Puzzle Pieces
As I mentioned in the closing of my previous blog, Diamonds, we have been to quite a few doctor appointments in an effort to put together the puzzle pieces of what all is going on with Hezekiah's body. Last week was a Medical Marathon and I am pleased to report that we ran it like seasoned veterans. We head back to Children's Mercy in Kansas City this Tuesday for a couple more appointments and then I think we actually have a few days off.
Many have wondered what all is going on with our sweet babe (so have we!), and I want to take this opportunity to share some of what we do know. My hope is that you will use this information to pray specifically for wholeness and health for him, but not as a measure by which to limit him or set a lower bar of expectation. I fully anticipate seeing God glorified all throughout his life. Sometimes this will come in the form of medical miracles. Other times it will come in the form of the endurance and grace with which he runs the race set before him.
Hezekiah was born with several anomalies. This just means differences from what is normal, standard, or expected. There are the apparent physical anomalies that can be seen with the human eye:
Bi-lateral cleft lip
Complete cleft palate
Syndactyly of his left hand (three fingers fused together)
Ectrodactyly on both feet (missing toes, sort of 'pincher' feet)
The collection of these differences indicate that some other problems likely exist below the surface, so Hezekiah endured a battery of exams and tests while he was still in the NICU at birth. While there they discovered some problems with his heart and kidneys, but those have since cleared up/healed and appear normal. Yay, Lord!
They also drew blood for chromosome and DNA testing to check for possible syndromes. We have not ruled out all syndromes yet, but his chromosome test and micro array test both came back normal. We will meet with the genetics clinic at Children's Mercy in Kansas City on Tuesday and discuss what it looks like to begin testing specific genes and looking for a distinct genetic disorder that can account for all of the various differences. This would help give a road map for Hezekiah; we could watch for other problems that might arise due to an identified syndrome or genetic disorder, and qualify for special therapies and treatments as well as financial assistance to cover the cost of his medical needs. We will learn more about that on Tuesday.
An ultra sound led to some suspicion about the corpus collosum in Hezekiah's brain so they did an MRI (at this point, this is all still in the NICU). They discovered that he has agenesis of the corpus callosum, which means it only partially developed. There is no cure or treatment for this and it will not develop any further outside of the womb. The CC is the piece of the brain that communicates between the left and right side. How this will affect him specifically is unknown, but it most commonly affects coordination. Effects can range from subtle/mild to severe. Some who have ACC struggle a great deal to overcome its obstacles, while others live their whole lives only knowing it is there because they were told by a scan that it is. We are already doing some physical therapy to help teach his brain how to work around its deficiencies. God made the brain to be quite an amazing piece of biology and it can compensate for problems or injuries in ways science can't fully explain. We could curl up in fear while scouring google about all the potential worst-case-scenarios, but we won't. And we won't let anyone else do that for us. Woe to the person that attempts to limit what our little man can do or utters a single word of dismay about his life. I really mean that.
Woe. to. them.
Our endocrinologist has said to me more than once "Don't let doctors or anyone tell you what your son cannot do."
I couldn't agree with her more.
Doctors are not writing his story.
We are not writing his story.
The Author of Life is writing his story.
Since the NICU we have continued to uncover other underlying differences. Currently, Hezekiah has two other identified diagnoses:
Panhypopituitarism - he is lacking in more than one of the 8 hormones produced by the pituitary gland. (One of the things our recent MRI looked at was the pituitary gland, but again-no results until the 21st.) One of those hormones is cortisole. This is a very important hormone for him for several reasons, but especially for sedation. Thankfully, we can manage his hormone deficiencies with hormone replacements. It will take special attention throughout life to do through supplements what the body is meant to do naturally, but not impossible.
Diabetes Insipidus - this is NOT the sugar/insulin diabetes we are most familiar with. DI is a disorder that causes an imbalance of water in the body. This was discovered because of high levels of sodium in his blood and through urine analysis. Without medication people with DI experience intense thirst (even after drinking water) and large amounts of urine. It can easily lead to dehydration. There is no cure, but there are treatments to help minimize the symptoms. Thankfully we are only doing a very, very tiny dose of medication right now and he doesn't appear to have developed noticeable symptoms. We have to be careful with the medication. Because people with DI are used to high levels of sodium a sudden drop in those levels can result in seizures.
Both of these conditions are manageable with medicine, but will always be something we monitor closely and have to advocate for whenever he receives medical care. Thankfully we have an absolutely AMAZING Endocrinologist. She is phenomenal and cares a great deal about our son.
We expect a typical life for Hezekiah.
We hope the very best for him.
We will speak love and life over him.
We will help when things are more difficult, but always empower him.
We will cheer with him when he reaches milestones-no matter when he does.
We will sit and cry with him-or for him-when the challenges or medical treatments feel too much to bear.
We will help him rise up from the floor and press on.
We will teach him to rely on Jesus.
We will praise God. Every moment.
We will let God use Hezekiah's beautiful life to change and shape us and others around us.
We will tell our stories so that God's glory is revealed.
We will protect Hezekiah-like fierce mother bears-and we will silence the ugly that comes out of people's mouths or shows up on their faces. We will not let people speak down to him or curse his bright beautiful future.
We will continue to be certain of the fact that God created Hezekiah with purpose and meaning-just as much as anyone else.
His future has lots of unknowns for us, but not to His creator. This brings us incredible peace. There is not a day His Maker has not seen, and He will never leave Hezekiah. Not for a moment.
On Tuesday we will get a few more answers, but most likely just more questions. We will first meet with genetics clinic and then with neurology. We know for sure that we will learn about what they saw with his pituitary gland and with his optic nerves. There can be some potential problems with the optic nerve since he has midline defects, but no sense in explaining those until we know.
Meanwhile we are looking forward to finalizing his adoption. There are a few things that have to happen for this to occur:
-Two post placement visits with a social worker (approximately $400)
-Sending two medical reports to the agency
-$7,500 payment to agency
-$2,000 in finalization fees
God has been so faithful in his provision!
In the last two weeks we got approved for a $2,500 grant from Perfect Graft, Inc. and a $5,000 matching grant from Lifesong for Orphans.
This means:
A Perfect Graft will make a $2,500 payment to the agency on our behalf.
Life Song will collect tax deductible donations on our behalf and an organization called Aim5 will match those donations up to $10,000. So someone gives $50 and it instantly becomes $100 towards our expenses. Woah!
This is a HUGE blessing, because not only will that help with what we still owe, but we can use it to pay off the $9,500 of debt we have incurred so far.
We also got started with 35kcampaign one month earlier than expected!
For all these things we Praise God!
If you feel led to help us click here to learn about how to make a donation to our matching grant.
We continually feel the reassurance of our Father and His goodness. There may be many missing puzzle pieces and several moving parts, but God's timing is perfect and He IS sovereign. One of the most incredible parts of this journey has been the many real-life "trust fall" exercises, because God has called so many different people to step out of the wood work in our lives and catch us. Sometimes people we could have expected and many we would have never guessed. I will forever be grateful for all of these people who have, quite literally, carried us forward in this journey. I know some of those people who have helped or will help will be reading this blog and I hope you know-YOU are a treasured piece in God's story for our lives and we pray God's richest blessings on you.
Many have wondered what all is going on with our sweet babe (so have we!), and I want to take this opportunity to share some of what we do know. My hope is that you will use this information to pray specifically for wholeness and health for him, but not as a measure by which to limit him or set a lower bar of expectation. I fully anticipate seeing God glorified all throughout his life. Sometimes this will come in the form of medical miracles. Other times it will come in the form of the endurance and grace with which he runs the race set before him.
Hezekiah was born with several anomalies. This just means differences from what is normal, standard, or expected. There are the apparent physical anomalies that can be seen with the human eye:
Bi-lateral cleft lip
Complete cleft palate
Syndactyly of his left hand (three fingers fused together)
Ectrodactyly on both feet (missing toes, sort of 'pincher' feet)
The collection of these differences indicate that some other problems likely exist below the surface, so Hezekiah endured a battery of exams and tests while he was still in the NICU at birth. While there they discovered some problems with his heart and kidneys, but those have since cleared up/healed and appear normal. Yay, Lord!
They also drew blood for chromosome and DNA testing to check for possible syndromes. We have not ruled out all syndromes yet, but his chromosome test and micro array test both came back normal. We will meet with the genetics clinic at Children's Mercy in Kansas City on Tuesday and discuss what it looks like to begin testing specific genes and looking for a distinct genetic disorder that can account for all of the various differences. This would help give a road map for Hezekiah; we could watch for other problems that might arise due to an identified syndrome or genetic disorder, and qualify for special therapies and treatments as well as financial assistance to cover the cost of his medical needs. We will learn more about that on Tuesday.
An ultra sound led to some suspicion about the corpus collosum in Hezekiah's brain so they did an MRI (at this point, this is all still in the NICU). They discovered that he has agenesis of the corpus callosum, which means it only partially developed. There is no cure or treatment for this and it will not develop any further outside of the womb. The CC is the piece of the brain that communicates between the left and right side. How this will affect him specifically is unknown, but it most commonly affects coordination. Effects can range from subtle/mild to severe. Some who have ACC struggle a great deal to overcome its obstacles, while others live their whole lives only knowing it is there because they were told by a scan that it is. We are already doing some physical therapy to help teach his brain how to work around its deficiencies. God made the brain to be quite an amazing piece of biology and it can compensate for problems or injuries in ways science can't fully explain. We could curl up in fear while scouring google about all the potential worst-case-scenarios, but we won't. And we won't let anyone else do that for us. Woe to the person that attempts to limit what our little man can do or utters a single word of dismay about his life. I really mean that.
Woe. to. them.
Our endocrinologist has said to me more than once "Don't let doctors or anyone tell you what your son cannot do."
I couldn't agree with her more.
Doctors are not writing his story.
We are not writing his story.
The Author of Life is writing his story.
Since the NICU we have continued to uncover other underlying differences. Currently, Hezekiah has two other identified diagnoses:
Panhypopituitarism - he is lacking in more than one of the 8 hormones produced by the pituitary gland. (One of the things our recent MRI looked at was the pituitary gland, but again-no results until the 21st.) One of those hormones is cortisole. This is a very important hormone for him for several reasons, but especially for sedation. Thankfully, we can manage his hormone deficiencies with hormone replacements. It will take special attention throughout life to do through supplements what the body is meant to do naturally, but not impossible.
Diabetes Insipidus - this is NOT the sugar/insulin diabetes we are most familiar with. DI is a disorder that causes an imbalance of water in the body. This was discovered because of high levels of sodium in his blood and through urine analysis. Without medication people with DI experience intense thirst (even after drinking water) and large amounts of urine. It can easily lead to dehydration. There is no cure, but there are treatments to help minimize the symptoms. Thankfully we are only doing a very, very tiny dose of medication right now and he doesn't appear to have developed noticeable symptoms. We have to be careful with the medication. Because people with DI are used to high levels of sodium a sudden drop in those levels can result in seizures.
Both of these conditions are manageable with medicine, but will always be something we monitor closely and have to advocate for whenever he receives medical care. Thankfully we have an absolutely AMAZING Endocrinologist. She is phenomenal and cares a great deal about our son.
We expect a typical life for Hezekiah.
We hope the very best for him.
We will speak love and life over him.
We will help when things are more difficult, but always empower him.
We will cheer with him when he reaches milestones-no matter when he does.
We will sit and cry with him-or for him-when the challenges or medical treatments feel too much to bear.
We will help him rise up from the floor and press on.
We will teach him to rely on Jesus.
We will praise God. Every moment.
We will let God use Hezekiah's beautiful life to change and shape us and others around us.
We will tell our stories so that God's glory is revealed.
We will protect Hezekiah-like fierce mother bears-and we will silence the ugly that comes out of people's mouths or shows up on their faces. We will not let people speak down to him or curse his bright beautiful future.
We will continue to be certain of the fact that God created Hezekiah with purpose and meaning-just as much as anyone else.
His future has lots of unknowns for us, but not to His creator. This brings us incredible peace. There is not a day His Maker has not seen, and He will never leave Hezekiah. Not for a moment.
On Tuesday we will get a few more answers, but most likely just more questions. We will first meet with genetics clinic and then with neurology. We know for sure that we will learn about what they saw with his pituitary gland and with his optic nerves. There can be some potential problems with the optic nerve since he has midline defects, but no sense in explaining those until we know.
Meanwhile we are looking forward to finalizing his adoption. There are a few things that have to happen for this to occur:
-Two post placement visits with a social worker (approximately $400)
-Sending two medical reports to the agency
-$7,500 payment to agency
-$2,000 in finalization fees
God has been so faithful in his provision!
In the last two weeks we got approved for a $2,500 grant from Perfect Graft, Inc. and a $5,000 matching grant from Lifesong for Orphans.
This means:
A Perfect Graft will make a $2,500 payment to the agency on our behalf.
Life Song will collect tax deductible donations on our behalf and an organization called Aim5 will match those donations up to $10,000. So someone gives $50 and it instantly becomes $100 towards our expenses. Woah!
This is a HUGE blessing, because not only will that help with what we still owe, but we can use it to pay off the $9,500 of debt we have incurred so far.
We also got started with 35kcampaign one month earlier than expected!
For all these things we Praise God!
If you feel led to help us click here to learn about how to make a donation to our matching grant.
We continually feel the reassurance of our Father and His goodness. There may be many missing puzzle pieces and several moving parts, but God's timing is perfect and He IS sovereign. One of the most incredible parts of this journey has been the many real-life "trust fall" exercises, because God has called so many different people to step out of the wood work in our lives and catch us. Sometimes people we could have expected and many we would have never guessed. I will forever be grateful for all of these people who have, quite literally, carried us forward in this journey. I know some of those people who have helped or will help will be reading this blog and I hope you know-YOU are a treasured piece in God's story for our lives and we pray God's richest blessings on you.
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