On Thursday, 10/10/13, we finally got the call we had been waiting for - the test results from the CGH done in San Francisco were in. It has been confirmed that Gideon does have melanoma. Deep breath.
Let me back up and fill you in a bit from my last post when we THOUGHT that the Vancouver Clinic was running this test. They fumbled and called saying they couldn't do it. They asked Seattle to do it, they refused (because the doctor up there decided this was benign and wasn't willing to order the test.) It got bumped back to Vancouver Clinc who tried and failed to get it done. Three. Times. Then on September 12th, I picked up the phone on a long shot and called San Francisco myself. I spoke with Sherry. Sherry said if I wanted the test, she would make sure it got down. Right Away! And she did!! She even updated me about once a week while we were waiting.
Then, this week on Monday, she said they had the results, but couldn't share them. I asked her about it and she said that I'd want the doctor to go over them in person. I told her that of course I assumed the worst when she said that and could she just give me an idea. She said "You'll want to call your doctor." So I did. Every morning and afternoon on Monday, Tuesday, and Wednesday. On Wednesday, I was told, they had received the fax, but the doctor hadn't read it yet and the medical assistant was "on it." On Thursday, they finally called me and asked me to come into the office. I forced the doctor to just tell me. Then I went into the office. Within 24 hours, St. Jude had a flight to bring us there and a room for us to stay. We leave Monday and were told to prepare to be there for at least 2 weeks for the initial visit.
Since then, it has been a complete whirlwind of activity. Packing, planning, organizing. Friends have stepped in to care for the kids, provide meals and even offer to relieve Scott while I'm gone with Gideon. We are as ready as we can be. Pray for wisdom as we make decisions regarding Gideon's care, school for the other kids, and are apart as a family. Pray for Scott to be able to do well with the business and have patience and not feel too far away from his little man. Pray that Gideon and I would get rest and have endurance for what is certain to be more of a marathon than a sprint.
Sunday, October 13, 2013
Friday, August 2, 2013
An Update on Our Waiting
Because so many are asking, and we really appreciate everyone's prayers and concerns, I wanted to post a short update on Gideon. However, there isn't a lot of news yet. Because of the difficulty in diagnosis (which the article below does more to explain than I could) and the rarity of it, things have moved quite slowly.
After his surgery in Seattle, the doctors there wanted to ignore the pathology and assume that by removing the spot on his face, he would be okay. However, we were not comfortable with the "ignore the pathology" part - their reasoning was that it is rare for 3 year olds to get melanoma - so the odds were in our favor. But we are talking about OUR 3 year old. And we've been through enough with Elijah to understand that "very rare" doesn't mean "doesn't happen."
We also (Providentially) were able to talk with some very experienced moms who have walked this road before us (two are in the article) and based on their experience, it was definitely necessary to keep going to get a diagnosis we could be confident in. So we were referred to St. Judes Children's Cancer Research Hospital in Memphis.
Due to the long distance between us and them, they want to run as many tests as they can here first before bringing us there. So first they started asking why a CGH hadn't been done. This is a test they do on tissue they already took in both the originally shave biopsy and then the Wide Local Excision surgery. It should tell us exactly where the extra chromosome is - and knowing that will tell us how to proceed (kind of.) So in order to do this, they had to track down the slides, which have traveled from Vancouver to San Francisco to Seattle to Memphis and once found were sent back to Vancouver, where they are currently being tested.
They have also ordered a Sentinel Node Biopsy (which, really, why didn't we do this sooner) which will be done in Portland by the same surgeons who operated on Elijah last year - so thankful to be doing this close to home! That should be sometime in the next two weeks.
They've also ordered a full body scan since Gideon's lymph nodes in his neck continue to be quite enlarged (there are four that you can distinctively feel) and as of ten days ago, the ones in his groin are now also swollen.
Hopefully, all of these results together will give us a clear picture of what is necessary for treatment. I would love it if they all came back clear! But either way, we are thankful in a way that the process was slow, it has given us time to breathe and enjoy the summer and to be reminded that this didn't surprise our God and He chose this (whatever "this" is) for Gideon and for us at this time. And to be reminded that we were called to go on these upcoming missions trips, so we will still go, because we know that God called us and He will provide in EVERY way. So we don't have to fret. We can rest well in His promises.
THE ARTICLE I MENTIONED ABOVE:
http://abcnews.go.com/m/story?id=19774895&ref=https%3A%2F%2Fm.facebook.com
After his surgery in Seattle, the doctors there wanted to ignore the pathology and assume that by removing the spot on his face, he would be okay. However, we were not comfortable with the "ignore the pathology" part - their reasoning was that it is rare for 3 year olds to get melanoma - so the odds were in our favor. But we are talking about OUR 3 year old. And we've been through enough with Elijah to understand that "very rare" doesn't mean "doesn't happen."
We also (Providentially) were able to talk with some very experienced moms who have walked this road before us (two are in the article) and based on their experience, it was definitely necessary to keep going to get a diagnosis we could be confident in. So we were referred to St. Judes Children's Cancer Research Hospital in Memphis.
Due to the long distance between us and them, they want to run as many tests as they can here first before bringing us there. So first they started asking why a CGH hadn't been done. This is a test they do on tissue they already took in both the originally shave biopsy and then the Wide Local Excision surgery. It should tell us exactly where the extra chromosome is - and knowing that will tell us how to proceed (kind of.) So in order to do this, they had to track down the slides, which have traveled from Vancouver to San Francisco to Seattle to Memphis and once found were sent back to Vancouver, where they are currently being tested.
They have also ordered a Sentinel Node Biopsy (which, really, why didn't we do this sooner) which will be done in Portland by the same surgeons who operated on Elijah last year - so thankful to be doing this close to home! That should be sometime in the next two weeks.
They've also ordered a full body scan since Gideon's lymph nodes in his neck continue to be quite enlarged (there are four that you can distinctively feel) and as of ten days ago, the ones in his groin are now also swollen.
Hopefully, all of these results together will give us a clear picture of what is necessary for treatment. I would love it if they all came back clear! But either way, we are thankful in a way that the process was slow, it has given us time to breathe and enjoy the summer and to be reminded that this didn't surprise our God and He chose this (whatever "this" is) for Gideon and for us at this time. And to be reminded that we were called to go on these upcoming missions trips, so we will still go, because we know that God called us and He will provide in EVERY way. So we don't have to fret. We can rest well in His promises.
THE ARTICLE I MENTIONED ABOVE:
http://abcnews.go.com/m/story?id=19774895&ref=https%3A%2F%2Fm.facebook.com
Monday, June 3, 2013
More Questions Than Answers
Thank you all for praying. It was a busy, long and confusing day. First of all, we learned much more about his diagnosis - but most of what we learned just led to a lot of confusion. In summary, let me give you a little information to help you follow all of this. There is a special kind of mole called a Spitz Nevus. By definition, a Spitz Nevus (also called Spitzoid tumor or Spitz Melanoma) is benign. However, there is a subset called an Atypical Spitz Nevus that pathologically (when they do a biopsy and study it's features) looks just like melanoma. So much so, that there is ongoing debate in the medical world as to what to do when pathology comes back as an "Atypical Spitz Nevus". Which is exactly what Gideon's pathology came back us.
However, since melanoma can be so serious, many doctors call an Atypical Spitz Nevus a melanoma. They give this diagnosis and treat it as such. This is what the dermatologist that originally gave us the diagnosis told us - it was melanoma, which is usually very rare in children and quite fast growing. It was based on this, that the oncologist and others gave us the recommendations to do a Wide Local Excision and Sentinel Node Biopsy (SNB), which would be very drastic - especially on his face. But when your dealing with cancer, drasitc is okay. That doctor and many others are on the side that says "It looks like melanoma, it is melanoma, treat it like melanoma."
But the other side of the coin says, there is a possibility that it is completely benign and since it's on his face, maybe we should start with a smaller more complete excision that would leave him with a smaller scar. Then we will biopsy that tissue. If it still comes back inconclusive or conclusively melanoma, then we will move forward with the larger excision and SNB. If it comes back clearly benign, we saved him from a bigger surgery. Obviously, as parents, we want to do everything we can to prevent any unnecessary surgery and cutting, so it sounds like good news. But this is where it gets confusing.
First, the dermatologist, while recommending the smaller surgery first, did say that if this were anywhere else on his body, she wouldn't hesitate to call it melanoma and treat it as such with the exact same pathology. If he were older, again, she wouldn't hesitate. And ultimately, she kind of expects us to end up needing to do the bigger surgery. So are we simply delaying the inevitable? Maybe, but right now it seems worth the risk and have the possibility of a much smaller scar and a benign finding.
Bottom line. Does he have cancer? Depends on who you ask. Some would say yes, some would say maybe. Nobody can say no. At least not yet. Maybe this is the answer we asked for. It's too soon to know.
Surgery is re-scheduled for the 17th at this point. But before then, Seattle will be reviewing the slides for a third opinion on the pathology. All of the doctors will "pow-wow" and determine with us just what margins they need to take. In the meantime, the chest x-ray did not show any nodules, which was definitely good. His bloodwork wasn't too exciting, but did show that his reactive Lymphocytes were relatively high. So a few more pieces to fill in the puzzle.
Again, thank you for your prayers. This is all very confusing for us and it isn't reassuring when the experts you seek out don't give you clear answers, but rather leave you with a lot more questions.
However, since melanoma can be so serious, many doctors call an Atypical Spitz Nevus a melanoma. They give this diagnosis and treat it as such. This is what the dermatologist that originally gave us the diagnosis told us - it was melanoma, which is usually very rare in children and quite fast growing. It was based on this, that the oncologist and others gave us the recommendations to do a Wide Local Excision and Sentinel Node Biopsy (SNB), which would be very drastic - especially on his face. But when your dealing with cancer, drasitc is okay. That doctor and many others are on the side that says "It looks like melanoma, it is melanoma, treat it like melanoma."
But the other side of the coin says, there is a possibility that it is completely benign and since it's on his face, maybe we should start with a smaller more complete excision that would leave him with a smaller scar. Then we will biopsy that tissue. If it still comes back inconclusive or conclusively melanoma, then we will move forward with the larger excision and SNB. If it comes back clearly benign, we saved him from a bigger surgery. Obviously, as parents, we want to do everything we can to prevent any unnecessary surgery and cutting, so it sounds like good news. But this is where it gets confusing.
First, the dermatologist, while recommending the smaller surgery first, did say that if this were anywhere else on his body, she wouldn't hesitate to call it melanoma and treat it as such with the exact same pathology. If he were older, again, she wouldn't hesitate. And ultimately, she kind of expects us to end up needing to do the bigger surgery. So are we simply delaying the inevitable? Maybe, but right now it seems worth the risk and have the possibility of a much smaller scar and a benign finding.
Bottom line. Does he have cancer? Depends on who you ask. Some would say yes, some would say maybe. Nobody can say no. At least not yet. Maybe this is the answer we asked for. It's too soon to know.
Surgery is re-scheduled for the 17th at this point. But before then, Seattle will be reviewing the slides for a third opinion on the pathology. All of the doctors will "pow-wow" and determine with us just what margins they need to take. In the meantime, the chest x-ray did not show any nodules, which was definitely good. His bloodwork wasn't too exciting, but did show that his reactive Lymphocytes were relatively high. So a few more pieces to fill in the puzzle.
Again, thank you for your prayers. This is all very confusing for us and it isn't reassuring when the experts you seek out don't give you clear answers, but rather leave you with a lot more questions.
Wednesday, May 29, 2013
Surgery Scheduled
First off, we are keeping busy. Mainly, it keeps us from dwelling on questions we don't have answers to. Like how we are handling all this. In our heads, we know that God is in control and has all these answers. In reality, we are working hard at trying not to panic. God is good. He has a plan. He will provide everything that we need.
So far, we have chosen Seattle Children's Hospital to provide Gideon's care. They are working in conjunction with the Seattle Cancer Care Alliance and are one of the best places in the country to be treated. We are thankful to have found a solution so close to home.
We are also very blessed to have had the privilege of talking on the phone with two other families who have walked this road and are on the other side. It was a huge encouragement. When we were facing medical challenges with Elijah, we never had that. I can not tell you how great it was to know that we weren't alone and to know I can call these ladies anytime to ask questions. They also gave us wonderful advice to make sure that we got the sentinel node mapping and biopsy done at the time of the WLE surgery, which will make everything easier for Gideon.
Another blessing has been the doctors at Seattle Children's. They are on top of things. Dr. Ho, the oncologist, called us on Tuesday morning before 9 am. He had just read over the case and wanted to let us know what the plan was. We hadn't expected to hear from anyone until at least Wednesday, and then we thought it would just be a scheduler. But the doctor called and spent about 45 minutes explaining things and answering questions. Then, the scheduler called today. He scheduled us with one plastics surgeon and an ENT. About ten minutes later, Dr. Ho called us again, saying that he wanted a different doctor to do the surgery, and had called Dr. Hopper, the chief of pediatric plastic surgery - he will be doing the surgery himself!
Gideon is not sick right now. He does have a continuous low grade fever and is not healing from his recent fall on his chin (they glued it back together, but it isn't taking.) He has lost 3.8 lbs over the last 4 weeks. And he looks tired, but isn't really sleeping more than usual. All of that makes this whole thing seem even stranger.
So here's the plan as we know it: On Monday, the 10th, we have several (8, I believe) appointments at various places within Seattle Children's. Then, on Tuesday, the 11th, his surgery (wide local excision - WLE) is scheduled. We are prepared for them to remove a large section of his cheek (down to the muscle fascia), do a sentinel node mapping and biopsy. Then we will go from there.
Thank you all for your prayers. We are really thankful for a great support system and friends.
So far, we have chosen Seattle Children's Hospital to provide Gideon's care. They are working in conjunction with the Seattle Cancer Care Alliance and are one of the best places in the country to be treated. We are thankful to have found a solution so close to home.
We are also very blessed to have had the privilege of talking on the phone with two other families who have walked this road and are on the other side. It was a huge encouragement. When we were facing medical challenges with Elijah, we never had that. I can not tell you how great it was to know that we weren't alone and to know I can call these ladies anytime to ask questions. They also gave us wonderful advice to make sure that we got the sentinel node mapping and biopsy done at the time of the WLE surgery, which will make everything easier for Gideon.
Another blessing has been the doctors at Seattle Children's. They are on top of things. Dr. Ho, the oncologist, called us on Tuesday morning before 9 am. He had just read over the case and wanted to let us know what the plan was. We hadn't expected to hear from anyone until at least Wednesday, and then we thought it would just be a scheduler. But the doctor called and spent about 45 minutes explaining things and answering questions. Then, the scheduler called today. He scheduled us with one plastics surgeon and an ENT. About ten minutes later, Dr. Ho called us again, saying that he wanted a different doctor to do the surgery, and had called Dr. Hopper, the chief of pediatric plastic surgery - he will be doing the surgery himself!
Gideon is not sick right now. He does have a continuous low grade fever and is not healing from his recent fall on his chin (they glued it back together, but it isn't taking.) He has lost 3.8 lbs over the last 4 weeks. And he looks tired, but isn't really sleeping more than usual. All of that makes this whole thing seem even stranger.
So here's the plan as we know it: On Monday, the 10th, we have several (8, I believe) appointments at various places within Seattle Children's. Then, on Tuesday, the 11th, his surgery (wide local excision - WLE) is scheduled. We are prepared for them to remove a large section of his cheek (down to the muscle fascia), do a sentinel node mapping and biopsy. Then we will go from there.
Thank you all for your prayers. We are really thankful for a great support system and friends.
Wednesday, May 8, 2013
Blindsided
Today marks 6 full months since Elijah has been hospitalized for any reason. This is the first time in nearly 6 years we can say that. He is doing great and growing rapidly - we praise the Lord for such wonderful progress. We've had almost an expectation that something would go wrong and this streak of health would be halted. But it hasn't. At least not for Elijah,
Yet, today, we were blindsided with news about Gideon, our energetic 3 year old. In November of last year, we noticed a small wart on the very center of his left cheek. It slowly grew and late in the month, we made an appointment to have it frozen off. Instead of turning black and falling off, it turned red and grew to three times larger.
Our pediatrician referred us to a dermatologist. I put off making the appointment and the "wart" continued to grow. Finally, two weeks ago, we took him in. The dermatologist looked at it and said that he wanted to biopsy it; he felt that we were not dealing with wart, but a cancerous growth. Frankly, I was quite skeptical and expected the results to come back normal.
Today, on the six month anniversary celebrating one child's health, we were told that Gideon has cancer. It is a very rare, aggressive form of skin cancer. He will soon have surgery to remove the remainder of the growth. Out of every 100,000 moles that are biopsied, 1.5 are a type of tumor called Spitz Nevi. Of those 1.5, over 70% are benign.
This form typically spreads to the lymph nodes. He will be tested. There are symptoms that indicate reasons to be concerned about this. Please pray for us as we learn more, seek the right doctors and care for him. The main prayer right now is that it will not and has not spread.
We do know that we serve the Great Physician. He wasn't blindsided and knows how to cure this and has promised to carry us through whatever lies ahead. We know that He will provide all that we need and despite what seems to be difficult news, He is good.
Yet, today, we were blindsided with news about Gideon, our energetic 3 year old. In November of last year, we noticed a small wart on the very center of his left cheek. It slowly grew and late in the month, we made an appointment to have it frozen off. Instead of turning black and falling off, it turned red and grew to three times larger.
Our pediatrician referred us to a dermatologist. I put off making the appointment and the "wart" continued to grow. Finally, two weeks ago, we took him in. The dermatologist looked at it and said that he wanted to biopsy it; he felt that we were not dealing with wart, but a cancerous growth. Frankly, I was quite skeptical and expected the results to come back normal.
Today, on the six month anniversary celebrating one child's health, we were told that Gideon has cancer. It is a very rare, aggressive form of skin cancer. He will soon have surgery to remove the remainder of the growth. Out of every 100,000 moles that are biopsied, 1.5 are a type of tumor called Spitz Nevi. Of those 1.5, over 70% are benign.
This form typically spreads to the lymph nodes. He will be tested. There are symptoms that indicate reasons to be concerned about this. Please pray for us as we learn more, seek the right doctors and care for him. The main prayer right now is that it will not and has not spread.
Sunday, April 21, 2013
Getting the Word Out...
What will the Janku family be doing this year? Well, I'm glad you asked! For the past two plus years, we have been talking to a recruiter with World Harvest Mission.
They needed someone with construction experience to go on short term trips to support their missionaries with special tasks that ultimately would enhance and grow their on-going missions work around the world. They have presented us with various opportunities over the last two years, but after prayer, none of them felt right, or the timing was not right for our family. This year, they have three opportunities that we felt led to say "yes" to!
UGANDA - August 30-September 14, 2013
On this trip, Scott will be traveling with four other highly skilled craftsmen to work with a single female missionary. Her house had burned when she was away on a furlough. Although she and her adopted children are living in the partially repaired home (it had masonry walls), it still needs a lot of work, including a kitchen and running hot water! The team plans to provide her with a kitchen and solar panels to give her these necessities! They are also hoping to pour a concrete play yard for the children at the school where her adopted daughters attend.
LONDON - October 25 - November 5, 2013
The entire family has been invited to help WHM missionary and church planter Chris Hatch run a VBS! We will also be working with some homeless ministries and getting to know the families in the area that is largely Muslim. We will be joined by Dana Dirksen and the Songs for Saplings team on this trip. (If you have children, you want to get to know their music!) The VBS materials we are using were written just for them, with a construction theme and we will be "practicing" by using the same materials for the kids from our home church, Living Water, this summer. There will also likely be another team member going along with us as well.
CHILE - January 2014
Scott will again be traveling with a group of skilled tradesmen. This time they will begin construction on a home for a local pastor. (It will be completed in two other planned trips.) The home will allow the pastor to focus full-time on his ministry. Many local pastors are required to work outside of their ministries in order to pay rents.
HOW CAN YOU HELP?
I'm also glad you asked that question. First, we need prayer. As business owners, it's a little frightening to leave the business for these trips. It's also challenging to take our entire family on a trip. However, we feel confident that the Lord will be going with us and will provide for us every step of the way.
Secondly, we need financial support. For all three trips, we need a total of approximately $17,000. It's a lot, and we definitely can't do it alone. We know that God has a plan to bring in every penny of that and we are excited to see it happen.
URGENT NEED!
Our first expense is to purchase Scott's ticket to Uganda. We are using a travel agent and he was able to put on hold until THURSDAY a ticket for just $1365 - this is an incredible deal - but we don't have any of it set aside yet! Can you help us get there?
There are two ways to send financial help!
1. Mail a check to us at: 3624 NE Everett St. Camas, WA 98607. You can make the check payable to Living Water Community Church and put "Janku" on the memo.
2. Send us money via PayPal using the email address: nwhandymancan@gmail.com.
Thank you all for supporting us in these trips - we are excited to see God work on each of them! We truly do covet your prayers, encouragement and support!
They needed someone with construction experience to go on short term trips to support their missionaries with special tasks that ultimately would enhance and grow their on-going missions work around the world. They have presented us with various opportunities over the last two years, but after prayer, none of them felt right, or the timing was not right for our family. This year, they have three opportunities that we felt led to say "yes" to!
UGANDA - August 30-September 14, 2013
On this trip, Scott will be traveling with four other highly skilled craftsmen to work with a single female missionary. Her house had burned when she was away on a furlough. Although she and her adopted children are living in the partially repaired home (it had masonry walls), it still needs a lot of work, including a kitchen and running hot water! The team plans to provide her with a kitchen and solar panels to give her these necessities! They are also hoping to pour a concrete play yard for the children at the school where her adopted daughters attend.
LONDON - October 25 - November 5, 2013
The entire family has been invited to help WHM missionary and church planter Chris Hatch run a VBS! We will also be working with some homeless ministries and getting to know the families in the area that is largely Muslim. We will be joined by Dana Dirksen and the Songs for Saplings team on this trip. (If you have children, you want to get to know their music!) The VBS materials we are using were written just for them, with a construction theme and we will be "practicing" by using the same materials for the kids from our home church, Living Water, this summer. There will also likely be another team member going along with us as well.
CHILE - January 2014
Scott will again be traveling with a group of skilled tradesmen. This time they will begin construction on a home for a local pastor. (It will be completed in two other planned trips.) The home will allow the pastor to focus full-time on his ministry. Many local pastors are required to work outside of their ministries in order to pay rents.
HOW CAN YOU HELP?
I'm also glad you asked that question. First, we need prayer. As business owners, it's a little frightening to leave the business for these trips. It's also challenging to take our entire family on a trip. However, we feel confident that the Lord will be going with us and will provide for us every step of the way.
Secondly, we need financial support. For all three trips, we need a total of approximately $17,000. It's a lot, and we definitely can't do it alone. We know that God has a plan to bring in every penny of that and we are excited to see it happen.
URGENT NEED!
Our first expense is to purchase Scott's ticket to Uganda. We are using a travel agent and he was able to put on hold until THURSDAY a ticket for just $1365 - this is an incredible deal - but we don't have any of it set aside yet! Can you help us get there?
There are two ways to send financial help!
1. Mail a check to us at: 3624 NE Everett St. Camas, WA 98607. You can make the check payable to Living Water Community Church and put "Janku" on the memo.
2. Send us money via PayPal using the email address: nwhandymancan@gmail.com.
Thank you all for supporting us in these trips - we are excited to see God work on each of them! We truly do covet your prayers, encouragement and support!
Monday, March 11, 2013
Not What We Had Planned.
Another post was written and waiting to be posted. It's been deleted.
A few weeks ago, on Facebook, I saw a post asking if anyone was willing to adopt or help a little girl from Ethiopia - just 2 months old, alone in the world, and desperately in need of surgery for spina bifida and hydrocephalus - the same diagnosis our son Elijah has. But her case was more severe and she was stuck a million miles away. And there were no doctors that could help her there. And to get her here, would take a miracle. And really, did we have room for a number six?
But somehow through all those questions, we clearly knew she was ours. We made a phone call. I half expected them to tell me that a dozen other families further along in the adoption process had already stepped forward. I didn't even have a passport and we didn't have the thousands of dollars it would take to get her here. Scott took one look and said "Bring her home."
And so we took the next step. And the next.
We learned that where she came from, a birth defect might as well be a death sentence. They believe that it is a curse and they must rid the village of it. So it was a miracle that she was taken to a hospital at just 8 hours old. Surely God had big plans for this tiny girl. So we kept taking steps to bring her home safely.
And we thought we finally had all the pieces, we had enough information to get her treatment, in Ethiopia. It would just take a few more phone calls.
But it was too late.
Over the weekend, little Mimi ran into the arms of Jesus. We never got to hold her, but we loved her.
A love that is real and is only possible because we were also orphans that have been rescued by a Savior that knew us before we were born. By a Savior that loves us more than we can imagine, despite the fact that we are broken and defective at birth.
She was loved. And so are we and because of that, we can continue to love "the least of these." Even if it means it hurts. It was worth it.
A few weeks ago, on Facebook, I saw a post asking if anyone was willing to adopt or help a little girl from Ethiopia - just 2 months old, alone in the world, and desperately in need of surgery for spina bifida and hydrocephalus - the same diagnosis our son Elijah has. But her case was more severe and she was stuck a million miles away. And there were no doctors that could help her there. And to get her here, would take a miracle. And really, did we have room for a number six?
And so we took the next step. And the next.
We learned that where she came from, a birth defect might as well be a death sentence. They believe that it is a curse and they must rid the village of it. So it was a miracle that she was taken to a hospital at just 8 hours old. Surely God had big plans for this tiny girl. So we kept taking steps to bring her home safely.
And we thought we finally had all the pieces, we had enough information to get her treatment, in Ethiopia. It would just take a few more phone calls.
But it was too late.
Over the weekend, little Mimi ran into the arms of Jesus. We never got to hold her, but we loved her.
A love that is real and is only possible because we were also orphans that have been rescued by a Savior that knew us before we were born. By a Savior that loves us more than we can imagine, despite the fact that we are broken and defective at birth.
She was loved. And so are we and because of that, we can continue to love "the least of these." Even if it means it hurts. It was worth it.
Sunday, February 24, 2013
On Being Pregnant
As I (cough, cough) enjoy my last days of what we expect to be our last pregnancy, I wanted to reflect a little on the privilege the Lord has given us to bear children. There was a point when I was told that due to polycystic ovaries, it would be difficult to get pregnant and would likely miscarry if I did. Within our first year of marriage, we had no trouble getting pregnant, in fact, we were pregnant within the first six months! However, after 17 weeks, we lost the baby to cancer - a very rare thing in utero, resulting in two DNC's to ensure there were no cancerous cells left behind.
Six months later, we were pregnant again with Grace, who turned nine one week ago. The pregnancy was fairly uneventful, but the delivery was difficult. I hemhorraged. Grace had the cord around her neck and wasn't breathing for the first few moments. We both recovered fine.
Then another miscarriage. Then Micah. We had a big scare during his pregnancy due to an ultrasound tech doing a poor job of taking measurements - but he was healthy and his delivery was very fast!
Then Elijah - his pregnancy was plagued with problems, resulting in 17 ultrasounds over the course of the nine months. His delivery was smooth, but he was vomiting for the first few days and earned his first of what would ultimately be many, many hospital stays.
Then two miscarriages. Then Gideon, a more difficult pregnancy resulting in high blood pressure and an induction, and then more blood pressure problems afterwards. My pelvis was also worn out from another pregnancy, and it was advised that maybe this should be it for us.
And now we are days away from welcoming number five, a little girl they tell us! We think this will truly be it. This mom is tired and not getting any younger. At the OB office, there was another mom that gave her birthdate at check in and I was shocked to hear a year that started with nineteen -ninety, mine starts with nineteen seventy. Wow!
Overall, my pregnancies have gone smooth. I've been blessed by wonderful children and we know that the Lord has brought us each little personality for a reason and given them to us as the perfect parents for this particular child (although far from feeling perfect in the moment to moment each day). Each one has shaped and molded our family in a different way and been a part of making us who we are. I have loved being pregnant - partly because I can eat whatever and for once my metabolism works (I've gained less than ten pounds with any pregnancy, and lose it all within the first two days) - but mostly I enjoy feeling the baby inside me and dreaming of how this baby will be different than the others. I've even enjoyed the miracle of giving birth. I'm priveleged to have delivered them all naturally, and with the exception of Grace, without an epidural. So many haven't experienced this.
So today, despite really wanting this baby out, I'm thankful to be pregnant. I'm thankful that God allowed us to carry four, soon to be five, pregnancies to term and deliver healthy babies. I'm thankful for the four babies we'll meet someday in heaven. I'm thankful that nearly eleven years after being married, we are completing this phase of our family and aren't struggling to conceive like so many we know have dealt with and like the doctor predicted would be our path.
I know this isn't profound stuff, but I really just wanted to reflect on how the Lord has blessed us for a moment before this phase is complete.
Six months later, we were pregnant again with Grace, who turned nine one week ago. The pregnancy was fairly uneventful, but the delivery was difficult. I hemhorraged. Grace had the cord around her neck and wasn't breathing for the first few moments. We both recovered fine.
Then another miscarriage. Then Micah. We had a big scare during his pregnancy due to an ultrasound tech doing a poor job of taking measurements - but he was healthy and his delivery was very fast!
Then Elijah - his pregnancy was plagued with problems, resulting in 17 ultrasounds over the course of the nine months. His delivery was smooth, but he was vomiting for the first few days and earned his first of what would ultimately be many, many hospital stays.
Then two miscarriages. Then Gideon, a more difficult pregnancy resulting in high blood pressure and an induction, and then more blood pressure problems afterwards. My pelvis was also worn out from another pregnancy, and it was advised that maybe this should be it for us.
And now we are days away from welcoming number five, a little girl they tell us! We think this will truly be it. This mom is tired and not getting any younger. At the OB office, there was another mom that gave her birthdate at check in and I was shocked to hear a year that started with nineteen -ninety, mine starts with nineteen seventy. Wow!
Overall, my pregnancies have gone smooth. I've been blessed by wonderful children and we know that the Lord has brought us each little personality for a reason and given them to us as the perfect parents for this particular child (although far from feeling perfect in the moment to moment each day). Each one has shaped and molded our family in a different way and been a part of making us who we are. I have loved being pregnant - partly because I can eat whatever and for once my metabolism works (I've gained less than ten pounds with any pregnancy, and lose it all within the first two days) - but mostly I enjoy feeling the baby inside me and dreaming of how this baby will be different than the others. I've even enjoyed the miracle of giving birth. I'm priveleged to have delivered them all naturally, and with the exception of Grace, without an epidural. So many haven't experienced this.
So today, despite really wanting this baby out, I'm thankful to be pregnant. I'm thankful that God allowed us to carry four, soon to be five, pregnancies to term and deliver healthy babies. I'm thankful for the four babies we'll meet someday in heaven. I'm thankful that nearly eleven years after being married, we are completing this phase of our family and aren't struggling to conceive like so many we know have dealt with and like the doctor predicted would be our path.
I know this isn't profound stuff, but I really just wanted to reflect on how the Lord has blessed us for a moment before this phase is complete.
Wednesday, December 21, 2011
So Elijah landed in the hospital - again. Things had been going pretty good for the little guy throughout the summer. His bowel regimen, despite a few hiccups along the way seemed to be going well. He was finally (mostly) able to make it into the restroom and stay clean and dry all day. It was big deal when he turned five and also felt like a big boy. However, in early October, we started noticing less and less success. We took him to the gastroenterologist, who wrote it off and said we were just waiting until he was older and would better tolerate a surgery or further testing. But things continued to decline and while we were travelling in Michigan to visit family, it became clear that he was obstructed. We tried the normal cleanout (which isn't for sissies) and nothing happened. We waited until we got home and kept trying. Finally, the dr. decided that we should admit him for a clean out. Typically this isn't a fun experience, but it's quick, like less than 24 hours and a gallon of laxatives. Elijah took five days and ten gallons.
Obviously, things had gone significantly wrong. A new Dr. was assigned to us, and we really liked her. She thought it would be good to rule out a couple of things, and scheduled a colonoscopy and several biopsies. We didn't really expect them to show much, but were necessary to rule out a few other conditions that would have required a different approach.
When he was almost one, he had a surgery to cut his spinal cord, it was necessary, but left residual damage. This was one of the functions that was damaged. They've now decided Elijah's colon is paralyzed. Therefore, it simply doesn't move the food through. Bloodwork also shows that his body isn't doing a good job of absorbing nutrients from the food he eats. So, we were put in touch with surgery. By God's provision, the surgeon we were assigned had recently moved here from Cincinatti Colerectal Center for Children, and had experience with kids similar to Elijah. He will be performing a MACE procedure, which is basically a stoma (hole) that connects his bowel to the outside of his abdomen to allow him to flush his system each day with a cleanout solution. This should then allow him to be clean the rest of the day.
Yeah, it isn't ideal, but it's better than anything else available.
The biggest setback has been Elijah's behavior and attitude. He is really angry. He understands to a degree what will happen in the coming weeks. He is embarrassed about the constant accidents between now and then, even though he knows he can't help it. He hits me sometimes for no reason, other than he knows he's angry. He told his brother that he wished God would break his bowels too (This happened when he was having bladder trouble too.) I think it means he feels like he's being picked on. There is only one other child in the area that the surgeon knows of that has had a MACE procedure. So we are kind of lost as to how to help a five year old, who doesn't reason very well be okay with everything going on.
PRay for our whole family. Patience is needed. Sleep is needed. Faith is needed. We feel blessed in many ways this year, but it is still a big, big strain on the family. January will be hard. We know God is in this, and are thankful for the big and little ways, He has been seen - providing a surgeon locally; a youth pastor who is willing to talk with Elijah; giving us peace and rest; providing a telephone that rings with new customers, although I have no time to go drum up business, all of our guys are very busy. There's more I haven't counted. Thanks for praying, thanks for encouraging us when you see us.
Obviously, things had gone significantly wrong. A new Dr. was assigned to us, and we really liked her. She thought it would be good to rule out a couple of things, and scheduled a colonoscopy and several biopsies. We didn't really expect them to show much, but were necessary to rule out a few other conditions that would have required a different approach.
When he was almost one, he had a surgery to cut his spinal cord, it was necessary, but left residual damage. This was one of the functions that was damaged. They've now decided Elijah's colon is paralyzed. Therefore, it simply doesn't move the food through. Bloodwork also shows that his body isn't doing a good job of absorbing nutrients from the food he eats. So, we were put in touch with surgery. By God's provision, the surgeon we were assigned had recently moved here from Cincinatti Colerectal Center for Children, and had experience with kids similar to Elijah. He will be performing a MACE procedure, which is basically a stoma (hole) that connects his bowel to the outside of his abdomen to allow him to flush his system each day with a cleanout solution. This should then allow him to be clean the rest of the day.
Yeah, it isn't ideal, but it's better than anything else available.
The biggest setback has been Elijah's behavior and attitude. He is really angry. He understands to a degree what will happen in the coming weeks. He is embarrassed about the constant accidents between now and then, even though he knows he can't help it. He hits me sometimes for no reason, other than he knows he's angry. He told his brother that he wished God would break his bowels too (This happened when he was having bladder trouble too.) I think it means he feels like he's being picked on. There is only one other child in the area that the surgeon knows of that has had a MACE procedure. So we are kind of lost as to how to help a five year old, who doesn't reason very well be okay with everything going on.
PRay for our whole family. Patience is needed. Sleep is needed. Faith is needed. We feel blessed in many ways this year, but it is still a big, big strain on the family. January will be hard. We know God is in this, and are thankful for the big and little ways, He has been seen - providing a surgeon locally; a youth pastor who is willing to talk with Elijah; giving us peace and rest; providing a telephone that rings with new customers, although I have no time to go drum up business, all of our guys are very busy. There's more I haven't counted. Thanks for praying, thanks for encouraging us when you see us.
Tuesday, August 23, 2011
Our Miracle is Five!
Elijah (our third) is turning five today! Four years ago today, Elijah weighed 10 lbs on his one year birthday. In fact he was two ounces shy, but the nurse fudged it so he could have surgery. Four years ago today, we didn't know if Elijah would walk, talk, or even make it to today. Four years ago today, we were very scared, but afraid to say how scared we were, because we didn't want to admit that it was bad. We were even afraid to pray. The elders at our church asked if they could pray over him, we told them it wasn't that bad; we let them do it anyway (and I'm glad we did!) My parents called everyday, most days I told them only the good things, so I wouldn't have to remember anything bad.
They cut his spinal cord in surgery that day, because it was tied in a knot around his spine. They weren't sure how much it would help, if at all, but God knew. We were in the one city, at the one hospital, with the one surgeon, who knew exactly what was happening and how to fix it. And she did because God placed us there so that He could be glorified!
Three long hours after they took him back, the surgeon came to tell us that all had gone well. And that Elijah should lay on his back as much as possible for the next five days, and we would stay with him at the children's hospital while he rested for several days. Two hours after getting out of surgery, he stood up and threw himself over the railing of his crib, landed on the IV stand and needed steri-strips above his eye. We were so excited! He used his legs, and his arms! He did great for two weeks.
But then we had setback after setback, as he would improve in the hospital and as soon as we went home, he'd regress. His immune system was shot and he had an infection that went undetected for nine months, resulting in nine months of in and out hospitalizations. And Elijah was sleeping for 22 hours each day. He was a different child than before the surgery, than before he'd been sick. Eventually, they figured out the right combination of antibiotics and he slowly got stronger.
Then we realized that his bladder and bowels were not functioning properly. He had in a catheter for several months starting just last summer, but God once again provided the right doctor just at the right time. One hour before he would have had a colostomy, the surgeon made a phone call and we walked across the hospital to a gastro doctor that we'd called before and were told he didn't have any opening until July (it was April). And the surgery we thought was inevitable and was the opposite of what we wanted was cancelled. A long weekend and many months later and it is today.
Elijah is turning five today! He is a wealthy weight and height and in the 50th percentile for his age! He can walk, run, jump and play like every other child his age. He can talk, and play games, and tell jokes. He can stay awake for an entire day and fall asleep exhausted at night from all the fun he's had. He has been using the potty successfully for four whole months and never has accidents and doesn't have any extra bags or tubes to make it happen!
So more than usual, we have a lot to celebrate today. And a lot to praise God for! So, today, as I watch Elijah swim in the pool, run across the not so freshly mowed yard, and hear him shout with excitement over his cake and presents, I will be praising God for every moment that He has given us to enjoy our n0t-so-little-anymore Miracle!
Sunday, August 21, 2011
Witness to Tragedy
Yesterday, the warmest Saturday that the area has seen all summer and the first Saturday in several weeks that my husband hasn't had to work, our entire family was loaded in the truck and headed up the gorge to put the boat in the water. Suddenly, we became witness to a tragic accident. We were several cars behind the accident, so didn't see everything clearly. But what was clear is that a man, partying with his friends had fallen out of a moving convertible. By the time Scott and I pulled over and ran to help (we were both trained EMT's and firefighters), it was obvious that the man wasn't going to make it. Despite this fact, we attempted chest compressions, not quite willing to concede hope.
But it's really what we saw next that shocked everyone the most and has bothered me since. The driver of the vehicle he was in, and one other passenger, turned the car around, came back and looked at their "friend" and then drove off back towards town. I understand they likely panicked and didn't know how to respond. They had likely been drinking and were scared. But it still seems especially callous, and even more so that it is the next morning and they haven't come forward even to give a name to the victim.
I'm not sure why this has stuck with me for so long, I mean while working with the fire department, I saw my share of trauma and it didn't really bother me. I think the best way I can put it is that it somehow it bothers me and makes me wonder, would my friends do the same to me or would I do the same to them. Obviously I don't expect to find myself either driving or being the person standing while driving at excessive speeds on a highway, but in life, we often see someone fall in other ways. And I'm certain there have been times that my fear of getting involved in the mess or just not caring enough has caused me to leave my friends on the side of the road when they needed help. I can remember one conversation with a friend that I'd grown up with who was visiting from across the country; she was telling me that she was considering a divorce and although I talked her through it that night and discouraged her, I never followed up. She was across the country and I didn't have time to take care of the problems she was facing and become involved. I've now lost contact with her and always regret the way I handled it.
Sticking around someone that's been hurt or had a bad fall is hard. You have to say difficult things, you can't be in a cozy spot pretending all is right, you have to get caught up in the messiness of someone else's life. And it isn't usually the choice that going to gain you popularity points either. I find it a lot easier to stand at a distance and gossip with others about how I would never be caught in that situation or what I would have done differently. Maybe this is a challenge to me to stop and look around, to be willing to be there when someone falls, to be willing to stop what I'm busy with and put others first.
And it's also a picture of what Christ did for us - we were all fallen, unable to get up and unable to do anything for ourselves and Christ was willing to die for us, to give us his name, his identity, so that we may have real life.
.
Monday, May 2, 2011
Osama bin Laden and Death
Last night at home group, we listened to Piper teach about living and dying to the glory of God. Then immediately after returning home, I learned of Osama bin Laden's death. My gut reaction was one of happiness and joy, maybe even celebration--probably similar to what most Americans felt. I almost broke out in spontaneous song: "Ding, Dong, the Wicked Witch is Dead..." But resisted.
However upon greater reflection, it occured to me that God was probably not rejoicing. In fact, we are told exactly how God feels about "the death of the wicked":
And the fact that bin Laden's life was one spent promoting evil, does not make him any more deserving of hell than you or I. And just like God loves me, he loves Osama bin Laden. And God isn't rejoicing that Osama is in hell. He would rather he had turned from evil and LIVE. Indeed, that sinners go to hell is truth, but it is also tragic.
You see, when a believer dies, we can say like Paul "to die is gain." But the death of an evil person is not gain, it is only a warning of what would be our fate, the fate of every person that ever lived, good or bad, if it weren't for the grace of God.
But those of us who are living, we have been called to a single purpose - to live for the glory of God. And one day, to die in such a way that will be gain.
However, on the flip side, I do believe that in a way, the death of someone like bin Laden is also a victory. God promises victories over His enemies. And it is only through punishment and death that there is victory. It is glorifying to God when there is victory over evil. And ultimately it is a picture of the judgement day to come. That day when we will all be judged. And our Creator will either see Christ in us or will not. If Christ is not in us, our eternal fate and judgement will be the same as this man who left Americans cheering in the street at his death.
However upon greater reflection, it occured to me that God was probably not rejoicing. In fact, we are told exactly how God feels about "the death of the wicked":
Of course, this is consistent with who God is. We all feel that Osama bin Laden got what was coming to him, he deserved to die; he did, after all, plan and fund the deaths of thousands of Americans. He did instigate a war that has cost this country billions in dollars and hundreds of lives. If he didn't deserve to die, who does? Osama died and went to hell (Yes, Rob Bell, he went to hell.) where he will suffer for eternity. And he deserved it. But so do I. So do you.
And the fact that bin Laden's life was one spent promoting evil, does not make him any more deserving of hell than you or I. And just like God loves me, he loves Osama bin Laden. And God isn't rejoicing that Osama is in hell. He would rather he had turned from evil and LIVE. Indeed, that sinners go to hell is truth, but it is also tragic.
You see, when a believer dies, we can say like Paul "to die is gain." But the death of an evil person is not gain, it is only a warning of what would be our fate, the fate of every person that ever lived, good or bad, if it weren't for the grace of God.
But those of us who are living, we have been called to a single purpose - to live for the glory of God. And one day, to die in such a way that will be gain.
However, on the flip side, I do believe that in a way, the death of someone like bin Laden is also a victory. God promises victories over His enemies. And it is only through punishment and death that there is victory. It is glorifying to God when there is victory over evil. And ultimately it is a picture of the judgement day to come. That day when we will all be judged. And our Creator will either see Christ in us or will not. If Christ is not in us, our eternal fate and judgement will be the same as this man who left Americans cheering in the street at his death.
Thursday, April 28, 2011
6 Weeks Makes a Life Changing Difference
I hadn't posted anything lately about Elijah and thought an update was long overdue. Apparently I am as guilty as most about being quick to let people know when things are going well and ask for prayer, but I've been slow to give praise for the immense good that has happened. Elijah has had a complete turn around and now has been able to use the toilet normally for six weeks -- without surgery! The prognosis is great - although there is a small section of his bowel that does not function, however with minor daily laxatives, he is able to keep things moving. He still has painful bladder spasms 3-5x each week, and has a few other minor hiccups. But overall, we are thankful to report, that he is a healthy, happy, normal, almost-five-year-old! So thank you for praying with us through this and thank you for asking (many of you did) how he was. Now join us in praise for the incredible turn around that we were told wasn't possible!
Friday, March 11, 2011
No Surgery, for now...
For now, surgery has been delayed indefinitely. We met with the surgeon today, who has decided that he wants to have more information about the root cause of Elijah's bowel issues before moving forward. Basically, not enough tests have been done. Also, Elijah's bowels are still completely full. I didn't fully understand how, after changing many, many diapers every day that this could be even remotely possible, but the scans don't lie. Apparently, there is blockage and the miralax is just pushing stuff around the blockage. Our orders for the weekend are twice a day ADULT sized enemas and twice a day ADULT dose of miralax.
So, on Monday, they will repeat the scan, if he is still full, then they will admit him for a bowel cleanout. Yeah, that doesn't sound fun. Then they will do an enema contrast to see the shape of his bowels. Finally, they will do a bowel biopsy to determine which part of the nerves are dead - and which are not. If there is enough functioning bowel, they may be able to do a "pull-through" procedure that will allow him to function fairly normally, but with a section of the bowel removed and the good stuff all connected together. This is only a possibility.
Another possibility is that by cleaning his system out - allowing him a clean start, it would allow his body to "learn" how to control his bowels. They aren't holding out a lot of hope for this, but think we should try.
Finally, we could still end up with a colostomy. Again, not what we want, but one way or another, we think that we have a good team of doctors that is committed to quickly running more tests and assuring us that it is the right move, right now.
I feel exhausted from the quick change of plans, but happy to have more answers before moving forward. I hate giving the enimas - it is torture for Elijah and the first one didn't produce a lot of results.
Pray that we'll get through the weekend first and have more answers on Monday. We go in for a scan first thing and then see the doctor again at 11.
So, on Monday, they will repeat the scan, if he is still full, then they will admit him for a bowel cleanout. Yeah, that doesn't sound fun. Then they will do an enema contrast to see the shape of his bowels. Finally, they will do a bowel biopsy to determine which part of the nerves are dead - and which are not. If there is enough functioning bowel, they may be able to do a "pull-through" procedure that will allow him to function fairly normally, but with a section of the bowel removed and the good stuff all connected together. This is only a possibility.
Another possibility is that by cleaning his system out - allowing him a clean start, it would allow his body to "learn" how to control his bowels. They aren't holding out a lot of hope for this, but think we should try.
Finally, we could still end up with a colostomy. Again, not what we want, but one way or another, we think that we have a good team of doctors that is committed to quickly running more tests and assuring us that it is the right move, right now.
I feel exhausted from the quick change of plans, but happy to have more answers before moving forward. I hate giving the enimas - it is torture for Elijah and the first one didn't produce a lot of results.
Pray that we'll get through the weekend first and have more answers on Monday. We go in for a scan first thing and then see the doctor again at 11.
Thursday, March 3, 2011
Decision Made
We will not be taking Elijah to Cincinnati. After further discussion with the intake nurses there, it appeared as if their treatment is not what we feel would be best for Elijah. It was very clear after reading more on their website and the conversation this morning with the nurse, what our decision would be. We are very thankful for this clarity. The treatment they were recommending would include a daily routine that would really restrict Elijah *every*single*day*for*the*rest*of*his*life! They doubted how much success we would have based on his age and said that he would likely end up with a colostomy anyway. Furthermore, many children who have success with the program, feel so tied down by it, that they opt for a colostomy in their teenage years.
So it obviously isn't the breakthrough we thought it might be. However, some good news did come in today. The gastroenterologist, who had previously only reviewed Elijah's chart, but didn't have any openings to see him, has had a cancellation for tomorrow and Elijah got the appointment. I will feel much better having spoken to him in person and having the opportunity to ask a lot of questions. Also, Elijah is at Roxanne's today and at noon she said he had gone potty on the toilet, twice in the morning. This has never happened at home, so it gives me hope that he might have some urinary control, but loses it only as his bowels back up. Or maybe enough control to go on a timed voiding schedule?? What this means is that with a colostomy, he may not need catheters in any form?! Only time will tell, (and honestly, we'll know next week) but wouldn't that be wonderful? So tonight, we will rest much better, knowing that the Lord is guiding us on this journey. Day by Day!
So it obviously isn't the breakthrough we thought it might be. However, some good news did come in today. The gastroenterologist, who had previously only reviewed Elijah's chart, but didn't have any openings to see him, has had a cancellation for tomorrow and Elijah got the appointment. I will feel much better having spoken to him in person and having the opportunity to ask a lot of questions. Also, Elijah is at Roxanne's today and at noon she said he had gone potty on the toilet, twice in the morning. This has never happened at home, so it gives me hope that he might have some urinary control, but loses it only as his bowels back up. Or maybe enough control to go on a timed voiding schedule?? What this means is that with a colostomy, he may not need catheters in any form?! Only time will tell, (and honestly, we'll know next week) but wouldn't that be wonderful? So tonight, we will rest much better, knowing that the Lord is guiding us on this journey. Day by Day!
Wednesday, March 2, 2011
Making Big Decisions Fast
So last week, the urologist, gastroenterologist and pediatrician all agreed to move forward with colostomy and placement of a supra pubic catheter. We've been giving Elijah a Miralax treatment to try and clean him out. Although its been working to the tune of many diapers a day, it hasn't been working to the end of cleaning him out. The x-ray today still showed a good amount of stool left. They also removed the catheter for a few days, because his urethra was irritated so they wanted to give it a rest.
Yesterday, the surgeon worked with Elijah's doctor and moved his schedule around to make an opening to see Elijah next Friday, the 11th, for a consult and if there was time, he might do the surgery then... (BIG IF, since the doctor is on call that day.)
Then, today, we saw the urologist again, and he had gotten information and is recommending that we stop moving forward with the colostomy and instead take him to Cincinnati Children's Hospital Colorectal Center which has treated a patient very similar to Elijah with success. This of course would be a big step and a big deal for Elijah, for our family life during his treatment, which could take a long time.
So now, we just don't know what to do... Pray for wisdom for us, and the doctors. Pray for Elijah to be comfortable and to empty his bowels.
Yesterday, the surgeon worked with Elijah's doctor and moved his schedule around to make an opening to see Elijah next Friday, the 11th, for a consult and if there was time, he might do the surgery then... (BIG IF, since the doctor is on call that day.)
Then, today, we saw the urologist again, and he had gotten information and is recommending that we stop moving forward with the colostomy and instead take him to Cincinnati Children's Hospital Colorectal Center which has treated a patient very similar to Elijah with success. This of course would be a big step and a big deal for Elijah, for our family life during his treatment, which could take a long time.
So now, we just don't know what to do... Pray for wisdom for us, and the doctors. Pray for Elijah to be comfortable and to empty his bowels.
Wednesday, February 23, 2011
Not Sleeping
It's been a busy day and I can't sleep. Scott's mom had come to surprise us for a visit a few weeks ago on Micah's 6th birthday, stayed through Gideon's first birthday and just traveled home today. It was good to see her and we really appreciated all the help she gave us around the house and with the kids, but are ready to get back to our own routines too.
However, last night I woke up several times thinking of a new question for the doctors. I just can't help but feel for E and what he will go through over the next few months - even if ultimately it's for his own good - it's hard to reason that with a four year old. Now tonight I'm laying awake again thinking of the same things.
Pray for all of us. It's sure to be a stressful time. And pray for Elijah that he will stop hurting. We've started the bowel cleanout regimen and it's working, but he is still in pain - albeit less often. He tends to revert to babytalk and behavior when he is hurting, and we have to draw a hard line to not allow this.
However, last night I woke up several times thinking of a new question for the doctors. I just can't help but feel for E and what he will go through over the next few months - even if ultimately it's for his own good - it's hard to reason that with a four year old. Now tonight I'm laying awake again thinking of the same things.
Pray for all of us. It's sure to be a stressful time. And pray for Elijah that he will stop hurting. We've started the bowel cleanout regimen and it's working, but he is still in pain - albeit less often. He tends to revert to babytalk and behavior when he is hurting, and we have to draw a hard line to not allow this.
Monday, February 21, 2011
A plan...
Today, Elijah saw Dr. O. For now the catheter stays put. Next week on Wednesday, we'll run a few tests and xrays and then schedule for a super-pubic catheter to be placed. We are also meeting with the gastroenterologist to talk about a colostomy. Not fun. Not fun. Not fun.
Sunday, February 20, 2011
Yes, It's been a while...
A friend of mine reminded me how long it's been since I wrote anything here, simply by sharing her new blog. So I thought I'd pop back over and give everyone an update - it seemed like a good time to do so anyway.
So ...since September, not too much has happened. Elijah was able to remove the foley catheter and begin the road to daily self cath. He didn't get far before a nasty insurance hiccup brought everything to a screeching halt. So we made do. At four, he is still in diapers and we thought a good first step to independence would be to learn to change his own diaper, wet or icky. He learned this new trick in no time flat! I think it really helps him feel like a "big boy".
However, just this past week and half, he seemed to have problems again. First, he had a nasty bladder spasm, that caused quite a scene and sent Daddy up the play structure at Chuck E. Cheese to retrieve him. Then the next night, he said his belly hurt and he threw up a few times. Not sure if it was bladder related, but seems like it might have been. After a week of toughing it out, with long dry spells between wet diapers, some barely wet, we took him to the ER at the advice of the pediatrician.
There was blood and thick icky urine when they cathed him and an infection. So now he has the foley catheter back in and we are meeting with Dr. O again on Monday to continue the path toward either daily self cath or perhaps a super pubic catheter and a colostomy. This has been recommended in the past, but I've been reticent, holding out hope that he would figure it out and get better. But as time passes, that seems less likely and getting him used to something more permanent is the goal.
Please continue to pray for us as we make decisions for Elijah and for him as he learns to cope with so much change and pain.
So ...since September, not too much has happened. Elijah was able to remove the foley catheter and begin the road to daily self cath. He didn't get far before a nasty insurance hiccup brought everything to a screeching halt. So we made do. At four, he is still in diapers and we thought a good first step to independence would be to learn to change his own diaper, wet or icky. He learned this new trick in no time flat! I think it really helps him feel like a "big boy".
However, just this past week and half, he seemed to have problems again. First, he had a nasty bladder spasm, that caused quite a scene and sent Daddy up the play structure at Chuck E. Cheese to retrieve him. Then the next night, he said his belly hurt and he threw up a few times. Not sure if it was bladder related, but seems like it might have been. After a week of toughing it out, with long dry spells between wet diapers, some barely wet, we took him to the ER at the advice of the pediatrician.
There was blood and thick icky urine when they cathed him and an infection. So now he has the foley catheter back in and we are meeting with Dr. O again on Monday to continue the path toward either daily self cath or perhaps a super pubic catheter and a colostomy. This has been recommended in the past, but I've been reticent, holding out hope that he would figure it out and get better. But as time passes, that seems less likely and getting him used to something more permanent is the goal.
Please continue to pray for us as we make decisions for Elijah and for him as he learns to cope with so much change and pain.
Wednesday, September 15, 2010
Next Week
It's been a while since I posted. We had a busy vacation and came home exhausted. While on vacation, Elijah's catheter deflated and fell out - so we had a quick ER trip to get that fixed. Then last Friday, there was bleeding around the catheter, which ended up being an infection. Other than those two hiccups, Elijah is adjusting well. He has learned to empty the catheter on his own and it has become a normal part of life for him.
Next week, we have the MRI and the possibility of colostomy. And we have to learn how to cath him at home - something I have been dreading. So please pray for us next week as we take the next step on this journey.
Next week, we have the MRI and the possibility of colostomy. And we have to learn how to cath him at home - something I have been dreading. So please pray for us next week as we take the next step on this journey.
Subscribe to:
Posts (Atom)