Okay, I have not wanted to post this, but here goes. Mackynlee lost 6 ounces with her tube taken out in a week. This is way too much for her to lose. Actually, any ounce is too much for her to lose. She needs to gain weight!! At least we know from giving her a break from the tube that she is not going to eat enough without it. We were just wanting to give it a try. For our peace of mind, we know she still has to have the tube. She needs to eat about 27 ounces a day. She was eating around 20 ounces a day on her on without the tube. Getting these 20 ounces down her each day was a struggle. We were nonstop feeding her. She was also very restless because she was never getting full. She snacked continuously.
We put the feeding tube back in yesterday. She is gagging and throwing up again. It is pure torture for all of us. It is so hard seeing your baby do this after every feeding!!! We may go ahead with the surgery to get the peg tube, or we may wait a while. There are many reasons to go ahead and get the tube, but I also have lots of hesitations about getting peg tube.
Reasons to get it:
She does not do well with the feeding tube in her throat.
Reasons not to go ahead with it:
I do not want her exposed to sickness in the hospital.
I do not want her to have any setbacks from having another surgery or just by being in the hospital.
I still have hopes that in a month or so her eating will pick up again.
I know there are many more reasons, but my brain is not working this morning. Pray I deal with this better. I know things could be a lot worse for us, but this is draining me. I am so tired of people offering suggestions of what I should do to get her to eat. We do not know why she is not eating. It has nothing to do with the taste of food or any other common reasons normal babies do not eat. People do not understand you cannot compare a heart baby in any way to a normal baby!!! Sorry for being so negative, I am just going through one of my feel sorry for myself and my baby days. I actually dodged people yesterday in Walmart because I did not want to be questioned or hear any suggestions!!!!!
I am going to share a post from another heart mom about the feeding tube issues. This is so similar to our feelings!!!
We did a trial for Veiyah's feeding tube to come out. She needs a total of 700 ml's a day for her calorie intake goals to be met. Just to be hydrated she needed at least 500. She got to about 550 a day. She did SO good. At first she went up 1.5 oz. Then 4 days later, she lost 4oz. So they said by the next visit (2 days) she HAD to be up the 4oz in weight gain for the tube to stay out. That visit came and she only gained 1 oz back. It was hard to have to put this tube back in, but I'm remembering how trivial this is compared to not having her with us. It is a pain, I won't lie. She is constantly pulling it out. We keep her arms wrapped, and an 8 month old baby girl shouldn't live like that. ;) So, we are looking at getting Veiyah scheduled to get a G-tube. I've wavered over this decision for months and Jer and I really do feel a peace about it now. Now it's just a waiting game. We wait on GI surgeons to get back with us on when! As for now, our consultation is this Friday. She also has her neurology appointment Friday as well. Please pray for both appts to go well.
It was SO much fun having that tube out of V's nose for a week and a half! She was a different baby!! She held her head up SO much better, no wobbling. She laughed more, smiled more, and we could hear her real voice rather than a muffled one from a tube swelling her throat. Wow, that girl has a voice! :)
Wednesday, December 30, 2009
Thursday, December 24, 2009
Merry Christmas
Mackynlee did great the first 24 hours having her tube out. She ate 21 ounces of formula, a half jar of baby food, two teaspoons of dumplin juice, peanut butter fudge, and 5 or 6 french fries. Today she is not eating so well. She is very fussy and very hungry, but just will not take much. Keep praying. I am not giving up just yet. She has only take about 10 ounces since 9 p.m. She has not wanted to eat any food this morning. She just holds it in her hand and throws it down. She is holding her own bottle!! Seems like she eats better when I let her hold it.
My friend Kolbi and baby Kade are home. His ultrasound was fine. Doctors want to do a follow up ultrasound in two months just to make sure all is okay. Thanks for special prayers for this family.
Hammer and Tonya: Thanks so much for the package of goodies. When I opened the box, I knew who it was from before opening the card. That is so sweet of yall. We will save the crab boil for when yall come for another visit. I hope it will be soon. The banana nut bread and peanut butter fudge is fine. Mackynlee loves the fudge!!! Merry Christmas.
I want to wish a very good friend of mine (my boss) Sherrie Williams a happy birthday. The holidays are not always a wonderful time of year for everyone. She lost her son in 2003 on Christmas Eve which is also her birthday. Two years later her husband passed away during the holidays. This is a difficult time of year for her. She has also lost several more family members in the past few years. I love you and wish I could make everything better. This poem is for you.
MAY YOU HAVE PEACE
I cannot say that I know, just how you feel
For your hurt is so great, and will take God's touch to heal
Yet is it possible for such a wound, to completely ever mend
When you've lost your mate, parent, child or good friend
Please know that I pray for you, each and every day
And feel God's Holy Spirit, in small and simple ways
And then I am reminded, of such a simple phrase
With all the strength that's in you, please walk by faith
So come to me and talk about, anything you feel
For I'll be here in body, but Christ will soon reveal
That while it is impossible, for a friend to end your pain
HE will bring about a peace, and in your hurt sustain
----------------------------------------
When all five of us were eating breakfast this morning, my thoughts were with everyone that is in the hospital during this time of year. The hospital is a difficult place to be. I cannot imagine being there during the holidays. When I checked my messages this morning, a friend of ours, Kristen Colman had left a message that she was praying for us. Thank you Kristen for your prayers for us. Tell Breanna that Shelby says Merry Christmas and she wants to go back the the PRMH to play with her again. Her angel (Angelina) is still in the hospital. Their caring bridge is AngelinaColman. I encourage you to read their amazing story. They are still in the hospital. Kristen, both girls are just a beautiful as ever!!! Our thoughts and prayers are with your family. You are so strong. I do not know how you keep such a smile on your face. I ask that all of my readers pray specifically for the children and their caregivers that are in the hospital during the holidays and thank God as you are praying for the things in life you take for granted. Healthy children, homeade candy, walking to your kitchen for a cup of coffee, etc.
-------------------------------------------------------------------------
Christmas Eve: I hope all of you get a visit from Santa tonight!!
It was Christmas Eve and the frost fairies were busy getting ready for Christmas Day. First of all they spread the loveliest white snow carpet over the rough, bare ground; then they hung the bushes and trees with icicles that flashed like diamonds in the moonlight. Later on, they planned to draw beautiful frost pictures on the window panes, to surprise the little children in the morning.
The stars shone brightly and the moon sent floods of light in every nook and corner. How could any one think of sleeping when there was such a glory outside!
Jessie and Fred had gone to bed very early so they might be the first to shout "Merry Christmas!" but their eyes would not stay shut.
"Oh dear! It must be 'most morning," said Fred; "let us creep softly down stairs and maybe we'll catch Santa Claus before he rides off."
Hand in hand they tiptoed to the dining-room and peeped out the big window - surely, surely, that was something climbing up the roof of cousin Nellie's house; it must be old Santa. Fred gave a chuckle of delight; to be sure the reindeer were very queer looking objects, and the sleigh such a funny shape, but the children were satisfied.
The old fir tree, whose high branches almost touched the roof, knew all about those shadows, but it was so old no one could ever understand a word of the many tales it told.
"There's something scratching on the door," whispered Jessie; but it was only a mouse, who had sniffed the delightful odors of the Christmas goodies and was trying his best to find a way into the pantry and test them with his sharp teeth.
"Come," said Jessie, "we'll turn to icicles if we stay here much, longer"; so up-stairs they quickly scampered.
Papa had been to town on an errand, so it was quite late when he came home. As he was hunting in his pockets for his key, he heard a pitiful cry, and looking down he saw a big, white cat carrying a tiny kitten in her mouth.
"Poor thing," said papa, "you shall come inside till morning."
Santa Claus had been there with the nicest wagon for Fred and a warm, seal-skin cap that lay right in the middle of it. When papa left the room, puss and her kitty were curled up comfortably on the rug singing their sleepy song.
The sun was shining brightly in the dining-room window when Jessie and Fred made their appearance; then Fred just laughed with delight, for right in the crown of his new cap lay the cutest white kitten, with big, blue eyes and wee pink nose, while standing close by as if to guard her darling from danger, was good old mother puss.
"I never had a live Christmas present before," said Fred, "now I know Santa Claus read the letter I threw up the chimney because I told him to bring me a kitten and here it is."
Papa smiled and looked at mamma, and then everybody said "Merry Christmas" at once.
My friend Kolbi and baby Kade are home. His ultrasound was fine. Doctors want to do a follow up ultrasound in two months just to make sure all is okay. Thanks for special prayers for this family.
Hammer and Tonya: Thanks so much for the package of goodies. When I opened the box, I knew who it was from before opening the card. That is so sweet of yall. We will save the crab boil for when yall come for another visit. I hope it will be soon. The banana nut bread and peanut butter fudge is fine. Mackynlee loves the fudge!!! Merry Christmas.
I want to wish a very good friend of mine (my boss) Sherrie Williams a happy birthday. The holidays are not always a wonderful time of year for everyone. She lost her son in 2003 on Christmas Eve which is also her birthday. Two years later her husband passed away during the holidays. This is a difficult time of year for her. She has also lost several more family members in the past few years. I love you and wish I could make everything better. This poem is for you.
MAY YOU HAVE PEACE
I cannot say that I know, just how you feel
For your hurt is so great, and will take God's touch to heal
Yet is it possible for such a wound, to completely ever mend
When you've lost your mate, parent, child or good friend
Please know that I pray for you, each and every day
And feel God's Holy Spirit, in small and simple ways
And then I am reminded, of such a simple phrase
With all the strength that's in you, please walk by faith
So come to me and talk about, anything you feel
For I'll be here in body, but Christ will soon reveal
That while it is impossible, for a friend to end your pain
HE will bring about a peace, and in your hurt sustain
----------------------------------------
When all five of us were eating breakfast this morning, my thoughts were with everyone that is in the hospital during this time of year. The hospital is a difficult place to be. I cannot imagine being there during the holidays. When I checked my messages this morning, a friend of ours, Kristen Colman had left a message that she was praying for us. Thank you Kristen for your prayers for us. Tell Breanna that Shelby says Merry Christmas and she wants to go back the the PRMH to play with her again. Her angel (Angelina) is still in the hospital. Their caring bridge is AngelinaColman. I encourage you to read their amazing story. They are still in the hospital. Kristen, both girls are just a beautiful as ever!!! Our thoughts and prayers are with your family. You are so strong. I do not know how you keep such a smile on your face. I ask that all of my readers pray specifically for the children and their caregivers that are in the hospital during the holidays and thank God as you are praying for the things in life you take for granted. Healthy children, homeade candy, walking to your kitchen for a cup of coffee, etc.
-------------------------------------------------------------------------
Christmas Eve: I hope all of you get a visit from Santa tonight!!
It was Christmas Eve and the frost fairies were busy getting ready for Christmas Day. First of all they spread the loveliest white snow carpet over the rough, bare ground; then they hung the bushes and trees with icicles that flashed like diamonds in the moonlight. Later on, they planned to draw beautiful frost pictures on the window panes, to surprise the little children in the morning.
The stars shone brightly and the moon sent floods of light in every nook and corner. How could any one think of sleeping when there was such a glory outside!
Jessie and Fred had gone to bed very early so they might be the first to shout "Merry Christmas!" but their eyes would not stay shut.
"Oh dear! It must be 'most morning," said Fred; "let us creep softly down stairs and maybe we'll catch Santa Claus before he rides off."
Hand in hand they tiptoed to the dining-room and peeped out the big window - surely, surely, that was something climbing up the roof of cousin Nellie's house; it must be old Santa. Fred gave a chuckle of delight; to be sure the reindeer were very queer looking objects, and the sleigh such a funny shape, but the children were satisfied.
The old fir tree, whose high branches almost touched the roof, knew all about those shadows, but it was so old no one could ever understand a word of the many tales it told.
"There's something scratching on the door," whispered Jessie; but it was only a mouse, who had sniffed the delightful odors of the Christmas goodies and was trying his best to find a way into the pantry and test them with his sharp teeth.
"Come," said Jessie, "we'll turn to icicles if we stay here much, longer"; so up-stairs they quickly scampered.
Papa had been to town on an errand, so it was quite late when he came home. As he was hunting in his pockets for his key, he heard a pitiful cry, and looking down he saw a big, white cat carrying a tiny kitten in her mouth.
"Poor thing," said papa, "you shall come inside till morning."
Santa Claus had been there with the nicest wagon for Fred and a warm, seal-skin cap that lay right in the middle of it. When papa left the room, puss and her kitty were curled up comfortably on the rug singing their sleepy song.
The sun was shining brightly in the dining-room window when Jessie and Fred made their appearance; then Fred just laughed with delight, for right in the crown of his new cap lay the cutest white kitten, with big, blue eyes and wee pink nose, while standing close by as if to guard her darling from danger, was good old mother puss.
"I never had a live Christmas present before," said Fred, "now I know Santa Claus read the letter I threw up the chimney because I told him to bring me a kitten and here it is."
Papa smiled and looked at mamma, and then everybody said "Merry Christmas" at once.
Monday, December 7, 2009
Waiting on G-Tube Appointmnet
I do not have any medical updates, but I just wanted to know all is going fine. I will update when we know a date for the G-Tube placement. Please pray that Mackynlee will miraculously begin eating 27+ ounces through her bottle each day. Yesterday she ate 8 ounces by mouth. I know 19 ounces more is a long way to go, but through prayer all things are possible.
I had a great birthday. Thanks to Tracy for buying me a planter that says "It is not waiting for the storm to pass. It is learning how to dance in the rain." I needed reminding of that saying. Shelby had me a surprise bday party right after school. It was the five of us, Meemaw, Granny, and Nina. It was the best bday I have had in a long time. I think it was the seeing the excitement in Shelby and Connor's eyes. I know I am truely loved.
I also posted a few pictures from Connor's bday party in the gallory. I think there's also a deer hunting picture.
It snowed here this past weekend. I added some pictures of Mackynlee in a Christmas dress that was Shelby's. She loved the snow.
We have gotten Mackynlee out of the house quite a few times lately. I hope we are not getting too brave, but I just wanted her to be apart of getting our Christmas tree, my birthday dinner, and I took her to two birthday parties. Oh, yeah, we took her to church too.
The first birthday party was for Olivia Torian. She was born two years ago with trisomy ?13?. It is a trisomy that is incompatible with life. She is a local miracle as she has proved medical theory wrong. Her mother and I have been friends since grade school. It was so sweet having two local miracles together.
The second bday party was for Connor's girlfriend haha. Our families are all close. Tracy and I are friends. Chad and Mark are friends. Our big girls are friends, and Madelyn and Connor are friends. I just did not want to leave Mackynlee out.
I enjoyed so much taking her to church. No one touched her and the people that came by to look were very respectful. It felt so good having her in the same place with so many of the people that prays for her daily.
I am going to leave you with a story. I encourage all to read it. This was inspired by Shelby. Last night after church, her teacher had taught her the colors of Christmas. Thank you Tammy Herrington for taking the time to teach my baby about Jesus.
Teach the children...
Late one Christmas Eve, I sank back, tired but content, into my easy chair. The kids were in bed, the gifts were wrapped, the milk and cookies waited by the fireplace for Santa. As I sat back admiring the tree with its decorations, I couldn't help feeling that something important was missing. It wasn't long before the tiny twinkling tree lights lulled me to sleep.
I don't know how long I slept, but all of a sudden I knew that I wasn't alone. I opened my eyes, and you can imagine my surprise when I saw Santa Claus himself standing next to my Christmas tree. He was dressed all in fur from his head to his foot just as the poem described him, but he was not the "jolly old elf" of Christmas legend. The man who stood before me looked sad and disappointed, and there were tears in his eyes.
"Santa, what's wrong?" I asked, "Why are you crying?"
"It's the children," Santa replied sadly.
"But Santa, the children love you," I said.
"Oh, I know they love me, and they love the gifts I bring them," Santa said, "but the children of today seem to have somehow missed out on the true spirit of Christmas. It's not their fault. It's just that the adults, many of them not having been taught themselves, have forgotten to teach the children."
"Teach them what?" I asked.
Santa's kind old face became soft, more gentle. His eyes began to shine with something more than tears. He spoke softly. "Teach the children the true meaning of Christmas. Teach them that the part of Christmas we can see, hear, and touch is much more than meets the eye. Teach them the symbolism behind the customs and traditions of Christmas which we now observe. Teach them what it is they truly represent."
Santa reached into his bag and pulled out a tiny Christmas tree and set it on my mantle. "Teach them about the Christmas tree. Green is the second color of Christmas. The stately evergreen, with its unchanging color, represents the hope of eternal life in Jesus. Its needles point heavenward as a reminder that mankind's thoughts should turn heavenward as well."
Santa reached into his bag again and pulled out a shiny star and placed it at the top of the small tree. "The star was the heavenly sign of promise. God promised a Savior for the world and the star was the sign of the fulfillment of that promise on the night that Jesus Christ was born. Teach the children that God always fulfills His promises, and that wise men still seek Him."
"Red," said Santa, "is the first color of Christmas." "He pulled forth a red ornament for the tiny tree. Red is deep, intense, vivid. It is the color of the life-giving blood that flows through our veins. It is the symbol of God's greatest gift. Teach the children that Christ gave his life and shed his blood for them that they might have eternal life. When they see the color red, it should remind them of that most wonderful gift."
Santa found a silver bell in his pack and placed it on the tree. "Just as lost sheep are guided to safety by the sound of the bell, it continues to ring today for all to be guided to the fold. Teach the children to follow the true Shepherd, who gave His life for the sheep."
Santa placed a candle on the mantle and lit it. The soft glow from its one tiny flame brightened the room. "The glow of the candle represents how people can show their thanks for the gift of God's son that Christmas Eve long ago. Teach the children to follow in Christ's foot steps...to go about doing good. Teach them to let their light so shine before people that all may see it and glorify God. This is what is symbolized when the twinkle lights shine on the tree like hundreds of bright, shining candles, each of them representing one of God's precious children, their light shining for all to see."
Again Santa reached into his bag and this time he brought forth a tiny red and white striped cane. As he hung it on the tree he spoke softly. "The candy cane is a stick of hard white candy. White to symbolize the virgin birth and sinless nature of Jesus, and hard to symbolize the Solid Rock the foundation of the church, and the firmness of God's promises. The candy cane is in the form of a "J" to represent the precious name of Jesus, who came to earth. It also represents the Good Shepherd's crook, which He uses to reach down into the ditches of the world to lift out the fallen lambs who, like all sheep, have gone astray. The original candy cane had three small red stripes, which are the stripes of the scourging Jesus received by which we are healed, and a large red stripe that represents the shed blood of Jesus, so that we can have the promise of eternal life.
"Teach these things to the children."
Santa brought out a beautiful wreath made of fresh, fragrant greenery tied with a bright red bow. "The bow reminds us of the bond of perfection, which is love. The wreath embodies all the good things about Christmas for those with eyes to see and hearts to understand. It contains the colors of red and green and the heaven-turned needles of the evergreen. The bow tells the story of good will towards all and its color reminds us of Christ's sacrifice. Even its very shape is symbolic, representing eternity and the eternal nature of Christ's love. It is a circle, without beginning and without end. These are the things you must teach the children."
I asked, "But where does that leave you, Santa?"
The tears gone now from his eyes, a smile broke over Santa's face. "Why bless you, my dear," he laughed, "I'm only a symbol myself. I represent the spirit of family fun and the joy of giving and receiving. If the children are taught these other things, there is no danger that I'll ever be forgotten."
"I think I'm beginning to understand."
"That's why I came," said Santa. "You're an adult. If you don't teach the children these things, then who will?"
(Author Unknown)
I had a great birthday. Thanks to Tracy for buying me a planter that says "It is not waiting for the storm to pass. It is learning how to dance in the rain." I needed reminding of that saying. Shelby had me a surprise bday party right after school. It was the five of us, Meemaw, Granny, and Nina. It was the best bday I have had in a long time. I think it was the seeing the excitement in Shelby and Connor's eyes. I know I am truely loved.
I also posted a few pictures from Connor's bday party in the gallory. I think there's also a deer hunting picture.
It snowed here this past weekend. I added some pictures of Mackynlee in a Christmas dress that was Shelby's. She loved the snow.
We have gotten Mackynlee out of the house quite a few times lately. I hope we are not getting too brave, but I just wanted her to be apart of getting our Christmas tree, my birthday dinner, and I took her to two birthday parties. Oh, yeah, we took her to church too.
The first birthday party was for Olivia Torian. She was born two years ago with trisomy ?13?. It is a trisomy that is incompatible with life. She is a local miracle as she has proved medical theory wrong. Her mother and I have been friends since grade school. It was so sweet having two local miracles together.
The second bday party was for Connor's girlfriend haha. Our families are all close. Tracy and I are friends. Chad and Mark are friends. Our big girls are friends, and Madelyn and Connor are friends. I just did not want to leave Mackynlee out.
I enjoyed so much taking her to church. No one touched her and the people that came by to look were very respectful. It felt so good having her in the same place with so many of the people that prays for her daily.
I am going to leave you with a story. I encourage all to read it. This was inspired by Shelby. Last night after church, her teacher had taught her the colors of Christmas. Thank you Tammy Herrington for taking the time to teach my baby about Jesus.
Teach the children...
Late one Christmas Eve, I sank back, tired but content, into my easy chair. The kids were in bed, the gifts were wrapped, the milk and cookies waited by the fireplace for Santa. As I sat back admiring the tree with its decorations, I couldn't help feeling that something important was missing. It wasn't long before the tiny twinkling tree lights lulled me to sleep.
I don't know how long I slept, but all of a sudden I knew that I wasn't alone. I opened my eyes, and you can imagine my surprise when I saw Santa Claus himself standing next to my Christmas tree. He was dressed all in fur from his head to his foot just as the poem described him, but he was not the "jolly old elf" of Christmas legend. The man who stood before me looked sad and disappointed, and there were tears in his eyes.
"Santa, what's wrong?" I asked, "Why are you crying?"
"It's the children," Santa replied sadly.
"But Santa, the children love you," I said.
"Oh, I know they love me, and they love the gifts I bring them," Santa said, "but the children of today seem to have somehow missed out on the true spirit of Christmas. It's not their fault. It's just that the adults, many of them not having been taught themselves, have forgotten to teach the children."
"Teach them what?" I asked.
Santa's kind old face became soft, more gentle. His eyes began to shine with something more than tears. He spoke softly. "Teach the children the true meaning of Christmas. Teach them that the part of Christmas we can see, hear, and touch is much more than meets the eye. Teach them the symbolism behind the customs and traditions of Christmas which we now observe. Teach them what it is they truly represent."
Santa reached into his bag and pulled out a tiny Christmas tree and set it on my mantle. "Teach them about the Christmas tree. Green is the second color of Christmas. The stately evergreen, with its unchanging color, represents the hope of eternal life in Jesus. Its needles point heavenward as a reminder that mankind's thoughts should turn heavenward as well."
Santa reached into his bag again and pulled out a shiny star and placed it at the top of the small tree. "The star was the heavenly sign of promise. God promised a Savior for the world and the star was the sign of the fulfillment of that promise on the night that Jesus Christ was born. Teach the children that God always fulfills His promises, and that wise men still seek Him."
"Red," said Santa, "is the first color of Christmas." "He pulled forth a red ornament for the tiny tree. Red is deep, intense, vivid. It is the color of the life-giving blood that flows through our veins. It is the symbol of God's greatest gift. Teach the children that Christ gave his life and shed his blood for them that they might have eternal life. When they see the color red, it should remind them of that most wonderful gift."
Santa found a silver bell in his pack and placed it on the tree. "Just as lost sheep are guided to safety by the sound of the bell, it continues to ring today for all to be guided to the fold. Teach the children to follow the true Shepherd, who gave His life for the sheep."
Santa placed a candle on the mantle and lit it. The soft glow from its one tiny flame brightened the room. "The glow of the candle represents how people can show their thanks for the gift of God's son that Christmas Eve long ago. Teach the children to follow in Christ's foot steps...to go about doing good. Teach them to let their light so shine before people that all may see it and glorify God. This is what is symbolized when the twinkle lights shine on the tree like hundreds of bright, shining candles, each of them representing one of God's precious children, their light shining for all to see."
Again Santa reached into his bag and this time he brought forth a tiny red and white striped cane. As he hung it on the tree he spoke softly. "The candy cane is a stick of hard white candy. White to symbolize the virgin birth and sinless nature of Jesus, and hard to symbolize the Solid Rock the foundation of the church, and the firmness of God's promises. The candy cane is in the form of a "J" to represent the precious name of Jesus, who came to earth. It also represents the Good Shepherd's crook, which He uses to reach down into the ditches of the world to lift out the fallen lambs who, like all sheep, have gone astray. The original candy cane had three small red stripes, which are the stripes of the scourging Jesus received by which we are healed, and a large red stripe that represents the shed blood of Jesus, so that we can have the promise of eternal life.
"Teach these things to the children."
Santa brought out a beautiful wreath made of fresh, fragrant greenery tied with a bright red bow. "The bow reminds us of the bond of perfection, which is love. The wreath embodies all the good things about Christmas for those with eyes to see and hearts to understand. It contains the colors of red and green and the heaven-turned needles of the evergreen. The bow tells the story of good will towards all and its color reminds us of Christ's sacrifice. Even its very shape is symbolic, representing eternity and the eternal nature of Christ's love. It is a circle, without beginning and without end. These are the things you must teach the children."
I asked, "But where does that leave you, Santa?"
The tears gone now from his eyes, a smile broke over Santa's face. "Why bless you, my dear," he laughed, "I'm only a symbol myself. I represent the spirit of family fun and the joy of giving and receiving. If the children are taught these other things, there is no danger that I'll ever be forgotten."
"I think I'm beginning to understand."
"That's why I came," said Santa. "You're an adult. If you don't teach the children these things, then who will?"
(Author Unknown)
Tuesday, December 1, 2009
Doc Appointment Cancelled
Mackynlee had an appointment today to have a 24 hour PH probe test with the GI specialist. Yesterday evening, the nurse called and has postponed the appointment until further notice. I have mixed feelings about this. In one way I was happy to not have to do this today, in another way I just wanted to get this over with. She will have her feeding tube in one nostril and another tube in her other nostril for 24 hours. I know this is going to be annoying for her. The feeding tube has not been stressful lately. She has been keeping it in, and has been keeping down most of her feedings. She will eat from the bottle an ounce or two at a time. We feed her at least 770ml's a day, so we subtract what she takes by mouth and give her the rest through her tube. The home health nurse did not come yesterday, but we all feel sure she is gaining weight.
She is active as ever!! I think she is going to walk before she crawls. She is moving around everywhere, but it is more rolling than crawling. Her personality is blossoming. The other night I was handing her over to Mark(she usually goes right to him) she grabbed onto me tightly, turned her head away from him, and said,"hhhhmmmmpppph!" Too funny. Needless to say, I did not give her to him.
We had a wonderful Thanksgiving, and Connor's pirate party turned out to be the best party ever. Mark got off of the hook, he did not have to wear the pirate costume, Tany Powell offered to wear it. I will post some pics from the party later today when I get home. The birthday cakes were spectacular. My mother-in-law bakes wedding cakes, birthday cakes, etc. She always does a wonderful job on ours. She made a pirate with a bird on his shoulder and a treasure chest. We enjoyed visiting our friends and watching our children play together.
As we enjoy the holiday season, remember the words of this poem.
The Real Reason
Excitement and joy are filling the air;
The lights add special decor.
We're shopping for Christmas gifts everywhere,
But are gifts what Christmas is for?
The wreaths and the trees and the parties
Aren't what we need to convey;
It's the birth of our Savior, Jesus,
The real reason for this holiday.
By Karl and Joanna Fuchs
I will continue to update all of you on our appointment and let you know when the date is scheduled to get her g-tube
She is active as ever!! I think she is going to walk before she crawls. She is moving around everywhere, but it is more rolling than crawling. Her personality is blossoming. The other night I was handing her over to Mark(she usually goes right to him) she grabbed onto me tightly, turned her head away from him, and said,"hhhhmmmmpppph!" Too funny. Needless to say, I did not give her to him.
We had a wonderful Thanksgiving, and Connor's pirate party turned out to be the best party ever. Mark got off of the hook, he did not have to wear the pirate costume, Tany Powell offered to wear it. I will post some pics from the party later today when I get home. The birthday cakes were spectacular. My mother-in-law bakes wedding cakes, birthday cakes, etc. She always does a wonderful job on ours. She made a pirate with a bird on his shoulder and a treasure chest. We enjoyed visiting our friends and watching our children play together.
As we enjoy the holiday season, remember the words of this poem.
The Real Reason
Excitement and joy are filling the air;
The lights add special decor.
We're shopping for Christmas gifts everywhere,
But are gifts what Christmas is for?
The wreaths and the trees and the parties
Aren't what we need to convey;
It's the birth of our Savior, Jesus,
The real reason for this holiday.
By Karl and Joanna Fuchs
I will continue to update all of you on our appointment and let you know when the date is scheduled to get her g-tube
Saturday, November 21, 2009
An Update For Hammer
Hammer, this update is especially for you!!
Hammer(Eric) is a good friend of ours. He works offshore with Mark. They have both been offshore this week. So he knows exactly what is going on here at home. Mark tells him everything. He knows much more than I put on this web page. He knows everything about what is going on with the baby plus when I am in a bad mood, when I chew Mark out, ect. But, he tells Mark to tell me he needs an update. So, here it is.
The baby had an appointment with Dr. Bishop yesterday. We will have an upper barrum swallow Tuesday and another test on Dec 1st. Then the date will be set to put in the g-tube. This will be a 3 to 5 night hospital stay. Finding out that has greatly upset me. We are also changing the way we feed Mackynlee. We will now feed her around the clock every 3 hours. We will increase the amount we give her. This should stretch her tummy. The more it stretches, the more we can feed her and the less times we will have to feed her. (I hope that makes sense.)
As for me, I am exhausted. Everything has caught up with me once again. I hate being on such a tight schedule with the baby. There is always something to do for her. Now feeding her bolus feeds only, the schedule will be tighter and tougher. Life is just very difficult right now. I feel like a prisoner to our house. I come home as quickly as I can after work each evening. If there is anything I need to do, I have to get people to sit with Mackynlee and I am always in such a rush to get back to her before her next feed or meds. I have told Mark when he gets home he is going to be the winner of getting to walk in my shoes for a few days. I have got to be freed from a little stress. I need to sleep late, take a nap, or just whatever I want at the time I want. I know this sounds selfish, but I just need a break from my everyday stressful routine.
Stacy Dixon Creaole, a classmate of ours, lost her father this week. I ask that all keep this family in your prayers.
Father of all mercies and God of consolation, You love us eternally and transform the shadows of death into the dawn of life. Look upon our grief; be our refuge and comfort so that our sadness and sorrow may turn into the light and peace of Your Presence. In dying, Your Son destroyed death; in rising, He restored life. Grant that at the end of our earthly pilgrimage we may be found in His company with our brothers and sisters. There, You shall wipe away every tear. We ask this through Christ our Lord. Amen.
Hammer(Eric) is a good friend of ours. He works offshore with Mark. They have both been offshore this week. So he knows exactly what is going on here at home. Mark tells him everything. He knows much more than I put on this web page. He knows everything about what is going on with the baby plus when I am in a bad mood, when I chew Mark out, ect. But, he tells Mark to tell me he needs an update. So, here it is.
The baby had an appointment with Dr. Bishop yesterday. We will have an upper barrum swallow Tuesday and another test on Dec 1st. Then the date will be set to put in the g-tube. This will be a 3 to 5 night hospital stay. Finding out that has greatly upset me. We are also changing the way we feed Mackynlee. We will now feed her around the clock every 3 hours. We will increase the amount we give her. This should stretch her tummy. The more it stretches, the more we can feed her and the less times we will have to feed her. (I hope that makes sense.)
As for me, I am exhausted. Everything has caught up with me once again. I hate being on such a tight schedule with the baby. There is always something to do for her. Now feeding her bolus feeds only, the schedule will be tighter and tougher. Life is just very difficult right now. I feel like a prisoner to our house. I come home as quickly as I can after work each evening. If there is anything I need to do, I have to get people to sit with Mackynlee and I am always in such a rush to get back to her before her next feed or meds. I have told Mark when he gets home he is going to be the winner of getting to walk in my shoes for a few days. I have got to be freed from a little stress. I need to sleep late, take a nap, or just whatever I want at the time I want. I know this sounds selfish, but I just need a break from my everyday stressful routine.
Stacy Dixon Creaole, a classmate of ours, lost her father this week. I ask that all keep this family in your prayers.
Father of all mercies and God of consolation, You love us eternally and transform the shadows of death into the dawn of life. Look upon our grief; be our refuge and comfort so that our sadness and sorrow may turn into the light and peace of Your Presence. In dying, Your Son destroyed death; in rising, He restored life. Grant that at the end of our earthly pilgrimage we may be found in His company with our brothers and sisters. There, You shall wipe away every tear. We ask this through Christ our Lord. Amen.
Saturday, November 7, 2009
Well, I know I have not been posting as faithful as I was. Sorry. Ms. Susan Slocum told me this morning how important it was for me to continue letting all know what is going on. I am just very busy, but I am going to set aside time to post at least once or twice a week even if there is no medical news. It is good therapy for me to post and makes me spend more time on devotions, bible reading, and prayer.
Medical Update:
Mackynlee went to the peditrician on Wednesday. He was shocked that she had a feeding tube. She got her 2nd flue shot and rsv shot. We discussed many issues. One thing that he told me is that we were "screwed." Anyone who lives in a rural area that has a child with a complicated medical problem is "screwed." He says due to hospital and ER policy, the local hospitals would not see Mackynlee even for minor issues such as doing an x-ray to make sure her feeding tube is placed correctly. He continued to say this really is a good thing, because if there were other finding to do with her brain or heart, we would be STUCK at a hospital that is incapable of treating such problems. So, if we ever feel she needs to be seen by a doc, he suggests we get in our car and start our 2 hour drive to UMC in Jackson. She is gaining weight now. We have a homehealth nurse that comes and weighs her on Mondays. Last Monday she weighed 13.7!!! The nurse has also ordered a SATS monitor to check Mackynlee's sats on Mondays. She is also checking into getting us PT and OT. Mackynlee is a little behind in her development and our docs want us to get on top of this physical delay. Pray all works out for us to get these services often!!
Shelby is sick with a stomach virus. She has been at my mother-in-laws since Thursday. This is difficult on us. She misses being home and being with us, but we know this is not as difficult as if Mackynlee caught the virus and had to be hospitalized again.
Connor is his silly self!! Mark was just reading a book to him about telling time. He showed Connor how to turn the hands of the clock to 8:30. Connor said, "Daddy, that's not a 30, that's a 6!" He said it in the tone of my daddy does not even know his numbers. HAHA I am planning a pirate birthday party for Connor on November 28th from 1-3. All are invited. If any of you have a cheap idea to make a pirate party cute, let me know. I'm having a treasure hunt, a tattoo table, a pin the flag on the map game, and a pirate dress up and taking each child's pic with a polaroid camera. I'm making picture frames out of construction paper. I am so glad to get excited about this party. For a long time when I thought about his birthday, I would get upset because I did not have the energy or excitement to throw him a party. I want to throw him nice parties because I have always done that for Shelby. I was feeling like I wasn't being a good mom to him, but when Mackynlee started gaining weight, I immediately got the strength and excitement to have him an awsome party!!!
Thanks to Ms. Betty Pittman, my mom, my mother-in-law,and many from our church that provided dinner for us each night this week. I'm not going to name everyone that took part from the young adults from our church because I'm not sure I even know who all sent stuff and help pay for stuff, but I have to mention Ms. Susan Slocum. She made candied apples and a delicious italian cream cheese cake!!! Also, Shelby's GA class from church gave us a bag of fruit. I just peeled an apple for Connor. It was perfect timing and made this first week back at work much more pleasant knowing I did not have to deal with cooking or figuring out dinner plans each night. Special thanks to Tracy and Tanya for giving us a sweet card with money. We are financially okay still, but extended hospital stays can and will put a strain on your finances. Mark and I have always chosen not to use credit cards. If we do not have the money, we do not get what we want. This Christmas will be the same way. Presents are not worth making bills over. We will just down size a bit this year and that is perfectly fine with all of us. Our children do not need anything (along with the majority of children in this day and time). We do not need for anything either. This year during the holidays we will more than ever see the miracles from GOD as our Christmas gifts. "Take time to notice the miracles you are asking for that just might be happening all around you. You might be surprised at what a "miracle" really is! Then remember to give God the glory for it, for it came from no other~ I stole this from another heart mom Ani Karg. Her carepage is thekargfamily. She is an awsome writer and can share her feelings so much more clearly than I. A miracle to me is a normal, tired Monday. Or a Saturday of having to clean the house after a crazy work week. Or trying to get Shelby to learn her spelling words. Life is a miracle. The things we complain about are miracles.
Physically I am feeling great. I have finally caught up on much needed rest that I didn't get when we were in the hospitals. Emotionally I am doing better, but I still have my moments. Thursday when Shelby started getting sick, Mackynlee pulled out her feeding tube, again! I said "God, just speak to me in an audible voice and I will do whatever you are trying to tell me to do. Please stop trying to tell me things through the health and discomfort of my children." But, I soon got over my "feeling sorry for myself and my kids spell." There's just no time for feeling sorry for myself. The most difficult thing for me right now is going places where other moms have their babies that are around Mackynlee's age. I know this is so wrong of me to get upset about this. I know God could have chosen to take my baby. I have to be thankful instead of upset. I also know there are many women out there that cannot have babies and this probably sounds so silly that I would be upset about not carrying Mackynlee out. I have two other kids to do things with, etc. I just want her with us so much, but it is in her best interest for her to stay home. We have decided to keep her home all winter. Sorry in advance for any birthday parties we might miss if we do not have a babysitter for Mackynlee. When Mark is home, we are tag teaming well. Ms. Diane, my mom, and meemaw have all been great at helping out when I need to carry Shelby to gymnastics or she and Connor to church. So many ask what can they do to help. I always say just pray. But, I realized this morning (Mark is leaving for two weeks tomorrow) I could use some help with Mackynlee on Sunday evenings 5:00-6:30 (kids love chior and I love teaching my discipleship training class) on Mondays from 5:30-6:30(Shelby takes gymnastics) and on Wednesdays from 6:30-7:30(kids love going to mission friends and GA's at church). If any of you would like to come hold our miracle during any of these times, please let me know. I will arrange her feeds and meds where all you would have to do is play with her, hold her, and possibly change her diaper. This would be a great help to me emotionally. I do not want Shelby and Connor to have to miss out on the things their are involved in. It will make me feel like I am giving all three of my children everything they need. Once again, our grandma's are helping out wonderfully, but I hate for them to have to miss church all of the time and I do not want to burn them out. I also just thought some of you might want to spend some special time with the miracle all of you have prayed for and conitnue praying for. Food is always welcome here, too. HAHA! Having supper provieded each night this week really spoiled me!!
I also want to thank everyone I work with. So many of my co-workers donated days to me once again. My paycheck has only been docked for $700.00 one time and I have 16 more days to use during this school year when I need to take baby to doc, etc. Several more teachers/friends have told me over and over to let them know if I need more days. This is such peace to know that I have this time to use when needed and my check will not continue to be docked. I worked with wonderful, caring, kind, christian people. Thanks to all of you for supporting me and my family.
Heart Moms: Mackynlee seems to be having a lot of discomfort with gas pains. Do you think it could be any of her meds? What should I do? Call the doc? Malicon drops? It seems to be worse in the wee hours of the morning than any other time of the day.
PLEASE HELP - NEED SOME CARDS! Diana Harrison Biorkman has a 5-yr old son in his last stages of a 2 1/2 year battle with Neuroblastoma cancer. They are celebrating Christmas next weekend and Noah loves Christmas cards. Please take a minute to send a card....PLEASE do it right away!!!!! To : Noah Biorkman, 1141 Fountain View Circle, South Lyon MI 48178. This came from a heart mom's facebook page.
Well, I guess I had more to say than I realized when beginning this post. I hope I haven't bored you. Thanks to all of you for continuing to pray for us. Lift up Meemaw(Ms. Sharon) in your prayers daily. God sent her to us and visa versa. She is such a blessing to our family. Pray for her stregth as she has such a tight schedule to keep Mackynlee on daily while she also sees to the needs of our 3 year old. She is also babysitting Mackynlee tonight so Mark, Connor, and I can go to a young adult party at Tracy and Chad's. She comes every time Mackynlee pulls out her feeding tube and would not have it any other way. We love her so much!! Pray Mackynlee keeps the tube in this time. We have it taped better. We used paper tape instead of that clear stuff!! One last prayer request. I am not giving Mackynlee feeding tube feeds during the day for a few days. This is my decision, not the doctors. Please pray that she will start eating better. I just want her to eat so badly. We except the feeding tube and thank God for it, but we do not want her to stop eating completely. We want her to have the enjoyment of eating (this bothers Meemaw very much).
A Little Girl's Prayer
Author: Helen Roseveare, a doctor missionary from England to Zaire, Africa
Translator: Maria
One night I had worked hard to help a mother in the labor ward; but inspite of all we could do she died leaving us with a tiny premature baby and a crying two-year-old daughter. We would have difficulty keeping the baby alive, as we had no incubator (we had no electricity to run an incubator) and no special feeding facilities.
Although we lived on the equator, nights were often chilly witht reacherous drafts. One student midwife went for the box we had for such babies and the cotton wool the baby would be wrapped in. Another went to stoke up the fire and fill a hot water bottle. She came back shortly in distress to tell me that in filling the bottle, it had burst. Rubber perishes easily in tropical climates.
"And it is our last hot water bottle!" she exclaimed.
As in the West it is no good crying over spilled milk, so in Central Africa it might be considered no good crying over burst water bottles. They do not grow on trees, and there are no drugstores down forest pathways.
"All right," I said, "Put the baby as near the fire as you safely can; sleep between the baby and the door to keep it free from drafts. Your job is to keep the baby warm."
The following noon, as I did most days, I went to have prayers with any of the orphanage children who chose to gather with me. I gave the youngsters various suggestions of things to pray about and told them about the tiny baby. I explained our problem about keeping the baby warm enough, mentioning the hot water bottle. The baby could so easily die if it got chills. I also told them of the two-year-old sister, crying because her mother had died.
During the prayer time, one ten-year-old girl, Ruth, prayed with the usual blunt conciseness of our African children. "Please, God," she prayed,"send us a water bottle. It'll be no good tomorrow, God, as the baby'll be dead, so please send it this afternoon." While I gasped inwardly at the audacity of the prayer, she added by way of corollary, "And while You are about it, would You please send a dolly for the little girl so she'll know You really love her?"
As often with children's prayers, I was put on the spot. Could I honestly say, "Amen"? I just did not believe that God could do this. Oh, yes, I know that He can do everything. The Bible says so. But there are limits, aren't there? The only way God could answer this particular prayer would be by sending me a parcel from the homeland. I had been in Africa for almost four years at that time, and I had never, ever received a parcel from home. Anyway, if anyone did send me a parcel, who would put in a hotwater bottle? I lived on the equator!
Halfway through the afternoon, while I was teaching in the nurses' training school, a message was sent that there was a car at my front door. By the time I reached home, the car had gone, but there, on the verandah, was a large twenty-two pound parcel! I felt tears pricking my eyes. I could not open the parcel alone, so I sent for the orphanage children.Together we pulled off the string, carefully undoing each knot. We folded the paper, taking care not to tear it unduly. Excitement was mounting. Some thirty or forty pairs of eyes were focused on the large cardboard box.
From the top, I lifted out brightly colored, knitted jerseys. Eyes sparkled as I gave them out. Then there were the knitted bandages for the leprosy patients, and the children looked a little bored. Then came a box of mixed raisins and sultanas - that would make a nice batch of buns for the weekend. Then, as I put my hand in again, I felt the... could itreally be? I grasped it and pulled it out - yes! A brand-new, rubberhot water bottle! I cried. I had not asked God to send it; I had not truly believed that He could.
Ruth was in the front row of the children. She rushed forward, crying out, "If God has sent the bottle, He must have sent the dolly, too!"
Rummaging down to the bottom of the box, she pulled out the small, beautifully dressed dolly. Her eyes shone! She had never doubted!
Looking up at me, she asked, "Can I go over with you, Mummy, and give this dolly to that little girl, so she'll know that Jesus really loves her?"
That parcel had been on the way for five whole months! Packed up by my former Sunday school class, whose leader had heard and obeyed God's prompting to send a hot water bottle, even to the equator. And one of the girls had put in a dolly for an African child - five months before - in answer to the believing prayer of a ten-year-old to bring it "that afternoon."
"Before they call, I will answer!"
Isaiah 65:24
Medical Update:
Mackynlee went to the peditrician on Wednesday. He was shocked that she had a feeding tube. She got her 2nd flue shot and rsv shot. We discussed many issues. One thing that he told me is that we were "screwed." Anyone who lives in a rural area that has a child with a complicated medical problem is "screwed." He says due to hospital and ER policy, the local hospitals would not see Mackynlee even for minor issues such as doing an x-ray to make sure her feeding tube is placed correctly. He continued to say this really is a good thing, because if there were other finding to do with her brain or heart, we would be STUCK at a hospital that is incapable of treating such problems. So, if we ever feel she needs to be seen by a doc, he suggests we get in our car and start our 2 hour drive to UMC in Jackson. She is gaining weight now. We have a homehealth nurse that comes and weighs her on Mondays. Last Monday she weighed 13.7!!! The nurse has also ordered a SATS monitor to check Mackynlee's sats on Mondays. She is also checking into getting us PT and OT. Mackynlee is a little behind in her development and our docs want us to get on top of this physical delay. Pray all works out for us to get these services often!!
Shelby is sick with a stomach virus. She has been at my mother-in-laws since Thursday. This is difficult on us. She misses being home and being with us, but we know this is not as difficult as if Mackynlee caught the virus and had to be hospitalized again.
Connor is his silly self!! Mark was just reading a book to him about telling time. He showed Connor how to turn the hands of the clock to 8:30. Connor said, "Daddy, that's not a 30, that's a 6!" He said it in the tone of my daddy does not even know his numbers. HAHA I am planning a pirate birthday party for Connor on November 28th from 1-3. All are invited. If any of you have a cheap idea to make a pirate party cute, let me know. I'm having a treasure hunt, a tattoo table, a pin the flag on the map game, and a pirate dress up and taking each child's pic with a polaroid camera. I'm making picture frames out of construction paper. I am so glad to get excited about this party. For a long time when I thought about his birthday, I would get upset because I did not have the energy or excitement to throw him a party. I want to throw him nice parties because I have always done that for Shelby. I was feeling like I wasn't being a good mom to him, but when Mackynlee started gaining weight, I immediately got the strength and excitement to have him an awsome party!!!
Thanks to Ms. Betty Pittman, my mom, my mother-in-law,and many from our church that provided dinner for us each night this week. I'm not going to name everyone that took part from the young adults from our church because I'm not sure I even know who all sent stuff and help pay for stuff, but I have to mention Ms. Susan Slocum. She made candied apples and a delicious italian cream cheese cake!!! Also, Shelby's GA class from church gave us a bag of fruit. I just peeled an apple for Connor. It was perfect timing and made this first week back at work much more pleasant knowing I did not have to deal with cooking or figuring out dinner plans each night. Special thanks to Tracy and Tanya for giving us a sweet card with money. We are financially okay still, but extended hospital stays can and will put a strain on your finances. Mark and I have always chosen not to use credit cards. If we do not have the money, we do not get what we want. This Christmas will be the same way. Presents are not worth making bills over. We will just down size a bit this year and that is perfectly fine with all of us. Our children do not need anything (along with the majority of children in this day and time). We do not need for anything either. This year during the holidays we will more than ever see the miracles from GOD as our Christmas gifts. "Take time to notice the miracles you are asking for that just might be happening all around you. You might be surprised at what a "miracle" really is! Then remember to give God the glory for it, for it came from no other~ I stole this from another heart mom Ani Karg. Her carepage is thekargfamily. She is an awsome writer and can share her feelings so much more clearly than I. A miracle to me is a normal, tired Monday. Or a Saturday of having to clean the house after a crazy work week. Or trying to get Shelby to learn her spelling words. Life is a miracle. The things we complain about are miracles.
Physically I am feeling great. I have finally caught up on much needed rest that I didn't get when we were in the hospitals. Emotionally I am doing better, but I still have my moments. Thursday when Shelby started getting sick, Mackynlee pulled out her feeding tube, again! I said "God, just speak to me in an audible voice and I will do whatever you are trying to tell me to do. Please stop trying to tell me things through the health and discomfort of my children." But, I soon got over my "feeling sorry for myself and my kids spell." There's just no time for feeling sorry for myself. The most difficult thing for me right now is going places where other moms have their babies that are around Mackynlee's age. I know this is so wrong of me to get upset about this. I know God could have chosen to take my baby. I have to be thankful instead of upset. I also know there are many women out there that cannot have babies and this probably sounds so silly that I would be upset about not carrying Mackynlee out. I have two other kids to do things with, etc. I just want her with us so much, but it is in her best interest for her to stay home. We have decided to keep her home all winter. Sorry in advance for any birthday parties we might miss if we do not have a babysitter for Mackynlee. When Mark is home, we are tag teaming well. Ms. Diane, my mom, and meemaw have all been great at helping out when I need to carry Shelby to gymnastics or she and Connor to church. So many ask what can they do to help. I always say just pray. But, I realized this morning (Mark is leaving for two weeks tomorrow) I could use some help with Mackynlee on Sunday evenings 5:00-6:30 (kids love chior and I love teaching my discipleship training class) on Mondays from 5:30-6:30(Shelby takes gymnastics) and on Wednesdays from 6:30-7:30(kids love going to mission friends and GA's at church). If any of you would like to come hold our miracle during any of these times, please let me know. I will arrange her feeds and meds where all you would have to do is play with her, hold her, and possibly change her diaper. This would be a great help to me emotionally. I do not want Shelby and Connor to have to miss out on the things their are involved in. It will make me feel like I am giving all three of my children everything they need. Once again, our grandma's are helping out wonderfully, but I hate for them to have to miss church all of the time and I do not want to burn them out. I also just thought some of you might want to spend some special time with the miracle all of you have prayed for and conitnue praying for. Food is always welcome here, too. HAHA! Having supper provieded each night this week really spoiled me!!
I also want to thank everyone I work with. So many of my co-workers donated days to me once again. My paycheck has only been docked for $700.00 one time and I have 16 more days to use during this school year when I need to take baby to doc, etc. Several more teachers/friends have told me over and over to let them know if I need more days. This is such peace to know that I have this time to use when needed and my check will not continue to be docked. I worked with wonderful, caring, kind, christian people. Thanks to all of you for supporting me and my family.
Heart Moms: Mackynlee seems to be having a lot of discomfort with gas pains. Do you think it could be any of her meds? What should I do? Call the doc? Malicon drops? It seems to be worse in the wee hours of the morning than any other time of the day.
PLEASE HELP - NEED SOME CARDS! Diana Harrison Biorkman has a 5-yr old son in his last stages of a 2 1/2 year battle with Neuroblastoma cancer. They are celebrating Christmas next weekend and Noah loves Christmas cards. Please take a minute to send a card....PLEASE do it right away!!!!! To : Noah Biorkman, 1141 Fountain View Circle, South Lyon MI 48178. This came from a heart mom's facebook page.
Well, I guess I had more to say than I realized when beginning this post. I hope I haven't bored you. Thanks to all of you for continuing to pray for us. Lift up Meemaw(Ms. Sharon) in your prayers daily. God sent her to us and visa versa. She is such a blessing to our family. Pray for her stregth as she has such a tight schedule to keep Mackynlee on daily while she also sees to the needs of our 3 year old. She is also babysitting Mackynlee tonight so Mark, Connor, and I can go to a young adult party at Tracy and Chad's. She comes every time Mackynlee pulls out her feeding tube and would not have it any other way. We love her so much!! Pray Mackynlee keeps the tube in this time. We have it taped better. We used paper tape instead of that clear stuff!! One last prayer request. I am not giving Mackynlee feeding tube feeds during the day for a few days. This is my decision, not the doctors. Please pray that she will start eating better. I just want her to eat so badly. We except the feeding tube and thank God for it, but we do not want her to stop eating completely. We want her to have the enjoyment of eating (this bothers Meemaw very much).
A Little Girl's Prayer
Author: Helen Roseveare, a doctor missionary from England to Zaire, Africa
Translator: Maria
One night I had worked hard to help a mother in the labor ward; but inspite of all we could do she died leaving us with a tiny premature baby and a crying two-year-old daughter. We would have difficulty keeping the baby alive, as we had no incubator (we had no electricity to run an incubator) and no special feeding facilities.
Although we lived on the equator, nights were often chilly witht reacherous drafts. One student midwife went for the box we had for such babies and the cotton wool the baby would be wrapped in. Another went to stoke up the fire and fill a hot water bottle. She came back shortly in distress to tell me that in filling the bottle, it had burst. Rubber perishes easily in tropical climates.
"And it is our last hot water bottle!" she exclaimed.
As in the West it is no good crying over spilled milk, so in Central Africa it might be considered no good crying over burst water bottles. They do not grow on trees, and there are no drugstores down forest pathways.
"All right," I said, "Put the baby as near the fire as you safely can; sleep between the baby and the door to keep it free from drafts. Your job is to keep the baby warm."
The following noon, as I did most days, I went to have prayers with any of the orphanage children who chose to gather with me. I gave the youngsters various suggestions of things to pray about and told them about the tiny baby. I explained our problem about keeping the baby warm enough, mentioning the hot water bottle. The baby could so easily die if it got chills. I also told them of the two-year-old sister, crying because her mother had died.
During the prayer time, one ten-year-old girl, Ruth, prayed with the usual blunt conciseness of our African children. "Please, God," she prayed,"send us a water bottle. It'll be no good tomorrow, God, as the baby'll be dead, so please send it this afternoon." While I gasped inwardly at the audacity of the prayer, she added by way of corollary, "And while You are about it, would You please send a dolly for the little girl so she'll know You really love her?"
As often with children's prayers, I was put on the spot. Could I honestly say, "Amen"? I just did not believe that God could do this. Oh, yes, I know that He can do everything. The Bible says so. But there are limits, aren't there? The only way God could answer this particular prayer would be by sending me a parcel from the homeland. I had been in Africa for almost four years at that time, and I had never, ever received a parcel from home. Anyway, if anyone did send me a parcel, who would put in a hotwater bottle? I lived on the equator!
Halfway through the afternoon, while I was teaching in the nurses' training school, a message was sent that there was a car at my front door. By the time I reached home, the car had gone, but there, on the verandah, was a large twenty-two pound parcel! I felt tears pricking my eyes. I could not open the parcel alone, so I sent for the orphanage children.Together we pulled off the string, carefully undoing each knot. We folded the paper, taking care not to tear it unduly. Excitement was mounting. Some thirty or forty pairs of eyes were focused on the large cardboard box.
From the top, I lifted out brightly colored, knitted jerseys. Eyes sparkled as I gave them out. Then there were the knitted bandages for the leprosy patients, and the children looked a little bored. Then came a box of mixed raisins and sultanas - that would make a nice batch of buns for the weekend. Then, as I put my hand in again, I felt the... could itreally be? I grasped it and pulled it out - yes! A brand-new, rubberhot water bottle! I cried. I had not asked God to send it; I had not truly believed that He could.
Ruth was in the front row of the children. She rushed forward, crying out, "If God has sent the bottle, He must have sent the dolly, too!"
Rummaging down to the bottom of the box, she pulled out the small, beautifully dressed dolly. Her eyes shone! She had never doubted!
Looking up at me, she asked, "Can I go over with you, Mummy, and give this dolly to that little girl, so she'll know that Jesus really loves her?"
That parcel had been on the way for five whole months! Packed up by my former Sunday school class, whose leader had heard and obeyed God's prompting to send a hot water bottle, even to the equator. And one of the girls had put in a dolly for an African child - five months before - in answer to the believing prayer of a ten-year-old to bring it "that afternoon."
"Before they call, I will answer!"
Isaiah 65:24
Tuesday, October 27, 2009
Doc Appointments Tomorrow
Just wanted to post a quick update. All is going smoothly with feeding tube and giving her meds through the tube(we love that part of the tube). I have a few concerns. Mackynlee is very restless especially during the night. I feel like this is a side effect of the combo of meds that she is taking. I am also concerned because her eating with the bottle is decreasing instead of increasing. She has been taking in aroung 200mls of formula with her bottle. Yesterday she only took in 130ml's. This really bothers me. Dr. Shores(heart doc) will see if the pleural effusion has gotten any smaller. I pray it is completely gone away and we can begin taking Mackynlee off of some of her meds (she is on four diuretics). Dr. Bruce (neurologist) and I will discuss seizure meds. Mackynlee has only had a very few and very mild seizures since being discharged from the hospital four days ago. I also hope we can reduce some of the seizure meds.
I will post an update on what news we get from the doctors as soon as I can. I am enjoying being home with my family, but it is crazy busy around here!!! This is the first time I have been on my computer since I have been home. There is no time to goof off with three kids needing you!!!
I want to ask all of my readers to pray specifically this week for my friend, Rhonda Pittman. She will begin her fight against breast cancer tomorrow.
Lord, thank you for your loving kindness and tender mercies towards your children. Thank you for being a God who wants His people to be whole. Lord, I ask that you intervene and help Rhonda and her family as they begin the battle against cancer. I am confident that you will deliver her because you not only hear but
answer prayers. Thank you for the answer in Jesus Precious Name. Amen and Amen.
I will post an update on what news we get from the doctors as soon as I can. I am enjoying being home with my family, but it is crazy busy around here!!! This is the first time I have been on my computer since I have been home. There is no time to goof off with three kids needing you!!!
I want to ask all of my readers to pray specifically this week for my friend, Rhonda Pittman. She will begin her fight against breast cancer tomorrow.
Lord, thank you for your loving kindness and tender mercies towards your children. Thank you for being a God who wants His people to be whole. Lord, I ask that you intervene and help Rhonda and her family as they begin the battle against cancer. I am confident that you will deliver her because you not only hear but
answer prayers. Thank you for the answer in Jesus Precious Name. Amen and Amen.
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