http://reecesrainbow.org/38066/sponsorbasas
Please check out this family on the above link!!!!!
This family went to Sarah and Selah's country to adopt this sweet little girl with Larsen's Syndrome. Since they got there, they've fallen in love with a little boy with CP.....They can also bring him home but need $4000 to do it.... Can't my readers make it happen? I have about 3000 readers a day on here, if everyone gave $1.33, we could make it happen!!!!!
Since we've been here, our debit card has been compromised and the bank had to close it out (thankfully we didn't lose any money) but I can't give electronically to this family but you can and you'll be blessed by doing it.... I'm not saying that you will get a ten thousand fold in return LOL BUT you will be giving a little boy a home!!!! That is priceless! Can you really wrap your head around what this means???? It means a little boy that this family met and feel in love with, can go home with them! They weren't planning on this happening....but it is...be a part of something so much bigger than yourselves!!!!!
The family's blog is on private right now as they are in country and that is what is recommended but believe me I know this family is praying for the finances to ransom one more child and to give that child a home!!!!!
Thank you!!!!
"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!
Wednesday, November 14, 2012
Day 10....fish oil study....what a day....
Jon went over this morning and I got a call from him and the resident. She felt that perhaps the rehab was not going to take Selah, that was a blow to my gut! She wanted to know if we were comfortable going straight home with her still on the trach....ummm NO! The logistics alone were overwhelming to think of. We talked some more and she said she'd call the rehab and get back to us.
My heart just sank, we feel she has come so far but we realize she has a long way to go. But to think that she would be denied going to a rehab at this point, just made my heart drop! I really had to "cast my cares on Him" This morning and early afternoon, were rough for me!!!!
Well I decided to call the rehab myself. (anyone surprised at that?? LOL) I spoke to the person reviewing our case and we were able to discuss Selah. Thankfully it looks like they will accept her as a patient. The rehab has also spoke to the doctor. There just was lack of communication.... We will probably be transferred the week after Thanksgiving. Selah will be flown down and we will drive down. My sister in law Valerie will be there to meet her and to stay with her until we can get there. All patients are accepted in for two weeks. If she is making progress and meeting goals, then they will keep her longer. If not we will go home because insurance will not let her stay. The first two weeks will be intensive for Selah and for us. We will be trained to take care of her in more practical ways. Hopefully she will meet her weekly goals and be able to stay there. Our number one goal for her is for her to come off the trach. That will be the best place for it to happen at. Certainly better than at home!
SO....please pray that everything will work out...LOTS of logistics to figure out....we have to find a place to stay in Jax....
But more than anything else....pray for Selah, pray that she begins to recover faster than expected. I'm tired today, I'm discouraged....I really don't even have the words to say.....We've seen some progress and it is great, still no storms! But she is far from the child she was on August 14th.... We have high hopes that the fish oil will work for her. She is not near the "magic time" when it is supposed to really start working. She will have blood work next week to see where the markers are at, when they are at a certain point, that is when the recovery seems to really happen and the earliest we can really expect is about one month.
Today both therapists were out and Jon worked with her. She sat up in her car seat for 1 1/2 hours and she was tracking with her eyes. A doctor from St Mary's (the rehab here) did come by and see her and she did remark that she could tell she was tracking and responding. Selah was also moving her left arm independently also. So she is doing some things....I just want her to walk out of here.....I know that is not realistic BUT that is what I want!!!!!
Our real true Hope is in God and today as He has throughout this whole time, He was there to comfort me and to ground my thoughts so they wouldn't go in a million directions. The future is scary and even harder than most families face in this kind of situation as we are so far from home and have the additional stress of that, but I trust that God will work out things in a way that we don't even understand nor can try to figure out on our own. He has proven Himself to be our provider over and over again and I know He will make a way for us. We of all people should not wonder or try to work out things in our minds, as we have seen God do so much for us in the past. I don't want to be like the children of Israel, seeing miracles, then turning around and doubting God the next day!
But I feel very down tonight. I know what most of the doctors expect in Selah's situation and it is not what we want.....they've never seen anyone recover to a normal degree from something like she has gone through and that weighs on me. They would LOVE to see her recover completely and I think they think there is some medical hope in the fish oil, to some degree but the reality is hard. They want to prepare us for a life with a severely disable child. Believe me if you really know me, I am about as realistic as they come, you won't find me "claiming something" but there is something inside of me that just says "NO" to the future they paint for Selah. I'm trying to discern if it is just me or if God is giving me this thought. Obviously no sane person wants to accept a future for their child that keeps her basically bed ridden! However with Sam, we were very accepting of his disablity and just rearranged our lives around it. Maybe that was because he was born with it and we never saw him any different than that. We certainly accepted Sarah and Selah just like there were also. I don't know but everything in me sees Selah back to "her normal" So I don't know the future, one day I'll look back on these words and know whether God was speaking to me or if I was just holding on to a false hope. But tonight I just want to curl up and escape everything......
Thank you for your prayers and support!
My heart just sank, we feel she has come so far but we realize she has a long way to go. But to think that she would be denied going to a rehab at this point, just made my heart drop! I really had to "cast my cares on Him" This morning and early afternoon, were rough for me!!!!
Well I decided to call the rehab myself. (anyone surprised at that?? LOL) I spoke to the person reviewing our case and we were able to discuss Selah. Thankfully it looks like they will accept her as a patient. The rehab has also spoke to the doctor. There just was lack of communication.... We will probably be transferred the week after Thanksgiving. Selah will be flown down and we will drive down. My sister in law Valerie will be there to meet her and to stay with her until we can get there. All patients are accepted in for two weeks. If she is making progress and meeting goals, then they will keep her longer. If not we will go home because insurance will not let her stay. The first two weeks will be intensive for Selah and for us. We will be trained to take care of her in more practical ways. Hopefully she will meet her weekly goals and be able to stay there. Our number one goal for her is for her to come off the trach. That will be the best place for it to happen at. Certainly better than at home!
SO....please pray that everything will work out...LOTS of logistics to figure out....we have to find a place to stay in Jax....
But more than anything else....pray for Selah, pray that she begins to recover faster than expected. I'm tired today, I'm discouraged....I really don't even have the words to say.....We've seen some progress and it is great, still no storms! But she is far from the child she was on August 14th.... We have high hopes that the fish oil will work for her. She is not near the "magic time" when it is supposed to really start working. She will have blood work next week to see where the markers are at, when they are at a certain point, that is when the recovery seems to really happen and the earliest we can really expect is about one month.
Today both therapists were out and Jon worked with her. She sat up in her car seat for 1 1/2 hours and she was tracking with her eyes. A doctor from St Mary's (the rehab here) did come by and see her and she did remark that she could tell she was tracking and responding. Selah was also moving her left arm independently also. So she is doing some things....I just want her to walk out of here.....I know that is not realistic BUT that is what I want!!!!!
Our real true Hope is in God and today as He has throughout this whole time, He was there to comfort me and to ground my thoughts so they wouldn't go in a million directions. The future is scary and even harder than most families face in this kind of situation as we are so far from home and have the additional stress of that, but I trust that God will work out things in a way that we don't even understand nor can try to figure out on our own. He has proven Himself to be our provider over and over again and I know He will make a way for us. We of all people should not wonder or try to work out things in our minds, as we have seen God do so much for us in the past. I don't want to be like the children of Israel, seeing miracles, then turning around and doubting God the next day!
But I feel very down tonight. I know what most of the doctors expect in Selah's situation and it is not what we want.....they've never seen anyone recover to a normal degree from something like she has gone through and that weighs on me. They would LOVE to see her recover completely and I think they think there is some medical hope in the fish oil, to some degree but the reality is hard. They want to prepare us for a life with a severely disable child. Believe me if you really know me, I am about as realistic as they come, you won't find me "claiming something" but there is something inside of me that just says "NO" to the future they paint for Selah. I'm trying to discern if it is just me or if God is giving me this thought. Obviously no sane person wants to accept a future for their child that keeps her basically bed ridden! However with Sam, we were very accepting of his disablity and just rearranged our lives around it. Maybe that was because he was born with it and we never saw him any different than that. We certainly accepted Sarah and Selah just like there were also. I don't know but everything in me sees Selah back to "her normal" So I don't know the future, one day I'll look back on these words and know whether God was speaking to me or if I was just holding on to a false hope. But tonight I just want to curl up and escape everything......
Thank you for your prayers and support!
Tuesday, November 13, 2012
Day 9 fish Oil study!
Another good day...
Today was Jon's day over at the hospital. I got a wonderful phone call from him and the therapist....during therapy Selah was able to hold her head up while sitting on the edge of the bed! She held her head up without any assistance for up to 45 seconds at a time. She had to rest in between times but did it several times:) We were all excited about it! The therapist was giving her some trunk support but she did the head support on her own!
Selah continues to swallow!! She also coughed some:) She deliberately with PURPOSE pushed away the Popsicle after awhile:)
However she was not able to have her trach opening covered in order for her to breath only through her mouth and nose. She got afraid when her trach was covered. Physically she did ok, but it scared her. The therapists are going to work on that with her as she has to do that in order to come off the trach altogether. Please pray that she will be able to work with her therapist on this! We want to see her off the trach!
So all in all good news...I just want it to happen fast! Please keep praying for her. She is improving daily but she still has a far way to go . Thank you for your prayers!
Today was Jon's day over at the hospital. I got a wonderful phone call from him and the therapist....during therapy Selah was able to hold her head up while sitting on the edge of the bed! She held her head up without any assistance for up to 45 seconds at a time. She had to rest in between times but did it several times:) We were all excited about it! The therapist was giving her some trunk support but she did the head support on her own!
Selah continues to swallow!! She also coughed some:) She deliberately with PURPOSE pushed away the Popsicle after awhile:)
However she was not able to have her trach opening covered in order for her to breath only through her mouth and nose. She got afraid when her trach was covered. Physically she did ok, but it scared her. The therapists are going to work on that with her as she has to do that in order to come off the trach altogether. Please pray that she will be able to work with her therapist on this! We want to see her off the trach!
So all in all good news...I just want it to happen fast! Please keep praying for her. She is improving daily but she still has a far way to go . Thank you for your prayers!
Monday, November 12, 2012
Day 8 fish Oil study
Great day!
One full week of NO storms! And one full week of fish oil~~
Today Selah did wonderful with OT and ST. She took water from a syringe and drank it, probably a whole 3ML. I know that is not huge but it is. She swallowed well and tolerated it. During ST she got tired of the Popsicle and she pushed it away 3x! We couldn't help but laugh about it. Her personality is shining through!
Later I was wiping her face with a washcloth and she started sucking on my finger! Honestly it scared me and I jumped:)
Monday is the day for the new attending doctors to come in. One came in that hadn't seen her since late September when Selah was turned down for the rehab hospital here. She was shocked at the change in her, the doctor said Selah had made "significant progress" she continued to say if Selah continues to make more "significant progress" she could start the process to come off the trach!!!!!!! It is not an overnight thing but a process of at least a month, if all goes well. They are very concerned about safety and do not want her to aspirate so we will see how things go. I LOVE the term "significant progress"
Just a little while ago Selah got her new trach. For lack of a better term, it is a step down trach. She is required to use her mouth and nose more to breath through, not just the throat opening. If she tolerates this and so far she has quite well as her oxygen stats are at 100%, the opening in the tube will be blocked altogether forcing her to breath only through her mouth and nose.
She will also have a covering over it called a "nose" she has one on now. The nose acts just like our filter in keeping the air clean that she breaths in Tomorrow her therapist will put on another nose that will enable her to make noise through it!!!! So tomorrow we will hear some yelling. If the new trach had gotten in earlier, the therapist would have done it today but we have that to look forward to for tomorrow!
For the record, Selah smells like the beach, quite fishy:) It has permeated her clothes but to me it is the smell of progress:) At least that is how I am choosing to look at it ! LOLOL!
Thursday we are having a team meeting to look at where we are and where we are going....one thing I learned today is that if Selah is sent to Brooks in Jacksonville Fl, our family is too large to stay at the RMH there. Not every Ronald McDonald House is as flexible as the Rochester NY RMH. We don't split up our family and it wouldn't work anyhow. So if you have any contacts in the Jacksonville Fl area please check them out for me. Please don't send me suggestions for me to check out, I wouldn't contact someone if I dont' have a link with them personally. I am thinking maybe a church might have a "missions house" or something along those lines. We wouldn't be interested in living with anyone, that would be a little too stressful! But if you have contacts, tell them about our family and we will see what happens
Our hope is that Selah will work herself off the trach and be ready to go straight home from here. If that did happen, we would drive home with her:) She would have therapy at home, it is already set up and we would not need as much nursing care.
As always we are just staying flexible, not sure what is going to happen.....
Thank you for your prayers for Selah, please continue to ask the Father to touch and heal her!!!!
One full week of NO storms! And one full week of fish oil~~
Today Selah did wonderful with OT and ST. She took water from a syringe and drank it, probably a whole 3ML. I know that is not huge but it is. She swallowed well and tolerated it. During ST she got tired of the Popsicle and she pushed it away 3x! We couldn't help but laugh about it. Her personality is shining through!
Later I was wiping her face with a washcloth and she started sucking on my finger! Honestly it scared me and I jumped:)
Monday is the day for the new attending doctors to come in. One came in that hadn't seen her since late September when Selah was turned down for the rehab hospital here. She was shocked at the change in her, the doctor said Selah had made "significant progress" she continued to say if Selah continues to make more "significant progress" she could start the process to come off the trach!!!!!!! It is not an overnight thing but a process of at least a month, if all goes well. They are very concerned about safety and do not want her to aspirate so we will see how things go. I LOVE the term "significant progress"
Just a little while ago Selah got her new trach. For lack of a better term, it is a step down trach. She is required to use her mouth and nose more to breath through, not just the throat opening. If she tolerates this and so far she has quite well as her oxygen stats are at 100%, the opening in the tube will be blocked altogether forcing her to breath only through her mouth and nose.
She will also have a covering over it called a "nose" she has one on now. The nose acts just like our filter in keeping the air clean that she breaths in Tomorrow her therapist will put on another nose that will enable her to make noise through it!!!! So tomorrow we will hear some yelling. If the new trach had gotten in earlier, the therapist would have done it today but we have that to look forward to for tomorrow!
For the record, Selah smells like the beach, quite fishy:) It has permeated her clothes but to me it is the smell of progress:) At least that is how I am choosing to look at it ! LOLOL!
Thursday we are having a team meeting to look at where we are and where we are going....one thing I learned today is that if Selah is sent to Brooks in Jacksonville Fl, our family is too large to stay at the RMH there. Not every Ronald McDonald House is as flexible as the Rochester NY RMH. We don't split up our family and it wouldn't work anyhow. So if you have any contacts in the Jacksonville Fl area please check them out for me. Please don't send me suggestions for me to check out, I wouldn't contact someone if I dont' have a link with them personally. I am thinking maybe a church might have a "missions house" or something along those lines. We wouldn't be interested in living with anyone, that would be a little too stressful! But if you have contacts, tell them about our family and we will see what happens
Our hope is that Selah will work herself off the trach and be ready to go straight home from here. If that did happen, we would drive home with her:) She would have therapy at home, it is already set up and we would not need as much nursing care.
As always we are just staying flexible, not sure what is going to happen.....
Thank you for your prayers for Selah, please continue to ask the Father to touch and heal her!!!!
Fatih & Suffering
"Untried faith may be true faith, but it is sure to be little faith, and it is likely to remain stunted as long as it is without trials. Faith never prospers as well as when all things are against her. ...let the howling winds rush forth, and let the waves lift up themselves, Though the vessel may rock, her deck may be washed with waves, and her mast may creak under the pressure of the full and swelling sail, it is then that she makes headway toward her desired haven. Tried faith brings experience. You could not have believed your own weakness had you not been compelled to pass through the rivers; and you would never have known God's strength had you not been supported amid the flooding waters. Faith is precious, and its trial is precious, too." ~Charles Spurgeon
In today's world we so often hear of FAITH...but is it a true faith that will carry a person through life's storms or is it faith just to get what we want from God?
What is faith? Is it just wanting something? There are alot of things I WANT...most of them good things. I want our church to grow, I want Selah healed, I want to help get more orphans home, I'd like a bigger house and big van and lots of money so we could hire nurses and adopt more kids....I want to be able to give more to others.....I even want to buy a new bed....BUT my faith is not me "believing God" for these things, even for the good spiritual things. Faith is so much more....
My faith is God has grown so much in the past year. I can look back over my life and see events when I trusted God and stepped out of the boat. When I left home to go to Bible College, all alone with no money, that was FAITH! Looking back to that time builds my faith. I knew I had heard from God and I did what He told me to do regardless of the naysayers all around me. My faith grew...
When we stepped out of the boat and adopted Shad....wow....we knew we had heard from God and we did what He said despite the naysayers all around us (btw those naysayers have shut their mouths~they all want a Shad now LOL) Our FAITH grew....
When Jon became the pastor of Grace Church and stepped into that role, we realized that was where God wanted us to be, that took Faith! As we faced struggles and triumphs in the church, our Faith has grown...
We when heard the little whisper "go get that little girl" and we stepped out by Faith, oh how our faith has grown. That little girl, soon became two little girls that needed us and that we needed to make our family complete. Oh our faith grew as we knew that only God could make that adoption happen...and He did....
Now this accident...it's been like strength training for our faith....we have gone deeper, dismissed the fluff in our lives and held on to God, not knowing what the outcome would be....we still don't know the outcome, we have more hope than ever before but we still don't know what is ahead for us and Selah, but we know Who will be with us. Oh but our faith has grown....
So for me FAITH is not so much what God can do for me....it's what I do for Him. JFK said in his inaugural address the famous line "Ask not what your country can do for you , but rather ask what you can do for your country" In a spiritual sense most Christians ask what can God do for me rather than what can I do for God. They think God owes them the perfect middle class American life without any suffering at all. But as we have walked down the pathways He has shown us, we have learn to trust. We have learned by our faith being tested. And it has been sweet.....NOW I can testify to you that without shinigins or craziness that God will be with you no matter what. I will not tell you things will go the way you want them to go but that you can have peace. I will not tell you to claim promises, speak Life, rebuke the devil, demand healing, or any of those things that the pentecostal/charismatic movement will often tell you to do in a hard situation...but I will tell you to throw yourself on the mercy of God, to bow your heart to Him, even when your heart is breaking. I will tell you to trust the ONE who holds this crazy messed up world in the palm of His hand. I will tell you that eternity is forever and these present sufferings will be as nothing on THAT day....I will tell you that life will test your faith and that God will allow that, because that is how we grow.
"For I reckon the sufferings of this present time are not worthy to be compared with the glory which shall be revealed in us" Romans 8:18 (Look Paul was southern ~ He RECKONED LOL
Romans 5:3-5
Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, 4 and endurance produces character, and character produces hope, 5 and hope does not put us to shame, because God's love has been poured into our hearts through the Holy Spirit who has been given to us
.
1Peter 4:12
Beloved, do not be surprised at the fiery trial when it comes upon you to test you, as though something strange were happening to you. 13 But rejoice insofar as you share Christ's sufferings, that you may also rejoice and be glad when his glory is revealed.
These scriptures thrill my heart! They give me peace and a hope! But you won't find them in the cute little "Promise Books" or "God's Promise Books" No one wants to hear about suffering...but it is there and it will come to you. How will you react when it comes?
Let me tell you a story...I've been walking for years, often miles a day. So a couple of summers ago we were given a week in a cabin in North Carolina. Oh did we have fun! We walked up and down mountains and hills and I thought I would die! WHY? Because even tho I was walking miles a day, I was walking on a flat Florida walking path....it wasn't the same as walking up hills and down.... Once I got home. I started walking a path that had built in hills so I would be better conditioned to handle hills!
So compare that to our faith....faith that is never tested, is a weak faith that tires out easily. But when we face adversities we can grow! We can get stronger in our faith. We are all on a one way ticket on planet earth, we don't know when our ticket expires or when we will either. So I encourage you to use your faith, not for foolishness or personal gain but for trusting in God and doing what He asks of you! Let your faith grow so that on the day your ticket expires, you will have that strong faith to trust Him to walk with you through the valley of the shadow of death.
In today's world we so often hear of FAITH...but is it a true faith that will carry a person through life's storms or is it faith just to get what we want from God?
What is faith? Is it just wanting something? There are alot of things I WANT...most of them good things. I want our church to grow, I want Selah healed, I want to help get more orphans home, I'd like a bigger house and big van and lots of money so we could hire nurses and adopt more kids....I want to be able to give more to others.....I even want to buy a new bed....BUT my faith is not me "believing God" for these things, even for the good spiritual things. Faith is so much more....
My faith is God has grown so much in the past year. I can look back over my life and see events when I trusted God and stepped out of the boat. When I left home to go to Bible College, all alone with no money, that was FAITH! Looking back to that time builds my faith. I knew I had heard from God and I did what He told me to do regardless of the naysayers all around me. My faith grew...
When we stepped out of the boat and adopted Shad....wow....we knew we had heard from God and we did what He said despite the naysayers all around us (btw those naysayers have shut their mouths~they all want a Shad now LOL) Our FAITH grew....
When Jon became the pastor of Grace Church and stepped into that role, we realized that was where God wanted us to be, that took Faith! As we faced struggles and triumphs in the church, our Faith has grown...
We when heard the little whisper "go get that little girl" and we stepped out by Faith, oh how our faith has grown. That little girl, soon became two little girls that needed us and that we needed to make our family complete. Oh our faith grew as we knew that only God could make that adoption happen...and He did....
Now this accident...it's been like strength training for our faith....we have gone deeper, dismissed the fluff in our lives and held on to God, not knowing what the outcome would be....we still don't know the outcome, we have more hope than ever before but we still don't know what is ahead for us and Selah, but we know Who will be with us. Oh but our faith has grown....
So for me FAITH is not so much what God can do for me....it's what I do for Him. JFK said in his inaugural address the famous line "Ask not what your country can do for you , but rather ask what you can do for your country" In a spiritual sense most Christians ask what can God do for me rather than what can I do for God. They think God owes them the perfect middle class American life without any suffering at all. But as we have walked down the pathways He has shown us, we have learn to trust. We have learned by our faith being tested. And it has been sweet.....NOW I can testify to you that without shinigins or craziness that God will be with you no matter what. I will not tell you things will go the way you want them to go but that you can have peace. I will not tell you to claim promises, speak Life, rebuke the devil, demand healing, or any of those things that the pentecostal/charismatic movement will often tell you to do in a hard situation...but I will tell you to throw yourself on the mercy of God, to bow your heart to Him, even when your heart is breaking. I will tell you to trust the ONE who holds this crazy messed up world in the palm of His hand. I will tell you that eternity is forever and these present sufferings will be as nothing on THAT day....I will tell you that life will test your faith and that God will allow that, because that is how we grow.
"For I reckon the sufferings of this present time are not worthy to be compared with the glory which shall be revealed in us" Romans 8:18 (Look Paul was southern ~ He RECKONED LOL
Romans 5:3-5
Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, 4 and endurance produces character, and character produces hope, 5 and hope does not put us to shame, because God's love has been poured into our hearts through the Holy Spirit who has been given to us
.
1Peter 4:12
Beloved, do not be surprised at the fiery trial when it comes upon you to test you, as though something strange were happening to you. 13 But rejoice insofar as you share Christ's sufferings, that you may also rejoice and be glad when his glory is revealed.
These scriptures thrill my heart! They give me peace and a hope! But you won't find them in the cute little "Promise Books" or "God's Promise Books" No one wants to hear about suffering...but it is there and it will come to you. How will you react when it comes?
Let me tell you a story...I've been walking for years, often miles a day. So a couple of summers ago we were given a week in a cabin in North Carolina. Oh did we have fun! We walked up and down mountains and hills and I thought I would die! WHY? Because even tho I was walking miles a day, I was walking on a flat Florida walking path....it wasn't the same as walking up hills and down.... Once I got home. I started walking a path that had built in hills so I would be better conditioned to handle hills!
So compare that to our faith....faith that is never tested, is a weak faith that tires out easily. But when we face adversities we can grow! We can get stronger in our faith. We are all on a one way ticket on planet earth, we don't know when our ticket expires or when we will either. So I encourage you to use your faith, not for foolishness or personal gain but for trusting in God and doing what He asks of you! Let your faith grow so that on the day your ticket expires, you will have that strong faith to trust Him to walk with you through the valley of the shadow of death.
Sunday, November 11, 2012
Day 7 Fish Oil study
Still NO storming!!!!!!! If she makes it till tomorrow it will make a week! That is amazing! Storming had become such a part of our life and her response to things that I can not believe it seems to be gone. Storming is the body's reaction to brain damage. It is not a seizure but is is still awful to have to see. With Selah she basically would stiffen, her limbs would become rock hard and her arms would stick out and vibrate....her heart rate and blood pressure would increase to scary levels...and so would mine! What a relief to not have that anymore.
Jon was with her all afternoon and had her sitting up in her chair. She was much more relaxed today in her limbs. He said she stuck her tongue out at a nurse when she walked in. I doesn't seem like she is doing it on purpose but we think she is just trying to make a noise and that is how it happens. She hasn't done anything new but tomorrow is going to be a big day for her! We are planning on getting over early, we are pretty sure she will make noises as soon as the trach is changed out as she tries to now.
Please pray that all goes well with the changing of her trach and that she will handle this new one with no problems.
I read a great book today...Kisses from Kate http://kissesfromkatie.blogspot.com/ what a story!! It really spoke to me about giving my all..... We have so much and the rest of the world has so little.....the thoughts I have are for another blog. One that probably won't get alot of comments on...it's funny to me how that is....I'm mulling it all around in my brain but her book just rocked my world.
Jon was with her all afternoon and had her sitting up in her chair. She was much more relaxed today in her limbs. He said she stuck her tongue out at a nurse when she walked in. I doesn't seem like she is doing it on purpose but we think she is just trying to make a noise and that is how it happens. She hasn't done anything new but tomorrow is going to be a big day for her! We are planning on getting over early, we are pretty sure she will make noises as soon as the trach is changed out as she tries to now.
Please pray that all goes well with the changing of her trach and that she will handle this new one with no problems.
I read a great book today...Kisses from Kate http://kissesfromkatie.blogspot.com/ what a story!! It really spoke to me about giving my all..... We have so much and the rest of the world has so little.....the thoughts I have are for another blog. One that probably won't get alot of comments on...it's funny to me how that is....I'm mulling it all around in my brain but her book just rocked my world.
Saturday, November 10, 2012
Day 6 Fish OIl Study
Today we took the kids over to see Selah.
I wish I had alot of stuff to tell you tonight but she is the same, no new things happening. She still hasn't really stormed at all since the fish oil study started and we are thankful of that. She did so many new things on Thursday and Thursday night that I think she is having to process it in her mind. She was quieter yesterday and today. She hasn't regressed any except she seemed tighter in her arms today but I think she was stressed having so many people in the room and being up in her chair for so long (about 1 hour up in chair and 1/2 hour in my lap) Her heart rate never went over 125 and then only for 30 seconds or less. One thing that was new she had her "crying face" on when we were leaving. I don't really think she understood we were leaving but maybe she did, although I think she was about ready for us to go!
Update: just called the nurse and she is more relaxed and the tightness in her arms are looser and more back to her "normal" I think she had too much sibling love today!
If you have read the articles I posted about the fish oil study you might somewhat understand how it is supposed to work. The Fish Oil brings down inflammation and allows the brain to regenerate. Plus fish oil has the building blocks of brain development DHA in it. There is alot more than that but that is in its' simplest form.
To get ready for the Fish Oil study Selah had blood work to determine the level of inflammation in her body and the level of a few different acids. She also had a MRI.
With the other patients, changes occurred when the level of inflammation went down to a certain level and the "something" (can't remember what it is) went up.....that usually happens about the one month mark. BUT we have seen some things already and the BIGGIE is NO storming!!!!!!! That is HUGE!!!!! So I have to remember that on nights like this when I feel discouraged. I just do NOT think it is a coincidence that she had a bad storm Monday morning and thens started the fish oil at 6 pm Monday night and hasn't had one since then! That is huge!!!
But I will be honest, I feel discouraged tonight. This has been a crazy year for us altogether and the past 13 weeks (we left home 13 weeks today to come up here) is catching up with me. In several ways we are NOT in a hurry to leave here because of the excellent medical care Selah has gotten but it would be so nice to know when we were leaving. Even if we weren't going to leave until January, if we just knew for sure it would be so much easier to plan things. It's hard to make decisions about things like school ( do we order more books or do we hold off???) or anything even the holidays. Do we plan on being here, which is fine, or will we be home or will we be in Jax at the rehab? I just want to know!!!!! When we left for Ukraine in March, we left on a ONE WAY ticket! That was a bit unnerving but we had no choice, it's a weird feeling to not have a return date....and here we are once again on a ONE WAY ticket.....we truly feel like sojourns:) I think if we had our way completely we would rather stay here until she could come off the trach and then just take her straight home. I don't know that is going to happen but....that is what we would like to have happen. And we truly want to see a good snow storm!!!!! I will be so mad if after all this time we leave and there has been no real snow!!!!!!
So please pray for Selah, pray that this fish oil study works for her like it has for the other six people. Pray that she recovers and that we see some more results soon. Pray that she can handle the new trach on Monday and she can easily make the transition from breathing out of the tube in her throat to breathing from her mouth and nose again. You have NO idea how much easier it would be for her to be off the trach! You have NO idea how much I hate the trach. I have met my Achilles Heel! I can not deal with it without having black dots in front of my eyes! I feel breathless even talking in depth about it. That is somewhat embarrassing to me, after having survived many medical things with Sam but I kid you not I can not do the trach! So is she is off it, it makes life easier for her and us!
I haven't said this for awhile....but I want my sweet little life back.....I want my baby girl back and our simple life, living in a small parsonage, working in the garden, taking the big boys to school, and the little ones to therapy.....couponing, cooking for my family, eating dinner together, JUST US! not another 20 families.....MY OWN BED!!!! I want to be able to tuck everyone into their beds at night and go to sleep under one roof. I want to see our friends and family. I want the sweet life I had for 3 months with my 3 boys and 2 new little girls back.....that is all I want....it was the best three months of my entire life and I want it back!
I don't mean to sound ungrateful or unappreciative about anything, we have made things work for our family since this has happened. We've stayed together and no matter what, after the first few days, we eat together as a family every evening. We've made new traditions for our family since we've been here and have stayed close & involved. But I want to just get our little girl, pack the car and go home together and everything be back to normal.....
I'm not stupid, I know even if the fish oil works perfectly she is going to have to have lots of therapy because her muscles have atrophied since being in bed for 3 months. There is a long road ahead regardless....
So please continue to pray that God will touch her and allow this fish oil to work in an unbelievable way....Pray that it works for her and that many others will hear about this and that this will change the protocol for drowning accidents. There is nothing that is done for drowning patients except maintain the body. There is no drug to give nor surgery to do...nothing....if this works for Selah, it could be a huge thing for drowning patients world wide!
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