My FB update
Thank God! Selah's kidney function test has come down to almost normal levels~ she still is having fever, higher than normal blood pressures and a high heart rate. Please continue praying! Big News, she coughed a little cough tonight! Not when they suctioned her but just lying there. PRAY that she will cough more and get her gag reflux back! If she did, she wouldn't need a trach~! Mommy would be soooo happy!!!
I am so happy for the cough! The nurse was in the room and heard it also, this is the first one she has had. She didn't cough when suctioned but right before. Please Please pray she will cough more!!!!
Today she seemed more alert at times. Of course we have been told there is no intelligent function there, only brain stem responds... I don't know but at times we sense she is there. Today was one of those times we felt she was responding to us with her eyes. Please pray that we'll see more responses.
Well I have been moved back to the main Ronald McDonald House with the family. There were some critical cases and she is less critical. That is a GOOD thing:) We appreciate RMH so much for everything they've done for us. In a sense I am relieved to be back with the family at night and we are only a couple of blocks over from the hospital. As much as I appreciate the In Hospital RMH, there was just an feeling of sadness there, I think I reacted to it by having the bad dreams. I am not used to being alone at night either and I think that made me uneasy also. I hope she will just continue on the road to recovery and we will never have to be housed there again. I pray for the new family coming to take our place that God will be with them. I generally stay with Selah until pretty late, last night I stayed till 1am, I was just too unsettled to leave her.
So please keep praying for her and for us. God is faithful and I thank Him for these answers to prayer. It has lightened my heart, amazing what a little cough can do!!!!!
"Our life maybe a crazy life but it's our life" I'm married to a pastor of a small rural church, who is also the prison chaplain. We have 5 kids, each with their unique story. I love gardening & we all love the outdoors. Our life is not the way we planned it to be, but we are learning to trust God in every area. Come and read about our life as we live it to the fullest!
Thursday, August 30, 2012
Chosen
Chosen One
If before you were born, I could have gone to Heaven and saw all the beautiful souls, I still would have chosen you...
If God had told me "this soul will one day need extra care", I still would have chosen you...
If He had told me "that one day this soul may make my heart bleed", I still would have chosen you...
If He had told me "this soul would make me question the depth of my faith", I still would have chosen you...
If God had told me "this soul would make tears flow from my eyes that would overflow a river", I still would have chosen you..
If He had told me "our time spent together here on Earth could be short", I still would have chosen you...
If He had told me 'all that you know to be normal would drastically change", I still would have chosen you...
Of course, even though I would have chosen you, I know it was God who chose me for you...
Thank you God for allowing me to be Selah's mommy!
I went back reading over my blog, encouraging myself and I found this poem. It was written by a mom of a child with cancer. I copied it and used it in a post about Sam. But I thought it was very appropriate for Selah too. And the cool thing is we did chose Selah. We could have walked away from her when we met her, she had some behaviors that scared us and made us question our ability to raise her. But if you have read my earlier posts, those behaviors soon solved themselves since coming into our family. She was chosen, we had to make a commitment to the court to take her as our child...and we would do it again despite the heartache that has come. We chose her despite her mental and physical delays and we still chose to be her parents no matter what the future holds. We were blessed to add her and Sarah to our family.
If before you were born, I could have gone to Heaven and saw all the beautiful souls, I still would have chosen you...
If God had told me "this soul will one day need extra care", I still would have chosen you...
If He had told me "that one day this soul may make my heart bleed", I still would have chosen you...
If He had told me "this soul would make me question the depth of my faith", I still would have chosen you...
If God had told me "this soul would make tears flow from my eyes that would overflow a river", I still would have chosen you..
If He had told me "our time spent together here on Earth could be short", I still would have chosen you...
If He had told me 'all that you know to be normal would drastically change", I still would have chosen you...
Of course, even though I would have chosen you, I know it was God who chose me for you...
Thank you God for allowing me to be Selah's mommy!
I went back reading over my blog, encouraging myself and I found this poem. It was written by a mom of a child with cancer. I copied it and used it in a post about Sam. But I thought it was very appropriate for Selah too. And the cool thing is we did chose Selah. We could have walked away from her when we met her, she had some behaviors that scared us and made us question our ability to raise her. But if you have read my earlier posts, those behaviors soon solved themselves since coming into our family. She was chosen, we had to make a commitment to the court to take her as our child...and we would do it again despite the heartache that has come. We chose her despite her mental and physical delays and we still chose to be her parents no matter what the future holds. We were blessed to add her and Sarah to our family.
Wednesday, August 29, 2012
I know WHO holds tomorrow
Night update: Selah got an arterial line today. Hope it will last. Her kidney function test is coming down a little bit please keep praying. Her blood pressure is up! Not a good sign because with everything else that indicates kidney damage. Please pray. She still has fevers The doctors decided not to do a CAT scan as they need to do it with dye and don't want to tax her kidneys anymore than necessary. Please pray for her. Things are very serious for her right now, please pray for God's mercy
Today I spent the afternoon with the kids at the Ronald McDonald House while Jon stayed with Selah. It's always great to be with the kids but I came back here to alot of things going on. We have some real concerns about her blood pressure, it needs to come down. Her heart rate stays in the 150-160 range probably because of the underlying fevers. Her kidney function numbers are coming down very slowly but that is a step in the right direction, please pray that they will continue to come down. They need to find WHY she has fevers and WHY her white blood count is high. I believe they have tried to find an answer and have left no stone unturned but the reason seems to baffle them.
We need prayer as much as we did two weeks ago. Selah's body is fighting and tired. Please pray that God will heal her. She needs a physical as well as a neurological touch. Please pray that God will touch her heart/mind/emotions and spirit. I worry often about how she is emotionally. The doctors tell us that that part of the brain doesn't work anymore but in my heart I worry that she is afraid and feels alone. I don't know everything spiritually but I pray that God will minister to her during this time, maybe send her an angel...I don't' know, I just want her to not be afraid.
So please pray for her. Pray for our family. Jon & I have been through alot in life and we are both the type to just plow through things and that is what we are doing. We have four other kids to take care of and are far from home. God has given us the strength thus far but this is the hardest thing we have ever lived through. We need your prayers.
There is so much I could write about, at times the fear, doubt, and sadness overwhelms me like a flood. Thankfully the Grace of God is also there to help balance me out. We have been shown so much kindness by so many. Thank you all for your prayers, cards, gifts, calls, messages. texts. we are so blessed. Again thank you to the Ronald McDonald House and all its workers and volunteers. You all have reached out in so many ways to my family and shown us such kindnesses! If you live in this area and want to give or volunteer at a wonderful organization, please be a part of the Rochester NY Ronald McDonald House! They live up to their mission and then some!!!!!! Strong's Hospital is wonderful...we have been shown nothing but kindness and understanding by the staff from the receptionists to the doctors! We are so grateful to so many people!!!
So I close tonight, still placing my trust in God. I have no idea what the outcome is going to be. I am afraid of the future, whichever way things go....but somehow I can still say I trust God.
I don't know about tomorrow;
I just live from day to day.
I don't borrow from its sunshine
For its skies may turn to grey.
I don't worry o'er the future,
For I know what Jesus said.
And today I'll walk beside Him,
For He knows what is ahead.
Many things about tomorrow
I don't seem to understand
But I know who holds tomorrow
And I know who holds my hand.
Every step is getting brighter
As the golden stairs I climb;
Every burden's getting lighter,
Every cloud is silver-lined.
There the sun is always shining,
There no tear will dim the eye;
At the ending of the rainbow
Where the mountains touch the sky.
Many things about tomorrow
I don't seem to understand
But I know who holds tomorrow
And I know who holds my hand
.
I don't know about tomorrow;
It may bring me poverty.
But the one who feeds the sparrow,
Is the one who stands by me.
And the path that is my portion
May be through the flame or flood;
But His presence goes before me
And I'm covered with His blood.
Many things about tomorrow
I don't seem to understand
But I know who holds tomorrow
And I know who holds my hand...
Just a disclaimer....can't say I'm exactly where the first verse is LOL I do worry about tomorrow right now... But I love the last verse the most..."And the path that be my portion, maybe through the flame or flood but His presence goes before we and I'm covered by His blood" I have sung that verse over to myself many many times over the years in many situations. It's been in my mind for the last two weeks, we can not control life much to my disappointment but we can trust God through whatever life throws at us.
Believe me if you are reading this, you will have trouble in your life. It might not be the same troubles I have had but I can promise you that heartache will come. You can't get out of that, we live in a fallen world. But I can promise you there is a God who will be right beside you in every situation. I can promise you that because I have experienced it many times. Back almost 16 years ago when we lost our twins at 22 weeks, God was there. Back almost 9 years ago when we went through a difficult pregnancy to have a premature baby who had many health problems, God walked with us through all of that and all the ramifications of me having to quit my job to stay home with Sam. He was there the night we heard the words "your son is blind". And He has been with us these past two weeks. There were many other times in my life when God was with me in such a real way, bringing me peace in the midst of storms. So I can testify to you that God can be with you in whatever situation you find yourself in. He has been with me and believe me I am no saint! I'm not perfect, please don't read my posts and think I am some super christian. If you do, I have a few people who can tell you the truth about me LOL! I don't even like to pray out loud! How I ended up as a Pentecostal pastor's wife is beyond me! So don't think I'm some super duper christian, I am NOT! But I serve a God who is faithful even when I am not and thankfully I don't' think He minds that I don't like to pray in front of other people!!!
But I trust in the eternal God, who is not changed by our circumstances. If Selah is healed, He is still the same. If she dies, He is still the same, If she lives just the way she is right now for 20 years He IS STILL THE SAME! Do I blame or question God? I really do not. Do I blame or question God about Sam(being born disabled)? I can truly say I have not. Life happens, we live in a fallen world and that is answer enough for me. Have I ever blamed or questioned God about something....YES I have. After I lost the twins, I went through an awful valley...it was beyond awful for me and everyone around me. It was a long valley, several years, I had to go through my Job experience...and it was ROUGH! But God was faithful to me, and brought me through it. During that time I went back and blamed God for every heartache in my life and questioned many things. I used to drive back and to from work and argue with God in my car...it was an intense time in my life BUT God was faithful. He walked me through alot of things although I can say I was not living close to Him at all. But He was faithful. Then as I was coming through that long valley, we had Sam. I had to determine that I was going to trust God and not question Him. God gave me the Grace I needed to do that. So now I look back over those first few months with Sam when things were very bad and I can see the peace of God and the Hand of God.
So tonight as I sit with Selah, I don't even have the words to pray other than "God help us and show us mercy, heal our sweet little girl" But I know the One who holds our tomorrows and I trust Him no matter what. And I am so thankful that I can trust Him, so thankful as I face the biggest, darkest storm of my life that I have had other storms to learn from, other times when God has proven Himself faithful to me. I can look back on my almost 47 years and see how God has been faithful in many rough situations. He has provided all I have needed to face Life and He is still providing even tonight.
Today I spent the afternoon with the kids at the Ronald McDonald House while Jon stayed with Selah. It's always great to be with the kids but I came back here to alot of things going on. We have some real concerns about her blood pressure, it needs to come down. Her heart rate stays in the 150-160 range probably because of the underlying fevers. Her kidney function numbers are coming down very slowly but that is a step in the right direction, please pray that they will continue to come down. They need to find WHY she has fevers and WHY her white blood count is high. I believe they have tried to find an answer and have left no stone unturned but the reason seems to baffle them.
We need prayer as much as we did two weeks ago. Selah's body is fighting and tired. Please pray that God will heal her. She needs a physical as well as a neurological touch. Please pray that God will touch her heart/mind/emotions and spirit. I worry often about how she is emotionally. The doctors tell us that that part of the brain doesn't work anymore but in my heart I worry that she is afraid and feels alone. I don't know everything spiritually but I pray that God will minister to her during this time, maybe send her an angel...I don't' know, I just want her to not be afraid.
So please pray for her. Pray for our family. Jon & I have been through alot in life and we are both the type to just plow through things and that is what we are doing. We have four other kids to take care of and are far from home. God has given us the strength thus far but this is the hardest thing we have ever lived through. We need your prayers.
There is so much I could write about, at times the fear, doubt, and sadness overwhelms me like a flood. Thankfully the Grace of God is also there to help balance me out. We have been shown so much kindness by so many. Thank you all for your prayers, cards, gifts, calls, messages. texts. we are so blessed. Again thank you to the Ronald McDonald House and all its workers and volunteers. You all have reached out in so many ways to my family and shown us such kindnesses! If you live in this area and want to give or volunteer at a wonderful organization, please be a part of the Rochester NY Ronald McDonald House! They live up to their mission and then some!!!!!! Strong's Hospital is wonderful...we have been shown nothing but kindness and understanding by the staff from the receptionists to the doctors! We are so grateful to so many people!!!
So I close tonight, still placing my trust in God. I have no idea what the outcome is going to be. I am afraid of the future, whichever way things go....but somehow I can still say I trust God.
I don't know about tomorrow;
I just live from day to day.
I don't borrow from its sunshine
For its skies may turn to grey.
I don't worry o'er the future,
For I know what Jesus said.
And today I'll walk beside Him,
For He knows what is ahead.
Many things about tomorrow
I don't seem to understand
But I know who holds tomorrow
And I know who holds my hand.
Every step is getting brighter
As the golden stairs I climb;
Every burden's getting lighter,
Every cloud is silver-lined.
There the sun is always shining,
There no tear will dim the eye;
At the ending of the rainbow
Where the mountains touch the sky.
Many things about tomorrow
I don't seem to understand
But I know who holds tomorrow
And I know who holds my hand
.
I don't know about tomorrow;
It may bring me poverty.
But the one who feeds the sparrow,
Is the one who stands by me.
And the path that is my portion
May be through the flame or flood;
But His presence goes before me
And I'm covered with His blood.
Many things about tomorrow
I don't seem to understand
But I know who holds tomorrow
And I know who holds my hand...
Just a disclaimer....can't say I'm exactly where the first verse is LOL I do worry about tomorrow right now... But I love the last verse the most..."And the path that be my portion, maybe through the flame or flood but His presence goes before we and I'm covered by His blood" I have sung that verse over to myself many many times over the years in many situations. It's been in my mind for the last two weeks, we can not control life much to my disappointment but we can trust God through whatever life throws at us.
Believe me if you are reading this, you will have trouble in your life. It might not be the same troubles I have had but I can promise you that heartache will come. You can't get out of that, we live in a fallen world. But I can promise you there is a God who will be right beside you in every situation. I can promise you that because I have experienced it many times. Back almost 16 years ago when we lost our twins at 22 weeks, God was there. Back almost 9 years ago when we went through a difficult pregnancy to have a premature baby who had many health problems, God walked with us through all of that and all the ramifications of me having to quit my job to stay home with Sam. He was there the night we heard the words "your son is blind". And He has been with us these past two weeks. There were many other times in my life when God was with me in such a real way, bringing me peace in the midst of storms. So I can testify to you that God can be with you in whatever situation you find yourself in. He has been with me and believe me I am no saint! I'm not perfect, please don't read my posts and think I am some super christian. If you do, I have a few people who can tell you the truth about me LOL! I don't even like to pray out loud! How I ended up as a Pentecostal pastor's wife is beyond me! So don't think I'm some super duper christian, I am NOT! But I serve a God who is faithful even when I am not and thankfully I don't' think He minds that I don't like to pray in front of other people!!!
But I trust in the eternal God, who is not changed by our circumstances. If Selah is healed, He is still the same. If she dies, He is still the same, If she lives just the way she is right now for 20 years He IS STILL THE SAME! Do I blame or question God? I really do not. Do I blame or question God about Sam(being born disabled)? I can truly say I have not. Life happens, we live in a fallen world and that is answer enough for me. Have I ever blamed or questioned God about something....YES I have. After I lost the twins, I went through an awful valley...it was beyond awful for me and everyone around me. It was a long valley, several years, I had to go through my Job experience...and it was ROUGH! But God was faithful to me, and brought me through it. During that time I went back and blamed God for every heartache in my life and questioned many things. I used to drive back and to from work and argue with God in my car...it was an intense time in my life BUT God was faithful. He walked me through alot of things although I can say I was not living close to Him at all. But He was faithful. Then as I was coming through that long valley, we had Sam. I had to determine that I was going to trust God and not question Him. God gave me the Grace I needed to do that. So now I look back over those first few months with Sam when things were very bad and I can see the peace of God and the Hand of God.
So tonight as I sit with Selah, I don't even have the words to pray other than "God help us and show us mercy, heal our sweet little girl" But I know the One who holds our tomorrows and I trust Him no matter what. And I am so thankful that I can trust Him, so thankful as I face the biggest, darkest storm of my life that I have had other storms to learn from, other times when God has proven Himself faithful to me. I can look back on my almost 47 years and see how God has been faithful in many rough situations. He has provided all I have needed to face Life and He is still providing even tonight.
Tuesday, August 28, 2012
Prayers Needed!
Selah's kidney function numbers have climbed a little higher so we need prayer! She is peeing good so the doctors are not overly concerned at this point but it is not a good thing and the numbers need to go down since she is off all meds that might have contributed to this. Please pray that her kidneys will continue to function and heal themselves. The doctors are sending her for a CAT scan tonight to rule out any brain/sinus abscess that might be causing her fevers. They are very good here and do check on everything. I'm sure we will also learn alot more about what her brain looks like now which might be hard to hear....
Still looking into the possibility of stem cell therapy for her.
Please pray for Selah. Pray that she will heal physically in all areas. Thank you for your prayers!!!!!!
Still looking into the possibility of stem cell therapy for her.
Please pray for Selah. Pray that she will heal physically in all areas. Thank you for your prayers!!!!!!
Kidney Function!
URGENT PRAYER REQUEST! Selah's kidney function is not good. Please pray that the numbers go down. she has been taken off of all meds that might be contributing to it. The numbers just went up they have been good till now!!
She also will have to have a blood transfusion. I was hoping to be able to give but she needs it now and it would take awhile for me to go through the process ( I'm O neg and a universal donor, we don't know her blood type but I could possibly give) We are still excited about the stem cell research and are looking into it but now we have some issues that need to be resolved. Please Please pray about her kidney function. This is very serious!!!!!!! She also has the on/off fevers with no real known reason but her white cell count is high. Please pray for our sweet girl!!!
She also will have to have a blood transfusion. I was hoping to be able to give but she needs it now and it would take awhile for me to go through the process ( I'm O neg and a universal donor, we don't know her blood type but I could possibly give) We are still excited about the stem cell research and are looking into it but now we have some issues that need to be resolved. Please Please pray about her kidney function. This is very serious!!!!!!! She also has the on/off fevers with no real known reason but her white cell count is high. Please pray for our sweet girl!!!
Monday, August 27, 2012
New medical procedure....
http://www.24-7pressrelease.com/press-release/stem-cells-repair-brain-damage-umbilical-cord-blood-and-developing-tooth-buds-contain-stem-cells-that-can-change-lives-stem-cells-from-developing-tooth-buds-offer-a-second-chance-for-stem-cells-165096.php
I am excited about this article. hope you can click on it. I already have an email in to the doctor and will be tracking him down tomorrow. Please pray this is something that can help our baby girl! We have always tried or looked into things for Sam and I'm using those skills now. I know some doctors here think I may be clutching at straws but I know some doctors in Florida who thought that about Sam's corneal implant five years ago and now five years later our son can still see some. He went from 20/400 to around 20/100 and even better if he wears his glasses. That is a HUGE difference and it didn't' happen with us sitting around wishing...I had to look and call and go a thousand miles...but it was worth it. Now we have that experience behind us and we know now sometimes you have to push through and find things that may work for your children.
So pray that our sweet girl's fevers will stop and she will overcome this infection and that God will open the door for her to get this procedure if this is what will help her! I have to say I am incredibly excited and hopeful! We already have one little medical miracle in our family, ready for Selah to be the next one!!!!! Last night I just got such a peace about everything and felt like today would be a turning point for her. Learning about this, had certainly excited us and given us hope.
Our ultimate HOPE is in God, the creator of heaven and earth but we have always been thankful for the compassion and wisdom of doctors and always have given the ultimate thanks to God for the skills that our son's doctor has. I believe that most doctors, especially ones who have big medical breakthroughs, have hearts of compassion, and want to ease suffering. I know we see that in our son's doctor, Dr Aquevella.
So pray for us as we get more info!! Thank you!!!!
I am excited about this article. hope you can click on it. I already have an email in to the doctor and will be tracking him down tomorrow. Please pray this is something that can help our baby girl! We have always tried or looked into things for Sam and I'm using those skills now. I know some doctors here think I may be clutching at straws but I know some doctors in Florida who thought that about Sam's corneal implant five years ago and now five years later our son can still see some. He went from 20/400 to around 20/100 and even better if he wears his glasses. That is a HUGE difference and it didn't' happen with us sitting around wishing...I had to look and call and go a thousand miles...but it was worth it. Now we have that experience behind us and we know now sometimes you have to push through and find things that may work for your children.
So pray that our sweet girl's fevers will stop and she will overcome this infection and that God will open the door for her to get this procedure if this is what will help her! I have to say I am incredibly excited and hopeful! We already have one little medical miracle in our family, ready for Selah to be the next one!!!!! Last night I just got such a peace about everything and felt like today would be a turning point for her. Learning about this, had certainly excited us and given us hope.
Our ultimate HOPE is in God, the creator of heaven and earth but we have always been thankful for the compassion and wisdom of doctors and always have given the ultimate thanks to God for the skills that our son's doctor has. I believe that most doctors, especially ones who have big medical breakthroughs, have hearts of compassion, and want to ease suffering. I know we see that in our son's doctor, Dr Aquevella.
So pray for us as we get more info!! Thank you!!!!
Cord Blood Study
Just found info about a new procedure where cord blood (from umbilical cords) is used to treat brain injuries like Selah's. I hunted down a couple of studies, she wouldn't qualify for either. One is for people over 18 yrs old, the other is for children who have banked their cord blood. PLEASE pray that we or the doctors here will find a study that will accept her!!!!! If you have ANY info on this please contact me!!!!!!
I read a medially documented case where a child was without a heart beat for 45 minutes and is now back to normal thanks to this! It was by using her own banked cord blood but why not use a donor's?
Please pray that we can find a study!!! One of the doctors here was hesitant but we learned a LONG time ago to be aggressive and not to sit back and wait on anyone to find us help. I reminded him that we would have a son who had no sight if we hadn't pushed and looked for something "experimental" Nothing ventured, nothing gained is an old but good saying!
So if you know of anything like this, please let me know. Thanks!
I read a medially documented case where a child was without a heart beat for 45 minutes and is now back to normal thanks to this! It was by using her own banked cord blood but why not use a donor's?
Please pray that we can find a study!!! One of the doctors here was hesitant but we learned a LONG time ago to be aggressive and not to sit back and wait on anyone to find us help. I reminded him that we would have a son who had no sight if we hadn't pushed and looked for something "experimental" Nothing ventured, nothing gained is an old but good saying!
So if you know of anything like this, please let me know. Thanks!
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