While we are sharing..

So..I got stomping mad tonight at Sam's ridiculus feeding pump. Then I found myself laughing over it and started thinking about something that happened yesterday when I was over at a friend of mine's consignment sale. I had taken Sam with me which is a rarity in of itself because I am a ninny about him being in certain public settings for fear of illness etc. Anyways, this mother approached my stroller and said, "Is your son tube fed and does he use neonate formula?" At first I had to look down at Sam because I thought his wires/tubes were more covered up but it turns out they were peeking around the edge of the stroller. As I said yes and listened to her kindly offer extra medical equipment bags or formula that was of no use to her but would not fit our pump, I went into a daze of sorts thinking 'Wow.. I am really here.'

You see, I had this de ja' voo moment back at Shands when Sammy was just a month old and about to have his Gtube/ fundoplication surgery. It was during the night before the surgery and I was nervous..sick nervous. They were about to permanently change my child's anatomy for a reflux problem they had no evidence of but wanted to be sure to prevent. After the surgery he would eat my pumped breast milk entirely through the tube in his stomach and quite honestly I could not imagine anything more horrible. I was so naive then. But that night I had this moment where I imagined myself chatting up Gtube supplies and such like it was everyday business with another Gtube mom. It was particularly odd to envision, since I did not know a single "gtube mom" at the time. Anyways.. I was mad at the pump tonight for not running right and all I could do was cry and laugh that there was once a time when I could never fully grasp what this stage of our life would look like. All this prompted me to pull open my old caring bridge website and read through some of those early posts.. I guess I was trying to reconnect with that part of me..whoever she was.

As I read my emotional and completely overwhelmed posts shared during what was the most challenging days of my life, I realized I was never more frank and honest with myself and all our friends and family than I was back then. I guess I shared it all without hesitation or worry about judgement. This is interesting to me now because I can't tell you how many posts are sitting in my "drafts-that-will-never-be-published file". Those are the raw ones.. the ones that needed to be typed but maybe the world could live without reading. Not that I think anyone feels like reading my ramblings lately. With all of that in mind I am going to share something personal that really hit me in the last few weeks and left me a bit vulnerable.

Up until about two weeks ago I felt like I had done okay with balancing most things. I felt the girls have channeled through some really rocky experiences but were overall doing well. I felt pride about the love and respect in my marriage. I felt joy and optimism about Sam's recent progress of late. I was even settling into this news of expecting an unexpected 4th child. I was trying to not feel like a bomb was ticking under me. Did we somehow manage to escape falling doom and find a new somewhat manageable normal around here? That was before I entered a new world of worry, guilt and confusion.

An in-class math assignment of Bella's was returned and it showed a 4 out of 8 grade at the top. This was really strange since she knew the math and had no trouble doing the homework. NOW.. I won't go into my background but let's just say there were no acceptable grades in my house except straight As. Period. So on this 1st chapter of 1st grade math assignment, she had correctly completed all the math but did not do certain secondary requested tasks such as showing her work with an illustration or circling the matching answers in a row of 5 problems. I was concerned and so I emailed the teacher. This was actually the tipping point of several other concerns..first off her reading materials seemed entirely too easy as she was bored reading it to me and never even had to work at it. Her comprehension of it was great, but I did not want the ease of it to dampen her excitement about reading in general. There had also been this other child's graded homework packet sent home to us with no name on it that was clearly not ours or even similar to what we had sent in. So I approached the teacher and she said all was going fine.. that the one assignment was no biggie and the homework mix up was just a swap up mistake before leaving school and not what was actually collected and graded. Based on this I decided all was going ok. Then I had a chance to go have lunch with Bella at school. While there, the teacher told me Bella had just finished getting 100% on her first math pretest and was doing great. I knew she was doing well in spelling as she had been acing the tests including bonus questions..like amphibian and reptile (Let me tell you- first grade is quite different now-a-days!).

We really did not have much homework back or individual feedback coming home so of course it came as a complete shock to me when 4 days later I received her progress report showing several areas that were hardly where I would have expected them. I won't go into detail but 2 areas (lang arts and math) were less than satisfactory and several others were just at satisfactory. Pure shock hit me like a rock. This from my child who wrote paragraphs willingly in her journal at home and was jumping into chapter books...? I started worrying about whether we did not commit enough one on one time with her during the past year. Was I too tired to notice some sign she might be in left field somewhere? SO, after numerous emails with the teacher and sleepless nights worrying over whether amidst all that was going on with Sam, I somehow had failed to prepare my oldest daughter for first grade, I finally had a chance to sit down with her teacher in conference. It turns out she knows the math content just fine but somehow rushed on the actual test and like that one assignment which had wrinkled me a bit before, she must sometimes lose her focus about following instructions to the T and moved on too fast to the next one, in the end making stupid mistakes that don't best reflect her knowledge of the material. With so few grades yet, the score looked worse than it should. Pretty much the other mediocre grades reflected her not really showing much effort when she knew it like the back of her hand. In my opinion that may actually be because it is unclear what is expected of these kids from the start and if they are bored or not focusing seriously, it shows.

So why am I venting this all here? Because amidst all the life and death stuff we have been faced with over Sam's health since birth, I never saw this coming and it rocked my world. How will I ever make it through to highschool graduation if I am a mess over whether my child crosses her Ts perfectly straight or forgets to elaborate her answers more fully and in better handwriting on her reading test? I asked for handwriting samples of S+ work and let me tell you.. practically a microsoft word sample. I do want high standards for her and this is why we chose the structured charter school she attends, but it does seem that the jump from everything is perfect in Kindergarten to boy.. you could seriously screw it all up in first grade is amazing to me. I did have to laugh that on the math test one question that she missed was asking her to write out a numeric sentence for addends of 5 and 3 and to show the sum. Easy enough. My child then goes on to write out, "Five plus three eqols ate" instead of showing numerically 5+3=8 (the correct answer). I just had to laugh again to myself when she explained to me, "But Mom, it asked me for a sentence!". DUH!

All of this made me pull out my old journal notebooks from Fairfax County schools in Virginia..The year was 1985 (first grade).. The Subject: The love of my mother.. on each and every page with pictures. :) Comparing the writing samples in that book with how my daughter writes now is like night and day... and I was considered "gifted." We expect soooo much more now from these kiddos. You sure are not in Kansas anymore, Dorothy! I hope in the process of trying to raise the bar, we don't end up dashing out the parts of growing up that are special and build character.
Here was my writing sample from the first month of first grade..

and now here is Bella's...

So... the moral and resolution to my long winded story is that I need to chill out and breathe a bit. If anything this stuff with her brother has made her stronger and I doubt it caused any lasting issues. We have gotten through worse and this will hardly be the last time I am taken by surprise. We will be explaining to her how she needs to better slow down and apply her knowledge beyond what she does on homework etc.. and I will no longer just listen to a teacher saying all is going great.. right before I am surprised by this type of news. She has a great teacher and I hope she now understands that we actually do want to be informed of how our child is doing. I think they must have some parents who just don't care.

I guess I am learning how all this works. I know what a smart girl she is and I don't want to apply all the pressures I grew up with of succeeding for someone else.. but instead I hope to build her up so she will want to succeed for herself. I also need to give her a break.. as we just discovered that she did not even understand that class work had grades, which actually matter and could effect her future. She thought making Straight As meant working very hard to write the perfect letter A. Bless her sweet first grade heart. SO there it is.. sharing some raw parts of my parenting journey.

Awareness

Last week was Mitochondrial Disease Awareness week and although I wanted people to know about this too common, greatly unknown and often fatal disease, all I could really think about was how much I just want us all to wake up and give thanks for our blessings. Awareness to me really means being informed so we better understand, support and show compassion for something outside our usual understanding. The ultimate awareness for me seems to surround figuring out how God would have me best live this life. I am still seeking knowledge on this and in some ways fully reaching this type of awareness may take the rest of my life. For now, I work at it each time I count the blessings in my life. I look at my children and even when they drive me nuts or make me worry or require every bit of my energy.. they are indescribable blessings.

Tonight I found out my sister, and their family of 6, were in a pretty big car crash halfway around the world today in Belgium after a drunk driver rammed into their car. It could have been tragic, but by God's grace, they are doing ok after a pretty serious scare. My brother in law, who had sustained a previous back injury during a past deployment, is apparently experiencing problems with it now since the wreck. I will be praying for relief and healing for them all. It is so hard to be so far away.

There are some prayers for local families weighing heavy on my heart right now. Our community lost another brave soldier and another has lost his legs and one arm. It is such a tragedy for these families. Such sacrifices for all of us... I can't even find the words. Two personal friends lost parents this week. I hope God embraces them and reminds them of the beauty they shared in their lives.

I have a praise too for the addition of my cousin's first baby.. what joy it is to see a family born! I know she will make a wonderful mother.

As for our family over the last few weeks, it has been a busy time, but overall things are going okay. Knock on wood. Samuel is back on antibiotics within 2 weeks of the last round for a staph boil that appeared on his back but is doing okay. It was concerning since it showed up all of a sudden due to the wires of his heart moniter becoming exposed and cutting into his back. The stressful part for me was trying to understand how it went unnoticed for several days. It looked like something out of nursing home abuse weekly. I had not seen him fully nude myself for almost 4 days since the nurses do most of his changes and baths except on the weekends when he is fully in my care again. On this one particular Thursday the nurse was prepping him for a bath and called me in to show me this really red and open sore that was white at the center and very painful to the touch. The redness extended across half his back and I was left feeling so upset that I did not know it was there for probably several days. Sam does not communicate like other babies and has endured such pain, that he is not quick to let you know somethings.

Meanwhile the exposed wires had blood on them and were probably not even of any real use at monitering his vitals in their state. I will no longer take for granted that trained professionals are checking him over, dressing him etc.. Luckily it seems under control since starting oral and topical antibiotics, but it could have been a much worse outcome. It is always fresh in my mind that he does not seem to heal easily and his symptoms can culminate in an overall serious crash after the slightest taxing insult to his system.

I have some prayers on my heart right now about other issues I am working through but they are too complicated to flesh out here. I just need to take some time to listen to what God would have me do and stop questioning myself so much. We have alot coming up between appointments in Atlanta and a consultation with all his therapists to assess where he is at right now. I feel pretty good about that since he is cruising now around our coffee table and is standing up against whatever will hold his weight. He wants to walk badly. He does sometimes still seem very weak in the trunk and sometimes I have difficulty getting him to hold his own weight in a standing position when I hold his arms. For now we are rooting on every new accomplishment. The last and best peice of news is that Samuel is officially on the growth chart around the 5th percentile for weight. He is not even approaching it on height but, hey my roly poly is at least tipping the scales at 22 lbs and growing!

The girls are busy with school and soccer. They are loving Saturday morning games and I think Bella actually "gets" it this year. She is not off pulling daisies when the ball passes her way. Sofie was born to get after that ball as she is more the natural athelete. I love watching their unique skillsets and personalities develop. God is so good to make such a diverse world. I have another OB appt this coming week. I have not posted much on the last one as I really don't know that there was much to post. They did another very thorough ultrasound and they said the kidneys were slightly dilated but not to worry since sometimes they see that with boys.. They will watch it at this next appt again since they also did not get a good look at the heart and will need a retry. In the meantime, they had me do a 24 hr urine test and bloodwork to get a baseline for the preeclampsia concerns from my prior history. I picked up a copy of the labs since the Dr had not called and I am keeping my records due to the history from before. You would think I was requesting records of natl security for how strange the records girl acted at my request. Labs did show proteins in the urine and some off bloodwork here and there, but nothing I would think much of in relation to what they were before Sam's birth. I think they would call me if there were any concern..I just don't want to go through what I did before. I think I would fall apart. Well, my Gator team just got smashed and I am feeling rather tired and done for the day.

What a shift this week!

So I was actually slow to post the last blog for over a week and now I am finally catching up with this week's updates..

The first week of school went really well and even on into the 2nd, things were chugging along pretty smoothly. We are having to remind little miss Bella about all those important 'chatty cathy' rules..(wonder where she gets those traits??).. no more talking in class, stay in her seat, raise her hand etc.. but she is loving class and her new teacher. She had her first spelling test this week and I am so happy to report that she aced it.. even the bonus words! I knew she could spell the words just fine, but she has a tendancy to get overly nervous and not show what she knows under pressure.

Sofie is really loving her VPK 4 class and has even stayed late for "lunch bunch" several times. I am always hesitant to let her do this in the warmer months as it means an extra hour or two out on the playground after lunch in the heat, but she loves to play hard and it does burn off some of her crazy energy.. (irony is I would do anything to bottle her endless energy and pass it over to Mr. Sam-ster) an added perk for when I just need the girls to take some down time after school. Sofie's big focus this week has been on wanting to name the baby. She comes up with some hilarious offers.. I think my favorite was cleaves happlee.

So for now.. "things are going great and they're only getting better, they're doing all right, they're getting good grades, the futures so bright.. I gotta wear shades!"

Sam is busy crawling, pulling to a stand at furniture and has even tried to take a few steps of cruising once or twice. There is some concern about how he is pulling to a stand.

He rolls over the tops of his feet which the PT says is indicative of hyperflexion of the ankle so we are not sure if he may end up requiring special shoes or ankle support. He is just weaker and this makes it easy to over rotate. He also splays his hips out a bit. I am just so happy to see him mobile. He does grow tired quite easily, but his endurance seems far better than it used to be. His speech is coming along slower but he is turning "da da da" into "daddy" and says "uh oh" and "yah" now as well as odd form of "mama". He tried to say "bye bye" the other day but it came out more of a "Babbeebe". He even makes a dog sound when he sees a picture of a puppy. He is using some sign language from time to time and seems to understand everything we say to him.

One of the biggest improvements has come with taking in small amounts of food. He is still not drinking fluid as it seems to hit him a little too fast but one day out of the blue he allowed us to feed him oatmeal by spoon... sooo exciting and things have been moving along faster ever since. We had gotten grits in earlier in the summer but that was short lived as he would sometimes choke and grew nervous and aversive again. We bounced from days he wanted to eat but would choke to days we wanted nothing in his mouth. He is now taking in bits of bread, whole packets of oatmeal, bits of some fruits and vegies. He does still get choked every now and again but does not seem to let that stop him from taking the next bite.

Even with continuous GJ feeds, he stills shows major interest in the foods we are eating and so now the new question is how to try to shift to tolerating more oral feedings. He does get distended and show belly pain from time to time, however, nothing like what happens when he is ill. He eats small amounts and then acts pretty saited and tired. I think eating actually takes alot of energy for him, so I also want to be careful we balance all the energy going out to the many new areas of development. I don't want anything to take a back seat. Although we don't know if this new wellness and development is a turning point that will continue with no turning back or if the mito experts are right when they say he will have many peaks and valleys and that we just need to enjoy these periods and make the most strides during these phases.. I just don't know.

Listing all those good things, I need to do a little end of the week venting since my week took a turn, starting with some craziness Thursday night. Sam took a downturn in the night with his breathing and we knew something was up so I made some calls Friday morning to get him into the Dr. While waiting to hear back, I had to take Sofie for her first dental appt. It turned out to be quite an adventurous morning as we first got lost finding the place up in the north part of our county, then we finally get there and she is so nervous that she throws up all over the waiting room floor.. yes - it wasn't pretty! Then I get a call that the Dr can get Sam squeezed in for a 10 am appt but I am too far away to drive home, pick him and the nurse up and make it. Thankfully, my mother in law was able to help with this but I hated calling her into it at the last minute. Then I get called back to meet with the dentist and it seems Miss Sofie, who fights brushing tooth and nail, has 5, (Let me repeat) 5 cavities!! I think I have had 1 my whole life! I felt like mother of the year! He must think I let her eat candy all day. On top of that, there is a flap of skin that may be an issue later causing a gap in her front teeth if not surgically removed. They said she has really soft teeth. Great!

Then we narrowly make it to Sam's appt, only to find that Sam looks better and is breathing farely okay. This is good but I know that Sam does this.. he will look fine and dandy one minute and then out of the blue sats are in the 80s and he is retracting and in pain again. The nurse is telling the Dr. how bad it was but I know he is thinking we are wimps. He then did find infected ears and upper respiratory infection, so Sam is back on antibiotics. We are pushing fluids and rest and hoping this little illness won't put him over the edge. He fluctuates with his symptoms but overall is doing a little better so I am hoping we caught things early this time. The noisy, wet breathing keeps me on edge but I think most of it is up high in the trachea area where it is so narrow.

After the crazy morning, I return home to find that the scheduled installation of the silly satellite TV thing is a mess and the sales girl has screwed everything up. We were trying to switch from the overpriced cable to the cheaper satelite but in the end will probably end up paying more.. We only ever had basic cable but for less money we were hoping to actually have more channels since we spend so much of our weekends at home. Anyways I was given the run-around, had to duke it out on the phone and 4 hours later it was finally all rescheduled for next week but by then I was at the end of my rope. Meanwhile, I was worrying about the major onslaught of rain on the way with the oncoming tropical storm Lee. FUN! It looks like it is going to pass over New Orleans west of us. I will be praying for those families. I am not too concerned about the storm itself as it is mainly a glorified rain storm, but of course it is happening right before our contractor planned to come out and repair a few leak issues.. You can't hold back the rain! He was supposed to come put up a tarp for us but did not show.. SO this is how I found myself shouting to noone in particular about crazy nonsense and how I hate TV and why do we need it anyways since we are way too crazy with the rest of life to fit in the greatly coveted college football that Jason is so sad to miss this weekend. Going without any TV for a week is hardly on my list of stresses but dealing with it did put me over the edge. Jason probably thought I was losing my grasp! A day of cleaning up vomit in public, sick babies, oncoming storms, installation people and dealing with endless automated phone junk along with driving all over carnation back and forth trips to and from bus stops, pharmacies and dr. appts will do that to a person. I was done! But on a good note... I vented and prayed about it all and found a few quiet moments to collect the fragments of the day and I have set it all behind me.

Mostly, I am a little concerned about power issues for the weekend since we don't have a generator and Sam can't handle heat and has medical equipment and.. is in the middle of an illness. His nurse had to use oxygen last night and my thoughts began to gravitate to what we would do if there were a long period without power. We only keep 4 tanks of oxygen on hand since we have an O2 concentrator that plugs into the wall and converts room air. Too late to think about that today, but I will need a better emergency plan for the next storm. SO my week summed up: I started out with the tune "gotta wear shades.." feeling all happy about a farely smooth start to the school year, but ended up: desperately needing a good umbrella to shield us from the mess falling all around. I am sure next week's forecast will be calmer and brighter..
Amanda.

Giant White Board and Endless Possibilities..

I think all mothers everywhere can agree that we get to celebrate a 2nd New Years Day each year. It usually arrives in August and is decorated with stacks of wide ruled paper, bright new boxes of washable Crayola crayons, new white socks, pencil eraser caps and all the fun of starting a new school year.

I was tickled pink to discover that this year's official school supply list was rather simple in comparison with the two full page list ($150) of Kindergarten items for Bella's school last year. Won't even tell you how much time was invested in tracking down every item last year, but this year I actually whipped through Wally World in under 30 minutes. One item in major demand this year seems to be dry erase markers.. 16 or so were required on her list.. which hovered on my brain as we fought parking lot traffic trying to head out with our goodies. What a clean and pretty thought to imagine my life as one giant white board with clusters of colorful drawings to depict the sunny and stormy phases of my life. What would life be like if we could just wipe away the unwanted smudges or seemingly impossible math problems we had somehow struggled through? What if when we didn't like the way things were going and we could just wipe the board off and start over? Would God want me to erase any of it or should I be writing it all with Bella's favorite writing tool.. the ultra permanent sharpie marker?

I look at the last 6 years since having our children and I think how much of it I want to lock up in a vault and preserve forever. How every little handprint sent home from preschool became most treasured belongings. Every first milestone brought such joy and excitement. Every smile an imprint on my heart. But the last year and a half have been harder and the pretty and wonderful parts have often been crowded around splotches of dark stuff. There are ugly scars there that I would like to wipe away sometimes. But then I think about how those harder parts, the messier areas of my white board, are actually what has made the sunnier parts and the big new developments of life all the richer. I felt this all too well as I walked Bella into her new First Grade classroom on the first day of school this week.

I was ever so thankful for God's help juggling everyone into a working, well oiled machine that morning. The girls were dressed by 6:15, homemade nutritious breakfast waiting to fill them with energy for the busy, full day that awaited them. The nurse also had a little one starting school so we arranged ahead that she would come a bit late after getting him off to school. This meant Jason would hang behind with Sam while I packed up Bella and Sofia into our van and off to their various schools. Bella was a bit nervous as all the girls she knew well from Kindergarten were in another class. I know she will love this new teacher and make friends in no time, but it hurt just the same to see her furrowed brow. But in true Bella style, her bubbly personality came through and the nervousness subsided when she saw the crowds of other kids entering school. By the time we made it down to her new class, she was chatting with the teachers in the hall and pointing out all the exciting things that she could not wait to do between those walls. She did not even turn to wave goodbye as she sailed into her new class, only pausing to give the new teacher a high five. I can't believe how grown up she is now! I stood back and tried to appreciate the moment. My baby does not need me as much as she once did.

I spotted many mothers crying as they left the building and I thought how I was there last year, but somehow have graduated to a different mental place. Now, I look at this day as a fresh start for everyone, a return to some routine for our household coupled with the endless possibilities and excitement of all that lies ahead. I think I have craved the quiet that happens when they leave in the morning. With the nursing in place, I hope to now have time and energy to meet my own goals for supporting Jason's business and still managing the "mom" and "wife" stuff.

Sofia was next to start class that morning and I did feel a bit more sentimental about her first day. This is the first time she will be gone a full 5 days a week. She has a wonderful VPK 4 teacher who was Isabella's teacher the year Sam was born. She lives right down the street and is the perfect mixture of educator and nurturer. Sofie's two closest friends share her class as well so I know the girls will have a great year!

As I drove on home, I reflected on all the summer memories we made this year. We went to the beach, swam in our pool, had fun playdates with friends.. even discovered we were expecting a new life.

Amidst all that, we found time to turn our Atlanta trip for Sam's medical appointments into a family vacation. And although there were some bouts of medical challenges for Sammy, he made enormous progress this summer! Overall, it was a nice summer for everyone. Those harder experiences are not going to mar my white board of summer memories. We came through okay and my guess is that God would not have us forget these hard times as they are what reminds us of how blessed we really are. I do selfishly want to erase anything difficult from life... but erasing it might mean we are less thankful, less hopeful and less willing or able to handle the next scribble scrabble that awaits us in this crazy life. For now I am justing working to move forward and enjoy every day.

In my prayers right now are a family that has just found out the dad has cancer and a friend who just suffered a heart attack and stint surgery.
I am also praising the marriage of a friend from highschool, who found love with someone I know will make him very happy. At the wedding, we had the privledge of sitting with several other highschool friends and it had been years since we had seen one of the couples. Since that time they have had 2 precious sons and endured some major, lifechanging challenges themselves. The wife had a kidney transplant this year and is in recovery with hopes that there are no complications or setbacks. We will have her and their whole family in our prayers with the onset of the cold and flu season, knowing the risks it poses to her health. God certainly places people in our path that can teach us and show us great faith and strength. I am thankful for all the friends God has brought into our path.

Balanced

After returning home from Atlanta, I began to prepare for the upcoming first prenatal apppintment with our new Obgyn. This pregnancy has made me face many not so easily buried and painful memories of Sam's complicated pregnancy and delivery and I am having to let go of those fears and realize that this is all in God's hands. All I can do is what I have always done.. give this unborn baby the best environment and prayer and love that I have. I must also rest my trust with medical professionals, which is a tough subject since I struggle with how things were handled the last time.

I had a 1:30 appt and after a long, nervous wait, I went into the ultrasound room at 3:15. Jason surprised me by showing up, but had to leave a few minutes prior to the ultrasound as it was just too long a wait. I went in expecting to see a little 11 week old fetus with arms and legs.. a tiny little thing..the usual early ultrasound picture. Instead..

..this fully formed, larger than 11 weeks baby appeared and soon after the tech explained that I was most certainly closer to 16 weeks by her estimation. It was moments after this that I realized the sex of our baby.. there was little doubt and the tech confirmed..we are having a baby boy! This shot is from below the bottom and makes the sex pretty clear..

SO.. our family will be a better balance with 3 girls and 3 boys total (Jason and I included). Our family will be complete and balanced. The baby is looking good and we now understand why I was showing so much.. so early! The due date is January 27th and I will most likely have to have him by scheduled C section, as that will be the safe way to go following a recent C section. They won't perform VBACs here even if we wanted to risk it.

The appt went well, but was long as of course our Dr. had to get filled in on alot of Sammy's history and I had many questions myself. I feel really good about this doctor and I will not hesitate to see the high risk if anything seems concerning. For now, I am just praying for a healthy, uneventful pregnancy.

Sam is doing well this week, although doing alot of sleeping. He met his new physical therapist and will begin those sessions soon. Although I was sad to lose our longtime PT Miss P, I think Miss Q will be just fine. She was quite surprised by all he is doing now and is seemingly in my corner on the issue of whether we need a stander piece of equipment to get him vertical.. not so necessary now as he is showing off such wonderful new abilities! She did say we may need the aid of a reverse walker or similar equipment to make that next step towards walking. I am just so overwhelmed with joy at his new crawling, sitting and pulling to a stand skills! She said his transitions are phenomenal and although there are general weakness issues, we can build forward from here.

The only other new curious symptom is an eyelid swelling issue. Sam's eyes have always been a sign of something ominous! He gets pink eye with every ear infection and his eyes can be very telling about other issues, glassy and rimmed red when he is reaching his limit of physical activity etc. I can tell with one glance if he is reaching an exhaustion crash. The new symptom appeared Wednesday morning when his right eyelid plumped up big and swollen. It seemed like it was full of fluid and it was warm to the touch. I did not jump to take him in as the white area in the eye looked ok and I hated to head back when we were just there on tuesday. He did not want us to touch it and was quite defensive. We watched it all day and it seemed a little better by nightfall but had a slight worsening the next morning. That night it was almost entirely gone and so I figured we were done with the issue. The night nurse probably thought I was loony telling him to watch for it, since it was no longer there. However, the next morning it appeared in the left eye and this time his eye was almost swollen entirely shut. I was now more concerned again. But in Sam's usual odd fashion, the eye seems much improved tonight... so we will keep an "eye" on it for another day or so. Hopefully it is just an allergy and not some weird virus or cellulitus. Fun stuff. For now, I need a little shut eye myself..

Tough Days

I have just returned home with Sammy from an emergency trip to Atlanta and I am still struggling with how to write about the emotions of the last few days. I guess it all comes down to fear and feeling helpless. I need to remember this scripture which I have heard and read many times before..

Do not fear, for I am with you; Do not be dismayed, for I am your God.
I will strengthen you and help you; I will uphold you with my righteous right hand.
Isaiah 41:10

First I should say I am always fearing any type of low heart rate/ bradycardia episode, but there has always been quite a spectrum of severity and duration of his symptoms during an event. There were pretty scary bad ones in the hospital following surgeries or during illness etc when whole teams have had to intervene and then quite a few in our home where Sam required stimulation and/or oxygen to recover. Others were completely self correcting and just the knowledge that his heart rate took such a plummet was scary. Color changes and behavioral symptoms are easy to spot when he is having a bigger one. All of them are scary for me but up until Wednesday, there had only been one or two other episodes where he actually passed out completely and only one was followed by no breathing for an unacceptably long duration in our home. That was back at the age of 2 months when I gave 2 rescue breaths myself and was on the verge of compressions when he roused.

I was not feeling well Wednesday morning, so my mom was over helping with the girls while I tried to ease into doing bills, paperwork sorting etc. I needed to head over to the pharmacy and the bank, so I popped my head in on the nurse to let her know where I was going. This nurse was a fill-in for our normal MWF nurse and it was only her 2nd day. I gather this made the turn of events even more difficult. As she turned to place Sam in his crib, I watched as his tubes were left to dangle between her body and the cribside. Then as she lowered his body, the GJ tube which leads down into the intestines, became caught and pulled out. The balloon which holds the GJ in the stomach had popped through. This has happened before and although frustrating, it is not the end of the world. The most frustrating aspect is that a GJ can only be replaced in interventional radiology under flouroscopy. For us, this can mean a trip back to Atlanta when it has entirely come out since our local hospitals do not have the tools for a mickey GJ placement. When only partially pulled, we can probably just head to a local ER to check proper placement. In this case, only the balloon and beginning of the GJ line had popped through.. at least initially.

I asked the nurse to please hold the tube against the stoma to prevent it from coming out any further. She was kinda new to this and floundering a bit so I was explaining what would need to happen next. She was holding it to him, when I turned back to the crib and found Sam's color was draining out and he was nonresponsive. He was turning grey, his eyes were glassy and his mouth, although open, was not moving air. In moments, his eyes rolled back and he fell unconscious. He was not breathing and his color was now completely grey everywhere. Words can not describe what he looked like at that moment. I thought he was gone forever. I went into pure "Go" mode and the nurse and I began scrambling for oxygen. She was quite upset to discover there was no ambu bag near the oxygen tank or the compressor. I began to panic too but as she was already doing enough of that for both of us, I moved my focus to him in the crib and tried to stimulate or bring him up somehow while she searched. He was a limp noodle..lifeless. I don't know how long this whole situation lasted but I imagine it was only a couple minutes before I realized I had seen the ambu bag below the crib the day before when our diaper supply was low. That is usually the only thing stored under there and so I remember thinking.."hmm why is that under here?" but yet for some stupid reason, I did not pull it out. Since then, the other nurses have told me that our night nurse had "cleaned" it to that storage spot. When I realized where it was I went to get the drawer open, quickly realizing the side rail had to be up to get it out... it is amazing what bumbling idiots you become in these moments. I remember myself shouting and fussing with this before I finally got to it and we started some blow by while rubbing his chest. At this point he started reviving and color came back. By the time we got a pulsox on him, he was doing much better. It was all such a nightmare.

During the course of events I had shouted "CPR.. Maybe CPR" but could not form thought about whether that should be our next move. The nurse thought she had felt a light pulse but honestly we did not know what it was or how slow it needed to be to warrant compressions. I have since learned that even if his heart rate was below 60 and he was this symptomatic, compressions might be needed to help bring up his heart rate enough to circulate the blood properly. I think I was first and foremost just thinking about oxygen.. he was just so grey.

After all this happened, it became evident that the entire tube had migrated out of his body and so I inserted an extra G tube I keep on hand so that his stoma would not close up. These can be inserted rather easily with the use of a kit and some saline in a syringe. After all the excitement, Sam seemed stunned but happy to be in my arms. I asked the nurse to hold him and read to him so I could call the Drs. Of course it was lunch hour and I had some trouble reaching people. His GI Dr. wanted us to board an angel flight and come to Atlanta's scottish rite for replacement and monitering. He did not want fluids going in through the stomach for fear that his episode was evidence of some kind of internal issue caused when the tube was pulled out. This made things more complicated since Sam can not go without proper fluids for any stretch of time. He wanted us to have an IV placed for the trip but of course we could not get that arranged quickly enough by our pediatrician locally.

So we made flight arrangements out of Destin through the amazing people at Angel Flight in Atlanta. They put it together in an hour and a half. They are true Heroes and I will forever be in their debt for the missions that have made it possible for Samuel to reach the best medical care available. I am quite humbled by the kindness of strangers. They really are angels sent down to touch the lives of innocent children. Our pilot said this was his first chance to fly someone since joining the organization over a year ago. He was so happy to be able to help. I could tell Sam was working in his life by giving him the opportunity to make a difference. God works in such mysterious ways. Even horrible circumstances have a purpose it seems. I do believe God would not let our son experience this pain without also allowing it to effect others in a positive way and also to help us not lose hope about the humanity of the world we live in. Sam makes me want to be a better person every single day. I am so thankful that others feel this power when they reach out to kids like him too.

We had some further trouble on the flight at higher elevations, both on the way and then again on the way back. It seems elevation poses yet another difficulty for Samuel. His sats dropped into the 60s and 70s and he turned a bit dusky but once our elevation was adjusted down, he quickly improved into the 90s again. I will have to keep this in mind for any future flights.

Our pilot personally drove us to Scottish Rite and we entered through the ER, where they were expecting us. Quickly, we realized Sammy was declining without much fluid intake. By hour 4, he was running fever, higher heart rates and respirations. He was hypertensive as well. With much effort, they finally got blood for labs and 4 sticks later, an IV in place. He had that in for about an hour before the whole arm puffed out like the michelin baby and he writhed in pain. This meant more and more sticks and two more bad IVs. We were about to be admitted to a room around midnight when the Dr came in and said an ambulance was ordered to come and move Sam over to the sister children's hospital at CHOA Egleston. We have stayed there before when Sam was once evaluated for the pacemaker. They have a wonderful heart center and are better prepared for cardiac issues. I was confused about the transfer but I guess they wanted to watch him for any other similar episodes. The ambulance ride was nothing short of frightening since a storm had popped up and I was in the front with the driver and Sam was in the back with the EMTs. The ambulance was flying down the interstate and I was feeling the effects of nothing in my prego tummy since lunch.

At Egleston, Sam arrived in a bad state of dehydration. They could not get any IVs in place and he was on the brink of a total crash. Finally they started a slow run of fluids through the G tube and he started perking up slowly. It was a slow day on Thursday and they held off on doing the GJ placement so he could be monitered by telemetry. He had an EKG and he bounced back and forth between the cardio service and general peds.

Those couple days back in the hospital were a reminder of why I HATE staying in the hospital for any length of time. The hard sleeper couch and constant people in and out through the night, coupled with mixing hospital food with morning sickness.. one change of clothes and no soft jams are irritating but really I just wanted to see Sammy perk back up and feel better so he could get back home to his sisters. Since getting home, he has slept alot and I have caught up on some rest as well although I can't shake the images of what took place the other day. I have an Obgyn appt on Monday and alot on my mind in that arena.

I am praying for a few others in the hospital right now. I pray for strength mainly, for them and their families. I know what it is like to feel powerless and experience a kind of helpless fear that only comes when it really is all in God's hands. I know I should not fear and God asks us to calmly hand our worries over to him.. but this apparently is something I struggle with, as it seems others do as well. I am thanking God for the help Sam had from so many good Drs and nurturing nurses this week. I seek guidance in my prayers about whether we need to go back to considering the pacemaker even with the risks of open heart surgery. I think if this level of event happens again at home, we will be forced to reconsider. For now, I am just praying his little autonomic nervous system will stay stable, that his health be good and that he will grow stronger with each new day.

Cuatro..

We have some news. It seems I am "with child.".. #4. Although, honestly, I can hardly recall a time I have been "without child" in the last 6 years! After the shock and disbelief of this news, I have found myself repeating.. that, although not something we planned, it is a blessing. Every little life is a blessing.

We never intended to grow our family beyond the size of five. 'Family of Five' had such a nice ring to it. You can actually all fit in one sedan, right? It is sooo much easier to request a table in a restaurant..and you can even make a booth work with a chair on the end. As Jason and I were each raised between two siblings, three felt somehow the right fit for us. Then to experience the journey of this last year and a half.. well, let's just say I was feeling the limits of my mothering abilities and was further convinced of the beauty in the number 3. I would watch my sister rangle her 4 kids (all under the age of 7) and think to myself.."How is she not losing her mind?" Now here I am with #4 due before Bella even makes it to age 7. Yikes!

But as God has often taken the wheel during the peaks and valleys of my life, I know he has always brought me through and in the end I have always grown to fill the role he intended, even if it sometimes included a little kicking and screaming along the way! So.. when I started experiencing an unusual level of exhaustion, I went through a period of panic weighing how we could possibly be expecting.. so unexpectantly. At first, I did not want to believe the results on that pee stick, yet it was hard to deny the dark plus signs appearing on multiple sticks. It seems I am about 10-11 weeks along and as I am somehow showing in an absurdly obvious fashion, I feel I should start sharing the news.

I won't actually be seeing the Dr for another week as it has taken me some time to decide about who to use and how to best handle the prenatal care of this pregnancy. After an incredibly complicated end to the last pregnancy, we want to be sure that this child's care and my own are in the best hands and with a plan that will ensure the most healthy outcomes. For now, I am trying to get past what has been a pretty rough 1st trimester with all the exhaustion and morning sickness or all-day sickness, that is. I am sure some people think I dropped off the face of the earth.. since there have been days I could hardly leave the house.

The last couple weeks have included some special days too. Friends of ours were in town for a few days while staying with our other good friends. Our families had some fun together swimming and catching up. BBQs and golf were big hits as well as an interesting trip down to the beach on a most soggy, rainy day. I have tons of pics to download but here a few highlights..

After that busy week, we made a trip to Atlanta as a family for Samuel's follow up with various specialists. While I took him to the appointments, Jason took the girls over to the Atlanta Zoo. It poured that day and the girls were soaked through and through. They hardly noticed as they were just tickled to visit all the animals. It would not have been a trip through Atlanta without a stop at the Varsity..memory lane at my dad's favorite place to eat chili dogs before a ballgame. We were also very excited to see my friend Jenni, who not only found time to visit us at the Ronald McD House but also joined us on our trip over to the Fernbank Natural Science Museum. I may have to post more pics of this experience later but needless to say.. Bella only had to enter the Dinosaur exhibit and she was in pure heaven.

As for the medical outcomes of the trip, I felt overall that we made few changes to Sam's medications, routine or therapy, but that we were able to update these Drs on what our child looks like on the better end of his health spectrum. He has such extreme transitionary periods of wellbeing, making it hard for Drs to diagnose, understand or treat him. When he looks good, he looks sooo good. During these periods, people would have a hard time seeing all that lies below the surface. When he is not doing well, it is the most horrible thing to witness. As much of his life is summarized in a phone book of medical records from one crash illness to another, and as most Drs look at records first, it can be easy to surmise that his prognosis may not be so good. I often wonder what the physicians imagine before they meet him when records are sent over first. Then they all seem to show such suprise upon meeting the bright and beautiful, engaging little man that arrives in place of that patient they read about with so many issues. You see him on a good day or in this case, you meet him after the longest stretch of decent health ever.. and you are astounded and greatly encouraged by the difference.

Since he has done so well in recent months and is making so many new strides with development and movement, I had many questions about whether his condition might not be progressive, degenerative. The answers I got from his Mito specialist were mixed. Since they really have yet to fully identify a source or exact gene to hang a "primary" Mitochondrial Disease diagnosis, we are left to let Sam show us what he is going to do. They did request additional blood samples from Jason and I as they found some curious abnormality that is being investigated further. This worried me even more about the baby I am expecting. Apparently their work at studying his samples is constantly ongoing. We talked about how within the diagnosis of Mitochondrial Disease, there is quite a range of prognoses and clinical findings. There is a 20% figure attached to those cases where things are going to progress in quite a degenerative pattern with some waxing and wanning of symptoms along the way and these cases carry the highest risk of fatal outcomes. Presenting earlier in life does not help the situation. Then, however, there is another 80% of cases where the patient does have periods of regression and "crash" episodes but if they overcome the bad periods they continue along on their upward course albeit at a different pace. For these cases, they may have periods where they can't walk or are hospitalized for one thing or another, but then also have periods where they are seemingly normal and doing fine. I don't know where we will fall and frankly, I am still perplexed about what they actually do know difinitively. I do feel having a negative outlook will not help. We have had a few Drs that took one look at the suspected diagnosis and gave us pure gloom and doom feedback, others were not convinced of the diagnosis, and then others think we will teeter along with dips but hopefully manage his symptoms. Our mito specialist says this is all relatively unchartered territory and research is ongoing. Our local Drs just don't see this enough to say one way or the other.

SO.. on to a new and exciting topic.. Sam is now super mobile! He is crawling! First he got to a sit, then he lifted up on all 4s, then he army crawled/ scooted on tummy, now he is actually crawling up on all 4s. It does take him quite awhile to get across my living room but, by golly, he has figured it out! I felt like Professor Henry Higgens in "My Fair Lady" when Eliza figures out how to properly pronouce, "the rain in spain stays mainly in the plain".. quite a moment around here! He has even done a full pullup of his whole body weight at the coffee table from sitting postion with his feet off the ground. He is amazing... and then he is tanked and sleeps all day long. One day,I hope he will walk.

On a really sad note, we just found out due to strange insurance contract issues that our physical and occupational therapists have with BCBS, we will be losing them for Sam's therapy. We will be getting a new physical therapist, but ours was wonderful and I am concerned about this shift effecting his progress. It seems we are not getting a new OT and on this I am quite concerned. It seems we are in a disadvantage because we have an insurance policy for Sam. The hardest part is our PT has been with us since the beginning and now just as Sam is making such progress.. to lose her is very hard. Everyone agrees that Sam can not be exposed to the environment of their busy clinic, so we are between a rock and a hard place. BCBS, our insurance provider says she can not provide us services in the home even if they are not being billed. It is crazy but somehow, a therapist with no BCBS affiliation can come in..and I can't risk illness for Sammy in a clinic 5 days a week.

Speaking of PT, the advice obtained from the orthopaedic appointment in Atlanta supports that Sam could certainly be placed in a stander or make use of assistive devices as he could see no reason that his bones or joints were unable to support him. The Dr. did say Mito kiddos would be at great risk of severe scoliosis if they were unable to keep their bodies erect due to their general muscle weakness or power supply issues.. but that would be further down the road.

As for the GI follow-up, I am further convinced that his Dr is a perfect part of our team. He seems to even want to lead it. He has a great bedside manner and is a plan maker. He draws me little pictures to explain his ideas and he is optimistic about good outcomes. The new plan was to totally clear out his system with a major dose of miralax over two days at 4 full caps a day and then stick to a daily routine of miralax and colace unlike our current practice of laying off when he has a liquid dumping day. He wanted us to also do a pediatric enema but apparently our tiny town has no such modern marvel... so we just used a liquid suppository. You can imagine what fun those next couple days were for the nurses and I! The goal is to get 1-2 soft bms each day, which in turn should speed up the stomach's efforts, which should allow us to try bolus gastric feeds again one day. Then maybe later eat primarily by mouth in the usual fashion. I hope this plan works.

Now of course we could not go to Atlanta without returning with a souvenir... for Sam this was a bout of pink eye that went from one eye to the other and then included a stuffy nose that seemed to be draining his energy. He had a brady or two and then by day 5 he was miserable. The pink eye antibiotic drops were obviously not enough. HIs gut was involved and the respiration issues. We went into his Dr. and found out that once again Sammy has a double ear infection... more antibiotics. Luckily after a couple rougher nights he has transitioned to sleeping all the time and no major declining issues. I hope this means that for once the antibiotics are working.

The last bit of excitement to share was what a fright we had last week when Bella and Sofie somehow butted heads while playing and Sofie's nose and mouth erupted with blood and yes, even more fun, she began to vomit. To say it was alot of blood is an understatement. All is fine now and she must have just hit it in such a way as to disrupt an artery near the nose bridge. Such a different feeling to deal with an emergent situation for the girls. I sure am out of practice on that.

I am praying right now for a few families from my church and community. Our neighbor passed away this last week after a battle with bone cancer. I pray for strength for her husband, sons and grandchildren. I also just received news of the loss of a member of my church choir. I know both of these families need to be lifted up. Our lives here on Earth are unfortunately always too short but some people, like these women, have walked a path in life that was meaningful and inspiring to those around them. They will live on in the hearts of all who knew and loved them.