Well Mommy had a rough day but physically Selah had a better day. It seems she is responding better to the new BP meds and her BP is near normal range. It does change throughout the day when it wears off. She still is breathing on her own and keeping her oxygen levels up to 100%! She is at her goal on her g-tube feeds and has had no problem with it. Her heart rate has come down to a near normal range the last few days. So we just need prayer that she will remain stable and that her BP can continue to be controlled. She finally had the EEG and they do not feel she had any seizure activity.
The biggest prayer we need is that God will touch and heal her neurologically ! Today a doctor basically told me "this is where she will be". Of course this is the same doctor who told me she would not live through the day of her accident so I can put it into perspective...
So if you wonder where she is....she is in a vegetative coma. She can breathe on her own but that is it. Her limbs have already stiffened, they feel like wood and she rarely moves except for movements that affect her whole body. They are not "good" movements, they are the kind of movements that show she has massive brain damage. She can not swallow. She has rare periods when it seems she responds to us but they are few and far between. she is not constant with responses like she needs to be. The neurologist who read her EEG today but it rather bluntly....he compared her EEG to a "normal" 8 yr old and said if it were normal, she'd be like a car running on all 6 cylinders. Taking into account her delays, he compared what he thought her EEG would look like , maybe a car running on 2 or 3 cylinders...where she is now...it's like she is running on a half of a cylinder....Her EEG shows massive damage, very slow responses...Hard news to hear for me and for me to write to you...but you need to understand where she is at.
So now you know where she is at and how to pray! We need to see more response and we need to see her limbs relax. It is so very hard to see her like this. You have no idea. Just looking at pictures of her, tear at my heart.
We feel the doctors do everything that can be done that is safe for her. She is on several meds, some to relax her body/limbs, she has Pt and OT, she has splints on her hands so that won't curl up. She wears boots on her feet so the toes won't point out. We play music and interact with her. There is nothing else to be done....She needs a touch from God!
There is no hope for her except in God. We have no one to turn to but Him. I'm so thankful He is our refuge and our strength, a very present help in time of trouble! All I can say is that scripture is true. I promise you it's true!!! Thank God it's true! This God that I serve does fulfill His promises! So if you wonder if God is real, let me tell you He is. He is the only ONE keeping me sane:)
Thank you for praying for Selah! Please keep her in your prayers! We so appreciate your prayers!
BTW it is COLD here in Rochester NY! Tomorrow it will be in the 40's, we think it's kinda neat for it to be so cold in September, the kids are amazed:) Tonight I'm wrapped up in a nice blanket that a friend sent the girls, I'm borrowing it!
"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!
Monday, September 10, 2012
Shad
this is the picture of Shad meeting Selah.
http://myreallifebyyvonne.blogspot.com/2009_03_01_archive.html
I was asked about Shad's adoption story and you can go to the post above for it. Or scroll down to the very first month I blogged for his sweet story
Morning update for Selah:
They are going up on her BP meds, they feel that it is just her brain responding to the injury and she may always have high blood pressure and need meds. Everything else is stable.
The morning has been rough for me. Hearing all the problems/issues that we face...feeling really really low right now. I can not express to you how hard it is to see our daughter like this. I'm used to kids being on wires/IVs etc...I mean Sam came home with a bunch of machines but I think the difference was knowing they would one day be gone. Knowing this is where she is without a miracle is very very hard.
So again I ask, PRAY for Selah!!!!
Sunday, September 9, 2012
My Thoughts....
Since I was a child, I would think deeply about God and the things of God. Obviously God was calling me as a child to devote my life to Him. All I wanted to be was a pastor's wife:) Well I got that wish LOLOL! Then found out I was crazy for wishing it! But when others were thinking about various other things, I'd want to debate scripture. I look back now and laugh at myself but that was what was interesting to me. I always wanted to "rightly divide the word of truth" Even as a kid, I wanted to know answers WHY about many things in scripture.
Healing was never a big deal to me. Although I was raised in a pentecostal church, it just didn't come up in my life much. I was young, healthy...then we lost the twins and while healing was a secondary issue with them, my biggest was the whole question of suffering and WHY did we have to go through their loss! As I've said before I worked through that over years...then came Sam!
The whole issue of healing came and slapped me in the face! Now I grew up being taught all about healing and how it is for today. But I never really saw any true healings. That was my experience. Now we had a sick little blind, mentally delayed son....what did we do about it? Well we prayed, we had others pray, we even took him to a few meetings where ministers prayed for healing...Along the way, I came to believe that Sam was "fearfully and wonderfully made' God made Sam just like he was...a very very precious and special boy. He has Peter's Anomaly and a rare deletion in chromosome 4...he is probably one of the most rarest gems God ever made.....Was that a cop out? Not to me, I felt a total peace and acceptance of the situation. We were thrilled with him and there were times when he was sick or had an issue with his eyes after surgery that we prayed for God to touch that part of him. Honestly I can't imagine him any different than he is right now and just absolutely adore him!
I know we have friends/acquantices in the "faith" community who look down on us for having a handicapped child. Although NONE have ever had the nerve to say anything to our face (probably a bit scared of me LOL) but I feel we have been given a treasure that is so rare others just don't understand it. I've seen looks of others within our particular Christian circle, that I'd like to slap off their faces but I just roll my eyes and think of all they are missing with such a limited view of the graciousness of God. I'm sure some think we just don't have enough faith to see our son healed. Or maybe there is something wrong in our lives and that is why he was born with these issues.... There aren't many people who think like that, and certainly no one we would choose to be around, but they are there...on the fringe...
BTW, we think that children with handicaps are so special and close to the heart of God that we chose to go and adopt some more and bring them into our family! We were drawn to Shad, Sarah and Selah BECAUSE of their handicaps NOT because we necessarily wanted more kids! But they were the kids we needed to make up our family!
So now we are facing this....Selah went from being a special needs child to a child who is greatly handicapped...one who doesn't even seem to know we are there with her....How do we deal with this and the question of healing??????
If God spoke to my heart and I knew it was Him saying Selah would be healed, I'd proclaim it. God has given me faith for crazy things before like going to SEC and both Shad and the girls adoption as well as the rebuilding of our church ( more than $150,000 of work and we are debt free)
God hasn't spoken to either of us like that for Selah. We do not believe that God is a genie in a bottle and will just do whatever we say IF we say it enough or if we do certain things... We trust God through the difficulties.
God gave me a clear word in the mall that day, do not be afraid. He didn't promise that we'd have some great miracle...He didn't say He'd deliver us out of the situation, He just said "not to be afraid" that is what I'm clinging to...that no matter the outcome, He will be with us and we won't be afraid. I think that tends to be more real life than claiming a miracle.
I just keep praying that God will show mercy and I do remind Him of some things I've prayed for over the years, especially the last few months. So many times since we got the girls, I'd just thank God all throughout the day and before I'd go to sleep. I'd tell Him how happy I was and that ALL I asked for our family was to stay healthy and all be together for a long time. I can't tell you how many times I've prayed that specific prayer over the past few months. I'd never really prayed like that before... I told God that I didn't care about money, or whether our church was "successful" or where we lived or anything except to keep us all together, healthy and a long life....
I remind God of that prayer throughout my day...that prayer seemed to come from within my very being. It was not a prayer of fear or worry, just thankfulness and contentment....I was totally content with my life. We live in a tiny house, barely big enough to qualify for more children on our homestudy. My husband pastors a sweet church but a small one that doesn't seem to grow much no matter what we do, he works full time as a chaplain and hasn't had a raise in 6 or 7 yrs (thanks to all the budget problems) we live on a tight budget BUT we were sooooo happy and content. We didn't worry about the future, we didn't worry about finances, we didn't worry about much at all...we were just happy and content in our life. We wouldn't ever be on the cover of Charisma magazine or even our denominations' magazine for the most successful growing church, not alot of people knew our names, but we were faithfully doing the work of the kingdom. Jon was happy as a chaplain, he loves his inmates:) our kids were all settled and doing great...there was nothing, NOTHING that I desired EXCEPT for us to stay healthy and be together....I was content, I had found the secret of being content. Many times in my life I was not content....I was always looking ahead, wanting more, not necessarily material things, that has never been a big thing for me. But always wanting to "get ahead", be a success ,even in minsitry.... But here , out in the swamp (not really IN the swamp but mighty near) with five kids, in a tiny house, I found that elusive thing, contentment.
So now what do I have? Tonight is four weeks we have lived in the Ronald McDonald House, three and a half weeks since the accident with no real end in sight. My husband and I take turns taking care of Selah and the other kids here....Our kids are so flexible, I can't tell that any of them are stressed at all and I thank God that they are the kind of kids who just "go with the flow" But it's different living like this and dealing with all of this. Talk about living in a fishbowl! Tonight I went for a walk (yeah my foot is better-long story but I had THREE foot surgeries this summer and still have some issues that will have to be addressed when we get home sometime) but I just had to have a quiet place to cry out to God alone. I actually walked down by the Canal, past the area I think the accident happened but even at dusk on a cold (to me) night there were people around. So it's not the easiest place to be in to be dealing with all of this but it's ok. It's not home, our quiet little piece of the world.
I know that God is a God who listens. I do trust Him with my life, with my children's lives. He has been with me all the way through life, leading me, guiding me in so many many ways. I can look back and see the Hand of God through some deep valleys and through mountaintops too. So I don't have the testimony of HUGE miracles "the blind see, the deaf hear, the lame are walking" but I have the testimony that God is with me even through "the valley of the shadow of death" He has been there in the good times and the bad times. He has brought me out of things, He has provided for our needs. When we adopted Shad, there were complicates in my travel home and I believe God sent a real angel to help me and Shad...I shared it back awhile ago in a blog. I believe He meant for us to adopt these precious girls and provided all we needed for it. I believe He sent someone to give me a word (I'm almost thinking she was a angel also- but maybe not, maybe just someone who had the courage to come up to a complete stranger and share "Your family will be going through something big in a a few months and God wants you to know "do not be afraid!" Many will see...."
So I don't know what is going to happen. Maybe God will raise Selah up and heal her completely. Maybe we will have to walk this harder road with her. I don't know....I know what I want! I want Selah back 100% to her funny little self! Selah was delayed, maybe about a 12-18 month level. Some of the delay may have been because of being instiutionzed for years but she truly had real delays and would have never been "normal" but that was FINE with us! She was the funniest little girl and so cute! I know I write about her in the past tense but she is not that little girl anymore, she is so far away from us. That is the hardest thing for me to deal with.
So yes I cry out to God for healing but I trust Him regardless of what happens. God doesn't heal everyone, I don't have all the answers all I can say is I trust Him. Right now I have no real answers...but I trust Him. I try to look to eternity...even when everything within me is screaming for what I had, I try to look to THAT day when all tears are wiped away...
Is that just denial? Am I just trying to escape reality? I don't think so. I realize in this fallen world, things are going to be hard. No one promised us a rose garden. I read a blog of a friend today and she mentioned how ALL of the disciples of Jesus died horrible deaths. And the one who wasn't killed was exiled to an island for years and years, not an easy life! So if Jesus died on a cross and all his disciples had hard times, who are we to think we are going to sail through life and just live a hunky-dory life? That is not how it works! I think that is the problem with the church world today. We have ministers promising us things that God never promised us! Yes God will give you a wonderful enriching life but it may not be the life you planned it to be! I'm sure all the disciples knew God in a deep way and treasured the life that God gave them but it wasn't an easy life. If you take the Bible IN CONTEXT which means, learn to understand the bible as it was written and what the bible really means. for example , you can't just pick up the bible and open it randomly and pick a scripture out and say this is what God is saying to me. Ever heard the old joke about the man who did that and the first verse he picked was "Judas hung himself" well he didn't like that so he tried it again and the next verse he picked was "And go and do likewise"...that's funny but I know folks like that. Or my most annoying thing is when folks say "well God won't give you more than you can bear" and think that is a scripture...it is NOT!!!!! In that passage of scripture in I Corinthians 10:13 Paul is talking about TEMPTATION! And it really says is that temptation is common to all men and that " God will not allow us to be tempted above that which we can bear but with every temptation He will provide a way of escape." So PLEASE never say that to me to try and "comfort" me....it drives me CRAZY!!!!!!!!! Sorry my soapbox........
So we are trusting and that is not easy right now. Sometimes it is an hourly struggle for me. One hour I can reaffirming my faith, the next I am crying out to God saying "God do you remember me?" I'm not a saint at all. I shrink from learning about Selah's tubes and the care of them. Jon has started learning, and I just can not right now. I do NOT want to learn to do them, everything in me wants my Selah back. But I know I will have to learn how to take care of her. It's not that I don't want to take care of her but I hate the tubes, hate that she has to have all of this. Hate that even with all of this she is having health issues....I'm mad! And I'm not sure of who or what I'm angry with I'm just mad that this little girl who has gone through HELL has to deal with this now. Sometimes I'm glad she seems unaware of things...I hope she doesn't know much of what is going on with her physically right now. I'm drawn to her I want to touch her and hold her and try to as much as I can despite the tubes, so don't think I've turned away from her. It's not that, I just hate what the tubes represent.
This is so hard, if I thought there was a magic formula that would bring her back to us, I'd probably do it. But there is not, there is no where in scripture that gives us a magical formula. In fact one of my dear friends did a huge study on FAITH and in more than 50% of all healings that Jesus did, it was the faith of others NOT the patient that was mentioned . I find that interesting....so I ask you all to pray. Pray for Selah, pray that God will look upon her in mercy and heal her.
All I know is I'm going to trust God and "not foolishly charge God" with things. I think I'm gong to start studying the book of Job. There are many truths in there to learn. Job trusted God and despite what was going on, he didn't foolishly charge God with anything. But he did question God at times.
Our story has become public, and although I will always be honest in my writings, I do want to point anyone who hears or reads our story to Jesus. We're not perfect people. We are in pain and dealing with the hardest thing we have ever dealt with but we can still say God is good. Our circumstances do not change who God is...and His peace has surrounded us throughout this horrible time like a a blanket. My hope for everyone who reads this is that they will experience the peace of God in their hard times like we have.
My husband likes to sing a old song that goes "This peace that I have , the world didn't give it and the world can not take it away" That is so true. Although our hearts are breaking, we still have peace. That is something I can not explain but it is so true!
Please pray for Selah. Her blood pressures remain high and pray that she returns to us!
Healing was never a big deal to me. Although I was raised in a pentecostal church, it just didn't come up in my life much. I was young, healthy...then we lost the twins and while healing was a secondary issue with them, my biggest was the whole question of suffering and WHY did we have to go through their loss! As I've said before I worked through that over years...then came Sam!
The whole issue of healing came and slapped me in the face! Now I grew up being taught all about healing and how it is for today. But I never really saw any true healings. That was my experience. Now we had a sick little blind, mentally delayed son....what did we do about it? Well we prayed, we had others pray, we even took him to a few meetings where ministers prayed for healing...Along the way, I came to believe that Sam was "fearfully and wonderfully made' God made Sam just like he was...a very very precious and special boy. He has Peter's Anomaly and a rare deletion in chromosome 4...he is probably one of the most rarest gems God ever made.....Was that a cop out? Not to me, I felt a total peace and acceptance of the situation. We were thrilled with him and there were times when he was sick or had an issue with his eyes after surgery that we prayed for God to touch that part of him. Honestly I can't imagine him any different than he is right now and just absolutely adore him!
I know we have friends/acquantices in the "faith" community who look down on us for having a handicapped child. Although NONE have ever had the nerve to say anything to our face (probably a bit scared of me LOL) but I feel we have been given a treasure that is so rare others just don't understand it. I've seen looks of others within our particular Christian circle, that I'd like to slap off their faces but I just roll my eyes and think of all they are missing with such a limited view of the graciousness of God. I'm sure some think we just don't have enough faith to see our son healed. Or maybe there is something wrong in our lives and that is why he was born with these issues.... There aren't many people who think like that, and certainly no one we would choose to be around, but they are there...on the fringe...
BTW, we think that children with handicaps are so special and close to the heart of God that we chose to go and adopt some more and bring them into our family! We were drawn to Shad, Sarah and Selah BECAUSE of their handicaps NOT because we necessarily wanted more kids! But they were the kids we needed to make up our family!
So now we are facing this....Selah went from being a special needs child to a child who is greatly handicapped...one who doesn't even seem to know we are there with her....How do we deal with this and the question of healing??????
If God spoke to my heart and I knew it was Him saying Selah would be healed, I'd proclaim it. God has given me faith for crazy things before like going to SEC and both Shad and the girls adoption as well as the rebuilding of our church ( more than $150,000 of work and we are debt free)
God hasn't spoken to either of us like that for Selah. We do not believe that God is a genie in a bottle and will just do whatever we say IF we say it enough or if we do certain things... We trust God through the difficulties.
God gave me a clear word in the mall that day, do not be afraid. He didn't promise that we'd have some great miracle...He didn't say He'd deliver us out of the situation, He just said "not to be afraid" that is what I'm clinging to...that no matter the outcome, He will be with us and we won't be afraid. I think that tends to be more real life than claiming a miracle.
I just keep praying that God will show mercy and I do remind Him of some things I've prayed for over the years, especially the last few months. So many times since we got the girls, I'd just thank God all throughout the day and before I'd go to sleep. I'd tell Him how happy I was and that ALL I asked for our family was to stay healthy and all be together for a long time. I can't tell you how many times I've prayed that specific prayer over the past few months. I'd never really prayed like that before... I told God that I didn't care about money, or whether our church was "successful" or where we lived or anything except to keep us all together, healthy and a long life....
I remind God of that prayer throughout my day...that prayer seemed to come from within my very being. It was not a prayer of fear or worry, just thankfulness and contentment....I was totally content with my life. We live in a tiny house, barely big enough to qualify for more children on our homestudy. My husband pastors a sweet church but a small one that doesn't seem to grow much no matter what we do, he works full time as a chaplain and hasn't had a raise in 6 or 7 yrs (thanks to all the budget problems) we live on a tight budget BUT we were sooooo happy and content. We didn't worry about the future, we didn't worry about finances, we didn't worry about much at all...we were just happy and content in our life. We wouldn't ever be on the cover of Charisma magazine or even our denominations' magazine for the most successful growing church, not alot of people knew our names, but we were faithfully doing the work of the kingdom. Jon was happy as a chaplain, he loves his inmates:) our kids were all settled and doing great...there was nothing, NOTHING that I desired EXCEPT for us to stay healthy and be together....I was content, I had found the secret of being content. Many times in my life I was not content....I was always looking ahead, wanting more, not necessarily material things, that has never been a big thing for me. But always wanting to "get ahead", be a success ,even in minsitry.... But here , out in the swamp (not really IN the swamp but mighty near) with five kids, in a tiny house, I found that elusive thing, contentment.
So now what do I have? Tonight is four weeks we have lived in the Ronald McDonald House, three and a half weeks since the accident with no real end in sight. My husband and I take turns taking care of Selah and the other kids here....Our kids are so flexible, I can't tell that any of them are stressed at all and I thank God that they are the kind of kids who just "go with the flow" But it's different living like this and dealing with all of this. Talk about living in a fishbowl! Tonight I went for a walk (yeah my foot is better-long story but I had THREE foot surgeries this summer and still have some issues that will have to be addressed when we get home sometime) but I just had to have a quiet place to cry out to God alone. I actually walked down by the Canal, past the area I think the accident happened but even at dusk on a cold (to me) night there were people around. So it's not the easiest place to be in to be dealing with all of this but it's ok. It's not home, our quiet little piece of the world.
I know that God is a God who listens. I do trust Him with my life, with my children's lives. He has been with me all the way through life, leading me, guiding me in so many many ways. I can look back and see the Hand of God through some deep valleys and through mountaintops too. So I don't have the testimony of HUGE miracles "the blind see, the deaf hear, the lame are walking" but I have the testimony that God is with me even through "the valley of the shadow of death" He has been there in the good times and the bad times. He has brought me out of things, He has provided for our needs. When we adopted Shad, there were complicates in my travel home and I believe God sent a real angel to help me and Shad...I shared it back awhile ago in a blog. I believe He meant for us to adopt these precious girls and provided all we needed for it. I believe He sent someone to give me a word (I'm almost thinking she was a angel also- but maybe not, maybe just someone who had the courage to come up to a complete stranger and share "Your family will be going through something big in a a few months and God wants you to know "do not be afraid!" Many will see...."
So I don't know what is going to happen. Maybe God will raise Selah up and heal her completely. Maybe we will have to walk this harder road with her. I don't know....I know what I want! I want Selah back 100% to her funny little self! Selah was delayed, maybe about a 12-18 month level. Some of the delay may have been because of being instiutionzed for years but she truly had real delays and would have never been "normal" but that was FINE with us! She was the funniest little girl and so cute! I know I write about her in the past tense but she is not that little girl anymore, she is so far away from us. That is the hardest thing for me to deal with.
So yes I cry out to God for healing but I trust Him regardless of what happens. God doesn't heal everyone, I don't have all the answers all I can say is I trust Him. Right now I have no real answers...but I trust Him. I try to look to eternity...even when everything within me is screaming for what I had, I try to look to THAT day when all tears are wiped away...
Is that just denial? Am I just trying to escape reality? I don't think so. I realize in this fallen world, things are going to be hard. No one promised us a rose garden. I read a blog of a friend today and she mentioned how ALL of the disciples of Jesus died horrible deaths. And the one who wasn't killed was exiled to an island for years and years, not an easy life! So if Jesus died on a cross and all his disciples had hard times, who are we to think we are going to sail through life and just live a hunky-dory life? That is not how it works! I think that is the problem with the church world today. We have ministers promising us things that God never promised us! Yes God will give you a wonderful enriching life but it may not be the life you planned it to be! I'm sure all the disciples knew God in a deep way and treasured the life that God gave them but it wasn't an easy life. If you take the Bible IN CONTEXT which means, learn to understand the bible as it was written and what the bible really means. for example , you can't just pick up the bible and open it randomly and pick a scripture out and say this is what God is saying to me. Ever heard the old joke about the man who did that and the first verse he picked was "Judas hung himself" well he didn't like that so he tried it again and the next verse he picked was "And go and do likewise"...that's funny but I know folks like that. Or my most annoying thing is when folks say "well God won't give you more than you can bear" and think that is a scripture...it is NOT!!!!! In that passage of scripture in I Corinthians 10:13 Paul is talking about TEMPTATION! And it really says is that temptation is common to all men and that " God will not allow us to be tempted above that which we can bear but with every temptation He will provide a way of escape." So PLEASE never say that to me to try and "comfort" me....it drives me CRAZY!!!!!!!!! Sorry my soapbox........
So we are trusting and that is not easy right now. Sometimes it is an hourly struggle for me. One hour I can reaffirming my faith, the next I am crying out to God saying "God do you remember me?" I'm not a saint at all. I shrink from learning about Selah's tubes and the care of them. Jon has started learning, and I just can not right now. I do NOT want to learn to do them, everything in me wants my Selah back. But I know I will have to learn how to take care of her. It's not that I don't want to take care of her but I hate the tubes, hate that she has to have all of this. Hate that even with all of this she is having health issues....I'm mad! And I'm not sure of who or what I'm angry with I'm just mad that this little girl who has gone through HELL has to deal with this now. Sometimes I'm glad she seems unaware of things...I hope she doesn't know much of what is going on with her physically right now. I'm drawn to her I want to touch her and hold her and try to as much as I can despite the tubes, so don't think I've turned away from her. It's not that, I just hate what the tubes represent.
This is so hard, if I thought there was a magic formula that would bring her back to us, I'd probably do it. But there is not, there is no where in scripture that gives us a magical formula. In fact one of my dear friends did a huge study on FAITH and in more than 50% of all healings that Jesus did, it was the faith of others NOT the patient that was mentioned . I find that interesting....so I ask you all to pray. Pray for Selah, pray that God will look upon her in mercy and heal her.
All I know is I'm going to trust God and "not foolishly charge God" with things. I think I'm gong to start studying the book of Job. There are many truths in there to learn. Job trusted God and despite what was going on, he didn't foolishly charge God with anything. But he did question God at times.
Our story has become public, and although I will always be honest in my writings, I do want to point anyone who hears or reads our story to Jesus. We're not perfect people. We are in pain and dealing with the hardest thing we have ever dealt with but we can still say God is good. Our circumstances do not change who God is...and His peace has surrounded us throughout this horrible time like a a blanket. My hope for everyone who reads this is that they will experience the peace of God in their hard times like we have.
My husband likes to sing a old song that goes "This peace that I have , the world didn't give it and the world can not take it away" That is so true. Although our hearts are breaking, we still have peace. That is something I can not explain but it is so true!
Please pray for Selah. Her blood pressures remain high and pray that she returns to us!
Sunday update
Nothing has changed, her blood pressures stay high most of the time. They do seem to respond to the meds in the first hour following her medication but then they climb right back up. Please pray for her!
Today I keep reminding myself of that word I got from the Lord, in the mall...Don't be afraid....that is what I'm holding on to right now. Feeling very fearful on many different fronts....but thankful that The God of the Universe took the time to tell me "do not be afraid" three months before this happened. I've never had a prophetic word in my life. Being raised Pentecostal and becoming quite skeptical of alot of foolishness at a early age, did NOT make me a good audience LOL. I've been in services where everyone around me "got a word" but for me. I always thought it was quite funny! But God....gives me a soft gentle word in the middle of the Mall, that speaks to my heart in the worst times. I'm holding onto that word right now.
I know I ask for prayer for Selah all the time...and I just have to tell you that is the one thing that you can do for us. Pray that her BP will come down and that she will respond to us. She seems so far away from us right now. Her body is stiff, responding to neurological signals of injury. It's so sad to see her like this. She is breathing on her own and accepting her feeds through the g-tube with no issues and we are glad of that but .....please pray!!!!!
Today I keep reminding myself of that word I got from the Lord, in the mall...Don't be afraid....that is what I'm holding on to right now. Feeling very fearful on many different fronts....but thankful that The God of the Universe took the time to tell me "do not be afraid" three months before this happened. I've never had a prophetic word in my life. Being raised Pentecostal and becoming quite skeptical of alot of foolishness at a early age, did NOT make me a good audience LOL. I've been in services where everyone around me "got a word" but for me. I always thought it was quite funny! But God....gives me a soft gentle word in the middle of the Mall, that speaks to my heart in the worst times. I'm holding onto that word right now.
I know I ask for prayer for Selah all the time...and I just have to tell you that is the one thing that you can do for us. Pray that her BP will come down and that she will respond to us. She seems so far away from us right now. Her body is stiff, responding to neurological signals of injury. It's so sad to see her like this. She is breathing on her own and accepting her feeds through the g-tube with no issues and we are glad of that but .....please pray!!!!!
Saturday, September 8, 2012
Still need prayers!!
Selah's blood pressure is still high, last reading 161/110! She responds to the meds given for about an hour then her pressures go back up. She had two "seizure like " movements today. She will have an EEG tomorrow to see if anything registers...she'd had it on continuously for about a week with no sign of seizure activity.
She has had many tests to try and determine why her blood pressures are this high. They've ruled out most regular reasons. It could be that her brain is "changing" and it needs more blood. That is not really a "good" thing.
Her heart rate has become a bit more stable, it seems to mostly stay in the 120-130 range which is still on the high side but not as high.
So again our girl is in a dangerous situation. Please pray for her. We are so disheartened that she is having these problems. She hasn't really responded to us in the last couple of days.
She is breathing great on her own and she is doing well with feeds. Her g-tube seems to be working good. We are thankful that she is doing good in these area.
I just ask and ask for you to pray for her...ask your church to pray, ask your friends to pray...Please dont' forget about her. We haven't given up hope for recovery, but some days are way harder than others, this is one of those days.
She has had many tests to try and determine why her blood pressures are this high. They've ruled out most regular reasons. It could be that her brain is "changing" and it needs more blood. That is not really a "good" thing.
Her heart rate has become a bit more stable, it seems to mostly stay in the 120-130 range which is still on the high side but not as high.
So again our girl is in a dangerous situation. Please pray for her. We are so disheartened that she is having these problems. She hasn't really responded to us in the last couple of days.
She is breathing great on her own and she is doing well with feeds. Her g-tube seems to be working good. We are thankful that she is doing good in these area.
I just ask and ask for you to pray for her...ask your church to pray, ask your friends to pray...Please dont' forget about her. We haven't given up hope for recovery, but some days are way harder than others, this is one of those days.
Prayer Needed! High Blood Pressure
Last night Selah's blood pressures were up and down. This morning she may have had a seizure. It was small and they aren't sure but neuro is coming to check her out. Please pray that her blood pressure will normalize! This is NOT a good thing! It seemed the meds she was given last night worked for about an hour but then wore off. She is little and can't get just tons of medicine plus it can affect her body in other ways, everything has to be weighed out. Please pray for Selah!!!!!!! this is desperate once again!!!
Friday, September 7, 2012
Selah's Story
Someone asked if I'd tell our story/Selah's story to my new readers. If you go back to November 2011 on, you can read it in more detail...but here goes...
Last summer we were a happy family with our three boys...Jon & I are in our late 40's and thought we were complete. We had thought about adoption right after we adopted Shad but that adoption didn't work out. So we thought we were done...and we were fine with it.
Then....a friend posted a blog about a family who had adopted a 12 year old from Bulgaria who weighed 12 pounds she had Downs and was horribly mistreated...I read about their journey & was just amazed! In that blog, they mentioned Reece's Rainbow. Well I looked...and googled "blind children' and three kids came up...Sarah (named Genesis for their purpose to not share her real name), Dimitry and Michelle. Sarah looked JUST like Sam. In the awful picture, her head was shaved and I thought she was a he. She looked so much like Sam, that I was blown away. I turned the computer off, I was just sick on my stomach. Her little blurb talked about the fact she was in an adult mental institution. That night I couldn't sleep, I tossed & turned and thought "what if that were Sam????" I prayed for all three children but especially her (although I thought at the time, she was a boy) The next Sunday was the first Sunday in November which has become "orphan Sunday" I talked to Jon and we decide to take up an offering and put money on a grant for all three children to help someone to adopt them. So we took up an offering. Then by that Sunday evening I had decided a one time offering of a little less than $300 just was not enough! Our church Grace Church had just gone through a building program and because of the generosity of other churches and individuals, we owed no money at all on the more than $100,000 worth of repairs! So I thought our church needed to step up and raise the full amount for all three children to get families....
The next day I called the director of Reece's Rainbow and shared all that with her. I'm sure she thought I was a bit of a kook but she wasn't the first nor would be the last to think that LOL!
So that idea lasted for about 3 days LOL! On Wednesday night I met my husband outside our house after he drove up and told him I didn't want anyone else to adopt Sarah! He totally agreed...the next morning I was back to calling the director of Reece's Rainbow...well just that past Monday I told her that we wanted to help those kids but we were NOT going to adopt them! LOLOL!! So now I'm telling her we wanted to adopt Sarah and Dimitry since they were at the same adult mental institution! I'm sure she thought I was truly a kook then!!!!!
We wanted to commit to Sarah (Genesis) and Dimitry. But RR wasn't sure if that was a good idea as they were at mental institution where there were concerns about adopting from. (Come to find out, we were 100% welcomed there) but we committed to Sarah and began the process of compiling a dossier.
I put on FB what we were doing and how much money we needed for our "American" side of the adoption. Within THREE hours the total amount that we needed to get started came in as pledges! CRAZY!
So we ran through the adoption process, mostly due to the fact we had a great social worker who we had worked together with before in Shad's adoption and plus I was totally motivated to get the dossier done. I had all our paperwork done in 8 weeks!!! Somewhere along the line we committed to Dimitry also who we had planned to rename Seth.
Our fiances were coming in. On December 31, 2011, we estimated that we need over $17,000 to complete the adoption. On that day OVER $10,000 came in! Some through the fund that Reece's Rainbow set up for us and some from a family who gave through our church. Then God spoke to my heart and told me that the reminder would come in all at one time...Two weeks later it did....So we wre fully funded and our paperwork was in country. Then we waited for a travel date...that was sooooo hard! Throughout the process I had a fear that one of the children would die. It was a real fear because that happens. One family just lost the child they were hoping to adopt only NINE days before they were to travel. It's a real life and death struggle in Ukraine. Ukraine is a very poor country with little health care available.
Well one morning I got a email from our facilitator...I read it and just started bawling! Another family had adopted Dimitry...it just broke our hearts. I was sad and angry. Oh that day was just awful!!! If you adopt from Ukraine, the child you want to adopt is not held for you. Some countries do hold a child but Ukraine feels that the child should have every chance of a family and it is in the child's interest that they are not held. Many times adoptive families do back out on adoptions and if the child's case has been held, it may keep another family from moving forward for the child. I actually agree with how it is done but it is scary while you are adopting! So that day I was a mess! But I determined I was going to trust God. I've said this before,and I'll say it again, I've been bitter and I know how awful that place is! I will not go back to there again! So we worked through the disappointment as a family and looked at it as a blessing for Dimitry that he would have a family before we could get there and that he was already being cared for and loved on. He had more special needs so who knows if he would have survived until we got there. Maybe he would have gotten pneumonia or a flu in the weeks before we could come? God knows what is best. (FYI, we are now quite good friends with his family and love them and are sooo happy for him and them! They worked with another facilitator and didn't know us. It's great to be friends with them and see him blossom and grow. We hope one day to meet in person:)
So then we were bombarded it seemed by pictures of other children that were there and available for adoption...the first picture was of Selah. Her condition was listed as blind and Cerebral palsy. We doubted she was blind because of the way she looked into the camera in every picture we saw of her. We were cautious but went ahead and changed our home study to include her age and all her disabilities.
This all happened about 6 weeks before we left. Then I started getting excited about having TWO little girls! ME, the mother of THREE boys, would get to have PINK!!!! Let the shopping begin LOLOLOL!!!!
Then we left on March 30th, met the girls on April 4th, went to court, finally were allowed to take them out on May 5th, got home on May 9th after all the embassy stuff...then we had a wonderful magical summer. Selah was most certainly NOT blind nor did she have CP. Both girls were just a joy to have and they fit into our family like they were the missing pieces! Over and over throughout the summer, I would just tell God how thankful I was for my life and my five children! I told Jon several times that I had NEVER been happier before in my life. We had these three great boys who we adored and now we were blessed with these two precious angels who just fit in and were so easy to parent. Our biggest challenge was getting the three little ones into the van. Sam and Selah don't walk all that good and Sarah doesn't walk yet so it was challenging if you were by yourself to get everyone in and strapped! Truly that was my biggest challenge! Selah and Sarah were pure joy:) There were none of the problems that we anticaped of adopting older children from a mental institution! What a marvelous summer it was, introducing them to new things, planning their wardrobe ( no they didn't care but it was fun to me to put them in new outfits daily!) What fun we had!
On August 10th we left Florida to drive up here for Sam's yearly check up and to see if Sarah would be eligible for a corneal implant. We took our time driving, stopped in Mt Airy NC to visit Andy Griffith's hometown, had a great time. We got here and on August 14, Sam and Sarah had EUA (exam under anesthesia) Sam's eyes were perfect, five years out from his corneal implant. Dr Aquevella had some concerns about Sarah's eye being strong enough to have the operation. So she was scheduled for a MRI on August 16th.
Selah's 8th birthday was on August 14, the day Sam and Sarah had the EUAs. We were at this hospital from 6 am till 4 pm. It was pouring rain that night so we stayed in and ate at the RMH...we really didn't celebrate her birthday, we planned to do so on August 15th.
The accident happened on Aug 15th.
We did get Sarah an MRI the next week but determined her eye is too fragile for the operation.
BTW, the other little girl Michelle who was at another mental institution has a family now also!
DAILY UPDATE:
Jon stayed throughout the day with Selah and I stayed with the other four. Today she has battled very very high blood pressures. One medicine was tried but it brought her heart rate up too high. She has been given a different one now and thankfully her body has responded to it perfectly! Please keep praying for her!
Jon felt like she responded to him today in a new way. Se was mimicking the noises she used to make for different things (she was non verbal) and she began moving her lips as if she were copying him. I took over at 7pm and felt like she was very far away. She is extremely stiff tonight, her limbs feel like a piece of wood. She has just been given some meds for that also. Their hope is that she will relax her limbs as it causes more damage to her range of motion. She seems very far away tonight and again I am just hanging on in faith. PLEASE pray for her!
Our family was blessed today by the Rochester Macy's! They invited us to come and shop with them! It was a fun but a bit overwhelming experience:) They gave us about $150 in free mechanise and then gave us crazy discounts on everything else we bought:) All the boys got a Nike jogging suit and jeans and a long sleeved shirt. Steve somehow got a 2nd Nike shirt and soft jogging pants (don't know how that happened LOL) Got Sarah a PJ set and a new outfit too. We had a wonderful manager with us helping me or I'd probably been so overwhelmed I would have left long before I did! She insited that I get something and Jon too and we actually both got several things. It was fun and we met some really sweet folks! Thanks to the manager Bill and his assistant Amanda!!!!!! You guys just blessed our family so much and in such a sweet warm way:) Steve and Shad can't wait to wear their new clothes! They are excited and hoping it will get cooler quick!!!! We are truly thankful for your kindness to our family!
Y'all know we're from the south....but we have met some wonderful folks up here in the north and have experienced "Northern Hospitality"! We are daily amazed by all the kindness we have been shown! We are blessed with this great hospital and staff who do all they can for Selah and truly seem to care even about little details! We are blessed with the Ronald McDonald House and staff and volunteers who truly care about our family as if we were part of their family! The community of Rochester has been kind to us in so many ways & has reached out to us~ During this trying time we have been surrounded by so much love! We have a college friend Charlene Wallenbeck who comes every day and stays with our other four kids so Jon & I can come up to the hospital together for some time! Our hearts are overflowing with thankfulness for all the kindness so many here have shown to us! The readers of my blog have been so uplifting in their responses, we have so many friends all over the world praying for Selah...calls, texts, emails, cards, packages, gift cards, food, checks...people reaching out in practical ways...it blows us away. It's been a great lesson for Steve and Shad to see how much it means to reach out to others when trying times come! They are so appreciative also. We can't help but weep at times from just the love we've recieved from so many...THANK YOU ALL!!!!
Last summer we were a happy family with our three boys...Jon & I are in our late 40's and thought we were complete. We had thought about adoption right after we adopted Shad but that adoption didn't work out. So we thought we were done...and we were fine with it.
Then....a friend posted a blog about a family who had adopted a 12 year old from Bulgaria who weighed 12 pounds she had Downs and was horribly mistreated...I read about their journey & was just amazed! In that blog, they mentioned Reece's Rainbow. Well I looked...and googled "blind children' and three kids came up...Sarah (named Genesis for their purpose to not share her real name), Dimitry and Michelle. Sarah looked JUST like Sam. In the awful picture, her head was shaved and I thought she was a he. She looked so much like Sam, that I was blown away. I turned the computer off, I was just sick on my stomach. Her little blurb talked about the fact she was in an adult mental institution. That night I couldn't sleep, I tossed & turned and thought "what if that were Sam????" I prayed for all three children but especially her (although I thought at the time, she was a boy) The next Sunday was the first Sunday in November which has become "orphan Sunday" I talked to Jon and we decide to take up an offering and put money on a grant for all three children to help someone to adopt them. So we took up an offering. Then by that Sunday evening I had decided a one time offering of a little less than $300 just was not enough! Our church Grace Church had just gone through a building program and because of the generosity of other churches and individuals, we owed no money at all on the more than $100,000 worth of repairs! So I thought our church needed to step up and raise the full amount for all three children to get families....
The next day I called the director of Reece's Rainbow and shared all that with her. I'm sure she thought I was a bit of a kook but she wasn't the first nor would be the last to think that LOL!
So that idea lasted for about 3 days LOL! On Wednesday night I met my husband outside our house after he drove up and told him I didn't want anyone else to adopt Sarah! He totally agreed...the next morning I was back to calling the director of Reece's Rainbow...well just that past Monday I told her that we wanted to help those kids but we were NOT going to adopt them! LOLOL!! So now I'm telling her we wanted to adopt Sarah and Dimitry since they were at the same adult mental institution! I'm sure she thought I was truly a kook then!!!!!
We wanted to commit to Sarah (Genesis) and Dimitry. But RR wasn't sure if that was a good idea as they were at mental institution where there were concerns about adopting from. (Come to find out, we were 100% welcomed there) but we committed to Sarah and began the process of compiling a dossier.
I put on FB what we were doing and how much money we needed for our "American" side of the adoption. Within THREE hours the total amount that we needed to get started came in as pledges! CRAZY!
So we ran through the adoption process, mostly due to the fact we had a great social worker who we had worked together with before in Shad's adoption and plus I was totally motivated to get the dossier done. I had all our paperwork done in 8 weeks!!! Somewhere along the line we committed to Dimitry also who we had planned to rename Seth.
Our fiances were coming in. On December 31, 2011, we estimated that we need over $17,000 to complete the adoption. On that day OVER $10,000 came in! Some through the fund that Reece's Rainbow set up for us and some from a family who gave through our church. Then God spoke to my heart and told me that the reminder would come in all at one time...Two weeks later it did....So we wre fully funded and our paperwork was in country. Then we waited for a travel date...that was sooooo hard! Throughout the process I had a fear that one of the children would die. It was a real fear because that happens. One family just lost the child they were hoping to adopt only NINE days before they were to travel. It's a real life and death struggle in Ukraine. Ukraine is a very poor country with little health care available.
Well one morning I got a email from our facilitator...I read it and just started bawling! Another family had adopted Dimitry...it just broke our hearts. I was sad and angry. Oh that day was just awful!!! If you adopt from Ukraine, the child you want to adopt is not held for you. Some countries do hold a child but Ukraine feels that the child should have every chance of a family and it is in the child's interest that they are not held. Many times adoptive families do back out on adoptions and if the child's case has been held, it may keep another family from moving forward for the child. I actually agree with how it is done but it is scary while you are adopting! So that day I was a mess! But I determined I was going to trust God. I've said this before,and I'll say it again, I've been bitter and I know how awful that place is! I will not go back to there again! So we worked through the disappointment as a family and looked at it as a blessing for Dimitry that he would have a family before we could get there and that he was already being cared for and loved on. He had more special needs so who knows if he would have survived until we got there. Maybe he would have gotten pneumonia or a flu in the weeks before we could come? God knows what is best. (FYI, we are now quite good friends with his family and love them and are sooo happy for him and them! They worked with another facilitator and didn't know us. It's great to be friends with them and see him blossom and grow. We hope one day to meet in person:)
So then we were bombarded it seemed by pictures of other children that were there and available for adoption...the first picture was of Selah. Her condition was listed as blind and Cerebral palsy. We doubted she was blind because of the way she looked into the camera in every picture we saw of her. We were cautious but went ahead and changed our home study to include her age and all her disabilities.
This all happened about 6 weeks before we left. Then I started getting excited about having TWO little girls! ME, the mother of THREE boys, would get to have PINK!!!! Let the shopping begin LOLOLOL!!!!
Then we left on March 30th, met the girls on April 4th, went to court, finally were allowed to take them out on May 5th, got home on May 9th after all the embassy stuff...then we had a wonderful magical summer. Selah was most certainly NOT blind nor did she have CP. Both girls were just a joy to have and they fit into our family like they were the missing pieces! Over and over throughout the summer, I would just tell God how thankful I was for my life and my five children! I told Jon several times that I had NEVER been happier before in my life. We had these three great boys who we adored and now we were blessed with these two precious angels who just fit in and were so easy to parent. Our biggest challenge was getting the three little ones into the van. Sam and Selah don't walk all that good and Sarah doesn't walk yet so it was challenging if you were by yourself to get everyone in and strapped! Truly that was my biggest challenge! Selah and Sarah were pure joy:) There were none of the problems that we anticaped of adopting older children from a mental institution! What a marvelous summer it was, introducing them to new things, planning their wardrobe ( no they didn't care but it was fun to me to put them in new outfits daily!) What fun we had!
On August 10th we left Florida to drive up here for Sam's yearly check up and to see if Sarah would be eligible for a corneal implant. We took our time driving, stopped in Mt Airy NC to visit Andy Griffith's hometown, had a great time. We got here and on August 14, Sam and Sarah had EUA (exam under anesthesia) Sam's eyes were perfect, five years out from his corneal implant. Dr Aquevella had some concerns about Sarah's eye being strong enough to have the operation. So she was scheduled for a MRI on August 16th.
Selah's 8th birthday was on August 14, the day Sam and Sarah had the EUAs. We were at this hospital from 6 am till 4 pm. It was pouring rain that night so we stayed in and ate at the RMH...we really didn't celebrate her birthday, we planned to do so on August 15th.
The accident happened on Aug 15th.
We did get Sarah an MRI the next week but determined her eye is too fragile for the operation.
BTW, the other little girl Michelle who was at another mental institution has a family now also!
DAILY UPDATE:
Jon stayed throughout the day with Selah and I stayed with the other four. Today she has battled very very high blood pressures. One medicine was tried but it brought her heart rate up too high. She has been given a different one now and thankfully her body has responded to it perfectly! Please keep praying for her!
Jon felt like she responded to him today in a new way. Se was mimicking the noises she used to make for different things (she was non verbal) and she began moving her lips as if she were copying him. I took over at 7pm and felt like she was very far away. She is extremely stiff tonight, her limbs feel like a piece of wood. She has just been given some meds for that also. Their hope is that she will relax her limbs as it causes more damage to her range of motion. She seems very far away tonight and again I am just hanging on in faith. PLEASE pray for her!
Our family was blessed today by the Rochester Macy's! They invited us to come and shop with them! It was a fun but a bit overwhelming experience:) They gave us about $150 in free mechanise and then gave us crazy discounts on everything else we bought:) All the boys got a Nike jogging suit and jeans and a long sleeved shirt. Steve somehow got a 2nd Nike shirt and soft jogging pants (don't know how that happened LOL) Got Sarah a PJ set and a new outfit too. We had a wonderful manager with us helping me or I'd probably been so overwhelmed I would have left long before I did! She insited that I get something and Jon too and we actually both got several things. It was fun and we met some really sweet folks! Thanks to the manager Bill and his assistant Amanda!!!!!! You guys just blessed our family so much and in such a sweet warm way:) Steve and Shad can't wait to wear their new clothes! They are excited and hoping it will get cooler quick!!!! We are truly thankful for your kindness to our family!
Y'all know we're from the south....but we have met some wonderful folks up here in the north and have experienced "Northern Hospitality"! We are daily amazed by all the kindness we have been shown! We are blessed with this great hospital and staff who do all they can for Selah and truly seem to care even about little details! We are blessed with the Ronald McDonald House and staff and volunteers who truly care about our family as if we were part of their family! The community of Rochester has been kind to us in so many ways & has reached out to us~ During this trying time we have been surrounded by so much love! We have a college friend Charlene Wallenbeck who comes every day and stays with our other four kids so Jon & I can come up to the hospital together for some time! Our hearts are overflowing with thankfulness for all the kindness so many here have shown to us! The readers of my blog have been so uplifting in their responses, we have so many friends all over the world praying for Selah...calls, texts, emails, cards, packages, gift cards, food, checks...people reaching out in practical ways...it blows us away. It's been a great lesson for Steve and Shad to see how much it means to reach out to others when trying times come! They are so appreciative also. We can't help but weep at times from just the love we've recieved from so many...THANK YOU ALL!!!!
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