Good Friday

"Good" and "Bad" are words we use excessively in raising our children.. often without realizing the way that can form their opinions about things being strictly one way or the complete opposite. The fact that although things may on the surface seem quite painful or sad, they may actually be "good" for us is something we learn with years of experience.

As a child I found it odd that the Friday before Easter was referred to as "Good Friday" when I did not understand how anything as sad and painful as Jesus being nailed to the cross could ever be considered "good". On this day, we reflect so deeply about all the horrible pain and persecution Jesus bore for all of us, sacrificing his life on the cross and forever changing our lives. We sometimes forget to explain, however, to our children the important message that good outcomes sometimes require facing challenges, pain and sacrifice. God would never have intentionally allowed his only son to experience such a horrible plight had it not been for how much "good" to all mankind would come with Christianity and living a life that glorifys Him.

I talked to Bella and Sofia about this because they didn't really understand it. I explained how it was important for people to witness Jesus' good and miraculous acts like healing the blind and feeding the poor, they also needed to hear the less welcome messages he was bringing to them from God about what was wrong with their actions... the cold, hard truth, if you will. Future generations needed to absorb the actions of the politically motivated leaders and the mob on that horribly painful day and realize what it means to be a Christian now.

The symbolism of that day (over 2000 years ago) unveiled the good and bad in all of us and most of all, he rose from the dead and lived..and forgave us giving us all the hope of everlasting life. So when I think of all that we celebrate during Easter week, I am quite humbled by the "good" of this horribly wrong time in the life of Jesus.

On a personal level, this weekend brings much emotion to our home as we think back to last year and Sam having spent his first Easter with us, only to be ambulanced to Sacred Heart two days later after his respiratory and heart rate symptoms became quite serious at home. I actually started putting together a video of the pictures of those days and had to take a break as it was just too raw. It was not the kind of first Easter I would have wished for as what was supposed to be a time of homecoming from a week in the NICU. The kids were hunting eggs and happy to be new big sisters, meanwhile, I was sick with worry over the fragile little man in my arms. Here were some pics from Easter 2010.

This year will be different as he turned the corner Tuesday night and seems to be almost back to baseline right now. Since Saturday, he had 2 antibiotic shots and 4 Dr. appts and lots and lots of fluid and rest. He has been on about 1 oz of pedialyte per hour on top of his 19 hour continuous feeds of 24 cal formula. We just lowered to half the fluids after they saw him start to improve and gain some weight again. He had lost nearly all of the weight that we had been so proud of gaining after starting the MCT oil 2 weeks ago. But fortunately we gained it back with the addition of all that fluid. He is a walking water balloon now. Kidneys are doing good turning out lots of wet diapers and we are even keeping a somewhat more normal schedule on the #2s. Oh the glory in counting those!

Here are pictures of Sam feeling good and playful. He is doing well now at holding things up above his body, against the weight of gravity. Making much progress. We are awaiting a bath chair and activity chair to help with better positioning.

Tomorrow should be busy with a resurrection celebration at our church and the girls singing in the wee ones choir. I am also looking forward to a visit with some friends in town visiting. We had the great pleasure of a quick visit with another family of friends on wednesday afternoon when Sam seemed ready for some fresh air. Here are a few pics I grabbed off her blog..the boys had a great time interacting.

Later that night we had a fundraisers party for the ronald mcdonald house and it was a nice outing. I was worried about it taxing him after such a hard week but he seemed to love the breeze and the people watching. He is so quiet and good in his little stroller seat, all the while his sisters were running around like hooligans with all their buddies.

He did get to meet Ronald McDonald himself but I think the character was a bit nervous about holding him carefully. Sam wasn't scared in the least, cooing at the clownish man. I think the character scared me a little though (flashbacks to the movie IT.. yikes!). I was really glad we could support a cause that meant so much to us. I hope to do even more for them over time. It was such an easy fundraiser and each shirt meant a night in the RMH for a family of a child in the hospital.

I recently met with several new nurses who may become our permanent week day coverage and they seem very capable. We have had some other interesting encounters in this process. I won't get started on the smoking fiascos and learning some nurses have siblings serving hard time. We are learning to be clear about what we need for his health and also feeling comfortable trusting someone in their care. We had a day of new frustration when we found out the nursing company (who had suspended service way back in January because they said insurance would only cover 60 hours a year) had just discovered that we had actually 60 - 8 hr visits per year..so basically we could have been covered through much of the hard winter months of illness in January through March. I was frustrated but it is water under the bridge now.

It has been slow getting things rolling and we only had the nursing a few days this week due to staffing issues but hopefully we work out all the kinks soon. I look forward to getting into a more organized routine and can help support Jason's office with administrative and marketing tasks. Having some aid here has already been a huge blessing. Thank you, Lord, for a few extra loving hands.

Speaking of hands.. Sofie and I enjoyed some girl time and she experienced her first manicure. I have always been a little strict about the no polish on little girls rule handed down quite literally from my Dad's rules for me and my sisters. Well, it was fun.. a little touch of pink never hurt any girl!

Message in the Sand

The local section of our daily newspaper ran a story today entitled:
Message in the Sand. The piece described incredibly artistic sand sculptures under development this week on our local beaches. Below are pictures from the Daily News by Nick Tomecek from a piece on fighting back against oil companies with peaceful protest and Mark Kulaw's picture of them working on the sculpture.

Showing the immeasurable beauty and diverse pursuits available to visitors of our fine fishing village turned fashionable vacation destination, the main focus of the project was on making the statement about how we have clearly come so far since the devastating BP oil spill that brought our local economy to it's knees this same time last year, leaving so many out of work and crumbling long time profitable businesses. A shock to our economy and an even bigger shock to us that what drew us all to settle here and value the area might be so easily jeopardized...and not by the hurricanes we usually work so hard to prepare for. The hurricanes were hard enough to deal with but we never prepared for this. The clean-up and restoration efforts made to return our snow white beaches and emerald waters to their immaculate and ephemeral state are quite obvious to the locals, renewing in us a more appreciative and protective attitude towards the incredibly beautiful place we call home. In this story, I could not help but find parallels to my own family's journey this year.

I remember hearing the news of the oil spill and although it was all over the television and noone could speak of anything else, I had too much "else" to think of at the time. I was sitting in a chair in the ICU by my 1 month old son's bedside, after what had been the hardest month of my life. That morning they had approached us about placing a G tube in our baby to feed him. They also planned to wrap his stomach around his esophagus to prevent reflux, of which he had never experienced. They told us they felt his diagnosis and the source of his symptoms was encephalopathy, a very vague term that basically meant brain dysfunction of some unknown origin, hypoxic event or disease or deficit. I was a crumbling mess.

This broken mess we were surrounded with was not unlike what had happened to our region after the BP explosion spontaneously caused massive damage with 100s of thousands of gallons of oil gushing into our prized Gulf waters and stealing the life blood of so many.

At that same time, Sam was my life blood.. my little angel hanging on in a storm of horrible events. I could not find it in me to even begin to grasp how much our lives changed in those moments after his birth. But God knew that as his children, we would eventually experience dramatic change of some form or another and, yes, pain but also hope and ultimately.. renewed life. And nothing could be truer. I am not the same mother I was in that cold hospital room, dealing with utter disbelief and weakness. I was the "why me" that I never wanted to be. But you have to be broken to be built anew and like the beautiful coastline and the wildlife that is struggling to return stronger this summer, we will overcome these unexpected and disastrous changes. We will be stronger for it and we will have stronger faith about what really matters in our lives.

In our community there were many people who have lived 2 miles from the beach for years but never really walked across the street to admire the beauty of crashing waves or to hike along the bayou and see gators basking in the sun.. it was just part of the background..taken for granted. Well, now they are sinking their toes in the sand. I hear it everyday. They are reclaiming the warm feelings of what brought them here or (as is the case with many military retirees) what made them stay.

I am not yet fully able to appreciate the whole meaning of Sam's journey but I do know it has changed my family and we are so much more appreciative of the gifts God grants us each day. The next step is finding a way to process some of the underlying unanswered questions and anger. It is buried so deep and yet, ever present in my mind. The "whys" and "what-ifs" could drive a person insane. So I park them in a closet and in my prayers I try not to ask God questions that won't heal Samuel or my family.

Our gulfcoast community is also still dealing with this raw emotion of anger as evidenced by the near daily articles about the wildlife damage left unchecked and although there are no tar balls or visible evidence of the muck and oil on our beaches or in the water..the muck is still hitting our pocketbooks and causing anguish as people try to feed their families. The anger is visible in the words of those navigating the complicated, slow BP claims process and then there are the frustrations over who is responsible for our lost wildlife or who will make sure it never happens again. Some of this will just have to work out in time. And that is the message in the sand for me today. We must give God some time to bring the shores up and rinse everything clean.

Create in me a clean heart, O God; and renew a right spirit within me.
Psalm 51:10

Status on Samuel: He is still having problems relating to the latest illness but in some ways seems to be turning a corner for the better. He had 2 shots of antibiotics and his ears seem to be clearing but the GI issues persist and he is very dehydrated despite the large volumes of fluids and continuous feeds he is receiving. Praying for relief from the abdominal pain and less periods of respiratory distress. Hoping tomorrow he might be ready to get some fresh air after this rough week spent mainly in his crib.

The New Normal

Sam sure loves his daddy. He was in pretty weak shape in this picture and just wanted to be held.

We are quite changed from a few months back.. no longer shocked when Samuel has an impossibly frightening night of low oxygen saturations, respiratory distress and retracting, low heart rate episodes and the pain and in most cases the eventual GI problems. I mean it is pretty scarey and you never grow comfortable with these issues but we now know what happens and how it escalates. We know it as part of our life.. the new normal around here. This weekend turned out to be no different.

Isabella brought home a cough the other day after school and then shortly after I noted Sam's rattley breathing and more puny state in general. Within hours he was acting fussy and in some pain. Grandparents were here and he stopped feeling up to the visit. Within an hour or so of that, he was experiencing mottled coloring and so I hooked him up to the pulsox (he does not stay on this particular piece of equipement full time). The oxygen saturations were low and transitionary. He was dropping into low 80s and having little hovering periods even down to high 70s so I placed him on oxygen and tried to calm him. I made a phone call to our Dr. as he was putting both hands to his ears and I suspected yet another ear infection. The tipping point for other problems. I never got called back by the Dr as promised by the service. By the time the nurse arrived Sammy had better oxygen levels but was still in much pain. The night was a long one of this repeated behavior and he did not sleep at all. Noone did. Meanwhile, Bella was hacking up a lung, bless her heart, and with us so occupied with Sam, she basically soothed herself through the night.

The next day we went to our Dr.s office who thankfully holds saturday clinic hours. Bella, with her $40 office copay, was hardly looked at in the appt. "Just another cold.. all the kids have it." Now Sunday she seems relatively free of the cough.

The Dr. we saw was not our new pediatrician so Sam got to be a science experiment for yat another new face. He did find that Sam has an ear infection and required a shot of rosevin (no idea how that is spelled). He had lost about 4 ozs since our thursday Dr. appt, which I had yet to blog about but had been an absolute bright and shiney moment as we found out he had gained over 1 lb in two weeks since starting the MCT oil. This is the most gained in over 6 months of stagnant weight. He broke the 16 lbs and nearly reached 17! We were elated to have some progress! So it was a little frustrating to have the rug pulled out with illness the next day and now weight loss.

I am trying to keep feeds going normally despite periods where he has bucked at the food entering his delicate system. During bad illness we have to do this special interpretive dance figuring out whether to stay on fulltime formula, switch to pedialyte, slow the rate or give a break, hold the fatty oils or push them in tiny amounts..too many decisions for groggy moms and dads at 2 in the morning all the while debating oxygen settings and whether changing his diaper will irritate him and set off more bouts of pain.

He went on to have ups and downs all day, ending the day in a bit of the no-fun mode with low sats and labored breathing. The nurse had his work cut out for him and as he put it heading out the door this morning.."I earned my money tonight." I feel that all the time..without the pay. Mothering pays in longterm dividends, I guess. :) I am still battling nursing agency issues with not staffing the hours we are approved for and then sending smokers when told not to do so. The night nurse right now has a pungent smoke smell on his clothes and we are frustrated becuase he is actually good with Sam but feel like this may be more stress for his breathing issues.

On a side note, I got to get out a bit for dinner tonight. Sam was perked up late in the afternoon and so I joined some neighbors for an early dinner. I spent much of the time thinking about Sam but Jason did a really good job handling everything and said Sam did ok at first but slowly creeped into more negative territory. I came home to relieve him so he could get his evening workout in and then it was just rocking Sam and trying to soothe his sweet little raspy crys until the nurse could get here. I laid in my bed listening to his horrible breathing through the wall, feeling utterly powerless. Why can't we take it all away from him and make him well?

Today has been more of the same with the addition of some bradycardia episodes..low heart rate dives. He looks quite freaked when he awakes during those times. It must feel rather horrid to have your heart rate go down from 130s to low 50s in no time flat. It is lucky he is on his back or we would have injuries to worry about and not just ricks of cardiac arrest. Lord, give his heart some rest today and help his ears to heal so he can breathe easy and tolerate feeds in comfort. May the God of hope fill you with all joy and peace.. Romans 15:13

Smiling Son

I had one sweet smiling son this morning and nothing makes me happier.

I find Sunday mornings a rare time of reflection and attempts at laying plans for the week ahead. Beyond the fact that it is the intended day of prayer and rest, Sundays are a good day for family time. We had some of everything this weekend but the one big change was having night nursing for the first time. This should equal much needed rest but I did fight the urge to peek in on him several times in the night as I heard the alarms and heard the nurse responding. The girls went to Jason's mom's house last night and so we got a night out at a social function. It was fun and hopefully we can make those kind of plans more often over time.

We did have one little issue when the night nurse arrived for the first time at 11 pm thursday evening. She had a rank smell of smoke and I got an uneasy feeling about how I would approach the issue since we had been clear with the agency that Sam can not be around smoke of any kind. It is not my place to judge another person's decision whether to smoke or not in their own life.. although personally I have never understood the appeal, but my main concern was for Samuel's health. He had a therapist not long ago who was a smoker and the cloud that followed her was definitely impacting his condition. I would watch him writhe and moan the minute she took him into her arms yet every other therapist instantly warms to him and brings smiles and cooing. While close to her, he started breathing hard and retracting.. it was his nurse at the time who suggested we terminate the relationship and get a new therapist. It was the only way to go if we hoped to avoid Sam expending unnecessary energy and risking metabolic crash symptoms.

To make matters worse, this nurse is 6 months pregnant. So my first thought was that surely she was not a smoker, but perhaps lived with one. She was incredibly kind with Sam and proceeded to competently handle all his needs that night. I actually really like her but could not get past worries about the air quality in his vicinty. I decided to approach her the next day and actually it went ok. Right away she confessed to having smoked right before arriving at our home and then the more strange answer, was that it was her last cigarette. She had decided to quit. Jason was not convinced but I try to give people the benefit of the doubt and decided to discuss a way to adjust the situation for that next night's shift. She offered to shower well and wash clothes and avoid all smoke. Then when she arrived I noticed the smell was not as strong, although not entirely gone. One of my fears is that she decide to take a smoking break while I would be gone or something and then Sam is not being properly monitered.

I think we have decided it is just too risky and we need to stick to our decision about avoiding environments and situations that would overtax his delicate system. It hurts to think there are people being so careless and haphazard with the health of their unborn child. We made such an effort to provide the safest and most advantagous environment for our son to grow and yet he had to experience such trauma and distress. Why would anyone want to do anything that might harm their baby? If only they knew the anguish and pain of watching your baby struggle. There is nothing I could compare it with to tell a first time pregnant mom other than to say this is the closest they will ever be to God and to tread lightly in his shadow. In my opinion the ability for a woman to carry her developing child and give birth is the most spiritual and miraculous gift we are blessed with in life.I will pray she makes the right choices for Baby Landon.

As for Sammy's health this weekend, he did ok and got lots and lots of sleep. He did have some brady episodes on Thursday and Friday night and one long one this evening but Saturday was fairly uneventful. Friday night his oxygen saturations were not great with many dips into the lower 80s although most quickly corrected and he hovered around 93. The nurse was very nervous leaving here that morning but by yesterday evening he was 96 and on up to 100 so whatever was bothering him seemed to be lifting. Today was good but tonight he had a longer low heart rate brady and his breathing is a little noisier so without having the nurse tonight, I think it will mean sleeping with one eye open. ;) Sam has been having some formed BMs which is quite the rare and positive news! Silly that I am like a BM cheerleader now..wow the paths our lives lead us! I am guessing the MCT oil is the culprit but it actually is supposed to do the opposite. Sam never fits what you expect..no new news there!

One last new change for him lately has been keeping his mouth in a more closed position. About one week after his birth, right after his ALTE (acute life threatening event) in the NICU actually.. Sammy started an odd behavior and (dare I suggest)a telling symptom. His toungue would flash in and out of his mouth in what was called a fasisculation pattern. We did not learn until much later that this behavior could be a symptom of some oromotor dysfunction and some even suggested it could have been seizure activity. It later shifted from the in and out pattern to sometimes just being out of his mouth for long periods of time. It was also thought that he might have been trying to hold open the airway by protruding the tongue.

I am quite pleased to see him keeping it more closed now. He has such a sweet smile and I am seeing it more and more lately..he continues to make babbling sounds and we are doing some sign language to encourage his comunication. I pray he finds his voice in time.

I have prayers on my mind about the larger issues facing our nation and the policy makers leading our country. I hope God gives them quidance to find the right way to approach each challenge.

Sometimes I Hit Delete

Sometimes I think I am done in by it all and I get in this rut of only thinking negatively.. not able to see the big picture. On days like that I hit delete. I have to just let the day be over.. erase it and start over fresh. I did that tonight with a blog entry I typed last night but as I was a total hormonal mess... I did not hit the submit button. I set it aside, knowing I was letting my anguish and worries spill out all over the place and I need to cope better. Worry and fear are clearly the enemy. Gotta delete that stuff. Then I woke up this morning and Sam was beaming the most adorable smile ever. I melted. He always reminds me that joy is so much stronger than pain.

I had a nice picnic in the yard with Sam and Sofie the other day. I tried to enjoy our fast food picnic quiet time listening to lovely spring sounds and not concentrate on all the weeds I could spot around me that need pulling! :)

The other day we did a follow up to check Sam's weight progress on the MCT oil. He had been losing weight steadily since the last illness even while being fed continuously and at a beefed up calorie level of formula. 1 lb looks like alot when you only weigh 15 lbs and are over a year old (not even double his birth weight). Well..the oil seems to be helping for now but we need more time to see how it will go from here.. at least it seems he has gained some weight. YAY! He does not love it going into his belly and I think initially it makes him quite miserable.. but 8 ozs in a week.. can't argue with that. He needs the weight so much! His eyes are not hallowed out today like they had been looking to us and overall he seems happier. He even had a few formed BMs (not to get into that fun subject!). Dr. R seemed pleased. I always cringe every time someone says.."he is getting so big" before realizing he is not a 6 month old. They don't know we worry so much over this and in all reality the weight stuff is not obvoious to others since he is rather proportional in length..our short little guy. We go back again in a week for another check up. He is keeping rather close tabs on Sam and his weight. I am glad though as I don't like to be the only one paying attention when his diapers grow loose on him.

We started nursing coverage yesterday. What a looong day! Going through orientation with each of them and all the questions and more paperwork is exhausting. I pretty much have to let them shadow on meds and tubes and pumps and alarms etc.. as they want to do it how we do it normally. Having to relive the full medical history always has a negative effect on me. Then I dipped down to a new low last night when the house got quiet and I sat down to blog. Better to delete that one. Better to move forward and find my positive happy side. On that note, Sam seems to like the nurses and he was downright playful today with Nurse R.

Today, I actually got some things done and had a chance to attend Isabella's field trip for a few hours. It was a good day. The class went to the beach for a picnic and to play in the sand..can't beat that kind of field trip on a warm spring afternoon. One thing I love about her school is the well planned field trips and how many parents are always in attendance. Parental involvement tells you so much about a school. I hope with nursing aid I might have more opportunities to be involved. First grade is right around the corner and with the hospitalizations and concerns at home, we really were kindof winging it this year. I want to have a more purposeful preperation for next year. These young years are so important in who they become one day. One thing my kids will have gained this year, hands down, is empathy for other children and those that are sick or disabled. This is where God is at work through Samuel. Not sure if he is so much at work in me though when I am pulling my hair out over juggling them all!! Ha Ha! Tomorrow is a new day! :)

Gotta get it together!

I am not sure why I am blogging today as I have no time and am flooded with a million to-dos but I guess I need an outlet. Late in the evening, I have been trying to work on a little photo video project of Sam's first year and honestly I am having a hard time getting through it. I am a total emotional mess. I look at his sweet face on the day he was born and I think... what a nightmare it all was and yet the most beautiful little man came into our lives amidst traumatic events. I can't let go of the anger I have about the events leading up to the birth. The very complicated pregnancy and how my Dr kept saying everything was absolutely fine.. I know I have to let go and that God wants me to do that. I need to process these rough feelings and in some ways, I need to allow myself to grieve the transition we have been in this year to where we are moving forward with a positive and hopeful attitude for him. It is just easier to say it than to overcome it.

Sam slept most of the weekend and although he initially had a rough time with the introduction of the MCT oil to his diet, he seems to be handling it ok today. Praying he has gained by the next appt tomorrow. His little diapers are seeming to get bigger on him and I realize they are not growing..he is getting smaller. He has not been able to hold the stance on hands and knees as he did for the physical therapaist the other day but it gives us something to work for. He sat in his little bouncy seat for a few minutes during my impromptu garage sale saturday morning but as it warmed up he seemed taxed, eyes getting red and showing fatigue and so he went back inside. We are supposed to have nursing care start with full time day coverage and weekend nights soon but they are having trouble getting it staffed. One of their issues is that all their nurses are smokers..crazy insane! I have to set limits though and he could not handle the smoke he smelled on a therapist's clothing and it nearly put him over the edge every time she walked in our door so I am going to listen to him on that one. His mito Dr said smoke is a HUGE problem for mitochondrial production.

In an effort to get my mind back in rainbows and sunshiney places..I am going to try very hard to tackle a few big home projects this week. I feel like alot has been allowed to slip through the cracks this year and the cracks are beginning to show!! I need to put more work into my new years resolution of shedding out the clutter in my life (physical and mental)so that is the name of the game this week..after we tackle therapies, Dr appts and all the normal craziness! Well better run get my kids from various schools... The day is gone in such a blink!

Answered Prayer

If you saw my facebook post this week, I had this sweet moment with Bella. She came to me in our backyard. She said, "This is for you, mom. It's us, your 3 hearts!" It was one of those squeeze em tight and hope they stay like that moments.

We had a big prayer answered today. Private nursing at home. Let me rephrase that to say.. full time private nursing at home (for however it lasts) 11 hr days and 8 hr nights. Finally. Finally a chance at accomplishing some normal activities and focusing on more than all the medical stuff surrounding Sammy's daily needs and intense demands during crisis periods. I love nurturing him and being there for all his extensive needs, even during the hard times, but frankly I am so exhausted sometimes and there are other parts of our life that have disappeared or require more attention.

What will the nursing free me to do? Hmm..
1. Work - contribute financially or be able to support Jason's business.
2. Get involved - with my girls on a closer/ less distracted level.
3. Sleep - what would 8 hours straight feel like?? shoot - 4 hours on my bed already feels like heaven over a pullout hospital couch for any period.
4. Turn it all off - Not always have to be "ON" or locked and loaded as we put it..ready for any crisis that might take place unexpectedly..because if Sam is in any way predictable it is that he is always unpredictable in falling off the metabolic cliff of sorts.
5. Get Organized - collect myself a bit. I feel like all the interruptions of routine that have taken place in life have left me scattered and cluttered. I am doing better at my priority resolutions..but need to do more.
6. Reconnect - with my husband. Maybe actually have date nights in our future and not have to beg, borrow or steal to convince family that he won't die on them or require resuscitation measures in the 2 hours we are away. They might be able to only take the girls and he would have the nurse.
7. Enjoy Outdoors - Not worrying if we will pay for it after a taxing stroll round our street earns us a trip to our local ER with basically mutisystem breakdown over a little heat.

Most of all..

8. Enjoy Samuel for just who he is..not a medically needy, chronicly complex little science experiment but our little boy, who needs carfree bonding time with us when we can snuggle up not overly exhausted from the methodical measuring of medications, setting of pumps and responding to alarms - big and small. Not feeling the negative effects of constant periods of racing adrenaline in your bloodstream while intervening during crisis. It is toxic to our health, but also to how we interact with him. He is not a priceless glass vase. It would help if we could sometimes forget the medical..just be mom and dad. That is why when we had nursing before for only those 2 short weeks (60 hours) prior to and following the last hospitalization we had this tease of an experience and such a short glimpse at what life could look like if we had some relief. I hope this time will be more longterm but for now I am just sending up my thanks to God for answering this prayer. I spent the day filling out paperwork and meeting one of the nurses who seems just wonderful.

I am also sending up prayers for a friend who is going through a tough time emotionally right now while at home with her kids with her spouse away in rehab for personal concerns. I know she has had to be a rock for them all for so long and is at a real low point this week. I hope God sends an angel to hold her up and show her all that is right in her world. Her sweet children and supportive family and friends. I hope God whispers in her ear that she is not alone and has a multitude of soldiers in his ranks standing by to help her through this. If I have listened to anything God has shared with me in those quiet moments of prayer it has been that none of us are alone on life's journey and that he may not be able to right the road you are on or make it perfectly easy to walk on.. but he will make sure that the road ends where it should.. eventually.

To recap the last week, there were lots of highs and lows for all of us. After Sam's ER trip and shots of yet another antibiotic for the ear infections that would not respond to tons of antibiotics and seemed to bring on the rest of his issues, we had a seemingly full recovery of the infection with shots of rocefin directly to the bloodstream!! YAY! However, we did have some concerning news in that Sam continues to lose weight even having returned to his full diet and caloric levels. He gets roughly 700-800 calories a day of formula in his GJ tube in the course of one day that is fed at a slow rate of about 45-55 ccs of beefed up 24/cal/oz formula for about 19-20 hours a day. He now ways a little over 15 lbs and was 8 lbs at birth. He weighs less now than he weighed in August of last year. He is 26 inches long and was 19 at birth. He is proportional looking in appearance (no ribs showing or anything) but is going down in clothes and diapers a bit even having only lost about 1 lb. He is not on the growth chart by any measure at over 1 year of age now but we threw that out awhile back. The perplexing part is that kids do usually slow in weight gain at this age but usually because they are running or cruising around burning more fat and building more muscle mass. Sam spends most of his life asleep and laying down.

It is due to the weight loss and stagnant gains that his Dr called for addition of a new supplement to his food. It is called MCT oil and is a medium chain triglyceride, fancy name for a type of fat that is more easily digested by the body...or so they say. Apparently Body Builders are big users of this particular product. He is his father's son.. The idea being that if for some reason on a cellular basis, Sammy is burning through an insane amount of calories and needs more, this might infuse him with more calories that don't increase his volume of intake. Basically the intestines can't take much higher rate of food or more volume so this is more concentrated.

(Reader Beware: poop-talk coming down the pipe)

However... MCT oil has been known to cause diarhea and mal-absorbtion syndrome since it can coat the intestinal walls and make them slick and less likely to absorb nutrients, which if you follow my ramblings, you know is something I already worry is taking place on another level. I have seen how well he absorbs things put right into blood stream (TPN and meds etc.) and wow what a quick responce we see. I worry about making a bad GI even more complicated. Sam rarely has formed poops, rarely even poops period but when he does they tend to be loose. SO.. when his Drs say he is often constipated I have to correct them and say that it seems more dysmotility than actually a blockage or back up situation requiring more fiber/ fluids. SO..we had big decisions about trying this new solution and made the call to proceed. Well.. we started it tonight and he acted in pain minutes after I put it in his tummy (left me wondering if it should have gone direct in intestines like the food?). He did finally settle down and go to sleep. Hope it puts some meat on my little man. We go Tuesday for a followup on this to check weight and GI status. On another note..remind me not to run into people in the waiting room there and even slightly try to explain answers about his status or prognosis...end up feeling like crawling in a cave.

ON a more exciting note.. Sam has made some PT and OT progress. He tried new moves with reaching across midline for toys and reaching out of his arms reach to maneuver his body to get where he could reach something he desperately ached to touch. He is showing good endurance during his therapy sessions, but then is still tanked most of the rest of his day. The biggest step forward though was this morning, shortly before we heard the nursing news as the therapist placed him in a doggie type postion on knees and hands. Usually he would kinda be a spaghetti noodle and not work to tighten up and hold himself. WELL NOT TODAY! He actually held up his body carriage himself and looked around too! This from a boy who hardly can pull upper body off the mat during tummy time! I was amazed! It is crazy to me that he might just figure out how to crawl before he figures out how to get into crawling or sitting postion. I, of course, grabbed the trusty camera and here is the exhilarating moment of accomplishment.

What you can't see is his therapist and I squealing in delight at this show of strength and perseverance. He was working soo hard and putting every bit of himself into this, which is also hard to capture in a quick photo snap. It is these moments that I wish I could sign, seal and deliver to every nay - sayer I have met along the way who discouraged the hope for our little fighter's future. Love to see him brave new territory.

Life sure is a CIRCUS! (Ness - thinking of you and our circus year!)

As for the girls, this last week was spring break and they had some great times, even amidst Sam's recovery period. We had a few very memorable playdates and the inaugural swim, kicking off the warm spring and summer seasons. Sofia returned to school and had a circus program intended for dad's to enjoy. She was a pretty cute little acrobat in my most biased opinion! I am going through a can't-get-enough-of-her-curls phase! I would easily trade those in though for less drama and driving me mad moments! Ha Ha. Thank you Lord for forgiving my less than graceful moments hollering at her over unbuckling her seat belt 50 times on the way to the grocery store.

As a last call, I am finishing up the collection of orders for T shirts to be worn to support Kaps 4 Kids on April 27th raising funds to "share a night" for a family at our local Ronald McDonald House. This is the home for families of seriously ill kids in the hospital. It was our home away from home during some hard times at 5 different locations. The house is fully independent and not run or financed by McDonalds, contrary to popular belief, so these funds make it possible to reach and touch many families like ours. The shirts or hat or visors are $12 and if you get a hat and shirt it is only $20. That one shirt means a shower to another mom whose baby is in a NICU on life support or a place to pray for a dad whose child is undergoing chemo or surgery. For us.. it was a place to reconnect and share a meal as a family on weekends when my girls could come. Call me if you want to help support this worthy cause. Local businesses support it by letting their employees wear the shirts as a casual day on the 27th of April and there will be a pre-party event at Scullys on the Bayou in Ft Walton Beach on the 20th to celebrate your support. I do need to drop off the list by 2 tomorrow (april 1) and funds by the 7th. You can email me at afewnegron@cox.net if interested. Thank you for all those supporting this event.

God Bless and I can't say how thankful we are for the prayers that have paved the way to good things in our wake this week.