He is PURE silly and makes my heart melt. Momma loves you sweet boy!
Sunday, January 30, 2011
Saturday, January 29, 2011
Home from Atlanta
This week has been a blur. Here are the highlights..it was a big week!
Sunday Night: During the last "medical shift" of the day when I have to prep and load all of Sam's food and meds for the overnight period we had a little problem. He now eats 19 hours a day but meds go in 3 times a day or some just as needed. When I had almost everything in I went to load the last crushed medicine and it got stuck. When it gets blocked up you have to pull back on the syringe and push forward a few times in hopes it will dislodge the block and allow it to flush.
Try as I might I could not get the syringe to budge. A trip to interventional radiology in Pensacola for the 3rd time this month was not in my plan for this busy week. So I called Jason to come give it a try. Mind you, he is rather nervous about administering meds. Jason has more strength in his little finger than I have in my whole body and he sometimes makes me think of Baby Huey. If you recall, that was the book about the huge baby that could unintentionally take out whole forests with the swing of his little rattle. So next thing I know he has barely pushed the syringe in and water is squirting out all over us. He blew a hole in the GJ tube with the pressure. UGGGH!! ..and still the clog did not budge.
It was one of those pure stomp your feet and yell "Dang it!!!" moments. Luckily it did not blow the J channel of his port, just the G side which goes to the stomach where we put meds, not food right now. So his food was able to continue thru the night and I had to plan to go to pensacola the next day.
Monday: Well..it worked out in my favor that Bella was leaving a little earlier that morning since she is now officially a......BIG GIRL BUS RIDER!! WOW - What a big step! The bus gets all the kids in our neighborhood at one stop near our church so I still have to drive her there but that is better than a drive across town. I was crying and everything. She acted like it was as big a deal as going to Disney to get on that bus.
She blew me a kiss from the window..and my heart skipped a beat. She is no longer that little baby we held in the crook of our arm. Our first little girl..our first time feeling what life was really all about...She changed our lives and now she is growing so independent. She had this locked on nervous excited smile..clearly quite the big moment for us both!
After that emotional send-off, I loaded up Sam and all his 10,000 pieces of equipment meds and junk..to make the tense drive to Pensacola. I sat in a waiting room for hours. During the GJ replacement procedure his BP went way up there and they made us stay for observation for a little while afterwords. The nurse said it was no wonder since they gave him no pain meds while they traced the intestines with a wire placing the thing in there. Talk about feeling crampy and miserable.
While I waited I got a call from Angel Flight saying the weather was not so good for securing a pilot for our next day's long awaited trip to Atlanta to meet with the mito specialist.. so I spent the whole drive home worrying about whether Sam could handle us trying to drive it ourselves. The whole reason for the Angel Flight is that Sam has always shown his true colors (no pun intended) on the second half of long trips back and forth from Gainesville. Well by that night I decided we could not hold off any longer since the info might be important in caring for him now before the next big health crisis. The nurse who had helped before the nursing care was suspended offered to go with us out of the goodness of her heart and I was so thankful. Not only is she a pancreatic cancer survivor but also was a missionary in Africa for 7 years..quite a life. She has taught me alot since she drifted out of the clouds to my door step. I just wish we could find a way to keep her.
Tuesday: Long drive through Alabama full of internal tension but thankful not to be alone..pretty scenes and old barns and lots of time to think.
You know me..lots of chatter all the way. I think the nurse kept me talking so I would not focus too much on what they might say to me the next day at the appt. The trip that should have taken 6 hours took us 8 and half because not only did we keep stopping for Sam and to do his meds but we also got lost in Atlanta. It was a dark, rainy night and I was pretty scared but thankfully my good friend talked me through the last leg of it over the phone. Thank you, Jenni.
A warm bed in the Dunwoody Ronald Mcdonald House and a shower made all the difference in loosening up my stiff neck. But..then I could not sleep..so many worries and questions and concerns. Sam decided to have some Brady episodes and I was up with that all hours of the night. I finally slept and the nurse took over in the early am letting me sleep in..but then that was stressful because I awoke with a start.."OH NO! We can't be late!" What the nurse did not realize in wanting me to rest is how involved a check out from RMH can be in a rush. We made it out though and with a few moments to spare.
Wednesday: We had our long awaited appt with Dr. S, the mito specialist. I had so many questions. They had alot of info to share and overall I was glad they did not leave me completely in gloom and doom. They had some positive plans and talked alot about how crucial it would be that Sam avoid any stress. We talked about ports, vaccines, TPN and meds and his weight which has somewhat stagnated for the last 4 months. They said we need to look at him like he was a micropreemie even though he was full term 8 lbs. We did not discuss much about some of the decisions made about his status in utero or how he was handled post birth which have long concerned us about whether some aspects of his status could have been avoided. I think they still don't fully understand how these decisions may have effected him and we may never fully know.
They described the little disorganized unstable energy factory in each of his cells. They said it is like a team huddle for a football game. His team is not all tight and close together following the coaches play instructions. One guy is on his cell phone..one is counting clouds and another is chatting with a friend. So..the instructions get lost and the play is disorganized. I love visuals like this. They don't know if his issues are a secondary or primary problem and they have not located a genetic cause. Mitochondria can be damaged through a chain of events or as a result of spontaneous mutation or following other conditions. They can be inherited from either exclusively mom (now known to be more rare) or from both mom and dad or not inherited at all. He was negative for all the genes they have mapped for mitochondrial disease. There is sooo much they are still trying to understand though about this disease. They do know what it means for him on a very fundamental level. His organs need optimized energy production to function well and as of right now we have these periods where on many levels he is doing just ok and then some areas always seem a bit over taxed but all it takes is a little cold or fever or being overtired or hot or just in general not up on his baseline and he is thrown over the edge which leads to systematic shut down. So it is our job to work on finding the healthy middle for our delicate little man.
Each time he is put through a major crash as I call it..he takes steps backward and has to work harder to regain them. He is in prime time for growth and development which requires alot of energy so this is an incredibly difficult time for mito kids. I asked if they expected him to make it through it and they said the chances of death in kids during this phase are less than we think. That is encouraging but as there have been many times I feel we shaved it close to that cliff I still can't completely let it out of my mind. It is always there..the elephant in the room. But God needs us to turn our focus away from worry and be the best advocates for our son's growth. He is such a fighter.
One interesting comparison that they made was to heat stroke that kills people in the summer. In those circumstances of extreme heat and dehydration, even otherwise healthy people can die from systematic organ failure. This is considered death by acute mitochondrial failure. This can happen in situations where people have top working mitochondria. With Sam having unstable dysfunctioning mitochondria, his body does not require the stress to involve extreme temperatures.His body reacts similarly to less extreme forces. It was an informative meeting and there are alot of things we can do to optimize his day to day. One of the biggest discussions was about coordination of care among all his many specialists. They want to be much more involved than I had thought but they will not coordinate everything from Atlanta. We will have to travel there every 3 months or so and call at every dip along the way. I get the impression we are part of all their research. This guy has only written 88 medical journals and has 6 drugs before the FDA for approval. They talked with me about the importance that our pediatrician coordinate his care and not leave us flandering to do it for oursleves (which is somewhat how things seem to go around here). This is common among mito kids and having a central team leader is crucial.. they don't have to be experts on mitochondrial disease but have to be willing to learn. I am hoping our wonderful pediatricians are like minded in this plan.
Late Wednesday: Long drive home and only one stop for feeling lost (thankful for the many people who came to my aid as I stood looking confused holding my map in the montgomery mcds)..and only one stop for Sam having an episode towards the end. A happy homecoming with the girls and Jason. I am soooo thankful that Sam made the trip rather uneventfully. I am also most thankful for my mother who not only has always come over and helped with the girls when I am away with Sam, but also has made it her personal daily mission since our last hospitalization to help me get the house back in shape and organized. I am sometimes in a full stressy mode and can't string together one task around here to the next. She swoops in and has been pulling together my loose ends. You never saw someone so excited to tackle cleaning my laudry room. I am blessed by her aid.
Thursday: Bella was super excited to find out she would be star of the week in her kindergarten class next week and so we worked on her "all about me" poster shown below. She gets to bring her favorite snack and do a show and tell and I am hoping to find a way to go in and read her favorite book to the class.
I am always very thankful for the many kind cards that come with prayer wishes and the love of many friends. Two came thursday afternoon during a lower moment and there are no words to say how much they meant in building me back up again.
Friday: Sofie had pajama day at school and had a great time eating breakfast on her sleeping bag. It is good to see them smiling over these fun experiences.
Prayers on my mind: My dear friend's father and their family as they make difficult health decisions. Financial and insurance concerns relating to all Sam's medical weighing heavy right now. Praying about an upcoming transition for my sister with a move to Belgium ahead and a husband deployed for the past year. Prayers of thanks in that they were able to sell their current home. Praying for a family that lost a pregnancy of twins right before an overseas deployment recently. Prayers of hope for our little boy that he not only overcome his challenges and enjoy a period without struggle to be able to focus on making strides in his growth but also thanks that he continues to show us everyday the power of God's love and the promises He has made for us all.
Sunday Night: During the last "medical shift" of the day when I have to prep and load all of Sam's food and meds for the overnight period we had a little problem. He now eats 19 hours a day but meds go in 3 times a day or some just as needed. When I had almost everything in I went to load the last crushed medicine and it got stuck. When it gets blocked up you have to pull back on the syringe and push forward a few times in hopes it will dislodge the block and allow it to flush.
Try as I might I could not get the syringe to budge. A trip to interventional radiology in Pensacola for the 3rd time this month was not in my plan for this busy week. So I called Jason to come give it a try. Mind you, he is rather nervous about administering meds. Jason has more strength in his little finger than I have in my whole body and he sometimes makes me think of Baby Huey. If you recall, that was the book about the huge baby that could unintentionally take out whole forests with the swing of his little rattle. So next thing I know he has barely pushed the syringe in and water is squirting out all over us. He blew a hole in the GJ tube with the pressure. UGGGH!! ..and still the clog did not budge.
It was one of those pure stomp your feet and yell "Dang it!!!" moments. Luckily it did not blow the J channel of his port, just the G side which goes to the stomach where we put meds, not food right now. So his food was able to continue thru the night and I had to plan to go to pensacola the next day.
Monday: Well..it worked out in my favor that Bella was leaving a little earlier that morning since she is now officially a......BIG GIRL BUS RIDER!! WOW - What a big step! The bus gets all the kids in our neighborhood at one stop near our church so I still have to drive her there but that is better than a drive across town. I was crying and everything. She acted like it was as big a deal as going to Disney to get on that bus.
After that emotional send-off, I loaded up Sam and all his 10,000 pieces of equipment meds and junk..to make the tense drive to Pensacola. I sat in a waiting room for hours. During the GJ replacement procedure his BP went way up there and they made us stay for observation for a little while afterwords. The nurse said it was no wonder since they gave him no pain meds while they traced the intestines with a wire placing the thing in there. Talk about feeling crampy and miserable.
While I waited I got a call from Angel Flight saying the weather was not so good for securing a pilot for our next day's long awaited trip to Atlanta to meet with the mito specialist.. so I spent the whole drive home worrying about whether Sam could handle us trying to drive it ourselves. The whole reason for the Angel Flight is that Sam has always shown his true colors (no pun intended) on the second half of long trips back and forth from Gainesville. Well by that night I decided we could not hold off any longer since the info might be important in caring for him now before the next big health crisis. The nurse who had helped before the nursing care was suspended offered to go with us out of the goodness of her heart and I was so thankful. Not only is she a pancreatic cancer survivor but also was a missionary in Africa for 7 years..quite a life. She has taught me alot since she drifted out of the clouds to my door step. I just wish we could find a way to keep her.
Tuesday: Long drive through Alabama full of internal tension but thankful not to be alone..pretty scenes and old barns and lots of time to think.
You know me..lots of chatter all the way. I think the nurse kept me talking so I would not focus too much on what they might say to me the next day at the appt. The trip that should have taken 6 hours took us 8 and half because not only did we keep stopping for Sam and to do his meds but we also got lost in Atlanta. It was a dark, rainy night and I was pretty scared but thankfully my good friend talked me through the last leg of it over the phone. Thank you, Jenni.
A warm bed in the Dunwoody Ronald Mcdonald House and a shower made all the difference in loosening up my stiff neck. But..then I could not sleep..so many worries and questions and concerns. Sam decided to have some Brady episodes and I was up with that all hours of the night. I finally slept and the nurse took over in the early am letting me sleep in..but then that was stressful because I awoke with a start.."OH NO! We can't be late!" What the nurse did not realize in wanting me to rest is how involved a check out from RMH can be in a rush. We made it out though and with a few moments to spare.
Wednesday: We had our long awaited appt with Dr. S, the mito specialist. I had so many questions. They had alot of info to share and overall I was glad they did not leave me completely in gloom and doom. They had some positive plans and talked alot about how crucial it would be that Sam avoid any stress. We talked about ports, vaccines, TPN and meds and his weight which has somewhat stagnated for the last 4 months. They said we need to look at him like he was a micropreemie even though he was full term 8 lbs. We did not discuss much about some of the decisions made about his status in utero or how he was handled post birth which have long concerned us about whether some aspects of his status could have been avoided. I think they still don't fully understand how these decisions may have effected him and we may never fully know.
They described the little disorganized unstable energy factory in each of his cells. They said it is like a team huddle for a football game. His team is not all tight and close together following the coaches play instructions. One guy is on his cell phone..one is counting clouds and another is chatting with a friend. So..the instructions get lost and the play is disorganized. I love visuals like this. They don't know if his issues are a secondary or primary problem and they have not located a genetic cause. Mitochondria can be damaged through a chain of events or as a result of spontaneous mutation or following other conditions. They can be inherited from either exclusively mom (now known to be more rare) or from both mom and dad or not inherited at all. He was negative for all the genes they have mapped for mitochondrial disease. There is sooo much they are still trying to understand though about this disease. They do know what it means for him on a very fundamental level. His organs need optimized energy production to function well and as of right now we have these periods where on many levels he is doing just ok and then some areas always seem a bit over taxed but all it takes is a little cold or fever or being overtired or hot or just in general not up on his baseline and he is thrown over the edge which leads to systematic shut down. So it is our job to work on finding the healthy middle for our delicate little man.
Each time he is put through a major crash as I call it..he takes steps backward and has to work harder to regain them. He is in prime time for growth and development which requires alot of energy so this is an incredibly difficult time for mito kids. I asked if they expected him to make it through it and they said the chances of death in kids during this phase are less than we think. That is encouraging but as there have been many times I feel we shaved it close to that cliff I still can't completely let it out of my mind. It is always there..the elephant in the room. But God needs us to turn our focus away from worry and be the best advocates for our son's growth. He is such a fighter.
One interesting comparison that they made was to heat stroke that kills people in the summer. In those circumstances of extreme heat and dehydration, even otherwise healthy people can die from systematic organ failure. This is considered death by acute mitochondrial failure. This can happen in situations where people have top working mitochondria. With Sam having unstable dysfunctioning mitochondria, his body does not require the stress to involve extreme temperatures.His body reacts similarly to less extreme forces. It was an informative meeting and there are alot of things we can do to optimize his day to day. One of the biggest discussions was about coordination of care among all his many specialists. They want to be much more involved than I had thought but they will not coordinate everything from Atlanta. We will have to travel there every 3 months or so and call at every dip along the way. I get the impression we are part of all their research. This guy has only written 88 medical journals and has 6 drugs before the FDA for approval. They talked with me about the importance that our pediatrician coordinate his care and not leave us flandering to do it for oursleves (which is somewhat how things seem to go around here). This is common among mito kids and having a central team leader is crucial.. they don't have to be experts on mitochondrial disease but have to be willing to learn. I am hoping our wonderful pediatricians are like minded in this plan.
Late Wednesday: Long drive home and only one stop for feeling lost (thankful for the many people who came to my aid as I stood looking confused holding my map in the montgomery mcds)..and only one stop for Sam having an episode towards the end. A happy homecoming with the girls and Jason. I am soooo thankful that Sam made the trip rather uneventfully. I am also most thankful for my mother who not only has always come over and helped with the girls when I am away with Sam, but also has made it her personal daily mission since our last hospitalization to help me get the house back in shape and organized. I am sometimes in a full stressy mode and can't string together one task around here to the next. She swoops in and has been pulling together my loose ends. You never saw someone so excited to tackle cleaning my laudry room. I am blessed by her aid.
Thursday: Bella was super excited to find out she would be star of the week in her kindergarten class next week and so we worked on her "all about me" poster shown below. She gets to bring her favorite snack and do a show and tell and I am hoping to find a way to go in and read her favorite book to the class.
I am always very thankful for the many kind cards that come with prayer wishes and the love of many friends. Two came thursday afternoon during a lower moment and there are no words to say how much they meant in building me back up again.
Friday: Sofie had pajama day at school and had a great time eating breakfast on her sleeping bag. It is good to see them smiling over these fun experiences.
Prayers on my mind: My dear friend's father and their family as they make difficult health decisions. Financial and insurance concerns relating to all Sam's medical weighing heavy right now. Praying about an upcoming transition for my sister with a move to Belgium ahead and a husband deployed for the past year. Prayers of thanks in that they were able to sell their current home. Praying for a family that lost a pregnancy of twins right before an overseas deployment recently. Prayers of hope for our little boy that he not only overcome his challenges and enjoy a period without struggle to be able to focus on making strides in his growth but also thanks that he continues to show us everyday the power of God's love and the promises He has made for us all.
Sunday, January 23, 2011
Choices..
Everyday is filled with choices.. little unimportant ones like what everyone needs to wear that day or what to make for dinner..but most recently many of our days have included more serious life or death choices. I am getting better at those. Then there are parenting choices and marital choices and just plain personal choices about how we handle all the other choices..some of these are life-changing, soul-shaping choices.
The picture below is at the conclusion of Sam's bath after I attempted to bathe him with his feeding pump connected by his tubes and the IV pole dragged in the bathroom while holding his weak little floppy body in one hand and fighting his other hands away from playing with the exposed feeding tube. I found myself calling for Jason's aid to hang on to my slippery little son and asking myself, "Why was I doing this the hard way?"
You had to be there..it was a priceless bad choice costing me more time than it saved! I finally got him disconnected from the feeding, narrowly avoiding Sam yanking the tube out which would have required another trip to the hospital for another procedure. After all that, the bath I thought would make him feel better really just made him fully irritated. All that struggle.. because I was behind on everything and thought I could just wedge in two things at one time. Jeez.
I have long struggled (even before Sam came on the scene) with the issue of over scheduling myself or trying to jam in too many things at once..call it Busy Momma Syndrome! I think it is actually more prevalent than realized by my generation. We think we are superwomen, climbing tall buildings in a single bound! Whomever coined the term "Moms CAN have it all" was obviously not a mother for very long. I know we are told we can do ALL things through Christ..but I don't think that means all things we selfishly value in the year 2010.
Did Jesus know there would be this whole inner struggle of the stay at home mom vs. working mom? Did he see the age of computers and facebook and the pressure to have a brilliant child who reads before the age of 3? Did he know moms would taxi their kids all over town just to make sure they had lots of new experiences. Surely he did not imagine the material objects that would fill this world and try to steal our core values.. or maybe he did. He knew we would be lured by the idea of "having it all"..so he hoped to guide us in figuring out what actually really matters and how to be strong through the stuff we have no control over. Anyways... I am no longer hung up on the lure to have it all..and frankly I don't need to go back to being "hurried" by unimportant busyness that traps so many women of my generation. I am crazy insane busy enough surviving the stuff that has to be done and the rest is gonna go.
So laying in bed last night I made this one decision on something that I kept putting off. I had too many other things crammed in my head and that one was put to the back but actually was more important. Maybe if I stop letting the junk cloud my choices and fill my head I will make the right choices on the stuff that actually matters. The road ahead is not easy to always see right now.. but I am feeling more confident that whatever lies ahead we will weather it fine one choice at a time.
The Road Not Taken
Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;
Then took the other, as just as fair,
And having perhaps the better claim
Because it was grassy and wanted wear,
Though as for that the passing there
Had worn them really about the same,
And both that morning equally lay
In leaves no step had trodden black.
Oh, I marked the first for another day!
Yet knowing how way leads on to way
I doubted if I should ever come back.
I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I,
I took the one less traveled by,
And that has made all the difference.
Robert Frost
The picture below is at the conclusion of Sam's bath after I attempted to bathe him with his feeding pump connected by his tubes and the IV pole dragged in the bathroom while holding his weak little floppy body in one hand and fighting his other hands away from playing with the exposed feeding tube. I found myself calling for Jason's aid to hang on to my slippery little son and asking myself, "Why was I doing this the hard way?"
You had to be there..it was a priceless bad choice costing me more time than it saved! I finally got him disconnected from the feeding, narrowly avoiding Sam yanking the tube out which would have required another trip to the hospital for another procedure. After all that, the bath I thought would make him feel better really just made him fully irritated. All that struggle.. because I was behind on everything and thought I could just wedge in two things at one time. Jeez.
I have long struggled (even before Sam came on the scene) with the issue of over scheduling myself or trying to jam in too many things at once..call it Busy Momma Syndrome! I think it is actually more prevalent than realized by my generation. We think we are superwomen, climbing tall buildings in a single bound! Whomever coined the term "Moms CAN have it all" was obviously not a mother for very long. I know we are told we can do ALL things through Christ..but I don't think that means all things we selfishly value in the year 2010.
Did Jesus know there would be this whole inner struggle of the stay at home mom vs. working mom? Did he see the age of computers and facebook and the pressure to have a brilliant child who reads before the age of 3? Did he know moms would taxi their kids all over town just to make sure they had lots of new experiences. Surely he did not imagine the material objects that would fill this world and try to steal our core values.. or maybe he did. He knew we would be lured by the idea of "having it all"..so he hoped to guide us in figuring out what actually really matters and how to be strong through the stuff we have no control over. Anyways... I am no longer hung up on the lure to have it all..and frankly I don't need to go back to being "hurried" by unimportant busyness that traps so many women of my generation. I am crazy insane busy enough surviving the stuff that has to be done and the rest is gonna go.
So laying in bed last night I made this one decision on something that I kept putting off. I had too many other things crammed in my head and that one was put to the back but actually was more important. Maybe if I stop letting the junk cloud my choices and fill my head I will make the right choices on the stuff that actually matters. The road ahead is not easy to always see right now.. but I am feeling more confident that whatever lies ahead we will weather it fine one choice at a time.
The Road Not Taken
Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;
Then took the other, as just as fair,
And having perhaps the better claim
Because it was grassy and wanted wear,
Though as for that the passing there
Had worn them really about the same,
And both that morning equally lay
In leaves no step had trodden black.
Oh, I marked the first for another day!
Yet knowing how way leads on to way
I doubted if I should ever come back.
I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I,
I took the one less traveled by,
And that has made all the difference.
Robert Frost
Thursday, January 20, 2011
Flying Solo Again..
Last night was an incredibly long night. I don't think I slept more than 2 hours as Sam had drastically up and down heart rates from 140 down to the high 50s (far too low for babies) all night long, setting off his alarms and basically making me a nervous wreck. Luckily his O2 sats were pretty good because as he would dive to dangerous HR levels, he also climbed back up fairly fast. I did not note any color changes which usually come with HRs in the 50s if it is prolonged. However at any moment I know the risk of cardiac arrest looms over him.. in moments like that I find myself requestioning the need for the pacemaker.. but it is a rare activity while on his meds and yet it is sooo strange to sit there watching it happening over and over..dowwwn and popping back up...doooowwn and popping back up. I hooked up the pulsox and not just the HR moniter and that gave me a little more peace of mind that I might catch a dangerous desat. I am always worrying the down won't pop back up as has happened on those scarey occasions in the past. So I slept in these tiny increments jumping every few minutes at the alarms. By morning I was so conditioned to them that I did not even race to the crib anymore unless the beeping was sustained more than the few beeps. That is a horrible feeling to be so tired you think to yourself..this is just another quick drop I won't go until it hesitates too long...but what is too long? Why does our parenting skill have to include a plan for how long a low HR should be allowed to hover when before at night all we worried about with our girls were fevers and bedwetting?
His early morning meds..
After morning meds (which I pushed a little early) he seemed to rally and I began to question whether we might have not given the full dose before bed..when you are giving 7-10 meds every few hours it is not unusual to worry about this stuff. I can't put into words how involved his medication regime is other than to say his nurse was here those precious few days and hardly did anything other than prepping meds (some are crushed, others are drawn up by needle and others have to be dissolved) and then coupled with the administering of his 18 hour feeds which have to be constantly remixed as they are a special formula that can't be just made once and put in for all day use, I don't think she sat down once. It is a big job.
I thought back and remembered specifically pulling up the right amount last night and so then I started questioning whether he is outgrowing the dose for therapeutic levels or..is this a sign he is getting sick which is why he has bradyed more in the past. In the past day or so I have gotten sick myself and what I thought started as just sinus issues has developed into aches and yucky weak feeling (probably exacerbated by no sleep). I am just praying Sam does not get this bug whatever it is. I am also praying for Bella's little buddy who is fighting a big bug today. Seems like alot of kiddos are pretty sick. He is running 103 fever, bless his heart, and I hope he rallys soon. We gave him a ride home yesterday and as we had just found out we lost the nursing, Sam was in the vehicle in close quarters. UGHH. Praying he does not catch what all these kids in the schools seem to be fighting. At least the girls have been doing rather well.
The girls got an art project in after school while I busied myself with Samo and I am learning they are far less likely to have "moments" if they are kept on task in some form of activity..
And.. a walk and some fresh air on the golf course was good for our goals of better physical health around here... (I do hope that walk was not what led to the night of a million beeps).
SO..I can't wait to crash tonight. The worst of yesterday was the news of the nursing being suspended till we get some kind of billing arrangement worked out..we still have no new insurance confirmed and even when we do have it, we will have already exhausted in the last two weeks the annual limits. So..that is when we would need to start fighting for full time nursing but without a new policy we have no one to fight for it with... A solution is out there somewhere.. somehow.
My Precious Baby Boy..
One good thing did happen in Sam's therapy. He is able to hold a prop sit when positioned on towels in an empty hamper basket..oh how cute he is grinning about his accomplishment! He does not hold it for long but he is working on it. His physical therapist was concerned that his endurance seeming to be getting worse as she could only work him for shorter periods lately but we feel this is transitionary from day to day. If that could improve, he would make huge strides..well I guess that is really at the heart of it all. If he had the ability to effectively make energy, he could do anything. Dysfunction on some cellular level is just holding him back.. we don't have genetic origens on this and I think personally that the cellular dysfunction was caused by a chain of events brought on by prolonged stress inutero but until we understand his situation more fully we just have to pray for optimized energy or "en-g" as Sofie referred to it with Jason last night. She said he needed his sleep so he would have his "en-g" for the next day. I intend to post a link to the united mitochondrial disease foundation website www.umdf.org to the sidebar area when I can figure out how, so those of you who follow my ramblings and have never heard of Mitochondrial Disease can read up on the details. Don't let yourself read too far into the scarey online stories. We are going to be the ones that defy the odds and overcome the hurdles. He has fully proven his stealth fighter status with me. So now I need some sleep so we can have a better day tomorrow. :)
After morning meds (which I pushed a little early) he seemed to rally and I began to question whether we might have not given the full dose before bed..when you are giving 7-10 meds every few hours it is not unusual to worry about this stuff. I can't put into words how involved his medication regime is other than to say his nurse was here those precious few days and hardly did anything other than prepping meds (some are crushed, others are drawn up by needle and others have to be dissolved) and then coupled with the administering of his 18 hour feeds which have to be constantly remixed as they are a special formula that can't be just made once and put in for all day use, I don't think she sat down once. It is a big job.
I thought back and remembered specifically pulling up the right amount last night and so then I started questioning whether he is outgrowing the dose for therapeutic levels or..is this a sign he is getting sick which is why he has bradyed more in the past. In the past day or so I have gotten sick myself and what I thought started as just sinus issues has developed into aches and yucky weak feeling (probably exacerbated by no sleep). I am just praying Sam does not get this bug whatever it is. I am also praying for Bella's little buddy who is fighting a big bug today. Seems like alot of kiddos are pretty sick. He is running 103 fever, bless his heart, and I hope he rallys soon. We gave him a ride home yesterday and as we had just found out we lost the nursing, Sam was in the vehicle in close quarters. UGHH. Praying he does not catch what all these kids in the schools seem to be fighting. At least the girls have been doing rather well.
The girls got an art project in after school while I busied myself with Samo and I am learning they are far less likely to have "moments" if they are kept on task in some form of activity..
SO..I can't wait to crash tonight. The worst of yesterday was the news of the nursing being suspended till we get some kind of billing arrangement worked out..we still have no new insurance confirmed and even when we do have it, we will have already exhausted in the last two weeks the annual limits. So..that is when we would need to start fighting for full time nursing but without a new policy we have no one to fight for it with... A solution is out there somewhere.. somehow.
One good thing did happen in Sam's therapy. He is able to hold a prop sit when positioned on towels in an empty hamper basket..oh how cute he is grinning about his accomplishment! He does not hold it for long but he is working on it. His physical therapist was concerned that his endurance seeming to be getting worse as she could only work him for shorter periods lately but we feel this is transitionary from day to day. If that could improve, he would make huge strides..well I guess that is really at the heart of it all. If he had the ability to effectively make energy, he could do anything. Dysfunction on some cellular level is just holding him back.. we don't have genetic origens on this and I think personally that the cellular dysfunction was caused by a chain of events brought on by prolonged stress inutero but until we understand his situation more fully we just have to pray for optimized energy or "en-g" as Sofie referred to it with Jason last night. She said he needed his sleep so he would have his "en-g" for the next day. I intend to post a link to the united mitochondrial disease foundation website www.umdf.org to the sidebar area when I can figure out how, so those of you who follow my ramblings and have never heard of Mitochondrial Disease can read up on the details. Don't let yourself read too far into the scarey online stories. We are going to be the ones that defy the odds and overcome the hurdles. He has fully proven his stealth fighter status with me. So now I need some sleep so we can have a better day tomorrow. :)
Wednesday, January 19, 2011
One Day At A Time
I have not written in over a week as it has been a busy week.. trying to get life back into shape and pull some order to the chaos of how we ended 2010. I am well on my way to making some much needed changes.
Sofie runs hot and cold lately with her daily moods. She has been a big helper for me with her little brother.
This is Bella last week on crazy hair day when they got to do up their hair fun and dress a little crazy. Being a little HOT PINK for the day was a big hit with Bella!
We had some bumps along the way this week with Sam's new GJ tube. The first was last Tuesday night when I handed Sam over to Jason's arms and realized his GJ tube had popped out in the transfer. This is such a mess to have reinserted as it has to be done under floroscopy x ray to make sure it is placed properly in the intestines and if it comes out completely he has to be intubated with anesthesia. It did not come out very far though and so we got it back in and headed to the ER for xray and all was fine. Then yesterday it happened again! UGHH!! The nurse had just bathed him and it popped out as she dressed him but this time it came out much farther so we had to head to Sacred Heart and have it replaced by interventional radiology. This can not be happening every week.. I will loose my mind. We had to wait forever and the whole day was gone by the time we got home. Thank you Lord for my good friend and mother who came to the rescue with the girls.
Aftter a full day at the hospital yesterday, I got home and asked Bella how her 100th day party at school went today and she said.."Well, it's tomorrow..you dressed me for it on the wrong day. I was out of uniform on the wrong day." UGHH.
Sam is making progress with his therapy and is in general very happy. We are working on getting to the skill of sitting and working with foods he can hold and try to taste on his own as opposed to spoon fed which has not been going well. Eating has been a very difficult area for him since birth on several levels as it requires coordination of breathing and swallowing and as his airway is very floppy and with his low heart rate dives we have to be very careful about exertion and stress. Weighing the risks and benefits of each effort to feed him by mouth (choking and aspiration risks against his need to learn to eat) are what fills my mind each and every day.
The main thing I am praying hard about right now is insurance..gotta have it and am beginning to feel like it will never come together. The agent is working hard for us and leaning on the underwriters for a swift responce but it may come down to Samuel having to go under an expensive gap conversion plan on his own. Either way we need to get something in order soon as all the parties need to bill for everything and I have paid out of pocket for as much as is possible right now. His meds alone in one month are more than most people's mortgage payments and then you add the medical equipment, hospitalizations and constant appts and ER visits. It is overwhelming. I find myself crying at times only to realize this is beyond any normal person's means and I have to laugh and just decide to take it one day at a time.. one bill at a time..one emergency at a time..one shift of prepping meds at a time.. one phone call arranging the meds, appts, equipment and insurance at a time... It is all anyone can do. I am doing my best. He is so deserving of my very best. He thanks me one smile at a time..one warm embrace at a time...one sweet open mouth biting chin kiss at a time.
I found this poem online this morning and thought it was a good one to sign off with today. Tomorrow will be a fresh day for us and I pray for all the rest of you as well. God gives us strength enough for the day we are in.. the moment even. I don't think we are born with everything we need for what lies ahead. He helps us rise to the occasion. He is strong enough for all of it and we just have to trust Him and focus on today.
One Day at a Time
One day at a time, with its failures and fears,
With its hurts and mistakes, with its weakness and tears,
With its portion of pain and its burden of care;
One day at a time we must meet and must bear.
One day at a time to be patient and strong,
To be calm under trial and sweet under wrong;
Then its toiling shall pass and its sorrow shall cease;
It shall darken and die, and the night shall bring peace.
One day at a time - but the day is so long,
And the heart is not brave, and the soul is not strong,
O Thou pitiful Christ, be Thou near all the way;
Give courage and patience and strength for the day.
Swift cometh His answer, so clear and so sweet;
"Yea, I will be with thee, thy troubles to meet;
I will not forget thee, nor fail thee, nor grieve;
I will not forsake thee; I never will leave."
Not yesterday's load we are called on to bear,
Nor the morrow's uncertain and shadowy care;
Why should we look forward or back with dismay?
Our needs, as our mercies, are but for the day.
One day at a time, and the day is His day;
He hath numbered its hours, though they haste or delay.
His grace is sufficient; we walk not alone;
As the day, so the strength that He giveth His own.
BY Annie Johnson Flint
Deut. 33:25 ...and as thy days, so shall thy strength be.
2Cor. 12:9 And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me.
We had some bumps along the way this week with Sam's new GJ tube. The first was last Tuesday night when I handed Sam over to Jason's arms and realized his GJ tube had popped out in the transfer. This is such a mess to have reinserted as it has to be done under floroscopy x ray to make sure it is placed properly in the intestines and if it comes out completely he has to be intubated with anesthesia. It did not come out very far though and so we got it back in and headed to the ER for xray and all was fine. Then yesterday it happened again! UGHH!! The nurse had just bathed him and it popped out as she dressed him but this time it came out much farther so we had to head to Sacred Heart and have it replaced by interventional radiology. This can not be happening every week.. I will loose my mind. We had to wait forever and the whole day was gone by the time we got home. Thank you Lord for my good friend and mother who came to the rescue with the girls.
Aftter a full day at the hospital yesterday, I got home and asked Bella how her 100th day party at school went today and she said.."Well, it's tomorrow..you dressed me for it on the wrong day. I was out of uniform on the wrong day." UGHH.
Sam is making progress with his therapy and is in general very happy. We are working on getting to the skill of sitting and working with foods he can hold and try to taste on his own as opposed to spoon fed which has not been going well. Eating has been a very difficult area for him since birth on several levels as it requires coordination of breathing and swallowing and as his airway is very floppy and with his low heart rate dives we have to be very careful about exertion and stress. Weighing the risks and benefits of each effort to feed him by mouth (choking and aspiration risks against his need to learn to eat) are what fills my mind each and every day.
The main thing I am praying hard about right now is insurance..gotta have it and am beginning to feel like it will never come together. The agent is working hard for us and leaning on the underwriters for a swift responce but it may come down to Samuel having to go under an expensive gap conversion plan on his own. Either way we need to get something in order soon as all the parties need to bill for everything and I have paid out of pocket for as much as is possible right now. His meds alone in one month are more than most people's mortgage payments and then you add the medical equipment, hospitalizations and constant appts and ER visits. It is overwhelming. I find myself crying at times only to realize this is beyond any normal person's means and I have to laugh and just decide to take it one day at a time.. one bill at a time..one emergency at a time..one shift of prepping meds at a time.. one phone call arranging the meds, appts, equipment and insurance at a time... It is all anyone can do. I am doing my best. He is so deserving of my very best. He thanks me one smile at a time..one warm embrace at a time...one sweet open mouth biting chin kiss at a time.
I found this poem online this morning and thought it was a good one to sign off with today. Tomorrow will be a fresh day for us and I pray for all the rest of you as well. God gives us strength enough for the day we are in.. the moment even. I don't think we are born with everything we need for what lies ahead. He helps us rise to the occasion. He is strong enough for all of it and we just have to trust Him and focus on today.
One Day at a Time
One day at a time, with its failures and fears,
With its hurts and mistakes, with its weakness and tears,
With its portion of pain and its burden of care;
One day at a time we must meet and must bear.
One day at a time to be patient and strong,
To be calm under trial and sweet under wrong;
Then its toiling shall pass and its sorrow shall cease;
It shall darken and die, and the night shall bring peace.
One day at a time - but the day is so long,
And the heart is not brave, and the soul is not strong,
O Thou pitiful Christ, be Thou near all the way;
Give courage and patience and strength for the day.
Swift cometh His answer, so clear and so sweet;
"Yea, I will be with thee, thy troubles to meet;
I will not forget thee, nor fail thee, nor grieve;
I will not forsake thee; I never will leave."
Not yesterday's load we are called on to bear,
Nor the morrow's uncertain and shadowy care;
Why should we look forward or back with dismay?
Our needs, as our mercies, are but for the day.
One day at a time, and the day is His day;
He hath numbered its hours, though they haste or delay.
His grace is sufficient; we walk not alone;
As the day, so the strength that He giveth His own.
BY Annie Johnson Flint
Deut. 33:25 ...and as thy days, so shall thy strength be.
2Cor. 12:9 And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me.
Sunday, January 9, 2011
Planning A New Look For The Blog.. New Outlook On My Life
I learned something today from my daughters.
I had gotten overly frustrated in the morning hours with the girls over how little they heeded our "talk" in the car about how they should act in church that morning. See, recently we have been attending "rock" church aka a contemporary service where you can be a little more lax about the kids getting up and moving around, drawing, chatting during songs etc. We always did the traditional service but changed when we started having to bring Samuel in with his alarms and pumps and such as it would be rather embarassing to have those go off in a quiet sanctuary..well today I had the girls and we left Sam and Dad behind as Jason is now concerned Sam will catch some kind of illness landing us back in the hospital. We were going to the traditional as I needed to stand for the installation of church officers as I am now on the nominating committee. The girls apparently have forgotten how to remain silent during this type of traditional service. It is always a wonderful moment to have your head bowed in prayer and hear your toddler say out loud.."mom, I am really hungry..mom, do you hear me?" ugh..I can't put that feeling properly into words. So that had me a bit flustered and then I had the crazy idea I could get a trip into Publix done real quick while Jason had Samuel. From the start, the girls were fussing at each other and grabbing things off shelves and basically trying to get a rise out of me. SO after a huge lecture, I put them to work cleaning their play room. Jason left for the office and I tried to take a few minutes to de-stress.
That is when Bella came to me and said, "Mom, are you mad at us because we were bad in the store? I don't want you to be mad cause then you go away to the hospital and you're mad at me." I had to just hug her sweet little self and promise that no matter how mad I get over their "moments", I would never want to be away from them and that the hospital trips are something that happens because Samuel gets sick sometimes and needs extra help. What I learned in that moment is that I allow myself to get so exhausted and worn down by all that Sam has going on that I probably don't realize the normal antics of little girls is really just that.. normal and I need to enjoy them and brush it off and love on em. I don't want to be so short and exhausted all the time. I want to enjoy every minute of mothering these 3 sweet kids. I find myself "surviving" motherhood too much lately.. instead of soaking it all up with grace. It is an absolute gift from God to be able to live this life. To touch their lives and make an impact on who they become. Yes, this was a year of some crummy experiences..but it was a year of growth for all of us in sooo many ways and it was a beautiful year in that our Samuel is here and touching our lives. He could have died so many times this year but God got him through it and got us through it too. I hope my kids never question how much we love them or forgive them in the follys of learning from mistakes as they grow.
So with a plan to start 2011 fresh and with a positive outlook, I am going to find some time later in my week to freshen up the look of the blog and my mindset moving forward as well.. I know I keep saying I will get better at this but already I think I have found some peace about Sam's health situation and am working on my total life view. There is only so much I can do in any one direction. I can't work miracles so half my battle to finding peace about everything this year is being content in knowing there are limits and trusting God to pick it up where I am limited. I have faith that for every tough day and experience there is a good one to come ahead. In church today we talked about doing your best..to stay calm and compassionate and stay constructive and challenged (I have challenged down but sometimes I am less than constructive). So with that in mind, I am setting out personal goals for myself and my family in the coming days, weeks and months ahead:
1. Do my best to... encourage better physical and mental health for our family with better diet, exercise and spititual and personal fulfillment. It is not all about work and medical junk and bills etc..find time to cleanse and energize our minds, bodies and spirits. I know personally giving back to others has cleansed my spirit and with all the needs this year of Samuel I might need an opportunity to be filled pouring out some care to someone else even if I can only commit to small acts right now.
2. Do my best to .. ORGANIZE and SIMPLIFY OUR LIFE. This starts tomorrow with a room by room clear out of all the junk that is stealing our joy and causing unnecessary stress. Having spent half this year in hospital rooms with one bag/ change of clothing etc.. I realize we NEED very little in life. PLUS.. it makes me ill to be stressed to the max financially from all this medical financial strain and then have to look at a playroom with plastic toys accumulated over the last 5 years.
3. Do my best to ... figure out the priorities of life and pour myself into them with excitement and motivation...no more "woe is me." What does not fit into the daily routine has to go... Right now the contendors for our time are: supporting Jason's business, securing Sam's medical needs, and of course building quality life experiences with the kids.
Just 3 little goals.. but I am relly excited to start working on them. Here is to starting fresh in 2011..
amanda
I had gotten overly frustrated in the morning hours with the girls over how little they heeded our "talk" in the car about how they should act in church that morning. See, recently we have been attending "rock" church aka a contemporary service where you can be a little more lax about the kids getting up and moving around, drawing, chatting during songs etc. We always did the traditional service but changed when we started having to bring Samuel in with his alarms and pumps and such as it would be rather embarassing to have those go off in a quiet sanctuary..well today I had the girls and we left Sam and Dad behind as Jason is now concerned Sam will catch some kind of illness landing us back in the hospital. We were going to the traditional as I needed to stand for the installation of church officers as I am now on the nominating committee. The girls apparently have forgotten how to remain silent during this type of traditional service. It is always a wonderful moment to have your head bowed in prayer and hear your toddler say out loud.."mom, I am really hungry..mom, do you hear me?" ugh..I can't put that feeling properly into words. So that had me a bit flustered and then I had the crazy idea I could get a trip into Publix done real quick while Jason had Samuel. From the start, the girls were fussing at each other and grabbing things off shelves and basically trying to get a rise out of me. SO after a huge lecture, I put them to work cleaning their play room. Jason left for the office and I tried to take a few minutes to de-stress.
That is when Bella came to me and said, "Mom, are you mad at us because we were bad in the store? I don't want you to be mad cause then you go away to the hospital and you're mad at me." I had to just hug her sweet little self and promise that no matter how mad I get over their "moments", I would never want to be away from them and that the hospital trips are something that happens because Samuel gets sick sometimes and needs extra help. What I learned in that moment is that I allow myself to get so exhausted and worn down by all that Sam has going on that I probably don't realize the normal antics of little girls is really just that.. normal and I need to enjoy them and brush it off and love on em. I don't want to be so short and exhausted all the time. I want to enjoy every minute of mothering these 3 sweet kids. I find myself "surviving" motherhood too much lately.. instead of soaking it all up with grace. It is an absolute gift from God to be able to live this life. To touch their lives and make an impact on who they become. Yes, this was a year of some crummy experiences..but it was a year of growth for all of us in sooo many ways and it was a beautiful year in that our Samuel is here and touching our lives. He could have died so many times this year but God got him through it and got us through it too. I hope my kids never question how much we love them or forgive them in the follys of learning from mistakes as they grow.
So with a plan to start 2011 fresh and with a positive outlook, I am going to find some time later in my week to freshen up the look of the blog and my mindset moving forward as well.. I know I keep saying I will get better at this but already I think I have found some peace about Sam's health situation and am working on my total life view. There is only so much I can do in any one direction. I can't work miracles so half my battle to finding peace about everything this year is being content in knowing there are limits and trusting God to pick it up where I am limited. I have faith that for every tough day and experience there is a good one to come ahead. In church today we talked about doing your best..to stay calm and compassionate and stay constructive and challenged (I have challenged down but sometimes I am less than constructive). So with that in mind, I am setting out personal goals for myself and my family in the coming days, weeks and months ahead:
1. Do my best to... encourage better physical and mental health for our family with better diet, exercise and spititual and personal fulfillment. It is not all about work and medical junk and bills etc..find time to cleanse and energize our minds, bodies and spirits. I know personally giving back to others has cleansed my spirit and with all the needs this year of Samuel I might need an opportunity to be filled pouring out some care to someone else even if I can only commit to small acts right now.
2. Do my best to .. ORGANIZE and SIMPLIFY OUR LIFE. This starts tomorrow with a room by room clear out of all the junk that is stealing our joy and causing unnecessary stress. Having spent half this year in hospital rooms with one bag/ change of clothing etc.. I realize we NEED very little in life. PLUS.. it makes me ill to be stressed to the max financially from all this medical financial strain and then have to look at a playroom with plastic toys accumulated over the last 5 years.
3. Do my best to ... figure out the priorities of life and pour myself into them with excitement and motivation...no more "woe is me." What does not fit into the daily routine has to go... Right now the contendors for our time are: supporting Jason's business, securing Sam's medical needs, and of course building quality life experiences with the kids.
Just 3 little goals.. but I am relly excited to start working on them. Here is to starting fresh in 2011..
amanda
Saturday, January 8, 2011
Trip botched by winter weather
After much prep and ado about this trip to Atlanta..I got a call this morning from the pilot to tell me we should not fly in this type of weather..snow and ice is on the way and it would be an extremely rocky flight. Of course the nurse had already left her house an hour away to come here and I hate that she went to trouble of packing etc..such a let down too not to be able to have this appt and gain some real info on what we have needed to understand for the last 9 months. To make things more complicated..this Dr charges $250 for cancellations. I am hoping they make an exception due to the weather situation as they say all of Atlanta will likely close up shop. SO..we will try again when weather is better. Thank you to those who prayed for the safe trip. I have another friend and their family traveling this weekend up to Birmingham and I hope they are safe during this rough weather forecasted for tomorrow. I sure wish the girls got to see some snow though. If it were not supposed to be soo unsafe I would say I wish we could try to make it by car..although that may be a triple risky measure all around. :) Many prayers for all out driving tomorrow on roads that not usually covered in snow and ice.
amanda
amanda
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