Showing posts with label Enoch. Show all posts
Showing posts with label Enoch. Show all posts
14 December 2011
Happy Birthday, Enoch!!!
A few pictures of the little Gaffers we love so much!! We thank God he gave us you, Enoch Jonathan Liddell Shupe!
03 October 2011
Just for Fun
Mom: I just got it at the Mom-2-Mom Sale. You will wear it at least once!
14 June 2011
Happy 6 months, Enoch!
We love this smiley lil' boy so much!! Here's a few facts about Enoch Jonathan Liddell Shupe!
He loves being outside. His feet kick and twirl when Daddy comes home. He laughs mostly for his big brother. A-boof is one of his curent happy little words. He wakes up happy. Cabin intrigues him. God's blessed us with many answered prayers regarding his growth (and life!). Red is a favorite color and we see a little of it when the sun shines on his hair. He has Daddy's eyes. Sitting up is going pretty well. He tilts his head sideways with his shy grin. He's absolutely kissable.
28 December 2010
God's Kindness to Us, A Birth Story
Seven days ago God allowed us to bring home from the hospital a precious gift. One little boy, warm snuggly ball in our arms, alive and breathing and feeding and soft and tender and free from the grasp of a devastating disease.
God hid us in the shadow of His wings when we could not see ahead, felt as though we could barely breathe, longed to feel Him near. His shadow carried us through. His Word around us, prayers encircling us. He was enough. He is enough. In His shadow we could not see beyond and we needed not. Oh, my worries and anxious heart pawed to get out, time and again. But the more we listened to His word, were uplifted in prayer, the more surrender we felt. It is said Eric Liddell's last words before dying in a Chinese internment camp were, "It's complete surrender." Enoch Jonathan Liddell Shupe . . . we had only decided on his middle name seven days earlier.
Seven days earlier, on December 14, our baby was born. A day we will never forget...want never to forget...need never to forget and need to proclaim!
And so we with feeble and humble words long to share with all, the kindness of God to us this Christmas season. We celebrate Christ first coming to us, and we celebrate even more Christ now with us. God dwells with us, the lowly, the uncertain, the fearful, the doubting, the proud, the hurting. Oh blessed thought, He leadeth me . . . even me.
Last Monday - the snow drifts thick in our yard, the wind howls, and squalls of white surround our house throughout the day. My phone rings mid-morning. My beloved is stuck in the middle of the road with a four-wheel drive pick-up with mud tires waiting for a dear brother to come pull him out. "Seriously, you should see this drift. It must be three hundred feet long down the road."
My mind cannot even picture this. Perhaps it's clouded, grateful we made it through the night still with power. Grateful baby didn't come Sunday night, my due date. The weather horrible, the timing just not seeming right.
"Not sure if they're contractions or not, but I've been feeling some tightness in my back and front and a little crampy this morning," I respond to Jonathan. I ask what time he might be home for lunch, and he's not sure he'll be able to get home. Brrr, sweet husband! He works so hard.
Abraham and I carry on with our day, cleaning house, washing screens...wondering, "could I be nesting? Is this really it?"
By evening I'm tiptoe-ing across house and rocking back and forth at counter and trying doing Bradley method pelvic rocks through these moments of tightness. I call Jonathan back. "Um, I think something really might be going on here..."
"Huh, really?"
I'm still too uncertain to call it out, not wanting to tell my husband I'm in labor unless I'm really, really sure I am. I listen to the story of his day...
I also know the unsaid of his day, how this dairyman has been up since 0430 as usual. Today with just a small breakfast and no lunch. Later he tells me this was his hardest day of work in probably a couple of years. This man, my man, my coach for this whole thing called labor...could this really be happening? My heart sinks at how exhausted he must be. How is this ever going to work?
Between 8 and 9pm Abraham and I watch Uncle David plow out our driveway with the neighbor's huge loader. Thank you, Lord. I'm dancing around the counter every 3 minutes now and have been for quite awhile as Abraham waves outside. We call Daddy to see if maybe it's him in the loader? It's 2115 or 9:15pm and I tell him what my heart is fearing..."Um, I'm having a real hard time relaxing."
His response is brief, he sounds exhausted and still unsure when he'll get home. I try to pack up a few last minute things. I'm feeling like I can't do this.
Thirty minutes later J gets home. He looks at me and knows. I'm tearful. "Angela, you've got to relax."
I know this. It is one of the two key things our Bradley teacher worked on us with. Hadn't she said, "you guys need to be practicing relaxing every day..." We both know we've failed at this part of the preparation.
My fears spill out. "Jonathan you're so tired, how is this possibly going to work?"
Sweet husband rebukes this fear and replaces it with strength. He will be there for me and God will carry us through this. The joy of the Lord is our strength. He will not give us more than we can handle.
A quick shower, then Jonathan takes Abraham to bed while I try to take a shower to relax. I try a heating pad, laying down, abdominal breathing, walking, sitting...after about an hour I wake Jonathan up. "I need help, babe."
And oh the next hours. Pain. Yes. Intense. Oh yes. My coach? Awesome. God's peace? Surrounds us. My fears of Jonathan being too exhausted to coach me are completely gone.
We keep the house dimly lit. Contractions continue to be less than 3 minutes apart. We aren't timing them, they just are close together. I call close friends and ask them to pray. So blessed to know their care and response.
Jonathan tries a paint roller on my back, dry and fluffy of course:). It helps briefly. We try our relaxation techniques. Laying on my side is not working like it did during pregnancy! I try sitting back, and the pressure on my tailbone is tremendous. I thought something was supposed to be comfortable...oh dear.
Jonathan works patiently over and over again to help me let go during the contractions. Leaning onto him become one of my best labor positions.
Time goes by and I'm beginning to feel like I can't handle much more of the pain. He reminds me pain is good. Contractions bring the baby out. I sound silly but say whatever I can outloud. "I don't want to have an epidural. I want to see this baby. I want to have this baby naturally. I don't want to have a C-section."
Jonathan tells me later this is where I started saying crazy things to him:). For some reason saying it and having J reaffirm this is encouraging.
I pray over and over again for courage. And then for mercy. Oh the pain is so much. And when I think how could I do this for hours and hours more, I begin to feel sweaty and my legs tremor. Could this really be transition? Again, I'm afraid to say anything to Jonathan...to call it out. What if I'm wrong?
And then J hears me groan. I actually feel the urge to push. Secretly I am thrilled. I never felt this with Abraham. Jonathan is concerned. He asks me multiple times over the next few contractions, "Do you feel like you want to push or you have to push?" He remembers how I pushed without the urge with Abraham and wore out after a couple hours.
I honestly don't get it and logic has never been my strength. No answer from me for a few minutes until I finally say, "both!"
Jonathan takes a deep breath, "well I guess we're committed now." :) The normally 1 hour now 2 hour if passable drive to our hospital had been a question on our minds. We weren't sure how we'd even get there with the speed and intensity of my contractions and the snowstorm. We had prayed for direction and over and over God's peace surrounded us at home. Home and Jonathan delivering this little one felt absolutely right, a crazy long and uncertain drive to the hospital seemed out of the question.
And so after squatting and pushing through those early morning hours we were blessed to meet our sweet baby for the first time in his home, his Daddy telling me it's a boy, and his Mama scooping his precious body up into her arms. Words cannot describe what an amazing experience his birth was. Overwhelmingly we experienced God's kindness, mercy, direction and peace. Thank you friends who prayed. Over and over God answered prayers. . . from Abraham staying asleep through the delivery to the afterbirth coming 5 seconds after praying, after hours of waiting. We look back on the last two weeks and breathe deep, feeling His kindness and mercy in all that has passed over us.
God hid us in the shadow of His wings when we could not see ahead, felt as though we could barely breathe, longed to feel Him near. His shadow carried us through. His Word around us, prayers encircling us. He was enough. He is enough. In His shadow we could not see beyond and we needed not. Oh, my worries and anxious heart pawed to get out, time and again. But the more we listened to His word, were uplifted in prayer, the more surrender we felt. It is said Eric Liddell's last words before dying in a Chinese internment camp were, "It's complete surrender." Enoch Jonathan Liddell Shupe . . . we had only decided on his middle name seven days earlier.
Seven days earlier, on December 14, our baby was born. A day we will never forget...want never to forget...need never to forget and need to proclaim!
We will not hide them from their children,
but tell to the coming generation
the glorious deeds of the Lord, and his might,
and the wonders that he has done.
...that the next generation might know them,
the children yet unborn,
and arise and tell them to their children,
so that they should set their hope in God
and not forget the works of God,
but keep his commandments...
Psalm 78:4. 6-7
And so we with feeble and humble words long to share with all, the kindness of God to us this Christmas season. We celebrate Christ first coming to us, and we celebrate even more Christ now with us. God dwells with us, the lowly, the uncertain, the fearful, the doubting, the proud, the hurting. Oh blessed thought, He leadeth me . . . even me.
Last Monday - the snow drifts thick in our yard, the wind howls, and squalls of white surround our house throughout the day. My phone rings mid-morning. My beloved is stuck in the middle of the road with a four-wheel drive pick-up with mud tires waiting for a dear brother to come pull him out. "Seriously, you should see this drift. It must be three hundred feet long down the road."
My mind cannot even picture this. Perhaps it's clouded, grateful we made it through the night still with power. Grateful baby didn't come Sunday night, my due date. The weather horrible, the timing just not seeming right.
"Not sure if they're contractions or not, but I've been feeling some tightness in my back and front and a little crampy this morning," I respond to Jonathan. I ask what time he might be home for lunch, and he's not sure he'll be able to get home. Brrr, sweet husband! He works so hard.
Abraham and I carry on with our day, cleaning house, washing screens...wondering, "could I be nesting? Is this really it?"
By evening I'm tiptoe-ing across house and rocking back and forth at counter and trying doing Bradley method pelvic rocks through these moments of tightness. I call Jonathan back. "Um, I think something really might be going on here..."
"Huh, really?"
I'm still too uncertain to call it out, not wanting to tell my husband I'm in labor unless I'm really, really sure I am. I listen to the story of his day...
Stuck 3 times in the middle of roads with a 4-wheel drive pick-up
cattle out 3 times (once can be exhausting)
cattle found 1.5 miles down the road at one point
hours of running chasing cattle
wind and snow feeling like a continual facewash
hauling feed, a 45 minute-1 hour job has taken over 10 hours
came upon a car stuck in road 3 feet up on a snow bank
driving through snow alley next to the car so tight pick-up rubbed on both sides
three times snow up under hood, knocking fan belt off each time
I also know the unsaid of his day, how this dairyman has been up since 0430 as usual. Today with just a small breakfast and no lunch. Later he tells me this was his hardest day of work in probably a couple of years. This man, my man, my coach for this whole thing called labor...could this really be happening? My heart sinks at how exhausted he must be. How is this ever going to work?
Between 8 and 9pm Abraham and I watch Uncle David plow out our driveway with the neighbor's huge loader. Thank you, Lord. I'm dancing around the counter every 3 minutes now and have been for quite awhile as Abraham waves outside. We call Daddy to see if maybe it's him in the loader? It's 2115 or 9:15pm and I tell him what my heart is fearing..."Um, I'm having a real hard time relaxing."
His response is brief, he sounds exhausted and still unsure when he'll get home. I try to pack up a few last minute things. I'm feeling like I can't do this.
Thirty minutes later J gets home. He looks at me and knows. I'm tearful. "Angela, you've got to relax."
I know this. It is one of the two key things our Bradley teacher worked on us with. Hadn't she said, "you guys need to be practicing relaxing every day..." We both know we've failed at this part of the preparation.
My fears spill out. "Jonathan you're so tired, how is this possibly going to work?"
Sweet husband rebukes this fear and replaces it with strength. He will be there for me and God will carry us through this. The joy of the Lord is our strength. He will not give us more than we can handle.
A quick shower, then Jonathan takes Abraham to bed while I try to take a shower to relax. I try a heating pad, laying down, abdominal breathing, walking, sitting...after about an hour I wake Jonathan up. "I need help, babe."
And oh the next hours. Pain. Yes. Intense. Oh yes. My coach? Awesome. God's peace? Surrounds us. My fears of Jonathan being too exhausted to coach me are completely gone.
We keep the house dimly lit. Contractions continue to be less than 3 minutes apart. We aren't timing them, they just are close together. I call close friends and ask them to pray. So blessed to know their care and response.
Jonathan tries a paint roller on my back, dry and fluffy of course:). It helps briefly. We try our relaxation techniques. Laying on my side is not working like it did during pregnancy! I try sitting back, and the pressure on my tailbone is tremendous. I thought something was supposed to be comfortable...oh dear.
Jonathan works patiently over and over again to help me let go during the contractions. Leaning onto him become one of my best labor positions.
Time goes by and I'm beginning to feel like I can't handle much more of the pain. He reminds me pain is good. Contractions bring the baby out. I sound silly but say whatever I can outloud. "I don't want to have an epidural. I want to see this baby. I want to have this baby naturally. I don't want to have a C-section."
Jonathan tells me later this is where I started saying crazy things to him:). For some reason saying it and having J reaffirm this is encouraging.
I pray over and over again for courage. And then for mercy. Oh the pain is so much. And when I think how could I do this for hours and hours more, I begin to feel sweaty and my legs tremor. Could this really be transition? Again, I'm afraid to say anything to Jonathan...to call it out. What if I'm wrong?
And then J hears me groan. I actually feel the urge to push. Secretly I am thrilled. I never felt this with Abraham. Jonathan is concerned. He asks me multiple times over the next few contractions, "Do you feel like you want to push or you have to push?" He remembers how I pushed without the urge with Abraham and wore out after a couple hours.
I honestly don't get it and logic has never been my strength. No answer from me for a few minutes until I finally say, "both!"
Jonathan takes a deep breath, "well I guess we're committed now." :) The normally 1 hour now 2 hour if passable drive to our hospital had been a question on our minds. We weren't sure how we'd even get there with the speed and intensity of my contractions and the snowstorm. We had prayed for direction and over and over God's peace surrounded us at home. Home and Jonathan delivering this little one felt absolutely right, a crazy long and uncertain drive to the hospital seemed out of the question.
And so after squatting and pushing through those early morning hours we were blessed to meet our sweet baby for the first time in his home, his Daddy telling me it's a boy, and his Mama scooping his precious body up into her arms. Words cannot describe what an amazing experience his birth was. Overwhelmingly we experienced God's kindness, mercy, direction and peace. Thank you friends who prayed. Over and over God answered prayers. . . from Abraham staying asleep through the delivery to the afterbirth coming 5 seconds after praying, after hours of waiting. We look back on the last two weeks and breathe deep, feeling His kindness and mercy in all that has passed over us.
My man, my awesome coach, holding his new little boy
21 December 2010
Out of order
Monday 3:13 pm
My phone rings-
Hmmm this number looks familiar. Why... "Hello, This is Jonathan."
"Hello, is this Jonathan."
-A voice, strange, asks me.
"Yeh. How can I help you?"
-I have figured out why the number was familiar as I listen close.
The voice continues filled with urgency. "Hello, this is your child's pediatrician. I tried to get a hold of Angela but she didn't answer the phone. Can you get ahold of her, and can you have her call me."
-They were going to nap when I left after lunch.
"Yeh, um sure. She's probably taking a nap with the boys."
-The calm urgency continues "Ok, maybe a different ring will wake her, she needs to call me back right away. There are some results that came back from Enoch's blood work that show he has a metabolic abnormality."
What is that supposed to mean?
"Ok, I will have her call you right away."
"Thanks."
"Thanks."
My mind begins racing with everything I have ever read and remembered and things I didn't know I had remembered, and probably lots of things I have never read or learned.... Angela I need to call Angela. I call her 5 times in 4 minutes and begin walking to a pickup to drive home to talk to her when she answers
"Hey, sorry I didn't pick up. Dana is here with a meal (an incredible thing families in our church do for "fresh" mothers)."
I tell her what I have just heard.
Ten minutes later she calls back. "Can you come home?" Serious sadness is in her tone. "The Doctor says he has Maple Syrup Urine Disease."
"Yep." Not the time for being conversational.
I talk to my brother David, tell him I must go, not knowing when I will return. He jokes that it is a good thing I don't do anything on the farm anyway. I chuckle and agree but then he disagrees with himself and I go.
I drive home...my mind rolling; Maple Syrup Urine Disease, the only disease I could remember from the sheet telling of the rare diseases for which Enoch had been tested. Why was that the only disease I could have told you was on that paper...?
I walk into the house Dana and her kids are playing with Abraham; he loves them dearly. I continue on to the bed room to overhear the end of a conversation my precious wife is having with Lisa, a nurse with the Genetics department at the lead Children's Hospital in the state. It is hours from our house.
Lisa- "You need to get here as quickly as possible, don't drive recklessly but you need to get here as quickly as possible. How soon can you leave?"
Angela-"Within 15 minutes."
"Good. Now, when you get here you need to go immediately to the Emergency Room. Park at the parking right at the door and walk in.
If they don't see you immediately, here is a pager number. If they won't see you immediately you call this pager and someone will be there to make sure you are seen immediately. You are an ER nurse correct?"
"I was until I had our first child."
"You understand what I have told you then. Right?"
"Yes."
Lisa proceeds to give her directions and tells her she will email them also immediately along with other info for us before we leave. However, at this point my brain stops taking in dual information as I have also been skimming a MedlinePlus page Angela had up on our laptop lying on our bed. Shockwaves begin jumping out at me from the page:
Persons with this condition cannot break down the branched-chain amino acids leucine, isoleucine, and valine. This leads to a buildup of these in the blood.
MSUD can cause damage to the brain. Even in the mildest form...can cause mental retardation.
Unwelcome images start bombarding my brain but I read on...
SYMPTOMS
avoiding food
feeding difficulties
lethargy
A knot is starting in the pit of my stomach, the Enemy is loving the fear building in me. I begin replaying conversations Angela and I have had in the last 48 hours of how Enoch is so sleepy and non-active compared to Abraham and how we are (admittedly probably in unbelief) waiting for the "shoe to fall" although we had prayed that he would be easier to care for than our first colicky babe. And other conversations involving Angela asking if I thought everything was OK, because Enoch didn't seem to be sucking nearly as vigorously as he had the first couple of days. And how just earlier that day I had finally got a good look at his eyes and one seemed in my head to be slightly crossing and it dawned on me that I don't know if I had prayed at all about his eyesight. Now these things were whorling.
I skim on as they talk on: vomiting, seizures, urine that smells like maple syrup, Ketosis.
Treatment:
protein-free diet
dialysis
health care provider following amino acid levels closely
long term treatment requires special diet : man-made formula, must remain on this diet permanently
Outlook
Even with dietary treatment stressful situations and illness can still cause high levels of amino acids. Death may occur during these episodes. With strict dietary treatment, children have grown into healthy adulthood.
CHILDREN HAVE GROWN INTO ADULTHOOD. My head takes this to mean the exception to the norm.
Complications:
coma
death
neurological damage
I am in a fog for a moment. I am through skimming the article in only a moments time and Angela is still on the phone. However, by this point I no longer am registering what is being said other than another admonition to leave immediately.
The next 15 minutes are a fog or me showering and us leaving. But through the fog we have joined into the battle. The war has been going but a new fray has picked up to a feverish pitch. The battle for our son, and the battling of unbelief in our own hearts and minds.
God is kind and good. His providential care is amazing.
About the only thing I concretely remember from the shower is our current family memory verse. Sweet Providence.
Isaiah 64:4
-"From of old no one has heard or perceived by the ear, no eye has seen a God besides you, who acts for those who wait for him."
So the waiting on God began. The praying. The reading of God's promises. The sweet music of the Gospel .
We mostly stayed off the phone. Dana was alerting the prayer warriors at church. One other phone call that would facilitate others and then a call to the dear friend who prayed with us and helped us think through how the Enemy would be using this to prey upon us. And to think through where he might be attacking us and helped us know how to prayer. This lead to us thinking though and reading though great helpful thirst quenching/ soul strengthening scripture.
We eventually arrived at the hospital and were immediately attended to. They were surprised to see how healthy he looked and how active he was as they worked long at drawing enough blood for all the different tests they needed to run.
Then after much crying our waiting began.
The hours ran long.
Late evening around 2200 the first news came in, and it was refreshing. The test on blood ammonia came back normal.
Then we were given a place upstairs to spend the evening and were told it would not be until the next morning that they would be able to run the tests for the two major tell tale tests. So, we waited. Many doctor visits. One that reminded us of our dear friend Sharon in Australia. And an absolutely wonderful RN that attended Enoch throughout the night.
The night was long and so was the praying. Angela especially had very little sleep as she held our precious little boy almost all night.
In the morning the visits recommenced. Doctor after doctor, all with slightly different takes on what was going on, but all looked hopeful. Then the Geneticist came. Questioning our history, our background all of our families background. Then his pager went off. 1030. An hour before the results were supposed to be in. He walked to the other room and I could tell nothing from an overheard conversation. But the news was like rain in the dry season. All of the tests came back showing no problems!!!!!!
Tears of thankfulness flowed. An offering to a God who gives good gifts, and answers prayer.
Until we see Christ face to face (and maybe then it won't matter) we will probably never know if God was gracious and gave us a completely healthy boy in answer to our prayer, or if he healed our little boy in answer to our prayer. Either way he has dealt kindly with us, and has "...[acted] for those who wait for him."
My phone rings-
Hmmm this number looks familiar. Why... "Hello, This is Jonathan."
"Hello, is this Jonathan."
-A voice, strange, asks me.
"Yeh. How can I help you?"
-I have figured out why the number was familiar as I listen close.
The voice continues filled with urgency. "Hello, this is your child's pediatrician. I tried to get a hold of Angela but she didn't answer the phone. Can you get ahold of her, and can you have her call me."
"Yeh, um sure. She's probably taking a nap with the boys."
-The calm urgency continues "Ok, maybe a different ring will wake her, she needs to call me back right away. There are some results that came back from Enoch's blood work that show he has a metabolic abnormality."
What is that supposed to mean?
"Ok, I will have her call you right away."
"Thanks."
"Thanks."
My mind begins racing with everything I have ever read and remembered and things I didn't know I had remembered, and probably lots of things I have never read or learned.... Angela I need to call Angela. I call her 5 times in 4 minutes and begin walking to a pickup to drive home to talk to her when she answers
"Hey, sorry I didn't pick up. Dana is here with a meal (an incredible thing families in our church do for "fresh" mothers)."
I tell her what I have just heard.
Ten minutes later she calls back. "Can you come home?" Serious sadness is in her tone. "The Doctor says he has Maple Syrup Urine Disease."
"Yep." Not the time for being conversational.
I talk to my brother David, tell him I must go, not knowing when I will return. He jokes that it is a good thing I don't do anything on the farm anyway. I chuckle and agree but then he disagrees with himself and I go.
I drive home...my mind rolling; Maple Syrup Urine Disease, the only disease I could remember from the sheet telling of the rare diseases for which Enoch had been tested. Why was that the only disease I could have told you was on that paper...?
I walk into the house Dana and her kids are playing with Abraham; he loves them dearly. I continue on to the bed room to overhear the end of a conversation my precious wife is having with Lisa, a nurse with the Genetics department at the lead Children's Hospital in the state. It is hours from our house.
Lisa- "You need to get here as quickly as possible, don't drive recklessly but you need to get here as quickly as possible. How soon can you leave?"
Angela-"Within 15 minutes."
"Good. Now, when you get here you need to go immediately to the Emergency Room. Park at the parking right at the door and walk in.
"I was until I had our first child."
"You understand what I have told you then. Right?"
"Yes."
Lisa proceeds to give her directions and tells her she will email them also immediately along with other info for us before we leave. However, at this point my brain stops taking in dual information as I have also been skimming a MedlinePlus page Angela had up on our laptop lying on our bed. Shockwaves begin jumping out at me from the page:
Persons with this condition cannot break down the branched-chain amino acids leucine, isoleucine, and valine. This leads to a buildup of these in the blood.
MSUD can cause damage to the brain. Even in the mildest form...can cause mental retardation.
Unwelcome images start bombarding my brain but I read on...
SYMPTOMS
avoiding food
feeding difficulties
lethargy
A knot is starting in the pit of my stomach, the Enemy is loving the fear building in me. I begin replaying conversations Angela and I have had in the last 48 hours of how Enoch is so sleepy and non-active compared to Abraham and how we are (admittedly probably in unbelief) waiting for the "shoe to fall" although we had prayed that he would be easier to care for than our first colicky babe. And other conversations involving Angela asking if I thought everything was OK, because Enoch didn't seem to be sucking nearly as vigorously as he had the first couple of days. And how just earlier that day I had finally got a good look at his eyes and one seemed in my head to be slightly crossing and it dawned on me that I don't know if I had prayed at all about his eyesight. Now these things were whorling.
I skim on as they talk on: vomiting, seizures, urine that smells like maple syrup, Ketosis.
Treatment:
protein-free diet
dialysis
health care provider following amino acid levels closely
long term treatment requires special diet : man-made formula, must remain on this diet permanently
Outlook
Even with dietary treatment stressful situations and illness can still cause high levels of amino acids. Death may occur during these episodes. With strict dietary treatment, children have grown into healthy adulthood.
CHILDREN HAVE GROWN INTO ADULTHOOD. My head takes this to mean the exception to the norm.
Complications:
coma
death
neurological damage
I am in a fog for a moment. I am through skimming the article in only a moments time and Angela is still on the phone. However, by this point I no longer am registering what is being said other than another admonition to leave immediately.
The next 15 minutes are a fog or me showering and us leaving. But through the fog we have joined into the battle. The war has been going but a new fray has picked up to a feverish pitch. The battle for our son, and the battling of unbelief in our own hearts and minds.
God is kind and good. His providential care is amazing.
About the only thing I concretely remember from the shower is our current family memory verse. Sweet Providence.
Isaiah 64:4
-"From of old no one has heard or perceived by the ear, no eye has seen a God besides you, who acts for those who wait for him."
So the waiting on God began. The praying. The reading of God's promises. The sweet music of the Gospel .
We mostly stayed off the phone. Dana was alerting the prayer warriors at church. One other phone call that would facilitate others and then a call to the dear friend who prayed with us and helped us think through how the Enemy would be using this to prey upon us. And to think through where he might be attacking us and helped us know how to prayer. This lead to us thinking though and reading though great helpful thirst quenching/ soul strengthening scripture.
We eventually arrived at the hospital and were immediately attended to. They were surprised to see how healthy he looked and how active he was as they worked long at drawing enough blood for all the different tests they needed to run.
Then after much crying our waiting began.
The hours ran long.
Late evening around 2200 the first news came in, and it was refreshing. The test on blood ammonia came back normal.
In the morning the visits recommenced. Doctor after doctor, all with slightly different takes on what was going on, but all looked hopeful. Then the Geneticist came. Questioning our history, our background all of our families background. Then his pager went off. 1030. An hour before the results were supposed to be in. He walked to the other room and I could tell nothing from an overheard conversation. But the news was like rain in the dry season. All of the tests came back showing no problems!!!!!!
Tears of thankfulness flowed. An offering to a God who gives good gifts, and answers prayer.
Until we see Christ face to face (and maybe then it won't matter) we will probably never know if God was gracious and gave us a completely healthy boy in answer to our prayer, or if he healed our little boy in answer to our prayer. Either way he has dealt kindly with us, and has "...[acted] for those who wait for him."
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