics every couple weeks for some ear infection or respiratory setback, he has not fallen off the cliff with these periods into his "dark" mode where we were a year ago and for that I am so thankful.

I have to say we were greatly blessed in 2011, not only by Sam but by our girls as well. They showed enormous strength and growth amidst having a brother with such special needs. They were supportive and encouraging. They understood when he needed more of the attention at times. Not many children their age have siblings with round the clock health needs and visiting nurses and therapists in and out all day. I have not been able to always devote as much of myself, even emotionally, as I would like but I know they understand. They showed us how much they were growing as well with their strides in school and with their extracurricular activities. They are working on the normal sibling issues but they have far more love for eachother than frustration over differences. I learn something from them every day and even more so.. they are teaching Sam. When I catch myself getting overly frustrated by normal concerns for them.. be it a school issue or particular growth pain like whining or not sharing..or as I experienced this week, a child is not paying attention and backing into a rack of glass in the store where I know the owner is wondering why I brought a child in the first place.. it is then that I have to actually pause and be thankful that these are 'normal' struggles and that in the grand scheme of parenting.. it is not a big deal. They are beautiful blessings to me.. even during the tougher moments.

That said.. I have to say Sammy showed me in one moment this year just how much we take for granted. We watched him take his first steps in early December. (I have to stop typing here to get my kleenex - will recalling that moment always make me cry?) What more could I ask for in the course of this one year? To see him walk before age 2 when we were told he might never walk..? To see him eating when there were those who said I was asking for applesauce lungs if I pushed him to keep trying? To watch him smile and laugh with full abandon while sitting up on his own in his bathtub, grabbing at bubbles that flew out of his favorite Christmas gift when at one time he was just a rag doll unable to fully reach and hold a strand of beads at 9 months of age? Miracles that are beyond our understanding. Priceless moments that have made our year so full.

Looking Ahead..

I know there are still long term health concerns that greatly threaten to steal my joy and I know that if this really is a primary mitochondrial disease condition, it could be a short reprieve from far tougher times ahead but I have to just focus on enjoying each amazing improvement we have experienced. The chaos of life just does not matter.. there are things that are full of peace and if we just calm ourselves and soak it in.. that is what will make our days and years of life worth living. At least this is my hope.

It had been bittersweet to celebrate these strides only to know too well what pain other parents are experiencing right now with their complex little ones. I carry those families in my heart and even though I don't personally know them that well, I feel like I do because we are all mothers.. mothers who just want to see their babies grow up happy and healthy. I pray for strength for these families because I know I can't ask God to take away the hardships of this world.. but I can ask that he help us to get through each day with Christ-like perseverance.

By meeting and learning of other children like Sammy I have never felt such heartache and frustration. HOW IS IT THAT WE ARE ALL SO BLIND UNTIL SOMETHING REACHES IN TO DISRUPT OUR OWN LIVES??? I would not wish the knowledge we have acquired on other families.. but at the same time I want them to know the same level of appreciation for what they have. I can't say that I have found perfect inner peace and understanding, but I have learned much about faith and hope. Maybe you have to have really experienced chaos to appreciate peace.

I feel like that has been a theme for me during this pregnancy as well. At first I went through a whole host of emotions.. from fear to stress to denial to even apologizing for it happening.. to feeling utterly blessed at the opportunity to be a mother once more..above all, I have found my way to the best place of trusting God, having faith and finding some form of peace. No matter what God has planned, it was intended to bless us. Lately there have been external stresses that threatened to shake me up and bring on more chaos but I am having to learn to shut those out.. to be clear about what matters and not to let anything turn my life inside out.

As I approach my delivery/ surgery date in a couple days, I realize that it is not for me to know everything that lies ahead or how to overcome every obstacle. It is only important that I focus on eliminating chaos from my thoughts and find peace about this next chapter of life. God gave me this amazing family. God brought me so much more than a son with Samuel's birth. Now I am blessed to meet this newest little addition and find out what 2012 holds for all of us. I know God is with us and I am thankful for the peace that brings to our family.