Into the wild blue yonder...

My mind is in a fog going into this weekend after quite a busy week. Samuel's peg GJ feeding tube began giving us some trouble early Monday and by Tuesday I knew it was on it's final legs. Our local hospitals don't carry the GJ button tube he needed so we made the call to have it changed out up in Atlanta where we also hoped to get established with a new GI that is somewhat acquanted with complex kiddos. If the tube completely blew, we would be in bad shape as he can't go more than 3 hours without fluids or formula due to his metabolic issues. The tube is a lifeline for him at this point.

This is the old PEG GJ tube that has both a jejunal port for the intestinal track where we put all his feeds, and also a gastric port for the medicines and pedialtye that go directly into his stomach.

By Tuesday, we had to arrange a mission trip with Angel Flight as it appeared to be breaking down fast. They had someone already on call and I had approximately 1 hour to get together all of Sam's medications, paperwork, equipment, syringes, needles, diapers formula etc.. and make it all fit into one bag at a low weight requirement. In doing so I managed to miss bringing his power chords which made things stressier once we arrived in Atlanta. Angel Flight is this amazing organization dedicated to helping kids get to the healthcare they need in a hurry. The kids have to be stable and able to fly so our Dr had to sign off on those details and within an hour or so it was all arranged and they sent a pilot out to pick us up in Destin. Many of these pilots are students trying to gain hours with an instructor along for the ride. Others are more seasoned and are flying their personal aircraft.

One big snaffu that morning in making everything flow smoothly was this all was happening on same day as Sofie's first gymnastics performance. I caught a few minutes of it but Jason had to come and take over for me so it was tough knowing she would be wondering why I had to jet off so quickly. Here are some pics of her performance. For a tiny little thing, Sofia is built solid and this sport seems to really utilize her natural physical strength and agility. I hope it also helps her to learn to follow instructions and have more patience and focus. She sure is pushing our buttons lately and this type of positive activity seems to divert her a bit. Best of all, she loves doing it and I hope it will be something she continues as she grows.

Sam and I later boarded a tiny 4-seater plane... this was totally new to us. If you are one who gets scared flying on a commercial plane you would probably run from this experience in a flash! But it was actually a relatively smooth ride and Sam tolerated it well. I was a little concerned about his heat tolerance issues as the two doors were mainly full windows and without AC at 8000 ft on a sunny day, it felt like a greenhouse on the surface of the sun :) but we arrived safely and I can't put into words how thankful we were for the service of these generous volunteers. It is an organization that truly makes a difference in the lives of children with serious medical concerns.

In Atlanta, after much ado and some hiccups in the ER process, we were able to check into the ronald mcdonald house for the night. We met so many families there with children and babies over at the hospital and undergoing procedures. If only I could help others to see how when your children are healthy and you have never faced the traumatic experience of watching your child struggle, you are blessed. I hope people take time to consider their blessings and pray for those not so fortunate.

I will be praying for one particular family that I met this week. They have a 5 year old daughter who is fighting for her life in the PICU. She accidentally put the car into neutral after moving into the front seat of their car parked in the driveway. The car rolled off the driveway into an embankment and she was paralyzed from the neck down. Her name is Jordan and her family is devastated. Every time I meet a family going through these type of challenges I am struck by how many of them seem to be staying so strong in their faith and have courage that only God could supply. It is in the hard times that it becomes clear what we really believe. I also have a prayer on my heart for a good friend who just experienced a miscarriage after a long journey to become pregnant. I know she is dealing with alot of emotions and I hope God gives her peace in this tough time.

As for the rest of Sam's trip, he met with a new GI specialist and received his new GJ Mic-Key button at the hospital. He did have some periods of low o2 levels while sleeping prior to the procedure which I attributed to the NPO factor of going hours without food or fluids but overall the procedure was uneventful. We were able to return home within 24 hours and are planning to go back in 2 months for follow up. It looks like we will be setting up a team in that area for certain specialties. The new MicKey button is great since now we can remove the extension tubes during bath and floor time for therapy and such.. Here is a pic from a recent therapy session. He is working so hard on weight bearing. He is rolling all over for the first time and is getting chest off the floor consistently without help. His pediatrician says he is gaining alot of strength. Today the Dr. actually had an incredibly hard time checking his ears as Sam pushed him away over and over again. I love the fight in him!

One big positive to the trip was finding out Sam has yet again put on more weight..at a miraculous rate. He is 18 lbs and gaining! Everyone is pretty excited about this change since starting the hourly extra pedialyte and MCT oil. I think it may be the reason Sam is also making alot of progress in therapy. He actually now scoots around in his crib. Before, he always stayed exactly where you laid him down. What changes we are seeing!

It was wonderful that we got a chance to head back so soon after the procedure as the girls were not expecting it.. a happy surprise for them. Angel flights leave from private airports and I think we may have even spotted a few celebrities as we waited at the signature private airport in atlanta. Neat to see the fancy way some people fly.. I should have taken some pics of the hospitality staff in tuxedos and limos dropping off passengers to some of the fanciest jets I had ever seen parked not so far from our little prop plane. Our pilot said Sam was their VIP and was "riding in style."

We have done this once before but this time I was more relaxed and able to take a look at the views. Here are some shots on the trip home. What a beautiful view it was at sunset returning to our home on the gulfcoast.

Pre-Flight Check..Sam was completely done after a grueling day..

Leaving Atlanta

In that last shot I was getting a shot of the wheel as there were a few missing screws and I was feeling a little nervous about that..

As we began to make our descent, Sam had some issues with the pressure.. he had some color flashes that made me nervous but his heart rate maintained a safe range.

Funniest part of the trip home was the pilots searching music on their ipods, taking pictures with their cell phones and having to look up our airport on yahoo maps cause they could not visually find it.

Wow..beautiful.. almost home..

Our Angels.. the pilots who got us home safely. We will be forever grateful for your gift!

‘All that I am, or hope to be, I owe to my angel Mother’ - Abe Lincoln

Dear Mom,

I don't think any mother is fully appreciated by her daughter until she becomes one herself. This was true for me. I gained such a deeper understanding about who you are when I became a mother myself.

Webster's lists several definitions for mother, but the first one that is universally accepted is: A woman who has given birth to a child.

That is not a mother. That is a pro-creator in my interpretation. There is a second definition, however, that lists it's use as a noun representing a condition that is the inspiration for an activity or situation, such as: "necessity is the mother of invention". Inspiration.. hmm now that hits the nail on the head for what defines a true mother to me.

You are my inspiration. I can't even find a comparison. That is not to say we do not have our personality differences or that our paths always run parallel to eachother, or that there are not many moments when we drive each other nuts.. cause sometimes we do! But you motivate me in ways that no other have or ever will. You make me a better person just for knowing you. This blog actually came to be because I needed a better place to communicate with you this year, overcoming the hurdle of distance and your hearing challenges. I needed to be able to share the raw emotions I had along the way. You are my best friend and in high and low times... that is when you need your best friend.. to share things. Thank you for sharing my life in high and low times, mom.

During what seemed a perfect and adventurous childhood, through very hard years after losing dad, to the journey of your battle and victory over cancer, you have absolutely amazed me. You carried us with all with your optimistic, hopeful spirit. You still do.

I love you more than I can ever tell you. I love that we are different. I love that you challenge me and sometimes even point out my failures and flaws. I love that you bolster my confidence and you embrace and support my decisions. I love that you put my children and their cousins first .. always. Our friendship has been the suprise of my life. God had a plan for the two of us..oil and water at times, yes, but together through thick and thin. Always.

The greatest way in which you amaze and inspire me is in how dynamic you are in adapting to the peaks and valleys of life. You are hardly the same woman I grew up thinking I knew. God had a part in that. He knew there would come a time for you and me.

What I learned most from you over the years is about rising to the occasion. The footprints you have left in the sand have been like breadcrumbs for my own hike into unchartered territory. Thank you for being you... and for loving me. I love you. You are beautiful inside and out.

Amanda

Elephant in the Room

Yesterday turned out to be a bit taxing for Samuel so we are taking it easy today. After some slower GI motility this week..not much output and with meds not moving out of his stomach very well and then followed by a night of GI pain, Sam had a rough morning yesterday with a big brady incident and now is having some similar GI issues today and so I am trying to keep things calm.. of course as is becoming a common theme.. the nursing company could not come up with staff today so we have layed low and hung around home. He is having a better afternoon so hopefully we avoid any further issues. Here they are in the backyard playing on the swing set. Sam loves his swing but can only handle short periods as he begins to slump over and grow tired.

The fun of yesterday's issues really began Tuesday when meds went in at 6 am but by 10 am he was in discomfort so I vented his feeding tube, which basically means attaching an open syringe to let out the air. I got alot of residual meds coming back out which after that length of time means he is not moving anything on to the intestines for digestion. We now already put all of his feeds in the intestinal port since his stomach has such delays but usually he processes his hourly pedialyte and the meds in his stomach port.

SO that was our first clue. Most of the day he was napping or playing well with some transitionary periods of discomfort. We slowed down the feeds and switch to total pedialyte for a few hours when things were getting too uncomfortable. From time to time his breathing was louder with more "accessory" effort as the nurse put it with the retracting and nasal flaring and sucking in at the neck. But by Wednesday morning he seemed fine when the night nurse left. Sam had occupational therapy at 8 and we started some toy play when she first arrived. As I was showing his therapist how we had set up a more organized system for his fine and gross motor toys, Samuel decided to take a plunge from his balanced sitting position in front of the nurse, hitting head-first onto his little peek-a-boo toy. It probably scared him more than anything as there was a bang with the contact. I look over to see him sharply frozen in a breath-holding episode in the nurse's arms. This is where he stops breathing out of some level of stress. We think it is the trachea collapsing in his moment of wanting to cry out (sam has a weak cry that he uses very little.. crying requires too much effort for his throat and bulbur muscles) and basically getting his airway stuck in the closed position. It could be neurological behavior or it could just flat out be the way he throws a fit as some healthy kids do this too but it looks rather like he is trying to breathe but is obstructed and there is no sounds at all or movement of air.

He had major color change and the therapist seemed like she might jump out of her skin. The nurse did exactly as I would hope and stayed calm and nuzzled him to her chest trying to ease him to take a breath. I really was not worried as I have seen him do this before and always recover but there have been a few times that he fell over the preverbial cliff per se and required resuscitation efforts in the hospital. I have seen this happen to other kids before where they get so upset they kinda hold their breath but usually they recover alot quicker than Sam does at these moments. These are different than his bradycardic spells which come out of nowhere. Well anyways.. it was no biggie in the end and I thought he seemed fine but what I did not think about was that he was already working on more limited energy from a night or two of tossing over the GI stuff and this upset episode may have been just what he needed to bring it all back on.

Within minutes of the head bump incident, Sammy began having the GI pain again and we had to back off of his feed and end his therapy early. I felt he was calming and heading towards a nap so I left him with the nurse as I had scheduled my first hair appt in maybe over a year. I know that is ridiculus as there certainly should have been five minutes to do this but really the year has flown by me. So.. I had been looking forward to it and I thought it would be a relaxing experience.. a chance to have some "normal" time to myself. Well, turned out that was not in the cards..

Within moments of the stylist washing and getting set to cut my hair and just as we got to chatting about our daughters..the cell phone chimes. It was the nurse. It is never good when the first thing they say in a shakey and somewhat panic-sounding tone is "Now I don't want to upset you.. don't panic.. but we had some problems." She went on to explain that Sammy decided to have a big episode with his heart rate dropping from 130s to 30 in about no time flat. She thought he would recover from this right away as he sometimes drops heart rates and goes right back up but this time his sats dropped behind it and stayed down in low 70s so she intervened with oxygen and he eventually came back up to safe levels. I know this happens and some of the episodes are far more concerning that others but of course then it was hard for me to relax and let the stylist cut my hair because I felt so jumpy and nervous and, basically, a worried mess.

I checked back in later and he was fine but I never feel completely relaxed that I won't leave for an hour and never see my precious boy again. I lost my dad in that most horribly shocking way and with Sam it is actually somewhat expected that he will do life threatening behavior on occasion, although almost always self corrected, and more rarely requiring medical intervention. This is the hardest part of life as we know it now.

I can handle the tubes and countless medications and how to handle it when random people ask me "What is.. wrong with him?" and how to answer it without saying something like.."his brain is dysfunctioning and he has multi system issues". I could just say mitochondrial disease except that #1 noone knows what that means and #2 we think that is probably secondary dyfunction to neuro deficits or a hypoxic chain reaction that took place in pregnancy/ at birth due to the nature of certain events and the fact that no genetic connection has been identified. I have learned to now say something like.."He is medically complex" or "he has neuro muscular and nervous system challenges".

I have even learned to accept the concept that God did not make his life this way but he has made it so his journey, although different and far more difficult.. is special, meaningful and unique for all that he is doing to shape our lives and those around us. The girls seemed to have adapted to this as well.

I have learned that I can't always take the pain away and I am no longer asking God why Sam has to endure it.. because in some ways I know the answer is that the why rests in all that Sam has done to witness to others and change our own lives, values and beliefs. The biggest area where I am still struggling is in what yesterday and everyday further instills within me..pure and basic fear. I tell myself all the time that this is our new normal, there is no room for fear, and that his "misbehaving moments" as we have tried to call them in a light manner around the girls have become somewhat expected even though they comes on unexpectedly. I try to convince away my worst fears. I pray about them and try to find some peace. Those reading are probably done already with reading about my search for peace. Some days I think I have found it.. other days, not so much.

People who pray for Sam search me out for reassurance that he will be o.k... that he will (as they put it so often) "grow out of this". They need me to convince them of that when I can hardly convince myself. I love my family and friends. They want to believe like we do that this is just one small phase of his life and that I am strong enough to deal with it. They seem to believe in me far beyond what I can believe of myself. I am not going the other way and giving up in anyway.. but I have this layer of fear. I think I could live with working through these physical disabilities or challenges but will we have endurance to go years and years of constantly being on extreme alert about cardiac arrest? I type those very real concerns as that blessed baby in the room across from me is making the sweetest babbling sounds as he wakes from his tender afternoon nap. Yet..the first thought that entered my mind was.. so thankful, he woke up. He is safe and here with us. Always a corner of my mind can't help but go there.

How do I not look at him and think he might be gone if I blink? How do I walk out the door without him and not intensely feel dark thoughts that he could go through horrible events while I am gone when I know it has happened. Of course you say.. any of us could be gone at any time... but let's not weigh out the chances of that or I fear I will grow more neurotic about it.

It may come as a suprise, but my fears actually don't rest on who is caring for Sam. I feel most every person we have entrusted to care for him would never disappoint me in how they would handle his challenging health needs as honestly my expectations are just that they would do what all humans should do for eachother.. their absolute best and with a caring heart. We had NO preperation or special skill when God placed this child in our life but we have given him everything we have as all parents should with any of their children. Wouldn't most people have the same instinct.

I do expect people caring for him to be humane and professional but most of all.. to give him their best efforts and concern. None of us are God and may not be able to handle everything that arises.. some are more equipped than others but I expect that they do their best above all else and my faith in the human spirit is that most would. Unfortunately there were a few particular parties at the start of Sam's journey who we know did not do that or even care to try. I try not to focus on why. But I think that kind of negligence and disregard is rare as most everyone who has come into his path has given him their extensive kindness, humane concern, their utmost efforts to do their best and even when he mystified and escaped their understanding..they were as diligent as loving parents in helping him. The rest is up to God. That is where I need to let go of the fear and place my trust.

It is hard to believe that this beautiful child of God (exceptionally so..in my biased motherly opinon) is so very vulnerable. I sometimes think it would help me if the evidence of my fears were not the invisible elephant in the room. I love that song lyric "I'm pushing an elephant up the stairs.." Clearly it makes everything more difficult, breaks our hearts over and over and sometimes just sleeps in the corner but is always there and almost a tease in that just when you have started to forget.. it disrupts everything.

I see so many others going through this same type of journey and far worse situations. I think we are all in the same realm in one aspect.. we are just parents with boundless love and concern for our innocent children. Some seem to have found more peace and less fear over time. I see God in those people.

So I pray that I get better at facing each day with less fear, anger or disbelief. If I could change things I would do anything. I know my fears are selfish and won't help the problem but it is not so easy to learn how to let go of those honest thoughts. There is alot of God's light shed in our baby boy's life too and hopefully with time I can set aside my fears completely.

Cross It Off

There is something magical about crossing something off the never-ending to-do list. I absolutely love it! I have even been known to add an item to a to-do list or create a whole new list just to mark off the things I already accomplished for the day. Yes, I am neurotic that way. Today, I organized my pantry and kitchen cabinets, leaving me with a feeling of accomplishment. We did not have the nurse today so Sam hung out in the same room and slept off some tummy trouble and my mom had come over to visit with Sofie and although I should have been working on stuff for Jason.. I just needed to cross this off my list. It felt good. His stuff is on the list too and maybe with a more organized house, I will be better able to focus once I get to those tasks tomorrow.

As I worked on clearing out I thought about the families who were hit with the tornado storms this past week. We were blessed that all the family I have up there made it through in Tuscaloosa and north Alabama but my grandmother's good friend was killed and many homes were lost on the very street where my mother grew up. I thought about how blessed I am that my to-do for the day was to clear out the clutter of my pantry.. and not to clear through the rubble of a lost home. I pray for those families. It is sad that it takes a tragic event for us to look at our annoying list of to-dos as actually a sign of the things we are blessed with.. a home to clean, a job to do, a family that needs us, and the ability to accomplish what we need to in any given day.

I flashed back to memories of past hurricanes that hit our area over the years and how hard it was going through the homes of family and friends, their lives reduced to broken, soggy furniture and photos floating in the slush of muddy water. Ever since the first storm I experienced as a teen, I have appreciated that the objects of our lives hold little value and are easily taken away. I remember hearing my dad ask us to pack what would fit in one suitcase right before we tried to flee our home during hurricane Opal, only to find the roads crammed with traffic, and we had to resolve ourselves that we would be able to ride it out under the dining room table. I remember walking into my best friend's bedroom to a huge bouie that had floated in from the bay and although the house was virtually wiped of all furniture and prized possesions, her clothes still hung in the closets, half deep in mud. The images of this most recent set of storms just north of us has clearly left the same destructive path in it's wake. I pray they find new hope for rebuilding their lives. I have pulled some things from our pantry and am hoping the girls will appreciate an opportunity to donate them to one of the groups reaching out to those areas. I feel bad that this is such a small thing and that there is not more I can be doing right now. I feel bad that it felt so good to get things organized under my roof when so many are just hoping to have a roof over their heads this week.

Life is so unpredicatable and it is hard to see that at any moment any of us could be hanging on for dear life to whatever it is we hold precious. I think right now the weight holding me anchored in the storm is my little to-do list of unimportant projects that with time can be crossed off. It is reassuring that in times of uncertainty I can exert some control over that list... if I don't get bogged down in defeatism emotions from seeing the sheer volume of things that have been on there for what seems like forever.

I hope that Sam will reach all the long term goals I have for his life, as well as, finalizing some of the endless answer-seeking missions but in the meantime, he continues to tap away at a wide variety of more attainable "projects", each of which will build upon eachother and dramatically shape his future and overall growth. I will do my part to cross them off one at a time, always adding new ones in their place. That is the beauty of the endless to-do list.. there will always be something new to push us forward.

The Narrow Gate

I attended my MOPS (mothers of preschoolers) group meeting this week, which has been somewhat rare for me this year. It was a hectic morning with getting both girls fed, dressed and out the door, training a new nurse, tracking down a tardy physical therapist, securing food for the potluck meeting, ordering meds to refill, and then getting broadsided by a phone call from Jason to say that my child is the only munchkin in the her class whole school in full uniform on a spirit shirt casual day... ugg..all by 8 am.. so after packing up change of clothes for her, stopping by at the meeting to secure someone to help with my check-in duty at the meeting and then getting across town to my daughter's school with the new clothes.. I finally made it into my seat at MOPS, over an hour late to the meeting. I hated the breakneck feel of that morning.

I marvel that for 2 years before everything got intense with Sam's arrival last spring, I somehow lived and breathed the details of co-coordinating this group of women along side a girlfriend. It was possible to accomplish because it was something that fed our spirit. We would wrestle numerous plates of food, bags of projects, wrangle up volunteers, decorate and plan themes and speakers, organize outings and service projects etc....and after the meeting we would feel a rush of joy that we reached other moms. The rest of my life was crammed with everything we all do as moms each day. I worked from home and attended social stuff on weekends, hosted or attended book clubs, worked out at the gym and helped with church activities as well as singing in my church choir. At times I was stretched to the max but as the pursuits seemed worthy I just charged forward. I am not that girl anymore. I can't handle a juggling act anymore. Strike that... Not that type of juggling act anymore. I have had to make choices. I now juggle Sam's medicines, 12 specialists and all the various dr appts, hospitalizations, daily therapies, insurance, alarms, interventions, nurses, feeding pumps, worries that the sky is falling, meals and bills and normal junk, little girls (enough said), and one very understanding husband. But.. those things are in a far more narrow field of focus.

My energy is not as divided to external forces. I do yearn to be more involved in my daughter's school and rejoin my choir and maybe one day hold another leadership position, but overall I am keeping my eyes on what best serves God and our family.

It is hard now-a-days to miss the recent trend of many modern moms juggling insane schedules of family and personal commitments, feeling obligated to the "hurried" lifestyle. They feel compelled to say yes to everything or to all the wrong things, often at the detriment of their children and marriages. I can't believe how many moms put going out in the evening throughout the week at the top of the priority list or spend hours at the gym and 10 minutes on homework. Learning to say no is a very important skill that every mother should learn, especially that of saying no to our own selfish wishes for certain freedoms of our past pursuits. We have to put the brakes on life in the fast lane. We should focus on the most important commitment handed down to us..our roles as wives and mothers. If we fragment that time with too many alternate pursuits, even the healthier variety.. we will be just that.. fragmented and spread too thin. Here is a line of scripture that spoke to me of this important choice. It really requires purposeful discipline of which I am still at work myself.

Enter through the narrow gate; for wide is the gate and spacious and broad is the way that leads away to destruction, and many are those who are entering through it. But the gate is narrow (contracted by pressure) and the way is straitened and compressed that leads away to life, and few are those who find it. Matthew 7:13-14

Tonight I pray for 2 moms that come to my mind battling the need to make good choices about where their attention should fall from hour to hour. I pray they see the good they can acheive in just creating a calmer life. I pray we all acheive a calmer life by choosing a more narrow path.

News on Sam today: He gained even more weight on the new regime of adding hourly supplemented pedialyte and fatty oil to his already beefed up caloric continuous feeds.. He is now 17 lbs 5 oz and his Dr seemed encouraged at this rate we may actually get back on some kind of growth curve!!! Also he has used the hand sign for daddy several times in the last 24 hours which is quite interesting as we just introduced the sign language over the last couple weeks. I think this may be a way he can better communicate with us until he is better able to access oromotor skills. Sam does not make many sounds beyond dadda but his therapists thinks much of this could be due to the neuromuscular and airway challenges he faces..we expect them to grow with time.

Easter

Here are quick pictures from the weekend of Easter activities. We did not really do any formal Easter family pictures because it was already a jamm- packed weekend but I did catch a couple cute candid shots of the kids enjoying the beautiful weather. They had a great time and I think they still seemed to soak up the meaning of this very special Christian celebration.

On Saturday, our church held a Resurrection Celebration for children. Our girls sang with the wee one's choir and enjoyed an Easter egg hunt as well as many fun activities.

Easter morning at home with the baskets before going to church..

Egg Hunting at the grandparent's house with a cousin along with relaxing on the back porch...can't ask for a more easy going afternoon.

It was such a lovely day..

Overall, a very memorable and meaningful Easter.