I have been so thankful this holiday season for Mackynlee. This is a video from her first year of life. It is kind of lengthy. The first four minutes were shown in church the first time we took her. After that is just a family video of her first year.
This little girl has blessed our lives in so many ways!!
Sunday, December 26, 2010
Saturday, December 11, 2010
No news is good news!! Since my last post, all has been going great(other than normal stuff: stomach virus and ear infections). Mackynlee eats fine with no teeth. The neurologist released her! Yes, you read that correctly. One less doc on our list!! Yesterday she went to the heart doc. She was very pleased with everything. She has gained weight. Doc increased the amount of her meds due to increased weight.
Reflecting on last Christmas makes me cringe and makes me thankful. Last year Mackynlee had the feeding tube during this time. We were so stressed about feedings, time in between feedings, throwing up after feedings, etc. We are so blessed that our miracle is doing so good!! Last night I took the children to see some Christmas lights. I could barely keep Mackynlee in the car. She jabbered about the lights. She wanted to get closer to them.
Prayer Requests:
Pray Mackynlee's ear infections stop and we do not have to go to an ENT.
Coach Ray Haney is being moved to long term acute care. He is still on the vent. The long term acute care help people get off vents. Pray for his body to strengthen. Pray for God to give him comfort. Pray for strength for his family.
Pray for my grandmother. She is at home, but not doing well. Please pray for her caregivers as well.
Yesterday, the First United Methodist Church in Columbia had there 2nd annual CHILDREN's DAY OF PRAYER. Two of the prayer boards were pictures of children that have passed away in the last year. The prayer requests on the boards were for their families during this special, but difficult time of year. The song below will touch your heart. We all have our daily struggles(my third grader is not doing well in school, my husband is gone to work when I'd prefer him to be home to see the children sing in church, go get our Christmas tree,etc) but if we really compare our struggles to the ones who have lost children, ours does not seem so bad.
These are One Last Christmas Lyrics by Matthew West
It’s the news that no one hopes for,
Every parent’s greatest fear
Finding out the child you love so much
Might not make it through the year
Now the thought of spending Christmas
Without him just feels wrong
They’ve been praying for a miracle,
Now they’re praying he can just hold on
[Chorus]
For one last Christmas, one last time,
One last season when the world is right,
One more telling of the story,
One more verse of Silent Night,
They’d give anything so he could have
One last Christmas.
courtesy of OriginaLyric.Info
Middle of September
Still seventy degrees
Daddy climbs up in the attic
Brings down candles
Hangs the lights on all the trees,
Then the neighbors started asking
And pretty soon word got around
First it was the neighborhood,
Before too long they lit up that whole town.
[Chorus]
For one last Christmas, one last time,
One last season when the world is right,
One more telling of the story,
One more verse of Silent Night,
They’d give anything so he could have
One last Christmas.
Twenty-seventh of October,
His time was wearing thin
Friends and family, even strangers
That they didn’t know brought presents in
He was weak but he was smiling
Like there was nothing even wrong
They said he wouldn’t make it,
Looks like he got to see it after all
[Chorus]
For one last Christmas, one last time,
One last season when the world is right,
One more telling of the story,
One more verse of Silent Night,
They’d give anything so he could have
One last Christmas.
Original Lyrics Matthew West – One Last Christmas
Reflecting on last Christmas makes me cringe and makes me thankful. Last year Mackynlee had the feeding tube during this time. We were so stressed about feedings, time in between feedings, throwing up after feedings, etc. We are so blessed that our miracle is doing so good!! Last night I took the children to see some Christmas lights. I could barely keep Mackynlee in the car. She jabbered about the lights. She wanted to get closer to them.
Prayer Requests:
Pray Mackynlee's ear infections stop and we do not have to go to an ENT.
Coach Ray Haney is being moved to long term acute care. He is still on the vent. The long term acute care help people get off vents. Pray for his body to strengthen. Pray for God to give him comfort. Pray for strength for his family.
Pray for my grandmother. She is at home, but not doing well. Please pray for her caregivers as well.
Yesterday, the First United Methodist Church in Columbia had there 2nd annual CHILDREN's DAY OF PRAYER. Two of the prayer boards were pictures of children that have passed away in the last year. The prayer requests on the boards were for their families during this special, but difficult time of year. The song below will touch your heart. We all have our daily struggles(my third grader is not doing well in school, my husband is gone to work when I'd prefer him to be home to see the children sing in church, go get our Christmas tree,etc) but if we really compare our struggles to the ones who have lost children, ours does not seem so bad.
These are One Last Christmas Lyrics by Matthew West
It’s the news that no one hopes for,
Every parent’s greatest fear
Finding out the child you love so much
Might not make it through the year
Now the thought of spending Christmas
Without him just feels wrong
They’ve been praying for a miracle,
Now they’re praying he can just hold on
[Chorus]
For one last Christmas, one last time,
One last season when the world is right,
One more telling of the story,
One more verse of Silent Night,
They’d give anything so he could have
One last Christmas.
courtesy of OriginaLyric.Info
Middle of September
Still seventy degrees
Daddy climbs up in the attic
Brings down candles
Hangs the lights on all the trees,
Then the neighbors started asking
And pretty soon word got around
First it was the neighborhood,
Before too long they lit up that whole town.
[Chorus]
For one last Christmas, one last time,
One last season when the world is right,
One more telling of the story,
One more verse of Silent Night,
They’d give anything so he could have
One last Christmas.
Twenty-seventh of October,
His time was wearing thin
Friends and family, even strangers
That they didn’t know brought presents in
He was weak but he was smiling
Like there was nothing even wrong
They said he wouldn’t make it,
Looks like he got to see it after all
[Chorus]
For one last Christmas, one last time,
One last season when the world is right,
One more telling of the story,
One more verse of Silent Night,
They’d give anything so he could have
One last Christmas.
Original Lyrics Matthew West – One Last Christmas
Friday, October 29, 2010
October
This has been a hard month, as it has been for the past three years: October '08 we found out Mackynlee's diagnosis; October '09 we had her 2nd heart surgery, followed by seizures, a couple of MRI's, almost lost her, and after a long hospital stay coming home on a feeding tube for 6 months; Oct '10 she had her oral surgery(6 teeth removed and several capped) and now ear infections(that started while we were out of town) in both ears, a rash from the meds, a steroid shot, etc. wooooo!! Just exhausting!! I am so glad November is almost here. I am praying November will be better for our baby girl and us too. For some reason October is just not a good month for the Bedwells.
I have been feeling very overwhelmed lately. Mark is out of town(but will be home tonight for a few days.) Keeping up with Shelby's studying, the baby being sick, I've not even unpacked from our get-a-way last weekend, etc. All of you know how life can be sometimes!!! My devotion this morning was on "Perfect Peace". I just wanted to share!
Matthew 19:26
But Jesus looked at them and said, “With man this is impossible, but with God all things are possible.”
Perfect Peace
There once was a King who offered a prize to the artist who would paint the best picture of peace. Many artists tried. The King looked at all the pictures, but there were only two he really liked and he had to choose between them.
One picture was of a calm lake. The lake was a perfect mirror for peaceful towering mountains were all around it. Overhead was a blue sky with fluffy white clouds. All who saw this picture thought that it was a perfect picture of peace.
The other picture had mountains too. But these were rugged and bare. Above was an angry sky from which rain fell, in which lightening played. Down the side of the mountain tumbled a foaming waterfall. This did not look peaceful at all.
But when the King looked, he saw behind the waterfall a tiny bush growing in a crack in the rock. In the bush a mother bird had built her nest. There, in the midst of the rush of angry water, sat the mother bird on her nest ... perfect peace.
Which picture do you think won the prize?
The King chose the second picture.
Do you know why?
"Because," explained the King, "peace does not mean to be in a place where there is no noise, trouble, or hard work. Peace means to be in the midst of all those things and still be calm in your heart. That is the real meaning of peace."
Addendum -- John 16:33 (NLT) "I have told you all this so that you may have 'peace' in me. Here on earth you will have many trials and sorrows. But take heart, because I have overcome the world."
Saturday, August 28, 2010
EveryHeartHasAStory
I am participating in a blog event with other heart families. In this blog, I will retell our story from the beginning. I will try not to get to detailed neither too emotional.
July 2008: I go in for my yearly check-up to find out we were expecting our third child. BIG SURPRISE!!! At that time, we had a 6 year old(Shelby Grace) and a 1 and a half year old(Connor Mark) and were very content with the two children. We had picked and joked about having a house full of babies, but in reality, not ready for another baby. Oh well, ready or not, here she comes with many life lessons to teach us, our family, and many, many others.
October 2008: We were disappointed when my husband had to go into work and could not go to the ultrasound appointment to find out if he would get another baby girl or baby boy(that was all we were expecting to find out). So, he would call an hour after my appointment to find out what his special bundle of joy would be. My mom and Shelby(the proud big sis) accompanied me for the ultrasound. The tech went and got the doc during the ultrasound. All the two of them could tell me was they could not find all four chambers of our baby girl's heart. I asked over and over, "What does that mean?" Doctor Pace replied, "Go to Doc Perry(Diagnostic Specialist) in Jackson. You will probably deliver there and be transported out of state for surgery on her heart."
After leaving the office, I was in a daze. Shelby had an appointment across town with her pediatrician to check her back. Her gymanstic's teacher thought she may have scholiosis. While headed there, Mark called. I remember our conversation being very short. I was crying telling him what was going on. I know he felt so helpless not being home. I sat in the parking lot while my mom took Shelby in for her test. I called a friend who works as a postpardum nurse. She said, "I've never taken care of a baby that didn't have all four chambers of his/her heart." I interrupted that as: My baby will die. I called another friend to have her search the internet for info about babies without all four chambers. I then got myself together to join my mom and Shelby inside the doc office to learn that sure enough, Shelby has scholiosis. I remember nothing else from then to my doc appointment with Dr.Perry.
5 days later: Mark and I go to Jackson hoping to find out everything was fine and this was all a mistake. Dr. Perry confirmed what Dr. Pace found. I sat there crying, not understanding why, and shaking. Dr. Perry told our options: #1 abortion #2 nothing(baby would die shortly after birth) #3 have more test and meet with a fetal heart specialist. I cried and cried as Mark answered and I shook my head in agreement. No way would we have an abortion and no way would we do nothing. #3 was the path we would take(no matter what). Dr. Perry performed an amniocentsis right then. It didn't hurt one bit!! I even watched it on the screen. I guess it didn't hurt because I just wanted to know every detail about my baby girl possible.
2 Weeks Later: I remember crying a lot, having a feeling of emptiness inside, staying on the computer to find out as much info as possible(leading me to more unanswered questions), praying nothing else was wrong with her, and not wanting her to die. Finally the call came from the specialist. PRAISE THE LORD, nothing else showed up. We went back to Dr. Perry's office to meet Dr. Shore(the heart doc sent from Heaven to MS). She gave us hope. Our baby had an 85% chance of surviving. We would deliver at UMC then fly to CHOP(Children's Hospital of Philadelphia) for surgery.
December 08 to February 09: I experienced many doctor's appointments(never alone if my husband couldn't go, my friends went with me), lots of emotions, and many kind actions from family and friends as we awaited our baby's arrival. Church was the most difficult place for me to go during these months. Work was a "safe" place, I could escape and avoid people, but not at church. Mark tried to get the word around for no one to ask me anything about the baby. He let people know he would answer any/all questions. All of our church family was so concerned, I would cry if someone just looked at me, patted me on the back, or hugged me. I hated crying in front of my other two children. They did not understand, even though they prayed for their baby sister's heart all of the time. Right before Mackynlee was born, our church had a prayer vigual for us. It meant so much. Around 25 special, Godly, women joined me at the alter for prayer. That relieved so much stress. They will never know how much it meant to me. Words cannot express it. A group of our friend had a get together in our honor the weekend before Mackynlee was born. 200+ friends and family joined together in love and support. It was so touching. Over $10,000 dollars was given to us to help us through this difficult time. We have so many amazing friends!!! We were/are so blessed. I was teaching at two schools, West Marion and East Marion during my pregnancy. Many people from both schools gave us money, gifts, cards, etc. EM gave me a baby shower. It meant so much. I hadn't even known these teachers very long. It would take about 10 pages to list all of the acts of kindness shown to us during the months awaiting our baby girl's arrival. I just want everyone to know once again how much each and every act meant to us.
Monday, February 23: We headed to Jackson for an amniosentisis(that hurt sooooo bad) to see if our baby girl would be born that day(at 37 weeks gestation) or if we would have to wait another week. Many family and friends joined us. I was admitted to the hospital late that afternoon, but no baby. Baby decided to come around 1:30ish Tuesday, February 24th. She cried as soon as she was born. We were in shock. We did not expect that(not really sure what we expected). Just minutes later she was intubated by the team from the NICU. All of our visitors and Shelby got to take a glimpse at her as they pushed her to the NICU. This would be Shelby's only time to see her baby sister until weeks later.
An hour or so after birth, we went to see her in the NICU. Dr. Shores checked her out and let us know we would fly out the next day. She had contacted CHOP. I didn't cry when I left her in the NICU. I was just so thankful to have my baby alive. It was okay that she was in the NICU and not in my arms.
Wednesday/Thursday: The next day, the baby and I flew medical flight to Philadelphia, PA. We got there at 3ish in the morning. I slept til 9ish. When going to her pod that morning, I was bombarded by doctors asking me questions, telling me her ears looked low, her nipples looked too far apart, etc. I so needed Mark with me. I would go to my sleep room and just cry, shake, try to breathe. Mark arrived around 7ish. We met at the PRMH. We got settled in and took a taxi back to the hospital. We spent some time with her and talking with the nurses.
Friday: We got to the hospital early that morning. We were allowed to hold Mackynlee before surgery. Then we had to give her over to the surgeons. Dr. Gaynor met with us in his office before going into the OR. Nurses updated us every little bit. Finally it was over and Dr. Gaynor met with us again with a really good report. Everything seemed to be a success. Thank the Lord.
Friday Night: Mark and I stayed at the hospital in a sleep room. I went to check on baby in the middle of the night to find that she was bleeding badly. Many doctors were around her bedside. Finally the bleeding was under control. We spent the next three weeks in the hospital. She had fought off infections, jondus, and overcome her feeding issues.
The most difficult part for me was being away from my other two children. Our good friend, Keli, flew them to Philly to spend a weekend with us. Shelby got to spend time with her baby sis. They loved the PRMH. We so enjoyed them being with us, but boy was it a tear jerker when it was time to put them in that taxi to head to the airport.
March 23: We brought our baby girl home with no feeding tube. She was on 7 or 8 meds, we had many doc appointments, but other than that we had a "normal" baby. I spent as much time as possible sitting and holding her. I was so thankful for my baby. I stayed home for the remainder of the school year. We were unsure of our plans for the next school year, but God knew all along what would happen.
July 2009: The most amazing lady came into our lives. She was an answer to prayers and sent by God. Her name is Ms. Sharon Porter. She is a retired RN. She stays with our children while we are at work. She loves them and they love her. She is a part of our family now. She stayed right by our side during the complications after surgery #2. She goes to every doc appointment with us. She is a true blessing to all of us. Our children call her Meemaw.
September: Surgery date #2 was quickly approaching. We went back to CHOP for 3 weeks. This time we faced several complications after the surgery. Mackynlee had seizure activity and a brain bleed. We came home only to be admitted back into the hospital after a few days of enjoying home life again. We ended up in the PICU(a story I'm not going to rehash). We stayed at UMC two weeks and came home with a feeding tube. This was a difficult time for us. Mackynlee had the feeding tube until March. She vomitted a lot. The tube would come out a lot. I cringe at remebering all of the times we had to hold her down and put that down her nose!! Those months were full of stress. It really took a toll on all of us. Mark and I took our stress out on each other many times. I don't think we realized just how stressful it was at the time. Looking back, I don't know how we funtioned. God carried us through and didn't give us time to think about it. I praise His name today!! Everything is pretty "normal" around here these days. We are so blessed to realize how wonderful "normal" is and to enjoy every second we are given here on earth. Macynlee's third surgery will more than likely be in 2012. We plan to go back to Dr. Gaynor at CHOP. We have already turned this over to God. We will not waste a day worrying about what will happen.
February 2010: Mackynlee's First Celebration of Life takes place!!! Our friends Shayne and Kathryn Lowery invite many guests to their home to help us celebrate. $1,000 dollars was donted to C.H.I.N. in Mackynlee's honor. You can see pics of this celebration on my carepage. I'll try to update the blog with pics soon. Everyone wore red!! It was awsome.
UPDATE ON MACKYNLEE: She is walking everywhere. She thinks she is as big as her sister and brother. She says one and two words at a time. She loves brushing her teeth. She takes her meds each morning and evening like a champ!! She is the most loving baby in the world. She'll hug us and pat us on the back as she is hugging. She as the best sugar in the whole world. She sleeps in the bed with us and I wouldn't have it any other way. We don't have to go the brain doc or heart doc as often as we once did. Now our appointments are every three months. She still does not eat as well as she needs to, but we see improvement from day to day. Thank God for pediasure!!!!
Thank you God for giving us this blessing. Through her, You have opened our eyes to all of our blessings and made us aware of the many struggles people face every day. Thank You for all of the people we have met along this journey. Thank you for strengthening our marriage through this. Many marriages are torn apart when faced with medical challenges of children. Thank you for blinding us during our storms to help us make it through. We give you the praise, honor, and glory for Mackynlee.
July 2008: I go in for my yearly check-up to find out we were expecting our third child. BIG SURPRISE!!! At that time, we had a 6 year old(Shelby Grace) and a 1 and a half year old(Connor Mark) and were very content with the two children. We had picked and joked about having a house full of babies, but in reality, not ready for another baby. Oh well, ready or not, here she comes with many life lessons to teach us, our family, and many, many others.
October 2008: We were disappointed when my husband had to go into work and could not go to the ultrasound appointment to find out if he would get another baby girl or baby boy(that was all we were expecting to find out). So, he would call an hour after my appointment to find out what his special bundle of joy would be. My mom and Shelby(the proud big sis) accompanied me for the ultrasound. The tech went and got the doc during the ultrasound. All the two of them could tell me was they could not find all four chambers of our baby girl's heart. I asked over and over, "What does that mean?" Doctor Pace replied, "Go to Doc Perry(Diagnostic Specialist) in Jackson. You will probably deliver there and be transported out of state for surgery on her heart."
After leaving the office, I was in a daze. Shelby had an appointment across town with her pediatrician to check her back. Her gymanstic's teacher thought she may have scholiosis. While headed there, Mark called. I remember our conversation being very short. I was crying telling him what was going on. I know he felt so helpless not being home. I sat in the parking lot while my mom took Shelby in for her test. I called a friend who works as a postpardum nurse. She said, "I've never taken care of a baby that didn't have all four chambers of his/her heart." I interrupted that as: My baby will die. I called another friend to have her search the internet for info about babies without all four chambers. I then got myself together to join my mom and Shelby inside the doc office to learn that sure enough, Shelby has scholiosis. I remember nothing else from then to my doc appointment with Dr.Perry.
5 days later: Mark and I go to Jackson hoping to find out everything was fine and this was all a mistake. Dr. Perry confirmed what Dr. Pace found. I sat there crying, not understanding why, and shaking. Dr. Perry told our options: #1 abortion #2 nothing(baby would die shortly after birth) #3 have more test and meet with a fetal heart specialist. I cried and cried as Mark answered and I shook my head in agreement. No way would we have an abortion and no way would we do nothing. #3 was the path we would take(no matter what). Dr. Perry performed an amniocentsis right then. It didn't hurt one bit!! I even watched it on the screen. I guess it didn't hurt because I just wanted to know every detail about my baby girl possible.
2 Weeks Later: I remember crying a lot, having a feeling of emptiness inside, staying on the computer to find out as much info as possible(leading me to more unanswered questions), praying nothing else was wrong with her, and not wanting her to die. Finally the call came from the specialist. PRAISE THE LORD, nothing else showed up. We went back to Dr. Perry's office to meet Dr. Shore(the heart doc sent from Heaven to MS). She gave us hope. Our baby had an 85% chance of surviving. We would deliver at UMC then fly to CHOP(Children's Hospital of Philadelphia) for surgery.
December 08 to February 09: I experienced many doctor's appointments(never alone if my husband couldn't go, my friends went with me), lots of emotions, and many kind actions from family and friends as we awaited our baby's arrival. Church was the most difficult place for me to go during these months. Work was a "safe" place, I could escape and avoid people, but not at church. Mark tried to get the word around for no one to ask me anything about the baby. He let people know he would answer any/all questions. All of our church family was so concerned, I would cry if someone just looked at me, patted me on the back, or hugged me. I hated crying in front of my other two children. They did not understand, even though they prayed for their baby sister's heart all of the time. Right before Mackynlee was born, our church had a prayer vigual for us. It meant so much. Around 25 special, Godly, women joined me at the alter for prayer. That relieved so much stress. They will never know how much it meant to me. Words cannot express it. A group of our friend had a get together in our honor the weekend before Mackynlee was born. 200+ friends and family joined together in love and support. It was so touching. Over $10,000 dollars was given to us to help us through this difficult time. We have so many amazing friends!!! We were/are so blessed. I was teaching at two schools, West Marion and East Marion during my pregnancy. Many people from both schools gave us money, gifts, cards, etc. EM gave me a baby shower. It meant so much. I hadn't even known these teachers very long. It would take about 10 pages to list all of the acts of kindness shown to us during the months awaiting our baby girl's arrival. I just want everyone to know once again how much each and every act meant to us.
Monday, February 23: We headed to Jackson for an amniosentisis(that hurt sooooo bad) to see if our baby girl would be born that day(at 37 weeks gestation) or if we would have to wait another week. Many family and friends joined us. I was admitted to the hospital late that afternoon, but no baby. Baby decided to come around 1:30ish Tuesday, February 24th. She cried as soon as she was born. We were in shock. We did not expect that(not really sure what we expected). Just minutes later she was intubated by the team from the NICU. All of our visitors and Shelby got to take a glimpse at her as they pushed her to the NICU. This would be Shelby's only time to see her baby sister until weeks later.
An hour or so after birth, we went to see her in the NICU. Dr. Shores checked her out and let us know we would fly out the next day. She had contacted CHOP. I didn't cry when I left her in the NICU. I was just so thankful to have my baby alive. It was okay that she was in the NICU and not in my arms.
Wednesday/Thursday: The next day, the baby and I flew medical flight to Philadelphia, PA. We got there at 3ish in the morning. I slept til 9ish. When going to her pod that morning, I was bombarded by doctors asking me questions, telling me her ears looked low, her nipples looked too far apart, etc. I so needed Mark with me. I would go to my sleep room and just cry, shake, try to breathe. Mark arrived around 7ish. We met at the PRMH. We got settled in and took a taxi back to the hospital. We spent some time with her and talking with the nurses.
Friday: We got to the hospital early that morning. We were allowed to hold Mackynlee before surgery. Then we had to give her over to the surgeons. Dr. Gaynor met with us in his office before going into the OR. Nurses updated us every little bit. Finally it was over and Dr. Gaynor met with us again with a really good report. Everything seemed to be a success. Thank the Lord.
Friday Night: Mark and I stayed at the hospital in a sleep room. I went to check on baby in the middle of the night to find that she was bleeding badly. Many doctors were around her bedside. Finally the bleeding was under control. We spent the next three weeks in the hospital. She had fought off infections, jondus, and overcome her feeding issues.
The most difficult part for me was being away from my other two children. Our good friend, Keli, flew them to Philly to spend a weekend with us. Shelby got to spend time with her baby sis. They loved the PRMH. We so enjoyed them being with us, but boy was it a tear jerker when it was time to put them in that taxi to head to the airport.
March 23: We brought our baby girl home with no feeding tube. She was on 7 or 8 meds, we had many doc appointments, but other than that we had a "normal" baby. I spent as much time as possible sitting and holding her. I was so thankful for my baby. I stayed home for the remainder of the school year. We were unsure of our plans for the next school year, but God knew all along what would happen.
July 2009: The most amazing lady came into our lives. She was an answer to prayers and sent by God. Her name is Ms. Sharon Porter. She is a retired RN. She stays with our children while we are at work. She loves them and they love her. She is a part of our family now. She stayed right by our side during the complications after surgery #2. She goes to every doc appointment with us. She is a true blessing to all of us. Our children call her Meemaw.
September: Surgery date #2 was quickly approaching. We went back to CHOP for 3 weeks. This time we faced several complications after the surgery. Mackynlee had seizure activity and a brain bleed. We came home only to be admitted back into the hospital after a few days of enjoying home life again. We ended up in the PICU(a story I'm not going to rehash). We stayed at UMC two weeks and came home with a feeding tube. This was a difficult time for us. Mackynlee had the feeding tube until March. She vomitted a lot. The tube would come out a lot. I cringe at remebering all of the times we had to hold her down and put that down her nose!! Those months were full of stress. It really took a toll on all of us. Mark and I took our stress out on each other many times. I don't think we realized just how stressful it was at the time. Looking back, I don't know how we funtioned. God carried us through and didn't give us time to think about it. I praise His name today!! Everything is pretty "normal" around here these days. We are so blessed to realize how wonderful "normal" is and to enjoy every second we are given here on earth. Macynlee's third surgery will more than likely be in 2012. We plan to go back to Dr. Gaynor at CHOP. We have already turned this over to God. We will not waste a day worrying about what will happen.
February 2010: Mackynlee's First Celebration of Life takes place!!! Our friends Shayne and Kathryn Lowery invite many guests to their home to help us celebrate. $1,000 dollars was donted to C.H.I.N. in Mackynlee's honor. You can see pics of this celebration on my carepage. I'll try to update the blog with pics soon. Everyone wore red!! It was awsome.
UPDATE ON MACKYNLEE: She is walking everywhere. She thinks she is as big as her sister and brother. She says one and two words at a time. She loves brushing her teeth. She takes her meds each morning and evening like a champ!! She is the most loving baby in the world. She'll hug us and pat us on the back as she is hugging. She as the best sugar in the whole world. She sleeps in the bed with us and I wouldn't have it any other way. We don't have to go the brain doc or heart doc as often as we once did. Now our appointments are every three months. She still does not eat as well as she needs to, but we see improvement from day to day. Thank God for pediasure!!!!
Thank you God for giving us this blessing. Through her, You have opened our eyes to all of our blessings and made us aware of the many struggles people face every day. Thank You for all of the people we have met along this journey. Thank you for strengthening our marriage through this. Many marriages are torn apart when faced with medical challenges of children. Thank you for blinding us during our storms to help us make it through. We give you the praise, honor, and glory for Mackynlee.
Friday, July 9, 2010
अनोठेर गुड रिपोर्ट
On Wednesday, we went to a pediatric neurologist. This was the first time I met him, but he remembered us well from our stay at UMC in October. He had also read up on all Mackynlee's history and was very interested in anything I had to say. He was amazed at how well Mackynlee is developmentally, etc. We are taking her off of her seizure medication. Please pray this goes well. I so want her off of it, but it makes me a tiny bit nervous at the same time. He feels that her tongue problem will slowly continue to get better. We will just keep poking food at her. She will have a ct scan done July 22nd. She will not be put to sleep for this(the doc remembered and what he did not remember, I told him, how we came close to losing her after her last MRI when she was put to sleep). So he is 100% against putting her to sleep for any testing at this time. The ct scan is going to show if the bleed on her brain has completely gone away. This is so we can start her back on her aspirin. Her heart needs this med, but if she has bleeding still, her brain does not need it. I know all you heart moms and anyone else that has experienced medical things with loved ones know how this situation can be.
I know we have all read this poem many times, but it continues to come to my mind when I think of Ms. Peggy Stringer and I just wanted to share it. Please continue lifting her and her family up in prayer. Continue praying for Doug Turnage, Rhonda Pittman, Addyson Fulbright, Bo Garner, Keli Williams and her new baby Griffin.
Our Church Mission Trip next week
Our schools
Our churches: pastors, ministers of music, ministers of youth, other staff, members of all ages
Footprints in the Sand
One night I had a dream --
I dreamed I was walking along the beach with the Lord, and
Across the sky flashed scenes from my life.
For each scene I noticed two sets of footprints in the sand;
One belonged to me, and the other to the Lord.
When the last scene of my life flashed before us,
I looked back at the footprints in the sand.
I noticed that many times along the path of my life,
There was only one set of footprints.
I also noticed that it happened at the very lowest and saddest times in my life
This really bothered me, and I questioned the Lord about it.
"Lord, you said that once I decided to follow you,
You would walk with me all the way;
But I have noticed that during the most troublesome times in my life,
There is only one set of footprints.
I don't understand why in times when I
needed you the most, you should leave me.
The Lord replied, "My precious, precious
child. I love you, and I would never,
never leave you during your times of
trial and suffering.
When you saw only one set of footprints,
It was then that I carried you."
by Mary Stevenson
I know we have all read this poem many times, but it continues to come to my mind when I think of Ms. Peggy Stringer and I just wanted to share it. Please continue lifting her and her family up in prayer. Continue praying for Doug Turnage, Rhonda Pittman, Addyson Fulbright, Bo Garner, Keli Williams and her new baby Griffin.
Our Church Mission Trip next week
Our schools
Our churches: pastors, ministers of music, ministers of youth, other staff, members of all ages
Footprints in the Sand
One night I had a dream --
I dreamed I was walking along the beach with the Lord, and
Across the sky flashed scenes from my life.
For each scene I noticed two sets of footprints in the sand;
One belonged to me, and the other to the Lord.
When the last scene of my life flashed before us,
I looked back at the footprints in the sand.
I noticed that many times along the path of my life,
There was only one set of footprints.
I also noticed that it happened at the very lowest and saddest times in my life
This really bothered me, and I questioned the Lord about it.
"Lord, you said that once I decided to follow you,
You would walk with me all the way;
But I have noticed that during the most troublesome times in my life,
There is only one set of footprints.
I don't understand why in times when I
needed you the most, you should leave me.
The Lord replied, "My precious, precious
child. I love you, and I would never,
never leave you during your times of
trial and suffering.
When you saw only one set of footprints,
It was then that I carried you."
by Mary Stevenson
Tuesday, June 15, 2010
Upcomingappointments
Miss Mackynlee is doing great! She is such a momma's baby and I am loving it. She loves both Shelb and Connor, but she and Connor really look out for each other. They are continuously hugging each other. He calls her BooBoo. Yesterday she walked almost all of the way across the living room. Connor was soooo proud of her. I pray when my children grow up they will continue to be close and continue to love each other as they do now.
Next week we will start our visits to Mackynlee's doctors. Please begin praying all news is positive. God is in control. I know His will will be and not mine, but it has been so so awesome not to go to a doctor's appointment for a couple of months. As I was watching Mackynlee sleep and saying some prayers, I thanked God over and over for allowing the last few months to be "normal" around here. She has not vomited since the first week of May. That was so stressful on all of us. Looking back on that time in her life, I do not know how I continued to function. I pray those days are gone for good!!
Prayer Requests:
Mackynlee
Doug Turnage(He had a four wheeler wreck on Memorial Day. There has been many ups and downs. He has had several brain surgeries. Please pray for God to heal him and to be with his family during this difficult time.)
Rhonda Pittman (breast cancer)
Two fiends of mine who I will not name: one is having marriage problems the other is medical concerns.
Father, I pray that You Will help me not to be so self-centered. Fill me with the desire to think of others and to help them however I am able. AMEN
A Point to Ponder... It isn't difficult to make a mountain out of a molehill-just add a little dirt.
THANK YOU LORD FOR
Thank you for this sink of dirty dishes;
we have plenty of food to eat.
Thank you for this pile of dirty, stinky laundry;
we have plenty of nice clothes to wear.
And I would like to thank you, Lord,for those unmade beds;
they were so warm and comfortable last night.
I know that many have no bed.
My thanks to you, Lord, for this bathroom complete with all the splattered mess, soggy, complete with all the splattered mess, soggy, grimy towels and the dirty lavatory; they are all so convenient.
Thank you God this finger-smudged refrigerator that needs defrosting so badly; it has served us faithfully for many years. It is full of cold drinks and enough leftovers for two or three meals.
Thank you, Lord, for this oven that absolutely must be cleaned today; it has baked so many things over the years.
The whole family is grateful for that tall grass that needs mowing and lawn that needs raking; we all enjoy the yard.
Thank you, Lord, even for that squeaking door.
My kids are healthy and able to run and play. Many children cannot.
Lord, the presence of all these chores awaiting me says You have richly blessed my family. I shall do them cheerfully and I shall do them gratefully.
Even though I clutch my blanket and growl when the alarm rings...
Thank you, Lord, that I can hear.
There are many who are deaf.
Even though I keep my eyes closed against the morning light
as long as possible...Thank you, Lord, that I can see. Many are blind.
Even though I huddle in my bed and put off rising...
Thank you, Lord, that have the strength to rise.
There are many who are bedridden.
Even tough the first hour of my day is hectic
with socks that are lost, toast that is burned,
tempers that are short, and my children that are so loud...
Thank you, Lord, for my family.
There are so many who are lonely.
Even though our breakfast table never looks like the pictures
in magazines and the menu is at times not balanced...
Thank you, Lord, for the food we have.
There are many who are hungry.
Even though the routine of my job is often monotonous...
Thank you, Lord, for the opportunity to work.
There are many who are jobless.
Even though I grumble and bemoan my fate from day to day
and wish my circumstances were not so modest...
Thank you, Lord, for life.
Colossians 3:17 And whatever you do, whether in word or deed,
do it all in the name of the Lord Jesus, giving thanks to God
and the Father through Him.
Psalms 100:4 Enter His gates with thanksgiving and His courts
with praise; give thanks to Him and praise His name.
Next week we will start our visits to Mackynlee's doctors. Please begin praying all news is positive. God is in control. I know His will will be and not mine, but it has been so so awesome not to go to a doctor's appointment for a couple of months. As I was watching Mackynlee sleep and saying some prayers, I thanked God over and over for allowing the last few months to be "normal" around here. She has not vomited since the first week of May. That was so stressful on all of us. Looking back on that time in her life, I do not know how I continued to function. I pray those days are gone for good!!
Prayer Requests:
Mackynlee
Doug Turnage(He had a four wheeler wreck on Memorial Day. There has been many ups and downs. He has had several brain surgeries. Please pray for God to heal him and to be with his family during this difficult time.)
Rhonda Pittman (breast cancer)
Two fiends of mine who I will not name: one is having marriage problems the other is medical concerns.
Father, I pray that You Will help me not to be so self-centered. Fill me with the desire to think of others and to help them however I am able. AMEN
A Point to Ponder... It isn't difficult to make a mountain out of a molehill-just add a little dirt.
THANK YOU LORD FOR
Thank you for this sink of dirty dishes;
we have plenty of food to eat.
Thank you for this pile of dirty, stinky laundry;
we have plenty of nice clothes to wear.
And I would like to thank you, Lord,for those unmade beds;
they were so warm and comfortable last night.
I know that many have no bed.
My thanks to you, Lord, for this bathroom complete with all the splattered mess, soggy, complete with all the splattered mess, soggy, grimy towels and the dirty lavatory; they are all so convenient.
Thank you God this finger-smudged refrigerator that needs defrosting so badly; it has served us faithfully for many years. It is full of cold drinks and enough leftovers for two or three meals.
Thank you, Lord, for this oven that absolutely must be cleaned today; it has baked so many things over the years.
The whole family is grateful for that tall grass that needs mowing and lawn that needs raking; we all enjoy the yard.
Thank you, Lord, even for that squeaking door.
My kids are healthy and able to run and play. Many children cannot.
Lord, the presence of all these chores awaiting me says You have richly blessed my family. I shall do them cheerfully and I shall do them gratefully.
Even though I clutch my blanket and growl when the alarm rings...
Thank you, Lord, that I can hear.
There are many who are deaf.
Even though I keep my eyes closed against the morning light
as long as possible...Thank you, Lord, that I can see. Many are blind.
Even though I huddle in my bed and put off rising...
Thank you, Lord, that have the strength to rise.
There are many who are bedridden.
Even tough the first hour of my day is hectic
with socks that are lost, toast that is burned,
tempers that are short, and my children that are so loud...
Thank you, Lord, for my family.
There are so many who are lonely.
Even though our breakfast table never looks like the pictures
in magazines and the menu is at times not balanced...
Thank you, Lord, for the food we have.
There are many who are hungry.
Even though the routine of my job is often monotonous...
Thank you, Lord, for the opportunity to work.
There are many who are jobless.
Even though I grumble and bemoan my fate from day to day
and wish my circumstances were not so modest...
Thank you, Lord, for life.
Colossians 3:17 And whatever you do, whether in word or deed,
do it all in the name of the Lord Jesus, giving thanks to God
and the Father through Him.
Psalms 100:4 Enter His gates with thanksgiving and His courts
with praise; give thanks to Him and praise His name.
Saturday, May 29, 2010
Summertime
We are finally out of school!! YAY!!!
Mackynlee has not been to a doctor in two months (believe that or not). We will go to the pediatrician and the heart doc during the month of June. I'm not sure when we will go back to the neurologist. We do not have a scheduled appointment. I guess I will call sometimes in the next couple of weeks to see if we need to meet with her. I would love to touch base with everyone this summer, and not have any appointments during the beginning months of school. We will see if this goes as I would like it to.
Mackynlee's weight is 20lbs!! FINALLY!! Her eating is still not "normal", but we are definitely seeing progress. She has around 40 ounces of pediasure a day and has not thrown up in almost a month. Pray this continues!!! It is stressful around here when she goes through a throwing up spell.
This morning, my children and I are going to join others from our church to go out into our county to invite children to VBS. I wanted to share the following prayer with you. I know many of you will participate in VBS this summer. It is so easy to get frustrated with it, but we need to lean on GOD and pray for a positive attitude. (I'm speaking to myself!)
Vacation Bible School Prayer
1. Lord, help us to dedicate our hearts to a time of personal relationship with you, and to hear what you desire of us as we prepare for VBS.
2. Lord, Thank You for this day and for the gifts you have given to us and called us to use for Your Glory through VBS Ministry this summer.
3. Lord Jesus, we pray that Your Holy Spirit will lead us and guide us through this day and the days to come as we prepare for VBS
4. Lord, Thank You for sending Your Holy Spirit to be our Helper and Best Friend.
5. Today we pray for our fellow servants, as they spend time in personal conversation with You, Lord. Give them Your plan for VBS and Your words for the Children.
6. We love You, Lord, and we lift our love to You. Thank You for first loving us. We pray that You will help us as we show that love to Your children during VBS
Believe In God!
7. Today, Lord, we totally rely on You to lead us. Just as our bodies crave oxygen, our hearts yearn for You to lead us in this exciting Ministry.
8. Lord, today as we think of all the plans and details swimming around in our heads, may we remember that You are the God of All Things Impossible. Give us the strength as we trust You with the details.
9. Lord, today as we think of how we were chosen for this Ministry, please be with all the others You have called to do each and every position of our VBS Ministry. No matter what the position, all are equally important and could not function without the others. Lead them to us, to give of themselves for Your Glory this summer.
10. Lord, so many times as we look at all we have to accomplish, and we are so overwhelmed. Remind us to hold unto Your hand and to let You walk beside us as we continue preparing to touch the hearts of the children with Your love this summer.
11. Remind us, Lord, today, to trust You with all our hearts, with all our minds, and with all our strength and to learn not to lean on our own understanding. We can do all things through You, Lord, who strengthens us.
Obey God!!
12. Today, Lord, we obey Your call to go out into the world and share the Good News of Your Gospel by sharing Your live with children, this summer at the VBS.
13. Lord, help us as a Church and as individuals to stand against temptations, against skeptics, and against doubt, and to continue to bring the VBS to children and families this summer. Protect us from the world and help us to keep our eyes and hearts focused on You.
14. Lord, help us to continue to give VBS to the children Your Way, not necessarily our way.
15. Lord, help us to seek Your vision and Your plans for our VBS this summer.
Trust God!
16. Lord, thank you for wrapping Your loving, protective arms around us, always.
17. Lord, we pray today for all the Station Leaders, Crew Leaders, Kitchen Staff, Scenery Designers, Publicity Coordinator and Crew and all the VBS staff, that WILL serve You this summer at VBS. Thank You for them.
18. Lord, today we thank You for ALL the financial and prayerful support You have given and that You will continue to give to our VBS this summer.
19. Lord, thank You for the Parents who trust us with their children this summer. Please help them to feel the touch of your love through our VBS and our Church this summer.
20. Lord, thank You for ALL those You have sent and will continue to send to support us in remembering and accomplishing all the details for bringing the VBS to ALL the children and families that will attend this summer.
Love God!
21. Lord, we may look ordinary, but we carry a Priceless Treasure within our innermost being, the presence of Your Spirit. Give us the courage to share this priceless gift everywhere we go.
22. Thank You, Lord Jesus, for giving Your Life for us! Thank You for dying to save us. We truly are more special than we could ever imagine, because of what you did for us.
23. Thank You, Lord, for giving us the unique opportunity of sharing our ALL with You, the King of the Universe. Oh, how we love You!
24. Thank You, Lord, for making us Your Children. Our wonderful Father, You are always there when the rest of the world seems to turn away from us.
25. Lord, we love You with all that we are. Help us to show You and everyone around us, this very fact, in everything we say and do; in every way we live our lives.
Share God's Love!!
26. Lord, help us to share Your Love even if it stretches us way out of our Comfort Zone!
27. Lord, help us to reach out and touch the hearts and souls of our fellow VBS workers and staff, with comfort, support, and prayer.
28. Lord, remind us to give hugs of Christian love to those around us; through our actions and at times literally with our arms. Let us be Your arms.
29. Lord, help us to be Your hands today, as we spread Your Love to everyone within two feet of us, in every direction.
30. Lord, continue to be with us as VBS quickly approaches. Prepare our hearts and minds, and the hearts and minds of those we touch through VBS this summer.
In Jesus Name we pray, Amen!!
Remember what we can do...
If we have the Lord with us!
Matthew 17:20
Mackynlee has not been to a doctor in two months (believe that or not). We will go to the pediatrician and the heart doc during the month of June. I'm not sure when we will go back to the neurologist. We do not have a scheduled appointment. I guess I will call sometimes in the next couple of weeks to see if we need to meet with her. I would love to touch base with everyone this summer, and not have any appointments during the beginning months of school. We will see if this goes as I would like it to.
Mackynlee's weight is 20lbs!! FINALLY!! Her eating is still not "normal", but we are definitely seeing progress. She has around 40 ounces of pediasure a day and has not thrown up in almost a month. Pray this continues!!! It is stressful around here when she goes through a throwing up spell.
This morning, my children and I are going to join others from our church to go out into our county to invite children to VBS. I wanted to share the following prayer with you. I know many of you will participate in VBS this summer. It is so easy to get frustrated with it, but we need to lean on GOD and pray for a positive attitude. (I'm speaking to myself!)
Vacation Bible School Prayer
1. Lord, help us to dedicate our hearts to a time of personal relationship with you, and to hear what you desire of us as we prepare for VBS.
2. Lord, Thank You for this day and for the gifts you have given to us and called us to use for Your Glory through VBS Ministry this summer.
3. Lord Jesus, we pray that Your Holy Spirit will lead us and guide us through this day and the days to come as we prepare for VBS
4. Lord, Thank You for sending Your Holy Spirit to be our Helper and Best Friend.
5. Today we pray for our fellow servants, as they spend time in personal conversation with You, Lord. Give them Your plan for VBS and Your words for the Children.
6. We love You, Lord, and we lift our love to You. Thank You for first loving us. We pray that You will help us as we show that love to Your children during VBS
Believe In God!
7. Today, Lord, we totally rely on You to lead us. Just as our bodies crave oxygen, our hearts yearn for You to lead us in this exciting Ministry.
8. Lord, today as we think of all the plans and details swimming around in our heads, may we remember that You are the God of All Things Impossible. Give us the strength as we trust You with the details.
9. Lord, today as we think of how we were chosen for this Ministry, please be with all the others You have called to do each and every position of our VBS Ministry. No matter what the position, all are equally important and could not function without the others. Lead them to us, to give of themselves for Your Glory this summer.
10. Lord, so many times as we look at all we have to accomplish, and we are so overwhelmed. Remind us to hold unto Your hand and to let You walk beside us as we continue preparing to touch the hearts of the children with Your love this summer.
11. Remind us, Lord, today, to trust You with all our hearts, with all our minds, and with all our strength and to learn not to lean on our own understanding. We can do all things through You, Lord, who strengthens us.
Obey God!!
12. Today, Lord, we obey Your call to go out into the world and share the Good News of Your Gospel by sharing Your live with children, this summer at the VBS.
13. Lord, help us as a Church and as individuals to stand against temptations, against skeptics, and against doubt, and to continue to bring the VBS to children and families this summer. Protect us from the world and help us to keep our eyes and hearts focused on You.
14. Lord, help us to continue to give VBS to the children Your Way, not necessarily our way.
15. Lord, help us to seek Your vision and Your plans for our VBS this summer.
Trust God!
16. Lord, thank you for wrapping Your loving, protective arms around us, always.
17. Lord, we pray today for all the Station Leaders, Crew Leaders, Kitchen Staff, Scenery Designers, Publicity Coordinator and Crew and all the VBS staff, that WILL serve You this summer at VBS. Thank You for them.
18. Lord, today we thank You for ALL the financial and prayerful support You have given and that You will continue to give to our VBS this summer.
19. Lord, thank You for the Parents who trust us with their children this summer. Please help them to feel the touch of your love through our VBS and our Church this summer.
20. Lord, thank You for ALL those You have sent and will continue to send to support us in remembering and accomplishing all the details for bringing the VBS to ALL the children and families that will attend this summer.
Love God!
21. Lord, we may look ordinary, but we carry a Priceless Treasure within our innermost being, the presence of Your Spirit. Give us the courage to share this priceless gift everywhere we go.
22. Thank You, Lord Jesus, for giving Your Life for us! Thank You for dying to save us. We truly are more special than we could ever imagine, because of what you did for us.
23. Thank You, Lord, for giving us the unique opportunity of sharing our ALL with You, the King of the Universe. Oh, how we love You!
24. Thank You, Lord, for making us Your Children. Our wonderful Father, You are always there when the rest of the world seems to turn away from us.
25. Lord, we love You with all that we are. Help us to show You and everyone around us, this very fact, in everything we say and do; in every way we live our lives.
Share God's Love!!
26. Lord, help us to share Your Love even if it stretches us way out of our Comfort Zone!
27. Lord, help us to reach out and touch the hearts and souls of our fellow VBS workers and staff, with comfort, support, and prayer.
28. Lord, remind us to give hugs of Christian love to those around us; through our actions and at times literally with our arms. Let us be Your arms.
29. Lord, help us to be Your hands today, as we spread Your Love to everyone within two feet of us, in every direction.
30. Lord, continue to be with us as VBS quickly approaches. Prepare our hearts and minds, and the hearts and minds of those we touch through VBS this summer.
In Jesus Name we pray, Amen!!
Remember what we can do...
If we have the Lord with us!
Matthew 17:20
Friday, April 23, 2010
HAPPYAGAIN
I wanted everyone to know that things are looking up for Mackynlee. She has increased her intake drastically over the past two days. Yesterday she exceeded the amount that the doctors have set for her minimum. She has gained back some of the weight that she had lost. Keep sending up prayers that we will not have to divert back to the feeding tube.
Mark and I are getting a night away tonight. It is the first time he and I have been alone overnight(with the exception of when Mackynlee was in the CICU and we were at the PRHM, I don't count those nights), since March '08. Thanks sooooooo much Meemaw(Ms. Sharon Porter) for camping out with the three musketeers while we are away. You are the best!! I would be in a mental institution without you. That is not a joke either.
I wanted to share the lyrics of this Christian song titled: God Will See You Through
Since I saw you last I've had some ups, some downs, some hurts, some pain- I won't lie, I needed God to come revive my soul again- But it never got so bad that I gave in- in my weakest hour the Lord- He stepped right in-
So my testimony is God will see you through
So my testimony is God will see you through
It's not easy when you try each day to smile and hide your pain
and the devil does his best to magnify your every fear, then you try your best to stand but still you fall, but I thank God that grace and mercy heard my call-
So my testimony is God will see you through
So my testimony is God will see you through
Bridge:
Don't stop prayin' - you can make it - don't stop believin' -
you will receive it
Lead:
I've been through the fire- I've been through the flood- but He promised never to leave me- oh never alone
So my testimony is God will see you through
So my testimony is God will see you through
Vamp:
He'll see you through
He'll see you through
Mark and I are getting a night away tonight. It is the first time he and I have been alone overnight(with the exception of when Mackynlee was in the CICU and we were at the PRHM, I don't count those nights), since March '08. Thanks sooooooo much Meemaw(Ms. Sharon Porter) for camping out with the three musketeers while we are away. You are the best!! I would be in a mental institution without you. That is not a joke either.
I wanted to share the lyrics of this Christian song titled: God Will See You Through
Since I saw you last I've had some ups, some downs, some hurts, some pain- I won't lie, I needed God to come revive my soul again- But it never got so bad that I gave in- in my weakest hour the Lord- He stepped right in-
So my testimony is God will see you through
So my testimony is God will see you through
It's not easy when you try each day to smile and hide your pain
and the devil does his best to magnify your every fear, then you try your best to stand but still you fall, but I thank God that grace and mercy heard my call-
So my testimony is God will see you through
So my testimony is God will see you through
Bridge:
Don't stop prayin' - you can make it - don't stop believin' -
you will receive it
Lead:
I've been through the fire- I've been through the flood- but He promised never to leave me- oh never alone
So my testimony is God will see you through
So my testimony is God will see you through
Vamp:
He'll see you through
He'll see you through
Tuesday, April 20, 2010
AnotherRollerCoasterRIde
We are still around, just cannot seem to find the time to post lately. The last week has been pretty difficult. Mackynlee has lost a pound. We may be facing the "feeding tube" again. I cannot express to you what the thought of that does to me. She has also had some major throwing up issues. The weight loss was before the throwing up set in. We are not certain if she had a virus or what was going on. Thank God she has finally able to take her pediasure again and is keeping it down. We will know more about the feeding tube by her weight at the beginning of next week. I know God does not put any more on you than you can handle, but lately I am so not sure how much more I can handle. If we have to do the feeding tube again, I will need more prayer than ever before.
Life is challenging. Life with a sick child is overwhelmingly challenging at times. (Not even sure overwhelmingly is a word.) It is always "what if this?" "what if that?" "should I go home from work?" "should we wait it out?" "should we call the doctor?" "should we make that dreaded 2 hour drive to Jackson?" etc?????????
Say some prayers for our Olivia Torian. She is having a feeding tube put in surgically next month. Tara: Take notes, we may be right there behind yall.
Life is challenging. Life with a sick child is overwhelmingly challenging at times. (Not even sure overwhelmingly is a word.) It is always "what if this?" "what if that?" "should I go home from work?" "should we wait it out?" "should we call the doctor?" "should we make that dreaded 2 hour drive to Jackson?" etc?????????
Say some prayers for our Olivia Torian. She is having a feeding tube put in surgically next month. Tara: Take notes, we may be right there behind yall.
Wednesday, March 17, 2010
Ten Days Without the Tube
Thanks Debbie and Kathleen for the info. I will start adding coffee creamer today!! I go to the heart doc next week. I will ask about the duocal. I have been told about the duocal, but last time I mentioned it to my heart doc, she frowned about it. I think it had to do with her intake of liquids. She has to have so many ounces of fluid per day for her shunt to work correctly. She is taking enough fluids now. Last time we took the feeding tube out she averaged 18 to 20 ounces a day. This time she is averaging 23-26 ounces a day.
How much coffee creamer Debbie? As much as she will tolerate? Or is there a formula?
We give all of the praise and glory for this answer to prayers to God our Father! We pray that He will continue to allow Mackynlee to increase her feedings and gain weight without the support of a feeding tube.
Ms. Peggy has been moved to a room and her feeding tube has been removed!! Praise God!!
Continue praying for Rhonda Pittman(breast cancer), Micah Goar(she will be having a baby tomorrow), Tammy McNabb(she will be having a baby before this month is over), Joy Stringer and new baby boy, Bill Morris(in FGH), Ms. Earlene Mitchel(in hospital), and all others that are in need that I am not aware of. God knows.
Last night at our BYW meeting, we focused on praying for the schools. Please lift up our local schools this week. Columbia Public Schools, East Marion, West Marion, and Columbia Academy. Pray for our administraters, our teachers, our janitors, our bus drivers, our cafeteria workers, our parents and students.
"Make a joyful noise unto the LORD, all ye lands. Serve the LORD with gladness: come before his presence with singing. Know ye that the LORD he is God: it is he that hath made us, and not we ourselves; we are his people, and the sheep of his pasture. Enter into his gates with thanksgiving, and into his courts with praise: be thankful unto him, and bless his name. For the LORD is good; his mercy is everlasting; and his truth endureth to all generations. "
Psalm 100:1-5
What does God want from us? According to this scripture He wants us to be joyful, recognize Him as our Creator, be thankful, serve Him, and praise Him. He wants our joy to be full. He wants us to be happy.
It tells us to keep our hearts and minds on Him. Throughout the day we can praise Him and thank Him with words and song. He is deserving of our praises. He loves us more than we can comprehend. He is waiting patiently for us to acknowledge Him. He is waiting patiently to pick us up when, through our own efforts, we fall flat on our faces.
Have you ever broken open a piggy bank expecting to find more money than what you had put in it? Of course not! God has given you life and His love. Now he is waiting for you to put in your share. Then, once you begin giving back to God He will pour out the blessings on you. Luke 6:38 tells us, "Give, and it shall be given unto you; good measure, pressed down, and shaken together, and running over, shall men give into your bosom. For with the same measure that ye mete withal it shall be measured to you again." In other words, you will receive more than you give. Your piggy bank will have more in it than what you put there!
God has wonderful things for us. He is holding out His hand. It is up to us to take it.
How much coffee creamer Debbie? As much as she will tolerate? Or is there a formula?
We give all of the praise and glory for this answer to prayers to God our Father! We pray that He will continue to allow Mackynlee to increase her feedings and gain weight without the support of a feeding tube.
Ms. Peggy has been moved to a room and her feeding tube has been removed!! Praise God!!
Continue praying for Rhonda Pittman(breast cancer), Micah Goar(she will be having a baby tomorrow), Tammy McNabb(she will be having a baby before this month is over), Joy Stringer and new baby boy, Bill Morris(in FGH), Ms. Earlene Mitchel(in hospital), and all others that are in need that I am not aware of. God knows.
Last night at our BYW meeting, we focused on praying for the schools. Please lift up our local schools this week. Columbia Public Schools, East Marion, West Marion, and Columbia Academy. Pray for our administraters, our teachers, our janitors, our bus drivers, our cafeteria workers, our parents and students.
"Make a joyful noise unto the LORD, all ye lands. Serve the LORD with gladness: come before his presence with singing. Know ye that the LORD he is God: it is he that hath made us, and not we ourselves; we are his people, and the sheep of his pasture. Enter into his gates with thanksgiving, and into his courts with praise: be thankful unto him, and bless his name. For the LORD is good; his mercy is everlasting; and his truth endureth to all generations. "
Psalm 100:1-5
What does God want from us? According to this scripture He wants us to be joyful, recognize Him as our Creator, be thankful, serve Him, and praise Him. He wants our joy to be full. He wants us to be happy.
It tells us to keep our hearts and minds on Him. Throughout the day we can praise Him and thank Him with words and song. He is deserving of our praises. He loves us more than we can comprehend. He is waiting patiently for us to acknowledge Him. He is waiting patiently to pick us up when, through our own efforts, we fall flat on our faces.
Have you ever broken open a piggy bank expecting to find more money than what you had put in it? Of course not! God has given you life and His love. Now he is waiting for you to put in your share. Then, once you begin giving back to God He will pour out the blessings on you. Luke 6:38 tells us, "Give, and it shall be given unto you; good measure, pressed down, and shaken together, and running over, shall men give into your bosom. For with the same measure that ye mete withal it shall be measured to you again." In other words, you will receive more than you give. Your piggy bank will have more in it than what you put there!
God has wonderful things for us. He is holding out His hand. It is up to us to take it.
Monday, March 15, 2010
Sorry I have not been faithful in keeping up to date on Ms. Peggy's condition. As of yesterday, she had been taken off of the vent and was talking a little. Family is hoping she will be moved out of the ICU by tomorrow. This is all info from Sunday. I have not heard an update from today. I pray all is still going well. This is definitely a miracle from God.
Report on Mackynlee:
Last Sunday, 8 days ago, Mackynlee pulled out her feeding tube. We have not put it back in yet. (Do not report this to any of her doctors!! LOL) She weighed 17lbs and 12 ounces before the tube came out. Her weight has fluctuated up and down this week. She weighed 17lbs and 11ounces yesterday. She is not gaining as quickly as she would if we were tube feeding her, but she is holding her own. That is a major improvement from the last time we took out her tube. The last time, she lost weight quickly and was very fussy. She is still acting like her normal self. I feel as if she is getting satisfied, but still not taking in enough on her own to gain weight. Heart mom that have gone through this::: Any tricks to try to get her to gain weight? I am changing her slowly from 27 cal formula to pediasure. The pediasure has 30 cals per serving. That could help just bit with her weight gain.
Everyone is invited to our house Saturday March 20th. From 3 til 5 we are going to eat and socialize. This special time is to support Rhonda Pittman in love and friendship as she goes through a difficult time in her life battling breast cancer. Hope everyone can attend
Report on Mackynlee:
Last Sunday, 8 days ago, Mackynlee pulled out her feeding tube. We have not put it back in yet. (Do not report this to any of her doctors!! LOL) She weighed 17lbs and 12 ounces before the tube came out. Her weight has fluctuated up and down this week. She weighed 17lbs and 11ounces yesterday. She is not gaining as quickly as she would if we were tube feeding her, but she is holding her own. That is a major improvement from the last time we took out her tube. The last time, she lost weight quickly and was very fussy. She is still acting like her normal self. I feel as if she is getting satisfied, but still not taking in enough on her own to gain weight. Heart mom that have gone through this::: Any tricks to try to get her to gain weight? I am changing her slowly from 27 cal formula to pediasure. The pediasure has 30 cals per serving. That could help just bit with her weight gain.
Everyone is invited to our house Saturday March 20th. From 3 til 5 we are going to eat and socialize. This special time is to support Rhonda Pittman in love and friendship as she goes through a difficult time in her life battling breast cancer. Hope everyone can attend
Monday, March 1, 2010
Monday...................
Hello everyone. The party was excellent. We raised a thousand dollars for CHD research. Loved everyone wearing red.(I put a pic on my carepage. www.carepage.com/babybedwell. I will try to download pics to my blog later. I have not done this before.) I have so many people to thank for helping make this celebration such a success.
Kathryn and Shayne Lowery
Stacy and Susan Reagan
Shelly Anthony
Cindy Stogner
Jennifer Lowery
Trevor and Krystal Graves
Ms. Diane Bedwell
Ms. Diane Gibson
Ms. Faye Hicks
Susan Johnson
Ms. Susan Slocum
Sarah Blakeney
Julie Howdeshell
Ryan Stringer
Dillon Reid
Marie Haney
Kylan Reid
Jay Reagan
Bro. Tim Parker
Tammy McNabb
Wendy Hammond
Donna Ratliff
Keli Ellzey
Foxworth First Baptist Church
(Hope I did not leave any one out. If I did, don't tell me. But, please forgive me. LOL)
We are so blessed to have so much support from our friends, family, and community. We love all of you.
Please rememeber Barry and Joy Stringer in your prayers this week. Also remember Tate and Lauren Robertson in your prayers. Both families are expecting a new baby on Wednesday. This poem is dedicated to them.
Little baby on the way,
Getting bigger every day,
Kicking mommy here and there,
God please listen to our prayer.
Keep our baby safe and strong,
Let his time with us be long,
Help us teach him right form wrong,
And we shall praise thee all day long.
This little one, though not yet here,
Is loved so much, has grown quite dear.
Delivery time is growing near,
That's why we pray our plea you'll hear.
Please help up Lord, we pray to Thee
With thankful heart, on bended knee,
To raise this child that he might be,
A happy child because of me.
Please remember a friend of a friend, Billy Morris. He is in ICU at Forrest General Hospital. Mark's cousin, Carolee Smith is in the CICU at Forrest General. She suffered a massive heart attack last week. She is scheduled to have surgery Friday. My Uncle LeRoy Patterson is in the hospital in Jackson. He has blood clots in his legs and in his lungs. Pray for the Harper family, Angela Harper's father passed away. Keep all of these in your prayers.
Continue to remember our friend Rhonda Pittman who has breast cancer. We are planning a party for her at our house on March 20. Mark your calendars. I will let you know more info about this soon.
As I was looking for a bible verse, story, etc. to end with, a friend of mine text me the following verse. I will now share it with you.
I CAME SO THEY CAN HAVE REAL AND ETERNAL LIFE MORE AND BETTER LIFE THAN THEY EVER DREAMED OF. John 10:10
Kathryn and Shayne Lowery
Stacy and Susan Reagan
Shelly Anthony
Cindy Stogner
Jennifer Lowery
Trevor and Krystal Graves
Ms. Diane Bedwell
Ms. Diane Gibson
Ms. Faye Hicks
Susan Johnson
Ms. Susan Slocum
Sarah Blakeney
Julie Howdeshell
Ryan Stringer
Dillon Reid
Marie Haney
Kylan Reid
Jay Reagan
Bro. Tim Parker
Tammy McNabb
Wendy Hammond
Donna Ratliff
Keli Ellzey
Foxworth First Baptist Church
(Hope I did not leave any one out. If I did, don't tell me. But, please forgive me. LOL)
We are so blessed to have so much support from our friends, family, and community. We love all of you.
Please rememeber Barry and Joy Stringer in your prayers this week. Also remember Tate and Lauren Robertson in your prayers. Both families are expecting a new baby on Wednesday. This poem is dedicated to them.
Little baby on the way,
Getting bigger every day,
Kicking mommy here and there,
God please listen to our prayer.
Keep our baby safe and strong,
Let his time with us be long,
Help us teach him right form wrong,
And we shall praise thee all day long.
This little one, though not yet here,
Is loved so much, has grown quite dear.
Delivery time is growing near,
That's why we pray our plea you'll hear.
Please help up Lord, we pray to Thee
With thankful heart, on bended knee,
To raise this child that he might be,
A happy child because of me.
Please remember a friend of a friend, Billy Morris. He is in ICU at Forrest General Hospital. Mark's cousin, Carolee Smith is in the CICU at Forrest General. She suffered a massive heart attack last week. She is scheduled to have surgery Friday. My Uncle LeRoy Patterson is in the hospital in Jackson. He has blood clots in his legs and in his lungs. Pray for the Harper family, Angela Harper's father passed away. Keep all of these in your prayers.
Continue to remember our friend Rhonda Pittman who has breast cancer. We are planning a party for her at our house on March 20. Mark your calendars. I will let you know more info about this soon.
As I was looking for a bible verse, story, etc. to end with, a friend of mine text me the following verse. I will now share it with you.
I CAME SO THEY CAN HAVE REAL AND ETERNAL LIFE MORE AND BETTER LIFE THAN THEY EVER DREAMED OF. John 10:10
Wednesday, February 24, 2010
Happy Birthday
The following comment from Teri says it best!!!
by Teri Hendrickson
I can't believe it's been a whole year already...and only one year?! Funny how fast and slow 365 days can go. Happy Birthday little Miss Mackynlee!
Our Precious Daughter
we celebrate your birthday, as you turn one today,
but we have got the gift, just the perfect gift,
that on this very special day, God gave away,
a gift of love from up above, so unique and so rare.
God has specially made you to the very tip of your nose,
as precious as a flower, as tender as a rose.
fulfilled and blessed our lives we have and all because of you,
as sweet as honey, so innocent and pure.
we watch and pray as you grow,
in love and in faith, in beauty and in grace,
you bring us joy and pure delight,
just to gaze upon your lovely face.
our hearts you keep warm and are with you wherever you may go,
and as you go on life's journey, only happiness may you find,
you are the joyful moments through our sorrow,
you are our hope and promise of our tomorrow.
'cause you are our pride, our unconditional love we pledge,
'cause you are our joy, our undivided bond we cherish,
'cause you are our sunshine, our embrace is your shield through the rain,
'cause you are our little girl, our hugs and kisses will take away your pain.
we asked God for a flower and He gave us a bouquet
we asked God for a minute and He gave us a day
we prayed to God for true love and He gave us that too
we prayed to God for an angel and He gave us you.
May God bless you dear angel
especially on this day
that marks your birth,
for all the special ways you bring
a bit of heaven into our world.
may God bless you, Today, Tomorrow and Always
in Peace in Health in Happiness and in Love.
with love
Mom and Dad
I have been working on a slideshow of this past year. My favorite section of the video is about friendship. We appreciate all of our precious friends (new and old) for supporting us this past year. Mark and I are so blessed to have so many true friends. We live in a wonderful community. We love all of you. Words cannot express it enough. The following song is on the slideshow. This is dedicated to everyone that has helped make this past year a little less stressful for us.
Find Out Who Your Friends Are
Run your car off the side of the road
Get stuck in a ditch way out in the middle of nowhere
Or get yourself in a bind lose the shirt off your back
Need a floor, need a couch, need a bus fare
This is where the rubber meets the road
This is where the cream is gonna rise
This is what you really didn't know
This is where the truth don't lie
{Chorus}
You find out who your friends are
Somebody's gonna drop everything
Run out and crank up their car
Hit the gas, get there fast
Never stop to think 'what's in it for me?' or 'it's way too far'
They just show on up with their big old heart
You find out who your friends are
Everybody wants to slap your back
wants to shake your hand
when you're up on top of that mountain
But let one of those rocks give way then you slide back down look up
and see who's around then
This ain't where the road comes to an end
This ain't where the bandwagon stops
This is just one of those times when
A lot of folks jump off
{Chorus}
When the water's high
When the weather's not so fair
When the well runs dry
Who's gonna be there?
{Chorus}
You find out who your friends are
(yeah, yeah)
You find out who your friends are
Run your car off the side of the road
Get stuck in a ditch way out in the middle of nowhere
(Well man, I've been there)
Or get yourself in a bind lose the shirt off your back
Need a floor, need a couch, need a bus fare
(Man, I've been there)
Man, I've been there
Oooh yeah.
REMINDER: Mark your calendars for 3-5 Saturday. It is going to be a great celebration. A special thank you to Kathryn and Shayne. They have both been working so hard on getting everything ready. They are the best!! We love yall!!
by Teri Hendrickson
I can't believe it's been a whole year already...and only one year?! Funny how fast and slow 365 days can go. Happy Birthday little Miss Mackynlee!
Our Precious Daughter
we celebrate your birthday, as you turn one today,
but we have got the gift, just the perfect gift,
that on this very special day, God gave away,
a gift of love from up above, so unique and so rare.
God has specially made you to the very tip of your nose,
as precious as a flower, as tender as a rose.
fulfilled and blessed our lives we have and all because of you,
as sweet as honey, so innocent and pure.
we watch and pray as you grow,
in love and in faith, in beauty and in grace,
you bring us joy and pure delight,
just to gaze upon your lovely face.
our hearts you keep warm and are with you wherever you may go,
and as you go on life's journey, only happiness may you find,
you are the joyful moments through our sorrow,
you are our hope and promise of our tomorrow.
'cause you are our pride, our unconditional love we pledge,
'cause you are our joy, our undivided bond we cherish,
'cause you are our sunshine, our embrace is your shield through the rain,
'cause you are our little girl, our hugs and kisses will take away your pain.
we asked God for a flower and He gave us a bouquet
we asked God for a minute and He gave us a day
we prayed to God for true love and He gave us that too
we prayed to God for an angel and He gave us you.
May God bless you dear angel
especially on this day
that marks your birth,
for all the special ways you bring
a bit of heaven into our world.
may God bless you, Today, Tomorrow and Always
in Peace in Health in Happiness and in Love.
with love
Mom and Dad
I have been working on a slideshow of this past year. My favorite section of the video is about friendship. We appreciate all of our precious friends (new and old) for supporting us this past year. Mark and I are so blessed to have so many true friends. We live in a wonderful community. We love all of you. Words cannot express it enough. The following song is on the slideshow. This is dedicated to everyone that has helped make this past year a little less stressful for us.
Find Out Who Your Friends Are
Run your car off the side of the road
Get stuck in a ditch way out in the middle of nowhere
Or get yourself in a bind lose the shirt off your back
Need a floor, need a couch, need a bus fare
This is where the rubber meets the road
This is where the cream is gonna rise
This is what you really didn't know
This is where the truth don't lie
{Chorus}
You find out who your friends are
Somebody's gonna drop everything
Run out and crank up their car
Hit the gas, get there fast
Never stop to think 'what's in it for me?' or 'it's way too far'
They just show on up with their big old heart
You find out who your friends are
Everybody wants to slap your back
wants to shake your hand
when you're up on top of that mountain
But let one of those rocks give way then you slide back down look up
and see who's around then
This ain't where the road comes to an end
This ain't where the bandwagon stops
This is just one of those times when
A lot of folks jump off
{Chorus}
When the water's high
When the weather's not so fair
When the well runs dry
Who's gonna be there?
{Chorus}
You find out who your friends are
(yeah, yeah)
You find out who your friends are
Run your car off the side of the road
Get stuck in a ditch way out in the middle of nowhere
(Well man, I've been there)
Or get yourself in a bind lose the shirt off your back
Need a floor, need a couch, need a bus fare
(Man, I've been there)
Man, I've been there
Oooh yeah.
REMINDER: Mark your calendars for 3-5 Saturday. It is going to be a great celebration. A special thank you to Kathryn and Shayne. They have both been working so hard on getting everything ready. They are the best!! We love yall!!
Tuesday, February 23, 2010
1st celebration of life/CHD Awareness
Mackynlee's 1st bday is tomorrow. Her celebration is Saturday from 3 to 5 at Shayne and Kathryn Lowery's. Everyone is invited to attend. No gifts please. There will be a basket for donations if anyone would like to donate money that will go toward CHD research. Everyone is asked to wear red to this party.
I am working on a video of Mackynlee's first year of life. I have posted messages to several of you heart mom's on fb about this. I want pics of children that we have met through blogspots along this journey. I am making a special section in the slideshow that is in honor and memory of special children and their families that have fought a medical battle along side of us this past year(does not have to be just heart problems). Your support means so much to us. I would love for you to send a pic of the child and a family pic. Please include his/her diagnosis and any other info about child. Also, I need the jpeg if possible. I need this asap since the party is Saturday. If you send me a pic to use, I will mail you a copy of the slideshow. My email is markbedwell@bellsouth.net.
I am working on a video of Mackynlee's first year of life. I have posted messages to several of you heart mom's on fb about this. I want pics of children that we have met through blogspots along this journey. I am making a special section in the slideshow that is in honor and memory of special children and their families that have fought a medical battle along side of us this past year(does not have to be just heart problems). Your support means so much to us. I would love for you to send a pic of the child and a family pic. Please include his/her diagnosis and any other info about child. Also, I need the jpeg if possible. I need this asap since the party is Saturday. If you send me a pic to use, I will mail you a copy of the slideshow. My email is markbedwell@bellsouth.net.
Wednesday, February 3, 2010
New Hope
As all of you know, this is Mackynlee's birthday month. I have been thinking so much about this time last year, her birth, and the two surgeries she went through. She is a true miracle from the Heavens above.
We are planning her birthday party for the last Saturday of this month. Everyone is invited to join us for this celebration. I will be giving more details on this event soon.
"Mary set out in haste to a town of Judah, where she entered the house of Zechariah and greeted Elizabeth. When Elizabeth heard Mary's greeting, the infant leaped in her womb, and Elizabeth, filled with the Holy Spirit, cried out in a loud voice, 'Most blessed are you among women, and blessed is the fruit of your womb. And blessed are you who believed that what was spoken to you by the Lord would be fulfilled.'
And Mary said, 'My soul proclaims the greatness of the Lord; my spirit rejoices in God my Savior. For he has looked upon his handmaid's lowliness; behold, from now on all ages will call me blessed. The Mighty One has done great things for me, and holy is his name.'"
Luke 1: 39-49
God's greatest gift to a man and woman is the gift of a child. A mother is touched by the love of God in a unique way when a child comes to life within her. When her child stirs in the first movements of new life, she becomes part of God's greatest miracle. Her child is completely new, yet so close to her that she can hardly distinguish her child from herself. This child makes her life a circle of love. It is a circle made complete by God, and as long as God is present, this circle of love will be unbroken.
--------------------------------------------------------------------------------
"God our Father, you bestow your greatest blessing on us when you call upon us to take part in the miracle of bringing new life into the world. You fill us with wonder as we watch this life grow from its very beginning. And you teach us to love as we love this child whom you entrust to our care. We give you thanks for this gift of life, and as we cherish this gift we ask you to encircle us always with your fatherly love."
Wanted to touch base with everyone. Our miracle Mackynlee now weighs 17 lbs!!!!!!!!! Way to go!!!!!!!!! Yesterday we had an appointment with her neurologist. She gave us lots of new hope. She believes that Mackynlee's feeding issues do relate to her seizure activity. We are going to be changing seizure medications. This is going to take 40 days. It is a slow process. Doc believes within a couple to three months our baby will be eating with out a feeding tube!! Keep the prayers going up. This would definitely be an answer to our prayers. Yesterday's appointment was a confirmation from God that we did the right thing by not preceeding with the peg tube surgery. I know many heart babies have difficulties eating, and I can accept that her eating problems are heart related. It is just that her tongue does this weird thing. It has been doing weird things since before we left CHOP. Yesterday was the first time that I felt any doc was truely listening to me describing her strange tongue movements. In the past, I feel everyone has just written this feeding issue off to her heart defect. Which that still may be the case, but if changing her meds may get her eating on her own, hey that's easy enough to give it a try.
Physically, Mackynlee is crawling. Well, she crawls with one leg and walks with the other. It is too precious. She is babbling a lot. Last night Mark was picking on me and I said to Mackynlee to say "dada hush." She said "DAAA" quite loudly. She is just such a joy to us. She thinks she is just as big as Shelby and Connor. She likes to play chase, hide n seek, and the list goes on and on.
Prayer List:
My friend Rhonda Pittman had surgery yesterday. Keep her and her family in your prayers.
Our Uncle Charles is still in the hospital. He is still on a vent. He is not doing well at all. Lift him and his family up in your prayers continuously!!
I am sure there is many more, but I have to get to my sweet fifth graders. Break time is over for me.
We are planning her birthday party for the last Saturday of this month. Everyone is invited to join us for this celebration. I will be giving more details on this event soon.
"Mary set out in haste to a town of Judah, where she entered the house of Zechariah and greeted Elizabeth. When Elizabeth heard Mary's greeting, the infant leaped in her womb, and Elizabeth, filled with the Holy Spirit, cried out in a loud voice, 'Most blessed are you among women, and blessed is the fruit of your womb. And blessed are you who believed that what was spoken to you by the Lord would be fulfilled.'
And Mary said, 'My soul proclaims the greatness of the Lord; my spirit rejoices in God my Savior. For he has looked upon his handmaid's lowliness; behold, from now on all ages will call me blessed. The Mighty One has done great things for me, and holy is his name.'"
Luke 1: 39-49
God's greatest gift to a man and woman is the gift of a child. A mother is touched by the love of God in a unique way when a child comes to life within her. When her child stirs in the first movements of new life, she becomes part of God's greatest miracle. Her child is completely new, yet so close to her that she can hardly distinguish her child from herself. This child makes her life a circle of love. It is a circle made complete by God, and as long as God is present, this circle of love will be unbroken.
--------------------------------------------------------------------------------
"God our Father, you bestow your greatest blessing on us when you call upon us to take part in the miracle of bringing new life into the world. You fill us with wonder as we watch this life grow from its very beginning. And you teach us to love as we love this child whom you entrust to our care. We give you thanks for this gift of life, and as we cherish this gift we ask you to encircle us always with your fatherly love."
Wanted to touch base with everyone. Our miracle Mackynlee now weighs 17 lbs!!!!!!!!! Way to go!!!!!!!!! Yesterday we had an appointment with her neurologist. She gave us lots of new hope. She believes that Mackynlee's feeding issues do relate to her seizure activity. We are going to be changing seizure medications. This is going to take 40 days. It is a slow process. Doc believes within a couple to three months our baby will be eating with out a feeding tube!! Keep the prayers going up. This would definitely be an answer to our prayers. Yesterday's appointment was a confirmation from God that we did the right thing by not preceeding with the peg tube surgery. I know many heart babies have difficulties eating, and I can accept that her eating problems are heart related. It is just that her tongue does this weird thing. It has been doing weird things since before we left CHOP. Yesterday was the first time that I felt any doc was truely listening to me describing her strange tongue movements. In the past, I feel everyone has just written this feeding issue off to her heart defect. Which that still may be the case, but if changing her meds may get her eating on her own, hey that's easy enough to give it a try.
Physically, Mackynlee is crawling. Well, she crawls with one leg and walks with the other. It is too precious. She is babbling a lot. Last night Mark was picking on me and I said to Mackynlee to say "dada hush." She said "DAAA" quite loudly. She is just such a joy to us. She thinks she is just as big as Shelby and Connor. She likes to play chase, hide n seek, and the list goes on and on.
Prayer List:
My friend Rhonda Pittman had surgery yesterday. Keep her and her family in your prayers.
Our Uncle Charles is still in the hospital. He is still on a vent. He is not doing well at all. Lift him and his family up in your prayers continuously!!
I am sure there is many more, but I have to get to my sweet fifth graders. Break time is over for me.
Tuesday, January 12, 2010
Keeping NG Tube for now!!
The GI's docs nurse called this morning and left a message. Mackynlee does have a significant amount of reflux going on. This means she needs the more complicated surgical procedure where they take part of her intestines and wrap them around her esophagus. This is what I copied about this procedure.
Also referred to as the 'wrap' or 'fundo', a surgery called the nissen fundoplication is the final option for controlling very severe GERD. Because of the possible complications that can accompany this surgery, it is typically done as a last resort. It is by no means a cure for GERD and is only performed when severe symptoms and complications persist. It involves wrapping the upper portion of the stomach (fundus) around the lower portion of the esophagus.
There are different types of fundos performed: the Nissen fundoplication refers to wrapping the fundus all the way (360°) around the esophagus. As well, partial wraps can be performed. A 180° wrap is known as a Thal or Toupet fundo and a 90° wrap is known as an anterior partial wrap.
Fundoplication surgery can be performed as an open procedure or a laparoscopic procedure. The operation is basically the same but the way the surgeon gets to the stomach and esophagus is different. A laparoscopic fundoplication means that the surgeon will use several small incisions, and special instruments, with the aid of a videoscope and TV monitors to perform the fundoplication. The recovery time from a laparoscopic fundoplication is shorter than the open procedure. There is also less post-operative pain and a less visible scar. Not all fundoplications can be done laparoscopically because of adhesions from previous operations, excessive bleeding obscuring vision, too much fatty tissue or other problems, in this case, the standard method called an open fundo would be required. Great care should be taken in finding a surgeon capable of doing the laparoscopic method.
The patient is put under general anesthesia. In the laparoscopic method five tiny incisions are made in the abdomen if the method being used is open, one much larger incision is made. With the laparoscopic method, one incision is used for the laparoscope and the other four are used to insert special devices with which to perform the surgery. Many surgeons will perform a gastronomy at the time of the fundo to place a g-tube. The decision to place the g-tube is made based on the surgeon's preferences, medical condition, the child's age and eating habits prior to surgery. Some surgeons insist on placing a g-tube when doing a fundoplication while others don't routinely place a g-tube. This will likely be in place for a few months to insist with feeding and gas bloat problems. Some children may require the g-tube be in place longer than that.
When the fundo is completed successfully it works by keeping the lower esophageal sphincter closed enough to prevent reflux while still allowing food to pass through the esophagus and into the stomach.
Children with motility disorders don't do as well after a fundoplication as children with normal gastric motility and are at greater risk of complications. Children with delayed gastric emptying will sometimes have a pyloroplasty (or pylormyotomy) done when the fundoplication is done. The pyloroplasty involves cutting the pyloric muscle (the muscle at the bottom of the stomach). This allows the food to move out of the stomach faster. The pyloroplasty comes with the risk of dumping syndrome (the stomach empties too quickly) so it isn't routinely done for every child having a fundoplication.
Indications For Reflux Surgery
Esophageal stricture
Barrett’s esophagus (an absolute indication as this may end up in cancer )
Life-threatening apnea (cessation of breathing) and recurrent aspiration pneumonia
Large hiatal hernia
Failure of maximal medical therapy to reduce severe symptoms
Severe esophagitis (esophageal inflammation)
Recurrent pneumonia, chronic lung disease, bronchospasm
Failure to gain weight
Possible Complications Of The Fundoplication
Every surgery comes with risks from the anesthetic, infection and bleeding. The fundoplication surgery can have other complications as listed below.
Inability to burp or vomit, gas bloat syndrome (gas has to pass through the gastrointestinal tract causing gas pain and bloating....this can be severe for some children)
Retching (dry heaves)
Difficulty eating after surgery because of swelling at the fundo site or food aversion (may require tube feeds until the swelling decreases)
Dumping Syndrome (the stomach empties too quickly causing nausea, abdominal cramping, retching, pale skin, hypoglycemia, and sweating. Diet changes or the use of uncooked cornstarch may help alleviate the symptoms)
Small bowel obstruction (scar tissue adhesions form in the abdominal cavity causing parts of the small bowel to stick together)
Disruption of the wrap (stitches come undone and the stomach returns to 'normal' position causing the return of original problems)
Post-op dysphasia (swallowing problems including food getting stuck at the wrap site)
Hiatus hernia (the esophagus and the stomach slide up above the diaphragm and into the chest cavity)
Not all children who have a fundoplication will have these complications but many children have at least one of them. In most cases they will improve with time. If your child is facing a fundoplication read about what you can expect before and after surgery.
New research indicates that most children will still experience reflux symptoms or require medical treatment after having a fundo. According to a report in the November 2004 issue of Clinical Gastroenterology and Hepatology about two thirds of the patients in the study were seen within two months after their surgery with symptoms of reflux or received treatment for reflux.
HEART MOMS: What do you suggest for me to do now. My heart doc says to wait a few months. That is our plan for now, but in a few months if we still need a feeding tube, what do you advise us to do? Have any of your babies had this along with the PEG tube?
HEART MOMS: One more question for my heart mom friends, I have watched many of your cool videos. I know how to make a video on movie maker. How do I put that on my cp or blog? Or, what other way could I make a video to post? Remember I am not a computer whiz. You may have to walk me through step by step. Poor Ani Karg gets too many of my questions. By the way Ani, please make my blog three columns. I want to put other people's buttons on my page.
GOD IS IN CONTROL:
When we worship the Lord, let’s remember that He is in control. Nothing alarms Him, or takes Him by surprise. Nothing is too big for Him to handle, or so small it escapes His attention. When the winds of my world begin to blow, He remains seated. When raging waves surround me, He governs their temper…I need not be moved … Because the Lord is seated and sovereign…He alone is sovereign.
- Ronald James
Many times, we feel like we are in control, but God reminds us that He is in charge.
In the Old Testament book of Job, Chapter 38, God answers Job in short, to the point sentences. I particularly like verse 4 "Where wast thou when I laid the foundations of the earth? declare, if thou hast understanding."
I believe in this Chapter, God reminds Job (and us), that though we don't understand sometimes, we can trust the One who made everything.
I need to reread this once in awhile.
CELEBRATION OF MACKYNLEE'S FIRST YEAR OF LIFE:
We are steadly working on plans to celebrate our miracle's first year. The date is still tentative. I will let everyone know the details as they come together. We are very excited about this. Thanks so much to my friends Kathryn Lowery and Susan Reagan. They are both so on the ball about this event. We are asking that everyone wear red to promote CHD awareness. How cool is that? That is Kathryn's brain working overtime!!! I love my party planner friends.
ANY OTHER IDEAS FOR THIS CELELBRATION WILL BE APPRECIATED!!!
Also referred to as the 'wrap' or 'fundo', a surgery called the nissen fundoplication is the final option for controlling very severe GERD. Because of the possible complications that can accompany this surgery, it is typically done as a last resort. It is by no means a cure for GERD and is only performed when severe symptoms and complications persist. It involves wrapping the upper portion of the stomach (fundus) around the lower portion of the esophagus.
There are different types of fundos performed: the Nissen fundoplication refers to wrapping the fundus all the way (360°) around the esophagus. As well, partial wraps can be performed. A 180° wrap is known as a Thal or Toupet fundo and a 90° wrap is known as an anterior partial wrap.
Fundoplication surgery can be performed as an open procedure or a laparoscopic procedure. The operation is basically the same but the way the surgeon gets to the stomach and esophagus is different. A laparoscopic fundoplication means that the surgeon will use several small incisions, and special instruments, with the aid of a videoscope and TV monitors to perform the fundoplication. The recovery time from a laparoscopic fundoplication is shorter than the open procedure. There is also less post-operative pain and a less visible scar. Not all fundoplications can be done laparoscopically because of adhesions from previous operations, excessive bleeding obscuring vision, too much fatty tissue or other problems, in this case, the standard method called an open fundo would be required. Great care should be taken in finding a surgeon capable of doing the laparoscopic method.
The patient is put under general anesthesia. In the laparoscopic method five tiny incisions are made in the abdomen if the method being used is open, one much larger incision is made. With the laparoscopic method, one incision is used for the laparoscope and the other four are used to insert special devices with which to perform the surgery. Many surgeons will perform a gastronomy at the time of the fundo to place a g-tube. The decision to place the g-tube is made based on the surgeon's preferences, medical condition, the child's age and eating habits prior to surgery. Some surgeons insist on placing a g-tube when doing a fundoplication while others don't routinely place a g-tube. This will likely be in place for a few months to insist with feeding and gas bloat problems. Some children may require the g-tube be in place longer than that.
When the fundo is completed successfully it works by keeping the lower esophageal sphincter closed enough to prevent reflux while still allowing food to pass through the esophagus and into the stomach.
Children with motility disorders don't do as well after a fundoplication as children with normal gastric motility and are at greater risk of complications. Children with delayed gastric emptying will sometimes have a pyloroplasty (or pylormyotomy) done when the fundoplication is done. The pyloroplasty involves cutting the pyloric muscle (the muscle at the bottom of the stomach). This allows the food to move out of the stomach faster. The pyloroplasty comes with the risk of dumping syndrome (the stomach empties too quickly) so it isn't routinely done for every child having a fundoplication.
Indications For Reflux Surgery
Esophageal stricture
Barrett’s esophagus (an absolute indication as this may end up in cancer )
Life-threatening apnea (cessation of breathing) and recurrent aspiration pneumonia
Large hiatal hernia
Failure of maximal medical therapy to reduce severe symptoms
Severe esophagitis (esophageal inflammation)
Recurrent pneumonia, chronic lung disease, bronchospasm
Failure to gain weight
Possible Complications Of The Fundoplication
Every surgery comes with risks from the anesthetic, infection and bleeding. The fundoplication surgery can have other complications as listed below.
Inability to burp or vomit, gas bloat syndrome (gas has to pass through the gastrointestinal tract causing gas pain and bloating....this can be severe for some children)
Retching (dry heaves)
Difficulty eating after surgery because of swelling at the fundo site or food aversion (may require tube feeds until the swelling decreases)
Dumping Syndrome (the stomach empties too quickly causing nausea, abdominal cramping, retching, pale skin, hypoglycemia, and sweating. Diet changes or the use of uncooked cornstarch may help alleviate the symptoms)
Small bowel obstruction (scar tissue adhesions form in the abdominal cavity causing parts of the small bowel to stick together)
Disruption of the wrap (stitches come undone and the stomach returns to 'normal' position causing the return of original problems)
Post-op dysphasia (swallowing problems including food getting stuck at the wrap site)
Hiatus hernia (the esophagus and the stomach slide up above the diaphragm and into the chest cavity)
Not all children who have a fundoplication will have these complications but many children have at least one of them. In most cases they will improve with time. If your child is facing a fundoplication read about what you can expect before and after surgery.
New research indicates that most children will still experience reflux symptoms or require medical treatment after having a fundo. According to a report in the November 2004 issue of Clinical Gastroenterology and Hepatology about two thirds of the patients in the study were seen within two months after their surgery with symptoms of reflux or received treatment for reflux.
HEART MOMS: What do you suggest for me to do now. My heart doc says to wait a few months. That is our plan for now, but in a few months if we still need a feeding tube, what do you advise us to do? Have any of your babies had this along with the PEG tube?
HEART MOMS: One more question for my heart mom friends, I have watched many of your cool videos. I know how to make a video on movie maker. How do I put that on my cp or blog? Or, what other way could I make a video to post? Remember I am not a computer whiz. You may have to walk me through step by step. Poor Ani Karg gets too many of my questions. By the way Ani, please make my blog three columns. I want to put other people's buttons on my page.
GOD IS IN CONTROL:
When we worship the Lord, let’s remember that He is in control. Nothing alarms Him, or takes Him by surprise. Nothing is too big for Him to handle, or so small it escapes His attention. When the winds of my world begin to blow, He remains seated. When raging waves surround me, He governs their temper…I need not be moved … Because the Lord is seated and sovereign…He alone is sovereign.
- Ronald James
Many times, we feel like we are in control, but God reminds us that He is in charge.
In the Old Testament book of Job, Chapter 38, God answers Job in short, to the point sentences. I particularly like verse 4 "Where wast thou when I laid the foundations of the earth? declare, if thou hast understanding."
I believe in this Chapter, God reminds Job (and us), that though we don't understand sometimes, we can trust the One who made everything.
I need to reread this once in awhile.
CELEBRATION OF MACKYNLEE'S FIRST YEAR OF LIFE:
We are steadly working on plans to celebrate our miracle's first year. The date is still tentative. I will let everyone know the details as they come together. We are very excited about this. Thanks so much to my friends Kathryn Lowery and Susan Reagan. They are both so on the ball about this event. We are asking that everyone wear red to promote CHD awareness. How cool is that? That is Kathryn's brain working overtime!!! I love my party planner friends.
ANY OTHER IDEAS FOR THIS CELELBRATION WILL BE APPRECIATED!!!
Monday, January 11, 2010
Birthday Party Ideas?
Mackynlee is doing great. I still have not heard from the doctors concerning the peg tube. We have increased Mackynlee's formula intake from 4 ounces every 3 hours to 6 ounces every 3 hours. She is not throwing up and seems to be much more satisfied. We were having to hold her all of the time. Talk about wear you out!!
Mark's Uncle Charles is still in the hospital. Doctors will be running test today to figure out what exactly is going on with him.
Okay, the real reason for this post: HEART MOMS I need ideas. We are cosidering having Mackynlee a first birthday party on Valentine's weekend. I am planning to do a heart theme of coarse. I would like to somehow pull in chd awareness. Any ideas? The only thing that is coming to my mind is having children bring riding toys and having signs already made with defect facts to hang on their riding toys. Maybe a parade to promote awareness?
Mark's Uncle Charles is still in the hospital. Doctors will be running test today to figure out what exactly is going on with him.
Okay, the real reason for this post: HEART MOMS I need ideas. We are cosidering having Mackynlee a first birthday party on Valentine's weekend. I am planning to do a heart theme of coarse. I would like to somehow pull in chd awareness. Any ideas? The only thing that is coming to my mind is having children bring riding toys and having signs already made with defect facts to hang on their riding toys. Maybe a parade to promote awareness?
Saturday, January 9, 2010
Lots of Prayer Requests
Mackynlee's appointment Wednesday with heart doc went great. Her heart is doing fine. She got taken off of one of her meds!! YAY Still not sure about peg tube surgery. Heart doc and GI doc are deciding for us. We should hear something soon.
Seems like everytime I get a phone call, check face book, or get a text, it is bad news. Please pray for the following who is in need.
Our Uncle Charles Montgomery was flown from Wesley Medical Center to Tulane yesterday. His liver is not functioning properly. There is concern about his kidneys shutting down. This is Mark's mother's sister's husband. He lives in Sumrall. His amonia level has gone from 300+ to now around 50. This is a good thing. His son told me this was a good level for him. Doctors are running test to find out more info. Uncle Charles has a shunt in his brain from previous surgeries.
Misty McNabb's neice(less than 2 years old) is in Tulane. I copied the following from Misty's fb page:
Our sweet Avery has been diagnosed with A.L.L. T-Cell Leukiemia. We are heartbroken. The docs are very positive and say 85 to 90 percent Avery can be cured! The 1st month is the hardest for Avery - she began last night with her "induction chemotherapy". Please pray for Avery each and everyday and also strength for Ashl...ey and Aj to get through each day as they learn how to take care of her.
This family has been through so much already with the "sick children" world. Misty's son Myles has been sick since he was born and has had surgeries himself.
Mary Nell Livingston's brother Forrest Danton had a brain anurism. He is in critical condition. Pray for him and this family. Mary Nell is a teacher at WMP. I have just recieved an email stating that he has passed. Please pray for this family.
Wishing Angel Ethin a Happy 1st Birthday. He was born January 9, 2009. He met Jesus on June 27, 2009. His life was cut short due to congenitial heart disease. Please lift his family up in your prayers today.
I am asking all of you to go to the following website: http://www.ipetitions.com/petition/chdfight/. Please sign this petition. It is "Fight For Newborns Who Can't Speak For Themselves". This is free. You do not have to donate. After clicking Sign, you do not have to do anything else. Your signiture is ...valuable and makes a real difference. Think about my Mackynlee. The doctor's first option for us was to abort.
One of my high school teachers sent me the following email this morning. I wanted to share it with all of you.
BURNED BISCUITS
When I was a kid, my mom liked to make breakfast food for dinner every now and then.
I remember one night in particular when she had made breakfast after a long, hard day at work.
On that evening so long ago, my mom placed a plate of eggs, sausage, and extremely burned biscuits in front of my dad.
I remember waiting to see if anyone noticed, yet all my dad did was reach for his biscuit, smile at my mom and ask me how my day was at school.
I don't remember what I told him that night, but I do remember watching him smear butter and jelly on that biscuit and eat every bite.
When I got up from the table that evening, I remember hearing my mom apologize to my dad for burning the biscuits, and I'll never forget what he said.
He smiled at her and said, "Honey, I love burned biscuits."
Later that night, I went to kiss my dad good night and I asked him if he really liked his biscuits burned.
He wrapped me in his arms and said, "Your mom put in a hard day at work today and she's real tired. And besides, a little burnt biscuit never hurt anyone."
Life is full of imperfect things and imperfect people. I'm not the best at hardly anything, and I forget birthdays and anniversaries just like everyone else, but what I've learned over the years is that learning to accept each others faults, and choosing to celebrate each others differences, is one of the most important keys to creating a healthy, growing, and lasting relationship.
And that's my prayer for you today. That you will learn to take the good, the bad, and the ugly parts of your life and lay them at the feet of God, because in the end, He's the only one who will be able to give you a relationship where a burnt biscuit isn't a deal-breaker.
We could extend this to any relationship. In fact, understanding is the base of any relationship, be it a husband-wife or parent-child or friendship.
Don't put the key to your happiness in someone else's pocket, keep it in your own.
God bless you today and always.
So, pass me a biscuit, and yes, the burnt one will do just fine.
And pass this along to someone who has enriched your life . . . I just did.
Seems like everytime I get a phone call, check face book, or get a text, it is bad news. Please pray for the following who is in need.
Our Uncle Charles Montgomery was flown from Wesley Medical Center to Tulane yesterday. His liver is not functioning properly. There is concern about his kidneys shutting down. This is Mark's mother's sister's husband. He lives in Sumrall. His amonia level has gone from 300+ to now around 50. This is a good thing. His son told me this was a good level for him. Doctors are running test to find out more info. Uncle Charles has a shunt in his brain from previous surgeries.
Misty McNabb's neice(less than 2 years old) is in Tulane. I copied the following from Misty's fb page:
Our sweet Avery has been diagnosed with A.L.L. T-Cell Leukiemia. We are heartbroken. The docs are very positive and say 85 to 90 percent Avery can be cured! The 1st month is the hardest for Avery - she began last night with her "induction chemotherapy". Please pray for Avery each and everyday and also strength for Ashl...ey and Aj to get through each day as they learn how to take care of her.
This family has been through so much already with the "sick children" world. Misty's son Myles has been sick since he was born and has had surgeries himself.
Mary Nell Livingston's brother Forrest Danton had a brain anurism. He is in critical condition. Pray for him and this family. Mary Nell is a teacher at WMP. I have just recieved an email stating that he has passed. Please pray for this family.
Wishing Angel Ethin a Happy 1st Birthday. He was born January 9, 2009. He met Jesus on June 27, 2009. His life was cut short due to congenitial heart disease. Please lift his family up in your prayers today.
I am asking all of you to go to the following website: http://www.ipetitions.com/petition/chdfight/. Please sign this petition. It is "Fight For Newborns Who Can't Speak For Themselves". This is free. You do not have to donate. After clicking Sign, you do not have to do anything else. Your signiture is ...valuable and makes a real difference. Think about my Mackynlee. The doctor's first option for us was to abort.
One of my high school teachers sent me the following email this morning. I wanted to share it with all of you.
BURNED BISCUITS
When I was a kid, my mom liked to make breakfast food for dinner every now and then.
I remember one night in particular when she had made breakfast after a long, hard day at work.
On that evening so long ago, my mom placed a plate of eggs, sausage, and extremely burned biscuits in front of my dad.
I remember waiting to see if anyone noticed, yet all my dad did was reach for his biscuit, smile at my mom and ask me how my day was at school.
I don't remember what I told him that night, but I do remember watching him smear butter and jelly on that biscuit and eat every bite.
When I got up from the table that evening, I remember hearing my mom apologize to my dad for burning the biscuits, and I'll never forget what he said.
He smiled at her and said, "Honey, I love burned biscuits."
Later that night, I went to kiss my dad good night and I asked him if he really liked his biscuits burned.
He wrapped me in his arms and said, "Your mom put in a hard day at work today and she's real tired. And besides, a little burnt biscuit never hurt anyone."
Life is full of imperfect things and imperfect people. I'm not the best at hardly anything, and I forget birthdays and anniversaries just like everyone else, but what I've learned over the years is that learning to accept each others faults, and choosing to celebrate each others differences, is one of the most important keys to creating a healthy, growing, and lasting relationship.
And that's my prayer for you today. That you will learn to take the good, the bad, and the ugly parts of your life and lay them at the feet of God, because in the end, He's the only one who will be able to give you a relationship where a burnt biscuit isn't a deal-breaker.
We could extend this to any relationship. In fact, understanding is the base of any relationship, be it a husband-wife or parent-child or friendship.
Don't put the key to your happiness in someone else's pocket, keep it in your own.
God bless you today and always.
So, pass me a biscuit, and yes, the burnt one will do just fine.
And pass this along to someone who has enriched your life . . . I just did.
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