Monday, May 30, 2011

Land of the Free, Home of the Brave

Most people think of Memorial Day for barbeques and flags flying. But what is easy to forget is what we are meant to remember on this most honored national holiday.. those who fought and died for our country and the freedoms that we hold dear.

Today we woke bright and early and drove over to Barrancas National Cemetary at Pensacola Naval Air Station, where my father and many other service men and women's remains are laid to rest; the dates of their lives and the wars during their active duty service marked on white marble grave stones... a somber, peaceful place to feel the magnitude of their sacrifices.

The symbolism is not lost on me for why the graves all match and are lined up in almost regimental order across those fields of green. They are our soldiers. Each stone, a life that was lived in the name of our freedom. Generals and enlisted airman alike.. no longer set apart by rank in this sacred place, they were all lost with the same level of duty. Some lost in battle and others after very old age..makes no difference in this place.

This was a first visit for the girls. I only visit a time or two a year and before now I never thought they would understand. We explained to them that my dad's body lies there, but his soul is with God now. I worried they would break the peaceful atmosphere with questions and chatter..but no. They seemed to understand the significance and respect owed to this place. They left roses and we prayed. We prayed for men and women out there fighting for us overseas. We prayed that my father know in Heaven how thankful we were for him in our lives. There was a rose for each of his grandkids who he never had the chance to know, one rose for his daughters and one rose for his wife, my mother, who accompanied us today.

After we visited his graveside, we walked amidst the older sections of the cemetary. There are buried civil war veterans and their families as well as famous indian warriors. It was beautiful walking under trees as old as the graves. Those trees hold the secrets and stories about all those beneath their roots.

Thank you, Lord for the Red, White and Blue.

Saturday, May 28, 2011


As we go into Memorial Day weekend and as I am in a more restful state, I am finally blogging about the last week or two. You will have to bare with me if I am all over the place as I have a pina colada at my side.. celebrating the end of a good day. I rarely have a drink (like ever anymore) as we don't get out much so it will probably make me silly. Jason says I have no filter to speak of, showing all my emotions on my face.. a pina colada makes this all the more true.

This week Sam had some bouts with off-balance, illness-like behavior. It is hard to call it an illness since most of his bad days are more about bad gut function and pain, not necessarily brought on by fever or a particular virus. I am so tired of the counting of diapers, analyzing stoole consistency and questioning each next step.. 'more miralax or less?..more colace or less?... stop feeds or switch to pedialyte?.. more motrin? more cuddling? hit the hopsital? and then oh but now he is fine so no..' this sums up the constant weighing of how to keep him comfortable.

The last time I blogged he was having increased episodes of bradycardia amidst GI issues and that continued on through that next week on and off. He had both types of hypoxic looking/ desating bradys..the kind where he just looks like he might drift into never, never land and the ones where he is rigored and locked in a no breathing scarey pose. We have drawn the opinion that this is some kind of hypoxic seizure that is only occurring because his oxygen saturation in the brain has dipped too low for too long. It just happens so fast..from beautiful cheery sweet face to him locked into some kind of nightmare pose and dropping out fast.

One particular instance followed an early steps annual evaluation. There were maybe 6 women in my living room from the various therapies etc.. and then also the rehab equipment guy was here fitting Sam into his new activity chair. The chair is perfect and allows Sam a little more stabilization for getting upright and doing more fine motor rehab and working towards eating orally. Pricey is not even the word.. $3000 fancy high chair.. but it works! They also provided a bath chair which will make bathing a little more organized and safe for him. SO...He was doing fine and having a good morning. We had concluded with goal setting for the year and just as everyone headed out, the nurse took Sam off to his crib for some rest.

It was during this shift that Sam decided to introduce her into what we have grown to call our stiff, rigored bradys. He had another one for me and the occupational therapist this week while working in his chair on wednesday morning. He was not really into the session and all of a sudden he was blue and not breathing. The interesting thing is this time his moniters were not alerting. The levels on the moniter were dropped recently and I am hoping we did not prematurely drop these too low or else I will never feel I can even look away for 5 seconds. The heart rate level is set to alarm below 60 but I have watched his get into the 50s before it is alarming. His normal baby heartrate is 130 and I worry that actually being down at 70 for a prolonged period is still low enough for a symptomatic brady. IN the stress of the moment, we rarely analyze what the numbers are at during the event. We are due a cardiology appt so that will be something to ask. Speaking of appointments we had a neurology appt as well this week. I have little to say on it... always leave emotional and I was not going to let it all get to me right now. We had to get more bloodwork as his medds are getting increased and that was a big effort. His veins are impossible to access.

The girls have been out of school for almost two weeks and they are busy transitioning into a summer routine. The pool and playdates are big favorites right now. They did get to do some boating already, once with family and once with friends. The family trip did not include Sam and I as it was a Saturday and we did not have nursing. We thought it might be a bit too much for him in the heat so Jason and the girls got to spend the day with grandparents, a cousin and some family down from Minnesota. Maybe with a cooling vest (as we were recommended to buy by his Mito Dr) he might do better on this type of outing. Those are not cheap either so it may have to wait for now.

We are so blessed to live in a place with such fun outdoor activities. One of our friends took us and a few friends out on her dad's boat Thursday. The kids played on the beach at crab island for hours, having a picnic and watching the dolphins race the boat. Another friend along for the day had never been out boating and has lived here since 2006. WOW.. I felt guilty not to have introduced her to probably the best part of living on the emerald coast. It was such a great day! None of this would have been possible without the nursing coverage, so for that I am most thankful. I really wanted the girls to have some fun experiences this summer and right now we hope to at least once a week plan a little outing with friends.

This week I attended a change of command ceremony for a new friend who lives in our neighborhood. He was taking over the command of a division of Osprys at Hurlburt AFB. Sitting there, watching the order and honor of the ceremony took me back to my dad's years in the Air Force. With Memorial Day around the corner, it was a nice reminder of all the men and women who serve our country and have given their lives in combat.

The biggest news of the last week has been all the movement Sam is making during floortime and in his crib.. he is all over the place! Mainly rolling and scooting with his arms, but motivated to no end! He may move right on to crawling before he even learns to get into a sit. We are so excited to see this even amidst the bad days of GI pain and Bradys. It was nnice to see that there were still pockets of time where he was smiling and moving around playfully. He wants to get back up on the knees the way he did that one time in therapy... it won't be long from now.

The other big news are the strides Sam is making with his feedings. Up until last week, we had only gotten a few bites here and there and it was a struggle..then it seemed to be getting a little easier with him self feeding foods that dissolve in the mouth like mum mums. Then during dinner tonight.. he discovered grits. In perfect southern tradition, they won this boy's heart! He loves them and was not choking or turning blue. In fact, he was crying out for more! He even allowed some sips of water to help clear his throat. Water sips have been hit or miss in the past as well. I think the new chair is helping in some ways and the increased strength he has been building in his neck with physical therapy.

As for today, we broke normal saturday tradition and just relaxed by the pool. I invited neighbor friends and their kids over to swim all morning, and then we all crashed on the couch for an afternoon siesta. Jason cooked up dinner.. quite a treat! Shrimp-n-cheese grits with ham and veggies. YUM - Good southern summer fare! It was the ultimate gift of thanks for Jason to see Sam take off at eating it at the dinner table.

Included in my prayers this weekend are my sister and her family, relocating to a new home in Belgium. It will be a busy time for them but quite an adventure as well.

Well.. cheers to the week ahead and hopefully one filled with progress for all of us!

Thursday, May 19, 2011


Driving down the road on the way home tonight, a sweet little voice in my back seat whispered, "I don't want to grow big yet, Mom." I thought for just a second about saying.. " you and me both!" but instead I gave my 'growing older is fun and exciting' speech. You know the one.. think back to an episode of an oldie goldie sitcom like Growing Pains or Full House. I completely get how she wants to just stay where she is..don;t rock the boat. Bless her for those feelings of butterflys! I wish those were the extent of all our worries forever on..

Here are pics from Bella and Sofie's graduation/ end of year programs. Isabella's class award was for being "Most Expressive." This is NO suprise - whereever did that come from?!

Such sweet girls!

Samuel has been pretty sweet himself..even when not feeling so grand. He had a touch-and-go weekend with some transitionary GI pain. We tried to keep things quiet and not disturb the balance. Sunday night he seemed much better and I shot a few cute pics with his dad goofing around. He is making some progress in recent weeks. He even got some peas down the hatch this week in therapy!

Then yesterday, we had just walked in the door and I had a few things to put in the frig so I left Sam in the car seat in the dining room for a minute or so. As I walked back his way, I found him stone grey, eyes bulging and fully rigored in a hypoxic pose. It was back to that adrenaline rush that always makes me sick. I am amazed I don't have a heart attack myself. I start stimulating and rubbing him, pulling him out of the seat and trying to get him to just breathe. It does not get still feels like a rather animal instinct..all I am thinking at that moment is.. please no.. please no.. please no.

Overnight, he was ok but today while I was at Sofie's program, Sam had another of these horrible bradycardia and dsat episodes. His oxygen saturation was down to 30 and then even when she got the O2 on him he hovered in the 70s trying to get him back up to 100. She called me on my cell and said we might need to mobilize for the hospital and I shot out of there in a flash..something in her voice told me she was scared for him. I was so worried about him going into cardiac arrest. Calling 911 is such a hard thing as it is hard to know when to take this step with Sammy if it is going to happen often and he will usually recover. Clearly if your child is doing this and turning blue or grey you would call if you did not know his history.

The adrenaline of these episodes is going to put me in the grave. It just isnt healthy. He went on to have two more today, neither as bad as those first two but accompanying these increases in events, was a new unusual symptom.. skip ahead if you hate my BM talk.. but basically many, many loose pale stooles and an incredibly foul odor. On top of that the GI pain seemed to kick back in. Never fails.. we can't go a week or two without some new issue.

So, we have an appt for him tomorrow and hopefully the rest of his evening is less eventful. On a happy note, Jason came home early to relieve me and I was able to go up to my church to help out at the dinner and attend choir practice. I worried about leaving Jason with Sam after such a bad day, but I needed to get some room to breathe after being such a bundle of nerves all day. It worked.. I felt better as I soaked up some comfort as we sang, "Do Lord.. oh Do Lord.. Oh Do remember me.." It is all going to be ok.

Praying tonight for a friend who is awaiting biopsy results and another friend who is by her brother's side as he was in a horrible car accident and has sustained very serious injuries. God give them all calm and strength to get through each day.

Saturday, May 14, 2011

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 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!