Selah has had 3 dosages of fish oil now! She hasn't had any negative reactions. Today was Jon's day over there and I did 7 loads of laundry here :) I kept calling Jon to see what was going on and he was laughing and told me that she hadn't climbed out of bed yet...I can't help it I am expecting some good stuff:)
She did great with therapy. The therapist touched her tongue with ice and she did something new. She stuck her tongue out of her mouth and licked it a few times. She has licked the lemon flavored swabs before but more when they were in her mouth or on her lips, this was more deliberate! The student nurse was amazed at how she was responding and showing emotions ( negative ones) when the therapist was working with her. Selah seems to understand the we understand her grimaces and are meeting her needs and for the most part she is getting upset without her heart rate and blood pressure going so high. She has only had a very few storms lately.
She had a sonogram today on her leg. She had gotten a terrible blood clot in her left leg right after the accident. She has been taking shots of blood thinners in her stomach since. We should get the results tomorrow. We are anticipating that it will be gone, as her leg looks normal.
Tonight we are sitting and watching the election results come in, it's unbelievable that we are still here in NY. If you would have told me, the day we left home, that I would have had to call for an absentee voting form and vote by mail in this election, I would have never believed it! It will be interesting....
Thank you all for praying for Selah! We are expecting good results!
"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!
Tuesday, November 6, 2012
Monday, November 5, 2012
Fish Oil has started!!!!!!
Here is the picture of Selah getting her first dose of fish oil just a few minutes ago! Yes that is a big syringe and yet it is only a half dose! She will have a dose in the morning and in the late afternoon every day. On Thursday, she will start the full doses, that will be two syringes at a time! I'm very thankful for a gtube! I can not imagine getting a child to take that much fish oil by mouth! They have found it is better for a person's system to take lower dosages first, just to make sure it's not too much an overload for their system!
She has had a great day today. She did OT and Speech today. They worked with her on the therapy ball. She was very alert through the day and watched her DVDs. Jon changed her trach and she handled it well.
So.....we wait and pray that this will be the medical answer for her and hopefully it will mean a change to how near drownings are treated! Maybe this will change Selah's situation and many others also! Please pray for Selah!!!
We are thankful for the God given wisdom that led a doctor (Dr Barry Sears) to try this to help people. We are thankful for the doctors and staff at Strong's Hospital who help facilitate this study so quickly, especially Dr Asselin
So tonight I sit by my daughter's bed, another night, with hope in my heart! There have been many nights I've sit here and hung on to God as my heart was breaking.... I'm so thankful that God was with me through all those days and nights.....and He is still with us, no matter what happens in this study!
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My FB post
Just keep thinking that SIX months ago today, we walked out of the orphange with the girls. Obviously I did not have any idea of what was ahead for us! I didn't know that 6 months later we'd be In NY and Selah would be in a coma after a drowning...nor that she'd be getting a new treatment to see if it would help her...I had no idea what was ahead for us but God knew and He prepared us and has walked with us....
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*I have to say THANK YOU to one of my sweet readers who sent me for a massage today! I can actually move my neck, almost normally in one direction! It was wonderful!!!!!! Thank you Jennifer:)
Sunday, November 4, 2012
No Greater Joy Mom: if not us, then who? Please Read this!!!!!!!
No Greater Joy Mom: if not us, then who?:
Please read the above blog through! It is by a mom that has a homeful of adopted special needs kids and she calls her blog "No Greater Joy Mom" It is a graphic reminder that WE are the ones responsible for the world's orphans. It is NOT a calling that just happened to me & Jon. If you are a Christian, YOU have been commanded by God to take care of orphans! It's a directive throughout the bible if you don't believe me go back to this blog I wrote while I was in Ukraine. http://myreallifebyyvonne.blogspot.com/2012/05/orphan-exodus-2222-24-you-shall-not.html
Now you can tell me how you are not called to take care of orphans.....I'm not saying everyone can adopt but everyone can do something!!!!! You can give towards an adoption or you can sponsor a waiting child through an organization like Life 2 Orphans, a ministry that in all likelihood, saved Sarah's life!!!!!! http://www.life2orphans.org/cms/
I think we so often forget how much Jesus spoke about meeting physical needs. Yes there is a place for preaching the gospel but sometimes you preach by what you do or don't do Remember one day we will ALL stand before God for the the things we have done and not done on this earth. I'm not preaching "hellfire & brimstone" I am just reminding you of the future. Maybe all those statements of Jesus when he is telling us to feed the hungry, take care of the poor, visit the prisoner.....might mean something on that day. He wasn't telling that to a select few that were "called" to do things, He was sharing it with all of us!
I will confess I get ANGRY at the few responses I get when I talk about orphan care whether it is on my blog or on FB. It is gratifying that so many people read our story but do you do anything with what you are reading? Does it change you? Encourage you to do more or is our story just an interesting thing you read??
People ask me HOW can I go through what all we have gone through over the years and one reasons I can go through it without getting bitter is I have seen REAL need and REAL tragedy that is so much worse than the things I have gone through despite the losses and the sadness. When you are privileged to walk into orphanages and look in the face of the children, it puts life into perspective! Even our hardest times, have had a soft edge to them. For example, what I mean is, even when Sam was born premature and blind, that was hard, YES! BUT I was in a hospital, I had doctors to take care of him, I had medicine....it's not like that everywhere. So when someone has a tragedy in the USA, it's sad but we are still so blessed compared to what most of the world lives like!! No longer is not having much money for Christmas, or not having the nicest car or the best clothes....none of that matters anymore. Things seem so shallow and to be honest, many people seem very shallow, after that experience. Sometimes I see things written on FB, not in a funny way, but a whinny way about how bad someones life is and I just think "REALLY? You want to change places with an orphan in Eastern Europe or Africa or Asia???" I could show you a hard life.....so shut the heck up!!!!!
Today I'm tired of "nice Christianity" just completely done with the latest blessing or revival or new "word from God" I don't care about your goosebumps or your latest new song...show me your faith by your works.... Read the book of James!
Thank you Adeye for writing such an eye opening blog. You said things much better than I could have.
Please read the above blog through! It is by a mom that has a homeful of adopted special needs kids and she calls her blog "No Greater Joy Mom" It is a graphic reminder that WE are the ones responsible for the world's orphans. It is NOT a calling that just happened to me & Jon. If you are a Christian, YOU have been commanded by God to take care of orphans! It's a directive throughout the bible if you don't believe me go back to this blog I wrote while I was in Ukraine. http://myreallifebyyvonne.blogspot.com/2012/05/orphan-exodus-2222-24-you-shall-not.html
Now you can tell me how you are not called to take care of orphans.....I'm not saying everyone can adopt but everyone can do something!!!!! You can give towards an adoption or you can sponsor a waiting child through an organization like Life 2 Orphans, a ministry that in all likelihood, saved Sarah's life!!!!!! http://www.life2orphans.org/cms/
I think we so often forget how much Jesus spoke about meeting physical needs. Yes there is a place for preaching the gospel but sometimes you preach by what you do or don't do Remember one day we will ALL stand before God for the the things we have done and not done on this earth. I'm not preaching "hellfire & brimstone" I am just reminding you of the future. Maybe all those statements of Jesus when he is telling us to feed the hungry, take care of the poor, visit the prisoner.....might mean something on that day. He wasn't telling that to a select few that were "called" to do things, He was sharing it with all of us!
I will confess I get ANGRY at the few responses I get when I talk about orphan care whether it is on my blog or on FB. It is gratifying that so many people read our story but do you do anything with what you are reading? Does it change you? Encourage you to do more or is our story just an interesting thing you read??
People ask me HOW can I go through what all we have gone through over the years and one reasons I can go through it without getting bitter is I have seen REAL need and REAL tragedy that is so much worse than the things I have gone through despite the losses and the sadness. When you are privileged to walk into orphanages and look in the face of the children, it puts life into perspective! Even our hardest times, have had a soft edge to them. For example, what I mean is, even when Sam was born premature and blind, that was hard, YES! BUT I was in a hospital, I had doctors to take care of him, I had medicine....it's not like that everywhere. So when someone has a tragedy in the USA, it's sad but we are still so blessed compared to what most of the world lives like!! No longer is not having much money for Christmas, or not having the nicest car or the best clothes....none of that matters anymore. Things seem so shallow and to be honest, many people seem very shallow, after that experience. Sometimes I see things written on FB, not in a funny way, but a whinny way about how bad someones life is and I just think "REALLY? You want to change places with an orphan in Eastern Europe or Africa or Asia???" I could show you a hard life.....so shut the heck up!!!!!
Today I'm tired of "nice Christianity" just completely done with the latest blessing or revival or new "word from God" I don't care about your goosebumps or your latest new song...show me your faith by your works.... Read the book of James!
Thank you Adeye for writing such an eye opening blog. You said things much better than I could have.
Saturday, November 3, 2012
Orphan Sunday.....New Clanton video!
(thank you Kandi Bailey!!!!!!!)
Tomorrow is Orphan Sunday....Wish we were home so our church could celebrate it with us. Last year was very emotional for us as we had just seen Sarah...and couldn't forget her.
I'll tell you the background...
Last October a friend posted a lady's blog on FB. http://theblessingofverity.com/
The family was finishing adopting her 9 year old TWELVE pound, daughter from an Eastern European country. Katie has Downs Syndrome and had been mistreated. In the blog she mentioned a ministry called Reese's Rainbow http://reecesrainbow.org/. I decided to go and look at it....so I got on the site and typed in Blind kids....Guess whose picture came up? Ms Sarah...but she was bald and looked so much like Sam I actually thought she was a boy. I read over it quickly and noticed that the child was in a mental institution. Here you can see the picture of her that we first saw. http://reecesrainbow.org/28647/sponsorclanton Her picture upset me so much that I literally turned off the computer and tried to go to bed. I tried to forget but I couldn't sleep. I tossed and turned and prayed for the "little boy" I kept thinking "what if that were Sam???" A few days went by and, Orphan Sunday was coming up. It usually the first Sunday in November, it was November 7th. So I thought it would be a "nice thing" to take up an offering for Sarah (who was called Genesis) so our church did do that.....I got up and spoke about orphans and how sad things were for Shad and how bad things were for this child.
So by the end of that day I had decided that our church should raise the money for her to get a family. All $20,000! LOL So we committed to raising money and that lasted for a full 3 days...then Jon & I talked about it and decided we did not want to anyone else to adopt her!!! We wanted her!!!!!!!
So we were off....RUNNING....God working miracles....God providing every penny we needed....and a new van....and surprise another sweet daughter Selah.....and 7 months from tomorrow (Sunday-Orphan Sunday) we met our girls for the first time!!!!!! Monday will be 6 months since we walked out the doors of the orphanage with our precious girls......
Jon holding Sarah and me following with Selah. The first time Selah had been outside in almost 4 years.....
And this picture of me and Shad meeting for the first time on 1/9/06.... minutes before he left the Chengdu orphanage forever......with me! What an honor it has been to be with my kids as we left of the orphanages together~ what a privilege to be given these precious children to have as our own! None of my children were "true orphans" meaning their parents didn't die...their parents didn't want to raise them. Shad was left on a street,wrapped up in a blanket...WHY? Because somehow as a 6 month old child he had had some type of accident that damaged one eye. So his parents who probably rejoiced that they had had a boy just months before, decided now that he was "damaged" and they left him...alone....
Sarah was rejected by her parents at birth. Her parents saw her and refused to touch her. They were older, late 30's, already had a child and decided they didn't want to even look at this sweet little girl who was born with just one eye.....they left her.... alone...
Selah was taken home by her parents, who then proceeded to malnourish and mistreat her. She, along with her siblings were taken away from them. She had 4 other sibling, 3 adopted by Ukrainians and one sister who is still in a "boarding school" another name for an orphanage. Selah went to a hospital of some type for 6 months! Then she was transferred to several different shelters before briefly going to a baby house and then to the adult mental institution...she was all... alone....
So my three had 6 adults fail them....the system failed them....the world failed them but God never forgot them! And now they are NOT alone!!!!
Since we humans are not robots, God couldn't just MAKE us each one go and get an orphan or abandoned child....but if you stay with your heart open to God......you might just end up doing something "crazy" like that!!!
With all three, it just took a picture to fall in love.....and it was no different than if somehow Steve or Sam had ended up alone in another country. I felt such an urgency, to get these kids home!!!
With Shad if you don't know his story, we got a newsletter from a great adoption agency All God's Children http://www.allgodschildren.org/ and I saw his picture. We had given to them in the past and every now and then we got a newsletter. It was like a light shone on it. But we were in NO place to adopt back in "05, Sam was little and sickly, I wasn't working....a million reasons why we should NOT adopt....but not to God! So I called AGC and told them that I had a son who was blind and gave my number to whoever might start the process to adopt him. We had just did all kinds of research on eye hospitals all over the country and i wanted to help that family. Well 6 weeks later I got a call from the social worker who I had spoke to. She told me no one but me had inquired about him and his file was schedule to go back to China if someone didn't commit.....couldn't we commit to him???? I said "NO" I told her ALL the reasons why we could not and then she said "I really think this is God" I thought she had lost her ever living mind......but I told her I'd talk to my husband. So we did and we decided to do the little bit of paperwork to "commit and hold his file" so the file wouldn't go back to China with the understanding that others could still look at his file... We barely had the money to put the $195 down for him! Well after we did that, then the SW kept sending me paperwork and we kept doing it...and all of a sudden we were in the middle of adopting him! LOLOLOL 9 months and 6 days later I was picking him up in Chengdu China!!!!!!! What a story!!!!!!
So that is our story of how we became the Clanton7.....
I encourage you to do something for orphans!
This family is adopting 2 children with very Special Needs from my girls' orphanage. Also is you see the "Waiting children" there, Patricia and Peter...those are two of the other children we'd like to adopt...especially Patricia, we even asked about her when we were there in Ukraine, hoping that we could add her but couldn't get the paperwork straight, there were questions and then by the time we knew where she was at as far as availability, we had already gone to court.... GIVE to this family's adoption or help place a donation on one of these waiting children......GIVE and PRAY!!! The little boy lying on his tummy is one of the children they are adopting....see that room? That is how our girls' room looked like, they were down the hall from him.....Or you could give to this family that just committed to Victoria, Victoria was in Sarah's room and spent alot of time with us. As I was dressing Sarah to leave the orphanage, Victoria sat on her bed, she was across from Sarah and she just cried and cried. She is crippled in her legs, that's it...and she totally got the fact that Sarah was leaving with her new mom and dad and she wanted a family too! I could hardly look at her, I felt so awful!!!! Now someone is coming for her! And guess what? They have an older daughter who has the same physical problem!! Could you give to them so Victoria will be the one leaving the mental instituion soon?
http://reecesrainbow.org/1725/victoria110
So if you want to do something for us, do this!!! And just let me know you did it in honor of our family! I'd love to hear that the children get fully funded by folks who read my blog! We'd be honored!!!!!!!!
SELAH update: she is doing good. We took the kids over today and they got to spend a few hours with Selah. She was alert and it made the kids happy to see her so alert:) We are just waiting for Monday, looking forward to the fish oil and all her therapies....can't wait to see what all will happen in the next few days!
Friday, November 2, 2012
Don't take the easy way out.....
Selah coughed out a GOOBER today on the therapist! WOOHOO! Even our sweet therapist was happy about it! She actually coughed 2x! This is the first real cough she has done.
She had a BUSY good day today. Unfortunately the Fish Oil did not get delivered today but should be here Monday thank you Hurricane Sandy....We were all geared up for it but Monday will be the big day!
So Selah did great with OT today, after coughing up a goober:) This is HUGE (how many times have I said that?) She did cough little tiny coughs a few times in the PICU but hadn't done it again but this was a big good cough and she followed it up by doing it again!
She saw Speech today 2x and she did some good responses. The ST ordered a different type of trach, for Selah. She will be getting a speaking trach and she will have to learn how to do it. She will have ot learn to breath through her mouth. That is a step forward to going to not having one at all.
A person who works with brain injured people actually did a coma evaluation of her today. She was at Level 1 in the begining and now is at level 3. Full recovery would be Level 8 however since Selah did not talk before this, she probably wouldn't go but to Level 5 to be considered out of the coma. She is really working and changing almost daily.
Jon is taking Selah out in her stroller this afternoon. She stays busy all day:) It is just wonderful to see the great changes taking place with her.
I just have to point out something....when this happened in the beginning, we had to make a choice whether to put Selah on a feeding tube and a trach. It was not a hard decision for us....I KNOW some people probably thought we shouldn't have done that, but we respect LIFE. We made a promise to the judge in Ukraine, as well as to the orphanage director that we would give her the BEST we could give her.....and just because this happened, it didnt' change anything! We could have let her die, back in August...but we were committed to her and knowing that one day we will stand before the God of this Universe, we chose LIFE! Even tho' we knew it was the right moral/ethical decision didn't not change the fact that it was scary! I was terrified of the responsibility! I did NOT want to have to deal with a trach or a gtube....I actually passed out and even still can not be in the room when they are changing out the trach. But we chose LIFE knowing the responsibility we are accepting. Obviously we both felt incredibly guilty that Selah had the accident but even if the accident had been something else, that had nothing to do with us, we would have still chosen LIFE! It was an easy decision but hard in its' ramifications....
Do you understand that we did not take the easy way out??? I'm not saying that to pat ourselves on our backs. We are not saints. We made that decisions for the above reasons, and the number one reason being ~that we answer to God for our decisions.
In this world we live in, too many people make the easy decisions...whether it is to have an abortion & "take care of the problem" or walk away from your children and be irresponsible, or to take the easy way out in other areas...like just live together "cause "I don't need a piece of paper" or to divorce easily....
I'm sharing with you to "man Up"" put on your big girl panties" "set your face like a flint" "have a backbone" the easy thing is NOT the best thing!
Last night I said to Jon "what if we would have just let Selah die" we would have been dealing with guilt and we wouldn't be experiencing these wonderful daily miracles. BUT even if things had not gotten any better, STILL we would have done the right thing. We chose LIFE with very little hope that we'd see any changes....but thank God He gave us the courage to make the right decision. It would have been easy to have "let nature take its' course" no one would have blamed us.....but now look at the Miracles we are seeing!!!
So I encourage you to do the right thing even if it is not easy!!!! Do not take the easy way out in your life either! Do the right thing even if it is not the easy thing, do the right thing even if others give you a way out. Remember one day you will answer to God for the decisions you make in life. God can forgive you for anything and will if you ask for forgiveness but it's so much easier and better to just do the right thing first!
We are a thankful family tonight....please continue to pray for our Selah, pray that she will continue to cough and gag. Pray that she will have more head and limb control. Thank you!!!!
She had a BUSY good day today. Unfortunately the Fish Oil did not get delivered today but should be here Monday thank you Hurricane Sandy....We were all geared up for it but Monday will be the big day!
So Selah did great with OT today, after coughing up a goober:) This is HUGE (how many times have I said that?) She did cough little tiny coughs a few times in the PICU but hadn't done it again but this was a big good cough and she followed it up by doing it again!
She saw Speech today 2x and she did some good responses. The ST ordered a different type of trach, for Selah. She will be getting a speaking trach and she will have to learn how to do it. She will have ot learn to breath through her mouth. That is a step forward to going to not having one at all.
A person who works with brain injured people actually did a coma evaluation of her today. She was at Level 1 in the begining and now is at level 3. Full recovery would be Level 8 however since Selah did not talk before this, she probably wouldn't go but to Level 5 to be considered out of the coma. She is really working and changing almost daily.
Jon is taking Selah out in her stroller this afternoon. She stays busy all day:) It is just wonderful to see the great changes taking place with her.
I just have to point out something....when this happened in the beginning, we had to make a choice whether to put Selah on a feeding tube and a trach. It was not a hard decision for us....I KNOW some people probably thought we shouldn't have done that, but we respect LIFE. We made a promise to the judge in Ukraine, as well as to the orphanage director that we would give her the BEST we could give her.....and just because this happened, it didnt' change anything! We could have let her die, back in August...but we were committed to her and knowing that one day we will stand before the God of this Universe, we chose LIFE! Even tho' we knew it was the right moral/ethical decision didn't not change the fact that it was scary! I was terrified of the responsibility! I did NOT want to have to deal with a trach or a gtube....I actually passed out and even still can not be in the room when they are changing out the trach. But we chose LIFE knowing the responsibility we are accepting. Obviously we both felt incredibly guilty that Selah had the accident but even if the accident had been something else, that had nothing to do with us, we would have still chosen LIFE! It was an easy decision but hard in its' ramifications....
Do you understand that we did not take the easy way out??? I'm not saying that to pat ourselves on our backs. We are not saints. We made that decisions for the above reasons, and the number one reason being ~that we answer to God for our decisions.
In this world we live in, too many people make the easy decisions...whether it is to have an abortion & "take care of the problem" or walk away from your children and be irresponsible, or to take the easy way out in other areas...like just live together "cause "I don't need a piece of paper" or to divorce easily....
I'm sharing with you to "man Up"" put on your big girl panties" "set your face like a flint" "have a backbone" the easy thing is NOT the best thing!
Last night I said to Jon "what if we would have just let Selah die" we would have been dealing with guilt and we wouldn't be experiencing these wonderful daily miracles. BUT even if things had not gotten any better, STILL we would have done the right thing. We chose LIFE with very little hope that we'd see any changes....but thank God He gave us the courage to make the right decision. It would have been easy to have "let nature take its' course" no one would have blamed us.....but now look at the Miracles we are seeing!!!
So I encourage you to do the right thing even if it is not easy!!!! Do not take the easy way out in your life either! Do the right thing even if it is not the easy thing, do the right thing even if others give you a way out. Remember one day you will answer to God for the decisions you make in life. God can forgive you for anything and will if you ask for forgiveness but it's so much easier and better to just do the right thing first!
We are a thankful family tonight....please continue to pray for our Selah, pray that she will continue to cough and gag. Pray that she will have more head and limb control. Thank you!!!!
Thursday, November 1, 2012
Breaking News Update
Everything maybe in place for Selah to start the Fish Oil Study tomorrow! thank you Dr Barry Sears and staff and Strong's Hospital and Dr Asslin! I have seen such wonderful cooperate on the behalf of our daughter! Just two weeks ago tomorrow CNN aired the segment about Fish Oil and that started the process......two people emailed it to me, I blogged about it, a friend of Dr Sears got us in touch with us and get us in touch with him and it all started happening....
I believe "the steps of the righteous are ordered by the Lord"!!!!!!
I believe "the steps of the righteous are ordered by the Lord"!!!!!!
Team Meeting ROCKED:)
Did I say before how much we like Strong's Hospital? If you have to be sick, this is the place to be!
Ok we had a great team meeting today. We have had some very sad team meetings in the past....this one made up for all of those!
I hope I can convey things correctly medically. We are used to medical things since we had Sam but this is a whole new area and we are learning as we go. Sometimes I may understand things, but not good enough to share it...but that doesn't stop me from trying LOL
First we discussed her OT/PT and ST They have been seeing changes for the past 4 week almost daily. She is doing good things. Her arms have relaxed to the point she no longer has to wear splints to keep her hands and arms in a normal pose, she does it now on her own!!! Her knees have normal range of motion, while she is being worked with, although she hates it. Her ankles have almost a 90 degree range of motion when worked with. They have progressed, but still need to worked with. That stiffness was caused by the accident as well as just laying in bed for 3 months....it can be reversed. An order has been put in for Speech, since she is progressing and swallowing some.
Pulmonary thankfully she has had no issues with her trach or breathing. She breathes 100% on her own. She is tolerated the "nose" that covers the trach and acts just like our nose as far as humidifying and cleaning the air that goes into her lungs. She is doing all that herself. They have started deflating the cuff. The cuff is inside her and it helps to keep her secretions out of her lungs, It's been deflated now for 48 hours and she hasn't had a problem. We are working towards getting a smaller trach, one she can make sounds over and eventually one day her coming off it altogether. I hope I"m explaining it right. She is swallowing some but needs to improve, we are sure she will in time. It's all GOOD!!
FISH OIL STUDY will be started Monday! She is having an MRI today and we are just waiting on them to come and get her. She needs one for several reasons but this will also give us a baseline to see what kinds of progress she will make. She has to be sedated for it:) Why am I smiling? Because she is moving too much to trust her to stay still! That's a good thing! So much has gone into getting this started and we are so thankful for Dr A who is working with us and all her hard work!!!
Future Plans Selah is about to the point she is eligible for rehab! So that seems that will be our next step for her! Because of insurance, we are looking at one in Florida called Brooks but is it a long way from home. Its in Jacksonville. There is a Ronald McD House there but I HATE change! I'd so much rather do the rehab here and just stay here but Jon does have to get back to work. It's hard for me to trust and I have full trust in the hospital here and would rather be in the St Mary's that works with Strong's. We discussed her going to St Mary's now and then transferring to Florida but our insurance might not cover that. It's just going to be hard for us to transfer. It will be long term and it is not going to be easy on our family. Jon will probably be home and the kids & me will probably be up there. If you know us. that is not how we roll, we do everything as a family....
Someone asked me to explain where Selah as far as is she still in a coma? She is still considered to be in a coma. Comas have different levels and there is a scale. She was in a very deep coma in the beginning but now she is in the lightest coma stage. She has progressed well over the past 4 weeks. It usually isn't like how you see it on tv at all. She was at one point in the stage like Terri Shivo (the lady in Florida that her husband took her off her feeding tube and she starved to death) I saw a video her parents took off her and there was a time I easily compared Selah to Terri. But now Selah is responsive when she is awake. She follows us with her eyes and by moving her head with her eyes. She doesn't just react to pain, she moves away from anything she doesn't like. I was clipping her nails and she snatched her hand away. She still hasn't reached for anything or grasped without help but I think that will be coming!!! She swallows some, and has some head control. I think Selah would still be considered to be in a persistent vegetative coma, but she is not as deep into it as she was even last week. That means she is progressing well!!!!
So I hope I've done justice to the explanation of our meeting. It was a HAPPY one:) Lots of hope! Please keep praying for Selah!!! You can pray over all the above things and as always we pray she will cough and gag! That would be a huge thing!
I received some sad news today. A dear college friend lost her mom today. Her mom was such a sweet classic Southern woman with a sweet drawl and very classy and had a great sense of humor! Please keep my dear friend in your thoughts and prayers!
Also a family I grew up with lost their dear son unexpectedly. He had some special needs but was a very special and very loved boy! My heart goes out to this wonderful family, who worked hard to make his life perfect! They had him in all kinds of therapy and had enhanced his life in so many ways. He will be greatly missed by his grieving family! Please pray for them!!! They are shattered!
Ok we had a great team meeting today. We have had some very sad team meetings in the past....this one made up for all of those!
I hope I can convey things correctly medically. We are used to medical things since we had Sam but this is a whole new area and we are learning as we go. Sometimes I may understand things, but not good enough to share it...but that doesn't stop me from trying LOL
First we discussed her OT/PT and ST They have been seeing changes for the past 4 week almost daily. She is doing good things. Her arms have relaxed to the point she no longer has to wear splints to keep her hands and arms in a normal pose, she does it now on her own!!! Her knees have normal range of motion, while she is being worked with, although she hates it. Her ankles have almost a 90 degree range of motion when worked with. They have progressed, but still need to worked with. That stiffness was caused by the accident as well as just laying in bed for 3 months....it can be reversed. An order has been put in for Speech, since she is progressing and swallowing some.
Pulmonary thankfully she has had no issues with her trach or breathing. She breathes 100% on her own. She is tolerated the "nose" that covers the trach and acts just like our nose as far as humidifying and cleaning the air that goes into her lungs. She is doing all that herself. They have started deflating the cuff. The cuff is inside her and it helps to keep her secretions out of her lungs, It's been deflated now for 48 hours and she hasn't had a problem. We are working towards getting a smaller trach, one she can make sounds over and eventually one day her coming off it altogether. I hope I"m explaining it right. She is swallowing some but needs to improve, we are sure she will in time. It's all GOOD!!
FISH OIL STUDY will be started Monday! She is having an MRI today and we are just waiting on them to come and get her. She needs one for several reasons but this will also give us a baseline to see what kinds of progress she will make. She has to be sedated for it:) Why am I smiling? Because she is moving too much to trust her to stay still! That's a good thing! So much has gone into getting this started and we are so thankful for Dr A who is working with us and all her hard work!!!
Future Plans Selah is about to the point she is eligible for rehab! So that seems that will be our next step for her! Because of insurance, we are looking at one in Florida called Brooks but is it a long way from home. Its in Jacksonville. There is a Ronald McD House there but I HATE change! I'd so much rather do the rehab here and just stay here but Jon does have to get back to work. It's hard for me to trust and I have full trust in the hospital here and would rather be in the St Mary's that works with Strong's. We discussed her going to St Mary's now and then transferring to Florida but our insurance might not cover that. It's just going to be hard for us to transfer. It will be long term and it is not going to be easy on our family. Jon will probably be home and the kids & me will probably be up there. If you know us. that is not how we roll, we do everything as a family....
Someone asked me to explain where Selah as far as is she still in a coma? She is still considered to be in a coma. Comas have different levels and there is a scale. She was in a very deep coma in the beginning but now she is in the lightest coma stage. She has progressed well over the past 4 weeks. It usually isn't like how you see it on tv at all. She was at one point in the stage like Terri Shivo (the lady in Florida that her husband took her off her feeding tube and she starved to death) I saw a video her parents took off her and there was a time I easily compared Selah to Terri. But now Selah is responsive when she is awake. She follows us with her eyes and by moving her head with her eyes. She doesn't just react to pain, she moves away from anything she doesn't like. I was clipping her nails and she snatched her hand away. She still hasn't reached for anything or grasped without help but I think that will be coming!!! She swallows some, and has some head control. I think Selah would still be considered to be in a persistent vegetative coma, but she is not as deep into it as she was even last week. That means she is progressing well!!!!
So I hope I've done justice to the explanation of our meeting. It was a HAPPY one:) Lots of hope! Please keep praying for Selah!!! You can pray over all the above things and as always we pray she will cough and gag! That would be a huge thing!
I received some sad news today. A dear college friend lost her mom today. Her mom was such a sweet classic Southern woman with a sweet drawl and very classy and had a great sense of humor! Please keep my dear friend in your thoughts and prayers!
Also a family I grew up with lost their dear son unexpectedly. He had some special needs but was a very special and very loved boy! My heart goes out to this wonderful family, who worked hard to make his life perfect! They had him in all kinds of therapy and had enhanced his life in so many ways. He will be greatly missed by his grieving family! Please pray for them!!! They are shattered!
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