"Our life maybe a crazy life but it's our life" I'm married to a pastor of a small rural church, who is also the prison chaplain. We have 5 kids, each with their unique story. I love gardening & we all love the outdoors. Our life is not the way we planned it to be, but we are learning to trust God in every area. Come and read about our life as we live it to the fullest!
Friday, March 4, 2016
Surgery Finished
Surgery is over & everything went perfect. The doctor does feel that Jon had a slight heart attack but his heart seems not to be damaged. Please keep him in your prayers. Thank you all for the prayers & messages
Thursday, March 3, 2016
Surgery started early please pray
Update
They are doing emergency bypass surgery now. They took him back at 8 pm. He was having much more pain & there were concerns. Please pray
They are doing emergency bypass surgery now. They took him back at 8 pm. He was having much more pain & there were concerns. Please pray
Emergency Heart Surgery
Last night my husband complained of jaw pain. He thought he had a dental problem. His first thought was that the new toothpaste he was using had caused his gums to hurt. I looked and saw no issue. He couldn't pinpoint the pain, other to say it was in his jaw. So he was sitting in the living room while I was calling dentists to see if we could find one open. At the same time I was goggling "pain in jaw". I knew it was a symptom of a heart attack but since that was the only symptom he had I was unsure. We talked about him going to the ER to check things out and get a pain killer until we could get to our dentist today. I was frightened but thought I was over reacting since less than 2 weeks ago he got a clean bill of health from his yearly cardiology appointment. In fact he got a glowing bill of health. He sees a cardiologist just because heart disease is so rampant in his family.
However once he got to the ER and they did blood work, it showed his enzymes were elevated. Everything else was fine-EKG both of them were great. So they kept him and said that they'd do a heart cath this morning. I ended up going home at 3 am. I called Jon about 7;30 am and he told me he was having some jaw pain. He was given nitroglycin for pain several times and it would stop for awhile and then come back.
They got him in for the heart cath before I could get there. When I got there, they told me he was almost finished. When the nurse came out, I could tell something was wrong, she took me back to the doctor and he showed me the results. Jon has severe blockage in four major arteries. The doctor was as shocked as we were! He told me several times he did not expect this at all. They were not able to do stents.
Tomorrow morning he will have a quadruple bypass surgery. We are in shock!
I kept asking the doctor & staff questions about how this could happen to a man that is very close to being a Vegan and who exercises for hours a day! Their answer was Genetics - there was just no escaping it.
Thankfully he did not have a heart attack and there has been no damage to the heart muscle at all! That's HUGE & makes a difference in the outcome of surgery. The doctor told me that had we not come in, Jon was on the verge of a massive fatal heart attack. It was probably just a matter of 24-48 hours. He doubted that Jon could have survived the heart attack as there is so much blockage.
Again we are just in shock! Jon has always been so very careful about his diet and exercise. He uses self control and is very moderate in everything. I've always said if I was not married to him I'd be really heavy because I love everything that is bad to eat! But I've always tried to cook healthy for him and our family and that has also helped me to change my bad diet habits.
So please keep my husband in your prayers tomorrow morning and for his recovery the next six weeks. We are still wrapping our heads around this but the God that has brought us through so very much will bring us through this. God is faithful.
However once he got to the ER and they did blood work, it showed his enzymes were elevated. Everything else was fine-EKG both of them were great. So they kept him and said that they'd do a heart cath this morning. I ended up going home at 3 am. I called Jon about 7;30 am and he told me he was having some jaw pain. He was given nitroglycin for pain several times and it would stop for awhile and then come back.
They got him in for the heart cath before I could get there. When I got there, they told me he was almost finished. When the nurse came out, I could tell something was wrong, she took me back to the doctor and he showed me the results. Jon has severe blockage in four major arteries. The doctor was as shocked as we were! He told me several times he did not expect this at all. They were not able to do stents.
Tomorrow morning he will have a quadruple bypass surgery. We are in shock!
I kept asking the doctor & staff questions about how this could happen to a man that is very close to being a Vegan and who exercises for hours a day! Their answer was Genetics - there was just no escaping it.
Thankfully he did not have a heart attack and there has been no damage to the heart muscle at all! That's HUGE & makes a difference in the outcome of surgery. The doctor told me that had we not come in, Jon was on the verge of a massive fatal heart attack. It was probably just a matter of 24-48 hours. He doubted that Jon could have survived the heart attack as there is so much blockage.
Again we are just in shock! Jon has always been so very careful about his diet and exercise. He uses self control and is very moderate in everything. I've always said if I was not married to him I'd be really heavy because I love everything that is bad to eat! But I've always tried to cook healthy for him and our family and that has also helped me to change my bad diet habits.
So please keep my husband in your prayers tomorrow morning and for his recovery the next six weeks. We are still wrapping our heads around this but the God that has brought us through so very much will bring us through this. God is faithful.
Wednesday, March 2, 2016
Tarpon Springs
This week I was able to go on a "field trip" with two of my college friends. We decided to go to Tarpon Springs. It's been some years since I've been there and never with just grown ups LOL!
Just us girls!
All of us in Skeetchers!
We could have done a commercial.
For the record, Skeetchers are the most comfortable shoes ever!!!! I'm addicted!
she should have been an actress!
Way too good food! Despite all the walking we did, I came home and rode my exercise bike!
We visited the Greek Orthodox Church
All three of us were raised Pentecostal but it was funny we all whispered in this building!
But we had to finish out at the beach...at sunset....at Sunset Beach!
What a fun day!
Then I came home and played with Sarah who had missed me
UP
Down
Up again
She had been giggling and giggling....until I tried to start taking pictures! How does she know???
And OUT!
This picture was taken after she was asleep in this position for 10 minutes! How in the world does she do it???
Sarah is standing on her own and trying to take one or two steps before collapsing. This is what she was doing over a year ago but when she lost the tiny bit of sight that she had, then she stopped everything physical and regressed. She is just now feeling comfortable to try again. I love my baby girl!
Guest Blog
What can happen when one little boy (from a broken home) who's nickname was "Trouble," turns 180 degrees and goes the Right direction?
55 years later a white haired soon to be senior citizen, and new father of a family of five children can answer that question.
Kids have the amazing potential to impact our world - for better or worse.
5 years after being adopted at the age of 5 this young boy proceeded to burn down a church yet God interrupted his life by speaking to him when he knelt at an alter and asked God to forgive him. At the same time he made a deal with God if He ever wanted him to do anything just ask.
That's where things got interesting. God did speak to him that night and called him to be a missionary.
Now 50 years later that missionary, still hears God speaking to him and both he and his wife Sandy minister to thousands of impoverished children where they currently live in the Philippines. They feed malnourished kids thousands of meals annually, plus Help to provide free clean water, medical and dental services, school supplies, and meet other needs as they in turn teach the children how to have a personal relationship with their Creator. That ministry is called Family Circus Children's ministry. More information and stories are available at our website: Www.familycircus.org or by following Darrell Blatchley on FaceBook.
55 years later a white haired soon to be senior citizen, and new father of a family of five children can answer that question.
Kids have the amazing potential to impact our world - for better or worse.
5 years after being adopted at the age of 5 this young boy proceeded to burn down a church yet God interrupted his life by speaking to him when he knelt at an alter and asked God to forgive him. At the same time he made a deal with God if He ever wanted him to do anything just ask.
That's where things got interesting. God did speak to him that night and called him to be a missionary.
Now 50 years later that missionary, still hears God speaking to him and both he and his wife Sandy minister to thousands of impoverished children where they currently live in the Philippines. They feed malnourished kids thousands of meals annually, plus Help to provide free clean water, medical and dental services, school supplies, and meet other needs as they in turn teach the children how to have a personal relationship with their Creator. That ministry is called Family Circus Children's ministry. More information and stories are available at our website: Www.familycircus.org or by following Darrell Blatchley on FaceBook.
Thank You for investing in eternal lives!!!
-------------------------------------------------------------------------------------------------------------------------
The above was a guest blog from the new dad of 5 kids! Some pictures from their recent FIRST time dentist trip. You can follow their ministry at the above link or follow him on FB! I'm sorry I could not make the pictures larger, somehow our font didn't work well together.
Monday, February 29, 2016
Rare Disease Day 2016
Just a little over 12 years ago we heard the diagnosis of Peter's Anomaly. Back in 2004 there was ONE entry on the Internet about PA. That entry told nothing. The National Organization for Rare Diseases had a mention of Peter's. We occasionally were handed photocopies from various doctors' books but they were lacking in details also. Most of the doctors including one geneticist had to ask me what Peter's Anomaly was....It was a scary time.
Today I read this article http://www.wonderbaby.org/articles/parenting-child-rare-disease and it brought back so many memories.
I can remember thinking "Why couldn't Sam just have Down's Syndrome?" Then at least we'd know what to expect!
Still there is little info on Peter's Anomaly, but much more than there used to be. We've personally met four other families now with PA- there is a FB page/group but PA is different in every case and every child.
If you would have told me when Sam was tiny and in the NICU that one day we'd all travel to Ukraine and adopt a little girl with Peter's I would have thought that you were crazy LOL! But that's exactly what happened!
Sam and Sarah both have PA but are different. Sarah was only born with one eye and it was in much worse condition than Sam's. Her eye had many more abnormalities than Sam's does and at her best, she saw light only. Now her retina that was "in shreds" has detected and she sees nothing.
Sam was born with two eyes- both smaller than normal and one was very smaller. The smaller eye has had many more issues than the other eye. We did transplants in both eyes and the smaller eye rejected the transplant within weeks. We did the corneal implants on both eyes and the smaller eye ceased to function some years ago, also a retinal issue. In 2013 the implant had to be removed from that eye as it was causing him pain since the eye was shirking but the implant was not. It was a bit unnerving to look at to be honest. The implant would somewhat freely move around in that eye. When the implant was taken out, most of the remaining tissue was too. It's been challenging but his larger eye is doing great! This year will be 9 years since he received the implant! He sees more than light but is legally blind.
Both Sam and Sarah are handicapped intellectually. Neither really talk but they do both understand some of what we say to them- that's called receptive language. Sam does say Mama and No and occasionally will come out with another word or two. Both of them will verbalize sounds back and to with us. There's been a few times we have thought Sarah has said something too.
Sam can walk, run a little, climb up stairs, go down the slide and swing on the swing set. Sarah walks with a lot of help. She can't really figure out where her feet goes. She can swing herself for hours on the swing set and loves to be outside.
Sam is very mischievous, and loves to be naughty. But he is also a love sponge and is very attached to us. Just think of a tiny Dennis the Menace :)
Sarah is very easy going. She has been home for almost four years and really just started showing negative emotions in the past year or so. She will cry now if something doesn't go her way. But she is learning that her cries will get results and that is so good I love that she can cry now. The first year she was home, I can only remember her crying two times. Oh that's convenient but not emotionally healthy for her. She still doesn't cry much and is a very happy girl most of the time.
Sam got a lot of the 'extras" with Peter's, he has a heart murmur, there were concerns about his kidneys for quite a while, and he had issues with maintaining his blood sugar levels. He has some bone deformities and he is TINY. Sam is 12 years old, he just started wearing a size 8. But the only reason he wears an 8 is he has a round tummy- 8's are way too long on him and I have to hem everything. Small statue is often found in kids with Peter's.
Sarah on the other hand is healthy as a horse! Once she started gaining weight after we adopted her (at 5.5 years old she weighed just 19 pounds) she is catching up fast! When we first got home, I had to put away all the clothes I'd bought her and go buy a few baby clothes. She wore a size 12 months! Now 4 years later she wears a size 7/8! She is built thin, like a dancer so sometimes things are too big in the waist but she's catching up there too LOL!
Not all kids with PA have mental challenges. We met one little girl from China who is a genius. But overall, I think the majority have some difficulties in that area.
I've only met one other child with PA that had more overall issues than my kids and I don't think that little girl lived.
Now the ODD thing is neither Sam nor Sarah have the genetic marker for PA. Both have been "clinically" diagnosed with PA which means they have the symptoms, especially Sam. Both are enrolled in a clinical study through the University of Wisconsin. The researchers are really interested in Sam since he has so many characteristics of Peter's but it's not in his DNA. Last year they asked Jon and me to have more DNA testing done because the idea is that there HAS to be another marker for PA than what has been found. They hoped to find something in our DNA but thus far nothing has come up with any of us. We don't have the marker either so for Sam it was just a "happenchance" Sam does have a deletion in his DNA but as far as they can tell that doesn't correspond with PA. Sarah's DNA is completely "normal" as is her MRI.
Our kids are interesting that is for sure!
So is it scary to have a child, make that two, with a rare disease? It is but it's ok! After 12 years, I don't really obsess about the future, at this point, we figure we will deal with whatever comes our way.
Today I read this article http://www.wonderbaby.org/articles/parenting-child-rare-disease and it brought back so many memories.
I can remember thinking "Why couldn't Sam just have Down's Syndrome?" Then at least we'd know what to expect!
Still there is little info on Peter's Anomaly, but much more than there used to be. We've personally met four other families now with PA- there is a FB page/group but PA is different in every case and every child.
If you would have told me when Sam was tiny and in the NICU that one day we'd all travel to Ukraine and adopt a little girl with Peter's I would have thought that you were crazy LOL! But that's exactly what happened!
Sam and Sarah both have PA but are different. Sarah was only born with one eye and it was in much worse condition than Sam's. Her eye had many more abnormalities than Sam's does and at her best, she saw light only. Now her retina that was "in shreds" has detected and she sees nothing.
Sam was born with two eyes- both smaller than normal and one was very smaller. The smaller eye has had many more issues than the other eye. We did transplants in both eyes and the smaller eye rejected the transplant within weeks. We did the corneal implants on both eyes and the smaller eye ceased to function some years ago, also a retinal issue. In 2013 the implant had to be removed from that eye as it was causing him pain since the eye was shirking but the implant was not. It was a bit unnerving to look at to be honest. The implant would somewhat freely move around in that eye. When the implant was taken out, most of the remaining tissue was too. It's been challenging but his larger eye is doing great! This year will be 9 years since he received the implant! He sees more than light but is legally blind.
Both Sam and Sarah are handicapped intellectually. Neither really talk but they do both understand some of what we say to them- that's called receptive language. Sam does say Mama and No and occasionally will come out with another word or two. Both of them will verbalize sounds back and to with us. There's been a few times we have thought Sarah has said something too.
Sam can walk, run a little, climb up stairs, go down the slide and swing on the swing set. Sarah walks with a lot of help. She can't really figure out where her feet goes. She can swing herself for hours on the swing set and loves to be outside.
Sam is very mischievous, and loves to be naughty. But he is also a love sponge and is very attached to us. Just think of a tiny Dennis the Menace :)
Sarah is very easy going. She has been home for almost four years and really just started showing negative emotions in the past year or so. She will cry now if something doesn't go her way. But she is learning that her cries will get results and that is so good I love that she can cry now. The first year she was home, I can only remember her crying two times. Oh that's convenient but not emotionally healthy for her. She still doesn't cry much and is a very happy girl most of the time.
Sam got a lot of the 'extras" with Peter's, he has a heart murmur, there were concerns about his kidneys for quite a while, and he had issues with maintaining his blood sugar levels. He has some bone deformities and he is TINY. Sam is 12 years old, he just started wearing a size 8. But the only reason he wears an 8 is he has a round tummy- 8's are way too long on him and I have to hem everything. Small statue is often found in kids with Peter's.
Sarah on the other hand is healthy as a horse! Once she started gaining weight after we adopted her (at 5.5 years old she weighed just 19 pounds) she is catching up fast! When we first got home, I had to put away all the clothes I'd bought her and go buy a few baby clothes. She wore a size 12 months! Now 4 years later she wears a size 7/8! She is built thin, like a dancer so sometimes things are too big in the waist but she's catching up there too LOL!
Not all kids with PA have mental challenges. We met one little girl from China who is a genius. But overall, I think the majority have some difficulties in that area.
I've only met one other child with PA that had more overall issues than my kids and I don't think that little girl lived.
Now the ODD thing is neither Sam nor Sarah have the genetic marker for PA. Both have been "clinically" diagnosed with PA which means they have the symptoms, especially Sam. Both are enrolled in a clinical study through the University of Wisconsin. The researchers are really interested in Sam since he has so many characteristics of Peter's but it's not in his DNA. Last year they asked Jon and me to have more DNA testing done because the idea is that there HAS to be another marker for PA than what has been found. They hoped to find something in our DNA but thus far nothing has come up with any of us. We don't have the marker either so for Sam it was just a "happenchance" Sam does have a deletion in his DNA but as far as they can tell that doesn't correspond with PA. Sarah's DNA is completely "normal" as is her MRI.
Our kids are interesting that is for sure!
So is it scary to have a child, make that two, with a rare disease? It is but it's ok! After 12 years, I don't really obsess about the future, at this point, we figure we will deal with whatever comes our way.
Thursday, February 25, 2016
Rabbit's Trail.
Quick update on the children in the Philippines- I just sent a check for $5816 :) Thank you all for your giving! Their new family is planning on building a bedroom for the boys and a bedroom for the girls onto their house. Of course they are dealing with several medical issues, school and supplies, clothes.... What a blessing that we were able to be a small part of this! If any more funds come in, I will send another check to them:)
Last night's supper.....beef stew
Our Magic Bullet bit the dust recently after almost 4 solid years of service to Ms Sarah! It did it's job well!~! BUT our new friend Nutri Ninja is amazing!!! I feel like I went from the 1950's to the 21st century!!!! This thing is powerful!!!! It was only about $30 more and boy is it worth it!! Life is soooo much easier. It makes a difference when you use a machine several times daily,
When I went to pick out a new one, there were so many choices. I agonized over which one to pick- I'm really not exaggerating. Shopping tires me out mentally. I don't hate shopping but I don't want a lot of choices LOL, it makes it too hard to pick. In the town we live in, we have basically one department/mall like store. I do the majority of our clothes shopping there, at least for the guys and myself. It's just easier, not so many choices! The only thing is they don't have nice clothes for Sarah and Selah's sizes and by nice I mean, "little girlish" not "ho" clothes. My pet peeve is the size 7-16 girls' sizes clothes that look like adult clothes....UGH! Anyhow......
We are looking forward to our oldest son coming home tomorrow for a week of spring break! He is more than halfway through his second semester and loving it. This semester he is taking 16 hours and working 18 hours a week. He also has a girlfriend so he is a busy guy. We see him at least every other weekend and talk daily (usually) and text. It's not been as hard as I thought it would be for him to be gone. Last year just the thought of him leaving made my stomach lurch LOL. But I determined I wouldn't be a helicopter mom - I actually would not let myself call or text him for the firs few days except in response to his calls or texts. We are so happy for him with everything. He made all A's last semester except for one high B. He's on target for about the same this semester. He's having a blast even though he is extremely busy. It brings back memories of my years in college there. Except the freshmen are so much more sophisticated that we were!
Well tonight's blog was just a "rabbit's trail" all over the place wasn't it? Have a great weekend everyone! (a Rabbit's Trail is when a preacher is preaching and just totally goes off subject or all over the place)
The other morning, I took this picture of Sarah sleeping.
Compare it to the picture I took the night we got home from Ukraine. Sarah would sleep with her arms and legs up under her like a little turtle protecting herself. She slept in that position for years, but now she is relaxed. Most of the time she sleeps on her back now, which is a very vulnerable position for kids who have gone through trauma.
Notice she has the same blanket:)
I remember being so happy that night to have the girls home and all of us together under one roof. I remember falling asleep (after traveling for two days - through three countries- three different flights-8 time zones) happier and more content than I had ever been in my whole entire life..... it's literally a snap shot memory in my brain.
Last night's supper.....beef stew
Sarah's beef stew!
Our Magic Bullet bit the dust recently after almost 4 solid years of service to Ms Sarah! It did it's job well!~! BUT our new friend Nutri Ninja is amazing!!! I feel like I went from the 1950's to the 21st century!!!! This thing is powerful!!!! It was only about $30 more and boy is it worth it!! Life is soooo much easier. It makes a difference when you use a machine several times daily,
When I went to pick out a new one, there were so many choices. I agonized over which one to pick- I'm really not exaggerating. Shopping tires me out mentally. I don't hate shopping but I don't want a lot of choices LOL, it makes it too hard to pick. In the town we live in, we have basically one department/mall like store. I do the majority of our clothes shopping there, at least for the guys and myself. It's just easier, not so many choices! The only thing is they don't have nice clothes for Sarah and Selah's sizes and by nice I mean, "little girlish" not "ho" clothes. My pet peeve is the size 7-16 girls' sizes clothes that look like adult clothes....UGH! Anyhow......
We are looking forward to our oldest son coming home tomorrow for a week of spring break! He is more than halfway through his second semester and loving it. This semester he is taking 16 hours and working 18 hours a week. He also has a girlfriend so he is a busy guy. We see him at least every other weekend and talk daily (usually) and text. It's not been as hard as I thought it would be for him to be gone. Last year just the thought of him leaving made my stomach lurch LOL. But I determined I wouldn't be a helicopter mom - I actually would not let myself call or text him for the firs few days except in response to his calls or texts. We are so happy for him with everything. He made all A's last semester except for one high B. He's on target for about the same this semester. He's having a blast even though he is extremely busy. It brings back memories of my years in college there. Except the freshmen are so much more sophisticated that we were!
My Freshman picture
Me working at the cafeteria making sandwiches. It was a great way to meet guys. I got out asked out for my first college date after I got off work one night. We went to Disney's Night of Joy- that was a HUGE deal back then LOL But by the next semester I was able to get transferred to the Library-at least I didn't smell like hamburgers and fries after I got off work!
Well tonight's blog was just a "rabbit's trail" all over the place wasn't it? Have a great weekend everyone! (a Rabbit's Trail is when a preacher is preaching and just totally goes off subject or all over the place)
Subscribe to:
Posts (Atom)