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
Sunday, January 9, 2011
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
Here we go into the wild, blue yonder..
Tonight I scanned back on the blog a bit and realized that it is not that exciting or fun to look at..plus it is completely full of errors I normally would never make but am just too tired to care to fix. I would love to make it more interesting with flowers and cool fonts and neat links or sidebars or more pictures. I just type away at night when I am so tired but am needing to get it all out of my head so I can rest. My messy run-ons and spelling blunders are so indicative of how easily little stuff gets swallowed up in life's cracks when there are bigger earthquakes in the area...no time to stop and edit. I am so tired and often rushed or plain overwhelmed..sometimes the cup runneth over. So for now I will have to be like Scarlett and put off the fun attention to detail parts of life that just don't work in today's schedule.."after all tomorrow is another day."
Sam and I are leaving in the morning with the nurse on an angel flight bound for Atlanta for a few days. It is a tiny 4 seater (mooney?)with strict weight requirements so Jason can't go as they are barely letting me and the tiny nurse go. Sam just can't take strain of a long drive so this is best option. I am so thankful for this nurse as I am not sure I could do this one alone. She offered to go along out of the kindness of her heart. (God sends us angels..) The nursing company can't pay her as it is across state lines and we can't pay her for conflict contract issues. This is a followup meeting with the mitochondrial disease expert's nurse who will go over in detail the report findings and treatments/ managment plan as well as answering questions etc. I am a little worried about what she will say about what to expect..do most kids with his level of dysfunction do well over time or does this have more of a progressive outlook. I need to have a more solid basis for the probable origin of his condition. It is listed as "probable Mitochondrial disease" because not all the testing is complete or indicating clear origins of this disease as a primary or secondary dysfunction. They may never have a clear understanding of what has happened to put his metabolic biorhythems into this malfunctioning state. I need to know how to maximize his health and optimize the cell's production of the energy his body needs. They don't have any info since October on Sam's case so I want to know how the GI down turn plays into all this as it is the most recent change in his condition. I also need to understand options for attempting to get insurance to cover his mitochondrial cocktail of medications..mostly supportive vitamins/ enzymes however they are very very expensive and we just realized the $200 boxes we ordered that we thought would cover 1 month actually only cover 4 days! I lost it a little bit when I made this discovery while reading through the treatment plan. We are praying about it and hopefully we can get insurance to cover it once we have a new policy number..that is the other big prayer..please let the insurance approve and send the policy number..equipement company called me today..With all the equipment Sam requires, we absolutely can not have issues for long on this front.
On a positive note, since receiving all feeds in a more broken down formula placed right into the intestines (skipping the stomach)Sam has had about 1 BM per day and is tolerating feeds well. His system seems to be happier but is it because in general he is at best health or did switching to the GJ help.. don't know. Sammy's mood was also great. He was upbeat and social today and I was able to place him into a seated position although the arms were holding his body like kick stands. At least this held for a few seconds and he seemed to want to stabilize. I tried very hard today to get him to do more with tummy time and try to pull arms up and under to push himself up but that is still a tough task for him. He is making lots of new sounds which it had been weeks and maybe more since he had tried to do that. When he turns a corner to feeling better and having lots of fluid and food in his system, he makes more progress. I have to be patient and give him time. I know he will get to each of those milestones as his body allows him the strength. Tomorrow will be a big day for him so I am glad he is resting easy tonight. Send up a prayer if you read this before our flight at noon tomorrow and the appt at 10 am on Monday...need an easy flight and a productive optimistic meeting. Thank you to all of those praying for Samuel and our family.. this may be a valley in the topography of life but we are moving along and looking for hills ahead. :)
amanda
Sam and I are leaving in the morning with the nurse on an angel flight bound for Atlanta for a few days. It is a tiny 4 seater (mooney?)with strict weight requirements so Jason can't go as they are barely letting me and the tiny nurse go. Sam just can't take strain of a long drive so this is best option. I am so thankful for this nurse as I am not sure I could do this one alone. She offered to go along out of the kindness of her heart. (God sends us angels..) The nursing company can't pay her as it is across state lines and we can't pay her for conflict contract issues. This is a followup meeting with the mitochondrial disease expert's nurse who will go over in detail the report findings and treatments/ managment plan as well as answering questions etc. I am a little worried about what she will say about what to expect..do most kids with his level of dysfunction do well over time or does this have more of a progressive outlook. I need to have a more solid basis for the probable origin of his condition. It is listed as "probable Mitochondrial disease" because not all the testing is complete or indicating clear origins of this disease as a primary or secondary dysfunction. They may never have a clear understanding of what has happened to put his metabolic biorhythems into this malfunctioning state. I need to know how to maximize his health and optimize the cell's production of the energy his body needs. They don't have any info since October on Sam's case so I want to know how the GI down turn plays into all this as it is the most recent change in his condition. I also need to understand options for attempting to get insurance to cover his mitochondrial cocktail of medications..mostly supportive vitamins/ enzymes however they are very very expensive and we just realized the $200 boxes we ordered that we thought would cover 1 month actually only cover 4 days! I lost it a little bit when I made this discovery while reading through the treatment plan. We are praying about it and hopefully we can get insurance to cover it once we have a new policy number..that is the other big prayer..please let the insurance approve and send the policy number..equipement company called me today..With all the equipment Sam requires, we absolutely can not have issues for long on this front.
On a positive note, since receiving all feeds in a more broken down formula placed right into the intestines (skipping the stomach)Sam has had about 1 BM per day and is tolerating feeds well. His system seems to be happier but is it because in general he is at best health or did switching to the GJ help.. don't know. Sammy's mood was also great. He was upbeat and social today and I was able to place him into a seated position although the arms were holding his body like kick stands. At least this held for a few seconds and he seemed to want to stabilize. I tried very hard today to get him to do more with tummy time and try to pull arms up and under to push himself up but that is still a tough task for him. He is making lots of new sounds which it had been weeks and maybe more since he had tried to do that. When he turns a corner to feeling better and having lots of fluid and food in his system, he makes more progress. I have to be patient and give him time. I know he will get to each of those milestones as his body allows him the strength. Tomorrow will be a big day for him so I am glad he is resting easy tonight. Send up a prayer if you read this before our flight at noon tomorrow and the appt at 10 am on Monday...need an easy flight and a productive optimistic meeting. Thank you to all of those praying for Samuel and our family.. this may be a valley in the topography of life but we are moving along and looking for hills ahead. :)
amanda
Wednesday, January 5, 2011
Do we need to keep him on a charger..
There is this silly rendition of the Beatles song that the girls love to sing in the car on our way home. They like to sing it when we round the corner towards our house and will fuss at me till I start them on the tune. It is called Two of Us..and starts out: Two of us sunday driving..(then a bunch of lines we only halfway know) and then there is the chorus:
On our way home
We're on our way home
We're on our way home
We're going hooooome....
This tune has been running through my head all day long. Samuel is in great shape today! Peak performance..back up to baseline.. fully recharged! I sometimes wonder if we could hook him to a recharger of some kind would be be able to keep those batteries running! Seriously.. is the IV fluids with dextrose the key to keeping his charged?
Sam is definitely ready to get back to his sisters. Once home, we just need to keep him healthy and hope we get lucky and make it a little longer this time. 9 hospitalizations in 9 months make me leary of setting any specific goals but I have hope as at least we now have a way to feed him when the tummy shuts down, but I know the intestinal tract itself could be part of our issue and I don't think he is up to baseline due to our new way of tube feeding. I think that the TPN and the fluids and the oxygen and the rest all helped to get him over the hump. But for now I am praising the Lord for this turn of health and am praying for more time to enjoy this state. I now know we will not take ANY down-turn for granted. We WILL head off any and all medical downturns with vigilant care about illness exposure and or germies and or fevers or anything that will stress his little system.. vaccines are still on the table but I am scaredy cat of them right now.
I had another kind visitor today. She was a good friend from High School and I literally have not seen her in like 15 years..did I say that..wow sounds strange as it felt like we fell right back into normal like it was 9th grad chem class. whew 15 years or more. Not even family and she treked over here while in town for a meeting. How can I say how much the love of friends and their prayers has meant to our family? She stayed so long with us..I should not have let her stay so long but it was so nice to see her again. Her daughter was diagnosed with a brain tumor at the age of 3 and had a brain surgery to remove it and then 20 months of chemo..so scarey for their family. What a strong fighter she is and an example to other children of her perseverance and strangth. She is doing well now but I will keep her in our thoughts and prayers too. God sends angels among us I tell you..to show us how strong we really can be if we trust him to give us the tools. Hearing from her experience inspires me. I know Jesus has walked with her family and they seem to have really grown from their experience.
I will leave this post with the story of Hannah and her son, Samuel. This is the story for which we named the son we long anticipated and prayed for. Today I talked with my friend about this and we talked about the two aspects of the story from the Book of 1 Samuel explaining the meaning of Samuel's name. It means "asked of God" or "heard by God" or in some versions "I am God". I chose this name because like Hannah, I had asked God to bless us with a son. I was not like Hannah in that my womb was not closed to having children and had already been twice blessed. I guess I also was not promising to give up this son to the service of the Lord as a priest as she did, although in a way.. we all hope our son's will be God's servants.
Jason and I had long felt our family would be "complete" with a third child..a son, if the Lord felt it was right. It seems selfish to ask for more when we have been blessed with two beautiful and most beloved daughters but like Hannah I felt there was something still missing and i had more love to give. I am sure other moms could relate to that feeling. Hannah's husband said to her, "Don't I mean more to you than 10 sons?" Wow, what a guy thing to say, right?..he just did not understand. She kept her promise to God when he answered her prayer of a baby boy. She called her son Samuel, because I asked the Lord for him. She sent her son to be a priest Under Eli after she had weaned him. He was still very young when he was taken to serve the Lord. I can't imagine the level of this mother's sacrifice but I can imagine the love she had and how grateful she was for the pleasure of being his mother. She went on to have other children.
The other part of this story is that Samuel was considered a prophet because he was directly called by the Lord to serve him and the Lord shined on him for his loyal service. Samuel said, "Here I am, Lord".. and when I read that line I can't help thinking of the lyrics and music to "Here I am, Lord..It is I, Lord... I can hear you calling in the night.. I will go Lord if you need me. I will hold your people in my heart." Samuel not only was an answer to Hannah's prayers but was chosen by the Lord. Samuel served the Lord as his loyal servant. I think our Samuel was chosen too. He was an answer to our prayers and yes, a blessing to our family but his worth and purpose are far greater and will serve the Lord in a much greater way through his life. His sacrifices are not in vain.
1 Samuel 1 (New International Version, ©2010)
1 Samuel 1
The Birth of Samuel
1 There was a certain man from Ramathaim, a Zuphite[a] from the hill country of Ephraim, whose name was Elkanah son of Jeroham, the son of Elihu, the son of Tohu, the son of Zuph, an Ephraimite. 2 He had two wives; one was called Hannah and the other Peninnah. Peninnah had children, but Hannah had none.
3 Year after year this man went up from his town to worship and sacrifice to the LORD Almighty at Shiloh, where Hophni and Phinehas, the two sons of Eli, were priests of the LORD. 4 Whenever the day came for Elkanah to sacrifice, he would give portions of the meat to his wife Peninnah and to all her sons and daughters. 5 But to Hannah he gave a double portion because he loved her, and the LORD had closed her womb. 6 Because the LORD had closed Hannah’s womb, her rival kept provoking her in order to irritate her. 7 This went on year after year. Whenever Hannah went up to the house of the LORD, her rival provoked her till she wept and would not eat. 8 Her husband Elkanah would say to her, “Hannah, why are you weeping? Why don’t you eat? Why are you downhearted? Don’t I mean more to you than ten sons?”
9 Once when they had finished eating and drinking in Shiloh, Hannah stood up. Now Eli the priest was sitting on his chair by the doorpost of the LORD’s house. 10 In her deep anguish Hannah prayed to the LORD, weeping bitterly. 11 And she made a vow, saying, “LORD Almighty, if you will only look on your servant’s misery and remember me, and not forget your servant but give her a son, then I will give him to the LORD for all the days of his life, and no razor will ever be used on his head.”
12 As she kept on praying to the LORD, Eli observed her mouth. 13 Hannah was praying in her heart, and her lips were moving but her voice was not heard. Eli thought she was drunk 14 and said to her, “How long are you going to stay drunk? Put away your wine.”
15 “Not so, my lord,” Hannah replied, “I am a woman who is deeply troubled. I have not been drinking wine or beer; I was pouring out my soul to the LORD. 16 Do not take your servant for a wicked woman; I have been praying here out of my great anguish and grief.”
17 Eli answered, “Go in peace, and may the God of Israel grant you what you have asked of him.”
18 She said, “May your servant find favor in your eyes.” Then she went her way and ate something, and her face was no longer downcast.
19 Early the next morning they arose and worshiped before the LORD and then went back to their home at Ramah. Elkanah made love to his wife Hannah, and the LORD remembered her. 20 So in the course of time Hannah became pregnant and gave birth to a son. She named him Samuel,[b] saying, “Because I asked the LORD for him.”
Hannah Dedicates Samuel
21 When her husband Elkanah went up with all his family to offer the annual sacrifice to the LORD and to fulfill his vow, 22 Hannah did not go. She said to her husband, “After the boy is weaned, I will take him and present him before the LORD, and he will live there always.”[c]
23 “Do what seems best to you,” her husband Elkanah told her. “Stay here until you have weaned him; only may the LORD make good his[d] word.” So the woman stayed at home and nursed her son until she had weaned him.
24 After he was weaned, she took the boy with her, young as he was, along with a three-year-old bull,[e] an ephah[f] of flour and a skin of wine, and brought him to the house of the LORD at Shiloh. 25 When the bull had been sacrificed, they brought the boy to Eli, 26 and she said to him, “Pardon me, my lord. As surely as you live, I am the woman who stood here beside you praying to the LORD. 27 I prayed for this child, and the LORD has granted me what I asked of him. 28 So now I give him to the LORD. For his whole life he will be given over to the LORD.” And he worshiped the LORD there.
On our way home
We're on our way home
We're on our way home
We're going hooooome....
This tune has been running through my head all day long. Samuel is in great shape today! Peak performance..back up to baseline.. fully recharged! I sometimes wonder if we could hook him to a recharger of some kind would be be able to keep those batteries running! Seriously.. is the IV fluids with dextrose the key to keeping his charged?
Sam is definitely ready to get back to his sisters. Once home, we just need to keep him healthy and hope we get lucky and make it a little longer this time. 9 hospitalizations in 9 months make me leary of setting any specific goals but I have hope as at least we now have a way to feed him when the tummy shuts down, but I know the intestinal tract itself could be part of our issue and I don't think he is up to baseline due to our new way of tube feeding. I think that the TPN and the fluids and the oxygen and the rest all helped to get him over the hump. But for now I am praising the Lord for this turn of health and am praying for more time to enjoy this state. I now know we will not take ANY down-turn for granted. We WILL head off any and all medical downturns with vigilant care about illness exposure and or germies and or fevers or anything that will stress his little system.. vaccines are still on the table but I am scaredy cat of them right now.
I had another kind visitor today. She was a good friend from High School and I literally have not seen her in like 15 years..did I say that..wow sounds strange as it felt like we fell right back into normal like it was 9th grad chem class. whew 15 years or more. Not even family and she treked over here while in town for a meeting. How can I say how much the love of friends and their prayers has meant to our family? She stayed so long with us..I should not have let her stay so long but it was so nice to see her again. Her daughter was diagnosed with a brain tumor at the age of 3 and had a brain surgery to remove it and then 20 months of chemo..so scarey for their family. What a strong fighter she is and an example to other children of her perseverance and strangth. She is doing well now but I will keep her in our thoughts and prayers too. God sends angels among us I tell you..to show us how strong we really can be if we trust him to give us the tools. Hearing from her experience inspires me. I know Jesus has walked with her family and they seem to have really grown from their experience.
I will leave this post with the story of Hannah and her son, Samuel. This is the story for which we named the son we long anticipated and prayed for. Today I talked with my friend about this and we talked about the two aspects of the story from the Book of 1 Samuel explaining the meaning of Samuel's name. It means "asked of God" or "heard by God" or in some versions "I am God". I chose this name because like Hannah, I had asked God to bless us with a son. I was not like Hannah in that my womb was not closed to having children and had already been twice blessed. I guess I also was not promising to give up this son to the service of the Lord as a priest as she did, although in a way.. we all hope our son's will be God's servants.
Jason and I had long felt our family would be "complete" with a third child..a son, if the Lord felt it was right. It seems selfish to ask for more when we have been blessed with two beautiful and most beloved daughters but like Hannah I felt there was something still missing and i had more love to give. I am sure other moms could relate to that feeling. Hannah's husband said to her, "Don't I mean more to you than 10 sons?" Wow, what a guy thing to say, right?..he just did not understand. She kept her promise to God when he answered her prayer of a baby boy. She called her son Samuel, because I asked the Lord for him. She sent her son to be a priest Under Eli after she had weaned him. He was still very young when he was taken to serve the Lord. I can't imagine the level of this mother's sacrifice but I can imagine the love she had and how grateful she was for the pleasure of being his mother. She went on to have other children.
The other part of this story is that Samuel was considered a prophet because he was directly called by the Lord to serve him and the Lord shined on him for his loyal service. Samuel said, "Here I am, Lord".. and when I read that line I can't help thinking of the lyrics and music to "Here I am, Lord..It is I, Lord... I can hear you calling in the night.. I will go Lord if you need me. I will hold your people in my heart." Samuel not only was an answer to Hannah's prayers but was chosen by the Lord. Samuel served the Lord as his loyal servant. I think our Samuel was chosen too. He was an answer to our prayers and yes, a blessing to our family but his worth and purpose are far greater and will serve the Lord in a much greater way through his life. His sacrifices are not in vain.
1 Samuel 1 (New International Version, ©2010)
1 Samuel 1
The Birth of Samuel
1 There was a certain man from Ramathaim, a Zuphite[a] from the hill country of Ephraim, whose name was Elkanah son of Jeroham, the son of Elihu, the son of Tohu, the son of Zuph, an Ephraimite. 2 He had two wives; one was called Hannah and the other Peninnah. Peninnah had children, but Hannah had none.
3 Year after year this man went up from his town to worship and sacrifice to the LORD Almighty at Shiloh, where Hophni and Phinehas, the two sons of Eli, were priests of the LORD. 4 Whenever the day came for Elkanah to sacrifice, he would give portions of the meat to his wife Peninnah and to all her sons and daughters. 5 But to Hannah he gave a double portion because he loved her, and the LORD had closed her womb. 6 Because the LORD had closed Hannah’s womb, her rival kept provoking her in order to irritate her. 7 This went on year after year. Whenever Hannah went up to the house of the LORD, her rival provoked her till she wept and would not eat. 8 Her husband Elkanah would say to her, “Hannah, why are you weeping? Why don’t you eat? Why are you downhearted? Don’t I mean more to you than ten sons?”
9 Once when they had finished eating and drinking in Shiloh, Hannah stood up. Now Eli the priest was sitting on his chair by the doorpost of the LORD’s house. 10 In her deep anguish Hannah prayed to the LORD, weeping bitterly. 11 And she made a vow, saying, “LORD Almighty, if you will only look on your servant’s misery and remember me, and not forget your servant but give her a son, then I will give him to the LORD for all the days of his life, and no razor will ever be used on his head.”
12 As she kept on praying to the LORD, Eli observed her mouth. 13 Hannah was praying in her heart, and her lips were moving but her voice was not heard. Eli thought she was drunk 14 and said to her, “How long are you going to stay drunk? Put away your wine.”
15 “Not so, my lord,” Hannah replied, “I am a woman who is deeply troubled. I have not been drinking wine or beer; I was pouring out my soul to the LORD. 16 Do not take your servant for a wicked woman; I have been praying here out of my great anguish and grief.”
17 Eli answered, “Go in peace, and may the God of Israel grant you what you have asked of him.”
18 She said, “May your servant find favor in your eyes.” Then she went her way and ate something, and her face was no longer downcast.
19 Early the next morning they arose and worshiped before the LORD and then went back to their home at Ramah. Elkanah made love to his wife Hannah, and the LORD remembered her. 20 So in the course of time Hannah became pregnant and gave birth to a son. She named him Samuel,[b] saying, “Because I asked the LORD for him.”
Hannah Dedicates Samuel
21 When her husband Elkanah went up with all his family to offer the annual sacrifice to the LORD and to fulfill his vow, 22 Hannah did not go. She said to her husband, “After the boy is weaned, I will take him and present him before the LORD, and he will live there always.”[c]
23 “Do what seems best to you,” her husband Elkanah told her. “Stay here until you have weaned him; only may the LORD make good his[d] word.” So the woman stayed at home and nursed her son until she had weaned him.
24 After he was weaned, she took the boy with her, young as he was, along with a three-year-old bull,[e] an ephah[f] of flour and a skin of wine, and brought him to the house of the LORD at Shiloh. 25 When the bull had been sacrificed, they brought the boy to Eli, 26 and she said to him, “Pardon me, my lord. As surely as you live, I am the woman who stood here beside you praying to the LORD. 27 I prayed for this child, and the LORD has granted me what I asked of him. 28 So now I give him to the LORD. For his whole life he will be given over to the LORD.” And he worshiped the LORD there.
Tuesday, January 4, 2011
wowsa.. I was an emotional momma today
I had a bit of a day really.. lots of up and down of emotions. For about 2 hours I was a weepy mess and then started back up for air. It was while sitting in the waiting room for Sam to come out of the OR from his JG tube upgrade procedure that I started to feel.. done in. By far this was one of the simpliest procedures yet.. except that every time they do anything on him they have to put him under General Ansthesia and intubate and it scares me a bit that he won't wake up or will have his more serious episodes or something. I am always alone in the waiting rooms as Jason can never be here due to work etc.. and these things are never scheduled on weekends when there might be some chance of him being with me.
I think I was mostly upset because they had told me he would get to avoid the anesthesia and then we get down there and they said..no way. He had to be fully under as he can't handle the gas and needs the MH precautions and has major problems with the LMA tube. So it had to be the full deal. Anesthesia is always the big issue.. not the surgeries or procedures themselves..like the fundoplication surgery where they wrapped his tummy around his espophagus.. scarey image but the surgeon said our biggist issues were airway concerns and heart rate and anesthesia. Then after that surgery ended in major major episodes and him being coded several times, and we realized it was the intubation making him far worse, I think I got gun shy of the anesthesia and intubation. So they say he has to have what they call TIVA (total IV anesthesia) due to his issues. He did great though this time and it took about an hour and a half.. nothing compared to the 16 hours I would sit for mom's surgeries in the agony of endless worry.
One procedure at a time is what I keep telling myself but after having to go into such a detailed history for the umpteenth time with the anesthesia and radiology people, I was remembering too much from all we have experienced and then thinking far too much about the future and all of a sudden I was overwhelmed and a blithering mess. Most of the time I think I am pretty good at just focusing on the situation at hand and staying in control of the emotional stuff..Jason is far better at it than I. I try to leave my weak times to when I am in prayer because God understands. I am not sure the others in that waiting room could understand why this woman in the corner who has had like no sleep and looks like she was run over by a truck this week is sitting there tearing up every time she takes a sip of her coffee. In saying my prayers for Sammy, I found some peace and calm and before I knew it they were there to bring me back to see him.
My son is such a little fighter. When I got to his side in recovery, he was purring like a cat and waking up in such a vulnerable way. I love that he vigilantly seeks out my eyes and seems to plead to me in only a language I understand. In a few little nods and blinks, he asks me to hold him unlike any other baby... no arms flinging out or howling mommees..just a locked gaze and coo meant just for me. The nurses always tell me over and over.."He is sooo good. I can't believe he never screams or even crys out." He just purrs and moans softly to me. That is his way. He knows by now that crying out and making a big fit of himself will only steal precious energy. I felt alot better seeing him doing better and the rest of the day has been an improvement except for some tummy aches. He is wanting to go home, as am I.
As for the procedure, they had not only fished around in his insides with a metal wire to thread down the intestines but had also dilated (substitute this nice medical word for stretched out bluntly) his stoma (the hole leading from the outer tummy to the inner wall of his stomach.. why did he have to be put through that pain? Because they did not happen to have his size in stock. His size of gj- tube that is..I was NOT happy about this news. He is a 14 french and they only had an 18 handy..so they made a 14 hole fit their 18 tube. I was also NOT happy when I found out this hospital does not carry the nice button version of the GJ tube like his old G tube which was so easy to conceal and "low profile" as it is so named that it does not interfere so much with movement and tummy time etc..The new GJ tube is huge and similar to the first starter G tube we had way back in may for the first 6 weeks. It has a long tube attached that can't be detached and is impossible for putting meds into and is FAR easier for Samuel to play grabbies with which could lead to him pulling it out, requiring a repeat of this OR procedure. It is not like the G tube we had where we can put it back in ourselves.
So for now..Sam is supposed to be sleeping but is instead peacefully blabbering in his crib sweet baby sounds and blowing sweet baby bubbles while I type this and hopefully he is ready to get some shut eye. I a, really hoping we get to go home soon.. hopefully tomorrow.
I think I was mostly upset because they had told me he would get to avoid the anesthesia and then we get down there and they said..no way. He had to be fully under as he can't handle the gas and needs the MH precautions and has major problems with the LMA tube. So it had to be the full deal. Anesthesia is always the big issue.. not the surgeries or procedures themselves..like the fundoplication surgery where they wrapped his tummy around his espophagus.. scarey image but the surgeon said our biggist issues were airway concerns and heart rate and anesthesia. Then after that surgery ended in major major episodes and him being coded several times, and we realized it was the intubation making him far worse, I think I got gun shy of the anesthesia and intubation. So they say he has to have what they call TIVA (total IV anesthesia) due to his issues. He did great though this time and it took about an hour and a half.. nothing compared to the 16 hours I would sit for mom's surgeries in the agony of endless worry.
One procedure at a time is what I keep telling myself but after having to go into such a detailed history for the umpteenth time with the anesthesia and radiology people, I was remembering too much from all we have experienced and then thinking far too much about the future and all of a sudden I was overwhelmed and a blithering mess. Most of the time I think I am pretty good at just focusing on the situation at hand and staying in control of the emotional stuff..Jason is far better at it than I. I try to leave my weak times to when I am in prayer because God understands. I am not sure the others in that waiting room could understand why this woman in the corner who has had like no sleep and looks like she was run over by a truck this week is sitting there tearing up every time she takes a sip of her coffee. In saying my prayers for Sammy, I found some peace and calm and before I knew it they were there to bring me back to see him.
My son is such a little fighter. When I got to his side in recovery, he was purring like a cat and waking up in such a vulnerable way. I love that he vigilantly seeks out my eyes and seems to plead to me in only a language I understand. In a few little nods and blinks, he asks me to hold him unlike any other baby... no arms flinging out or howling mommees..just a locked gaze and coo meant just for me. The nurses always tell me over and over.."He is sooo good. I can't believe he never screams or even crys out." He just purrs and moans softly to me. That is his way. He knows by now that crying out and making a big fit of himself will only steal precious energy. I felt alot better seeing him doing better and the rest of the day has been an improvement except for some tummy aches. He is wanting to go home, as am I.
As for the procedure, they had not only fished around in his insides with a metal wire to thread down the intestines but had also dilated (substitute this nice medical word for stretched out bluntly) his stoma (the hole leading from the outer tummy to the inner wall of his stomach.. why did he have to be put through that pain? Because they did not happen to have his size in stock. His size of gj- tube that is..I was NOT happy about this news. He is a 14 french and they only had an 18 handy..so they made a 14 hole fit their 18 tube. I was also NOT happy when I found out this hospital does not carry the nice button version of the GJ tube like his old G tube which was so easy to conceal and "low profile" as it is so named that it does not interfere so much with movement and tummy time etc..The new GJ tube is huge and similar to the first starter G tube we had way back in may for the first 6 weeks. It has a long tube attached that can't be detached and is impossible for putting meds into and is FAR easier for Samuel to play grabbies with which could lead to him pulling it out, requiring a repeat of this OR procedure. It is not like the G tube we had where we can put it back in ourselves.
So for now..Sam is supposed to be sleeping but is instead peacefully blabbering in his crib sweet baby sounds and blowing sweet baby bubbles while I type this and hopefully he is ready to get some shut eye. I a, really hoping we get to go home soon.. hopefully tomorrow.
Missing Home..
Today was Jason's 32nd birthday and I could not be missing him more! Lately he has been carrying around the weight of the world on his shoulders.. trying to be both father and step-in mother to the girls once again. He does so well at both. They were all here this weekend but he and I hardly saw each other between taking turns watching over Sam and the girls. I was so thankful for a spot at the Ron McD house for those couple days because we did share a few meals and the girls got to see us all together except for Samuel.
Samuel pulled his ND tube out once again today shortly after we moved over to the floor from the PICU. This is always an ordeal and x rays have to be done to make sure it is in the right place. This time it was not so they had to do it twice. This child could light up a dark room with all the radiation he has had in his little life.
I was blessed with a few sweet visitors praying for our little man today. I know they probably think I look like I was run over earlier in the day but getting no sleep can do a number on you in here. They were a huge pick-up for my mood and if they are reading I hope they know how thankful I am for their friendship and prayers.
I really am trying hard to stay upbeat and not get bent out of joint over the steps back we seem to be taking. I need to keep rekindling my hope and not get so wrapped up in the future prognosis of things. Sam is doing really well on many levels today and those are the celebrations I have to keep lifting up. He has been very sweet today and was almost laughing as I rolled him in his baby barrito style swaddling (intended to stop the grabbing of the tubes). He had been mad because they put splints on his arms and wrapped him so tight to avoid another tube pulling incident. He found it funny when I added in the whooshing and buzzing sound effects as we rolled and worked on some PT moves.. I think he is just tired of laying in bed with nothing to do. So the restlessness is a good change from the little boy I brought in here gasping for every breath and struggling with GI pain. Dare I hope that after the GJ is placed we might get to leave?
But I am left scared of what taking him home will mean this time as it is no little deal taking him home with the picc line..he is a baby and will eventually get those grabby hands around this line..and with his history of not clotting well I fear him pulling it out and bleeding out or some scarey scenerio. They said we might be able to come back for the mediport to be placed outpatient but I don't know when I want to put him through yet another procedure. I keep thinking about how now the GJ tube will require continuous feeds most all the time instead of the part time or bolus gtube feeds that he gets currently. The intestines can't handle full feeds in short periods. But what I am left wondering is if our tummy was so slow digesting the food , will the intestines be any faster? I am not 100% sure this is going to be a quick fix..for now I have to pray this just buys us more options.
The last part of the day I had an opportunity to speak with the mother of a child with a rare disease known as canavans. It was wonderful to speak with her about how she approached her son's complex medical issues and concerns of insurance and coverage for home nursing. It seems like she had to battle the insurance companies before she finally got the help she needed for him. Her son has defied the odds and is doing well in his twenties when they never thought he would live past the toddler years. She seemed to hold onto to her faith and hope and that is what I fully intend to do for Samuel.
Here is a pic of sofia driving her sister wild..she is always working hard to drive her big sister nuts.
Lastly..my mom had her birthday this weekend and she has been away for about a month visiting my sister and her 4 munchkins (while hubby is still deployed) down in Tampa. They had a great Christmas and New Years. I miss her very much. It is difficult since other than the serious fall out of loosing portions of her face to the cancer and then one eye, our biggest hurdle is communication as she is now deaf. She handles this quite well but I hate not being able to call her and and just chat. I am adding some Christmas pics of the girls and home below as I am missing them and home so much..
Saturday, January 1, 2011
1.1.11
Happy New Years.. and Happy Birthday to Nana and Grandpa Bob. We are full of hope for a better year in 2011. I am listening for any directions God wants to whisper in my ear or heart.. I am giving it all up to Him cause I know when I have given all of my earthly skill and am still coming up short.
Friday morning Samuel failed his gastric emptying test, taking over 120 minutes to get 45 mls (less than 2 ozs and 6 ozs is a normal meal amount) from the stomach to the intestines. This is way too long a period so they have decided to bump his food past the stomach to the intestines by ND tube but what will happen there with it is anyone's guess. Getting the tube down was not an easy task as he is rather unable to protect his airway well and freaks out when anything is put in there. So under light sedation they finally got it in only to have him yank it out later today. It is irritating for him to do this as he then has to get another x ray to confirm it is placed properly. SO now it is back in place and he is getting feeds again at a slow rate. I guess we will know soon if GJ is needed to replace his gtube for long term use.
My girls were here for the weekend and so Jason spent most of the time being the one with Sam while I got to spend time with them at the ron mcd house. It was so nice to see them but is also always a bit strained too. The girls can feel our tension, the worry and are usually seeing that we are overly distracted. This opens up time for them to punch buttons and test boundaries. The fussing with each other was driving me up the wall but with girls as close in age as they are, it would probably be happening whether or not their brother was so medically complex and soaking up all the attention for the past year. It also seems to work the other way too..when things are bad with Sammy, they get away with more out of pure distraction and then they start thinking they get their own way and can trad on the rules. So we have a battle of wills and lots of time outs and hugs and I never know what helps most..the hugs or the firm discipline.
They love Sam so much and I am thankful they have never resented him in any way. It makes me want to break down and cry when they ask me: "Mom, why can't we take Sam home today? Why can't the hospital make Sam all better? Why do you and Sam have to leave us?" It hurts BIG time but I know they also are growing from all this mess and are learning about love and how not everyone is like them. I expect they will have immense empathy for the sick and disabled. Right now I just wish they had more of it for each other.:)
I am not sure what the plan is for this week.. I really thought it would just be a few days here and home again but I have no idea why I thought that as he has never had a hospitalization under a week before. He is actually doing alot better on a respiratory level, breathing on his own and at good sat levels other than the rare times his heart takes a nose dive and drags the o2 sats down with it. But none tonight so far..fingers crossed. He enjoyed two rousing readings of Dr Seuss earlier and the nurse tonight from memory recanted her own favorite Dr Seuss. I will say it over and over.. our nurses here are always so loving in their way of caring for our Samuel. Other than rare occasions, we have also always loved his physicians and are blessed by their efforts to find solutions. Unfortunately, we are just learning that his set of issues are not receptive to the usual quick fixes. He likes to do things his own way.
Friday morning Samuel failed his gastric emptying test, taking over 120 minutes to get 45 mls (less than 2 ozs and 6 ozs is a normal meal amount) from the stomach to the intestines. This is way too long a period so they have decided to bump his food past the stomach to the intestines by ND tube but what will happen there with it is anyone's guess. Getting the tube down was not an easy task as he is rather unable to protect his airway well and freaks out when anything is put in there. So under light sedation they finally got it in only to have him yank it out later today. It is irritating for him to do this as he then has to get another x ray to confirm it is placed properly. SO now it is back in place and he is getting feeds again at a slow rate. I guess we will know soon if GJ is needed to replace his gtube for long term use.
My girls were here for the weekend and so Jason spent most of the time being the one with Sam while I got to spend time with them at the ron mcd house. It was so nice to see them but is also always a bit strained too. The girls can feel our tension, the worry and are usually seeing that we are overly distracted. This opens up time for them to punch buttons and test boundaries. The fussing with each other was driving me up the wall but with girls as close in age as they are, it would probably be happening whether or not their brother was so medically complex and soaking up all the attention for the past year. It also seems to work the other way too..when things are bad with Sammy, they get away with more out of pure distraction and then they start thinking they get their own way and can trad on the rules. So we have a battle of wills and lots of time outs and hugs and I never know what helps most..the hugs or the firm discipline.
They love Sam so much and I am thankful they have never resented him in any way. It makes me want to break down and cry when they ask me: "Mom, why can't we take Sam home today? Why can't the hospital make Sam all better? Why do you and Sam have to leave us?" It hurts BIG time but I know they also are growing from all this mess and are learning about love and how not everyone is like them. I expect they will have immense empathy for the sick and disabled. Right now I just wish they had more of it for each other.:)
I am not sure what the plan is for this week.. I really thought it would just be a few days here and home again but I have no idea why I thought that as he has never had a hospitalization under a week before. He is actually doing alot better on a respiratory level, breathing on his own and at good sat levels other than the rare times his heart takes a nose dive and drags the o2 sats down with it. But none tonight so far..fingers crossed. He enjoyed two rousing readings of Dr Seuss earlier and the nurse tonight from memory recanted her own favorite Dr Seuss. I will say it over and over.. our nurses here are always so loving in their way of caring for our Samuel. Other than rare occasions, we have also always loved his physicians and are blessed by their efforts to find solutions. Unfortunately, we are just learning that his set of issues are not receptive to the usual quick fixes. He likes to do things his own way.
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