Well today is day 74 but the mixer isn't here so no fish oil for Selah. The fish oil is mixed with Poly (something) to coat her stomach and help her intestines absorb the fish oil better. It also protects the plastic in the syringe and in the tubing for her feeding tube. It should be here tomorrow.
She held her head up a little yesterday and even more today! The therapist said she held it up for 2 full minutes!!!!!! We love that!
Jon took her outside for quite some time today. She loves being outside. It relaxes her, I can't wait to get her home so we can be outside.
I stayed with the kids today at the hotel. I ordered all their home schooling curriculum. We are staying with the same curriculum their school uses. They will be working on the weekends and over the summer! So I guess we are official home schoolers:) I promised my friends I wouldn't start wearing denim jumpers LOLOL! When I go to thrift stores, I have an unhealthy pull towards them....I liked them back in the 90's! In fact I have to really watch myself or I have been known to come home with something I would have worn in 1992 :)
We were doubly blessed tonight with a pork dinner and a meatloaf dinner.....Glad I am wearing pajama pants, I think I will go to sleep early tonight:)
Still waiting on the nursing staff. Hoping to hear something tomorrow.
Thanks for all your prayers for Selah, they mean so much to us! I know God hears them all!!!!
"Our life maybe a crazy life but it's our life" I'm married to a pastor of a small rural church, who is also the prison chaplain. We have 5 kids, each with their unique story. I love gardening & we all love the outdoors. Our life is not the way we planned it to be, but we are learning to trust God in every area. Come and read about our life as we live it to the fullest!
Thursday, January 17, 2013
Our story
With so many new readers, I've been asked questions about our story....the whole story is within my blog but I thought it would be nice to have the main gist of it all together so you could read it.
Jon and I are both native Floridians! i was born in north Florida and grew up in Perry. My great aunt and uncle raised me. Jon was born and raised in Lakeland Fl. He had a more 'normal" upbringing. We met briefly in a class at Southeastern University but really got to know each other when I went to apply for a job at the Talbot House where he was the director! We eloped in a month:) That was over 23 years ago so it worked for us!!!!
After we got married, Jon finished his last year of college and I worked at a juvenile probation officer. Our dream was to move to NYC and work in inner city ministry. We did just that for a few years. Our oldest son Steve was born there. The next year we found out we were having TWINS! But they died at about 21 weeks. That was such a heartache to me and I walked through a deep valley for several years. By God's grace, I recovered from the loss and a few years later we finally got pregnant again....i was on bed rest most of the pregnancy....then Sam was born. the day after he was born, I was holding him and he opened his eyes....in that moment our lives turned upside down. Somehow no one had noticed but our child was blind....it was very obvious. During that time, I committed to trust God no matter what happened. Fast forward a year and we see a picture of a little blind boy in China, we realize we could offer him a family, 9 months and 6 days later, I'm picking Shad up from a cold Chinese orphanage!
The years roll by, my husband is the pastor of Grace Church and the chaplain at Zephyrhills Correctional and we are a happy family of 5....until I see a little blind girl's picture. She looks just like our son Sam and her picture keeps me up all night. She is only 4 years old and in an Ukraine mental institution....we decide we have to adopt this little girl, Sarah. One little girl, turns into two as we find out about another little girl there at the institution. Selah also joined our family.... both have extreme delays and are malnourished.
Our life was perfect! Five great kids that we adored!! The girls just fit into our family perfectly. We had a wonderful summer last year, every day was a celebration. We enjoyed so many "firsts" for the girls....they were blossoming and changing, learning LOVE and family.
Then we left home August 10, 2012 for Sam's annual eye exam in NY. At three years old, he had been given some sight through a corneal implant. He had had great success and we hoped that the surgery might offer some help for our daughter Sarah who also had Peter's Anomaly the same rare eye condition our son had.
On August 15, my husband were walking Sam and Selah in a jogging stroller along the banks of the Erie Canal. We have walked that area for years, it is behind the Ronald McDonald House where we stay. Jon looked away for approximately 4 seconds (per the police report) to check the time on his cell phone, as we were dropping off another family at the airport. In those 4 seconds, one of the children must have caused the stroller to move, and it rolled into the Canal. Jon jumped in and fought the current and somehow got to a tree with branches that went into the water and was able to pull the stroller and children up as he was screaming for help. Thankfully help came and they got the children out. Both were not breathing, Sam was revived there but Selah was without a heartbeat for 30-45 minutes.
Selah suffered brain damage and is in the recovery stage. We don't know how far she will come. At this point, she is alert, has a normal sleep/wake rhythm and is responsive but in a persisiant vegetative coma. We started her on in a Fish Oil Study that has shown great promise in reducing inflammation in the brain and allowing for healing. She recently had a MRI that shows good changes in her white matter and in the frontal lobe of her brain but she has a far way to go.
She was moved from NY to Jacksonville Fl in December for Rehab and we are now waiting on nursing to be set up for us to go home.
My life has been a challenging journey but learning to trust God has brought and will bring me through!
Jon and I are both native Floridians! i was born in north Florida and grew up in Perry. My great aunt and uncle raised me. Jon was born and raised in Lakeland Fl. He had a more 'normal" upbringing. We met briefly in a class at Southeastern University but really got to know each other when I went to apply for a job at the Talbot House where he was the director! We eloped in a month:) That was over 23 years ago so it worked for us!!!!
After we got married, Jon finished his last year of college and I worked at a juvenile probation officer. Our dream was to move to NYC and work in inner city ministry. We did just that for a few years. Our oldest son Steve was born there. The next year we found out we were having TWINS! But they died at about 21 weeks. That was such a heartache to me and I walked through a deep valley for several years. By God's grace, I recovered from the loss and a few years later we finally got pregnant again....i was on bed rest most of the pregnancy....then Sam was born. the day after he was born, I was holding him and he opened his eyes....in that moment our lives turned upside down. Somehow no one had noticed but our child was blind....it was very obvious. During that time, I committed to trust God no matter what happened. Fast forward a year and we see a picture of a little blind boy in China, we realize we could offer him a family, 9 months and 6 days later, I'm picking Shad up from a cold Chinese orphanage!
The years roll by, my husband is the pastor of Grace Church and the chaplain at Zephyrhills Correctional and we are a happy family of 5....until I see a little blind girl's picture. She looks just like our son Sam and her picture keeps me up all night. She is only 4 years old and in an Ukraine mental institution....we decide we have to adopt this little girl, Sarah. One little girl, turns into two as we find out about another little girl there at the institution. Selah also joined our family.... both have extreme delays and are malnourished.
Our life was perfect! Five great kids that we adored!! The girls just fit into our family perfectly. We had a wonderful summer last year, every day was a celebration. We enjoyed so many "firsts" for the girls....they were blossoming and changing, learning LOVE and family.
Then we left home August 10, 2012 for Sam's annual eye exam in NY. At three years old, he had been given some sight through a corneal implant. He had had great success and we hoped that the surgery might offer some help for our daughter Sarah who also had Peter's Anomaly the same rare eye condition our son had.
On August 15, my husband were walking Sam and Selah in a jogging stroller along the banks of the Erie Canal. We have walked that area for years, it is behind the Ronald McDonald House where we stay. Jon looked away for approximately 4 seconds (per the police report) to check the time on his cell phone, as we were dropping off another family at the airport. In those 4 seconds, one of the children must have caused the stroller to move, and it rolled into the Canal. Jon jumped in and fought the current and somehow got to a tree with branches that went into the water and was able to pull the stroller and children up as he was screaming for help. Thankfully help came and they got the children out. Both were not breathing, Sam was revived there but Selah was without a heartbeat for 30-45 minutes.
Selah suffered brain damage and is in the recovery stage. We don't know how far she will come. At this point, she is alert, has a normal sleep/wake rhythm and is responsive but in a persisiant vegetative coma. We started her on in a Fish Oil Study that has shown great promise in reducing inflammation in the brain and allowing for healing. She recently had a MRI that shows good changes in her white matter and in the frontal lobe of her brain but she has a far way to go.
She was moved from NY to Jacksonville Fl in December for Rehab and we are now waiting on nursing to be set up for us to go home.
My life has been a challenging journey but learning to trust God has brought and will bring me through!
Politics
I don't usually write anything political....I'm conservative but I don't I don't get into big political debates. But I am in fear for my rights as an American citizen at this point.
I am very concerned about Obama's push for gun control. He is overstepping his role as president. He is evoking "executive powers" to make new laws without going through the legislative branch. That is a SCARY thing people!
He surrounds himself with children as he signs executive orders restricting guns, so if you oppose Obama, it would seem that you oppose "protecting" the children. He doesn't want YOU to have the right to protect your family yet his family is protected by many guns!
I grew up around guns. I learned to shoot and like to go target practing. And I'm actually pretty good! When I graduated from high school 30 years ago, it was nothing to see trucks in the parking lot with gun racks filled with rifles. I didn't think anything of it. Guns were just a part of life. People went hunting, my family all hunted. I know many people who collect various types of guns, it's a hobby to them.
There is just so much hypocrisy in this whole mess....never are violent movies and games addressed. I grew up knowing healthy teens who hunted and target practiced and had RESPECT for guns. Now I have to say I know unhealthy teens and young adult men who glory in watching violence on tv and playing crazy video games. They have not been taught to respect a gun and the damage it can do to a person. They have a silly mindset of "shoot them up" And they do that without any respect for life.
There is hypocrisy in the president sending his kids to a private school where there is already armed security and of course the girls have the Secret Service to protect them also, but then NOT wanting anyone else' child to have the same protection.
I am sorry for the tragedy that happened in Newtown. I am sorry for any loss of life but we must remember that a criminal will break the laws to get what he wants.
The worry I have about our country goes far beyond just this new push for gun control. Our country has changed. We are headed into becoming a Socialist nation as fast as we can. Our rights are being taken away from us on all fronts.
When we were in Ukraine last year we would have very interesting conversations with anyone who spoke English and without fail we would be asked about Obama and "did we know he was a socialist???" They knew what they were taking about and they could see it from afar! Some liked Obama but most did not but they would all say the same things to us. It was very eye opening.
I'm sad and worried about where our country is headed. It's not just gun control, it's the abortion issue, the "redefining of marriage" , the attack on Christianity..... the violence and materialism being glorified throughout Hollywood, the lack of morality, the attack on the family, the attack on the Constitution....our nation is FAR from where it started.
I am very concerned about Obama's push for gun control. He is overstepping his role as president. He is evoking "executive powers" to make new laws without going through the legislative branch. That is a SCARY thing people!
He surrounds himself with children as he signs executive orders restricting guns, so if you oppose Obama, it would seem that you oppose "protecting" the children. He doesn't want YOU to have the right to protect your family yet his family is protected by many guns!
I grew up around guns. I learned to shoot and like to go target practing. And I'm actually pretty good! When I graduated from high school 30 years ago, it was nothing to see trucks in the parking lot with gun racks filled with rifles. I didn't think anything of it. Guns were just a part of life. People went hunting, my family all hunted. I know many people who collect various types of guns, it's a hobby to them.
There is just so much hypocrisy in this whole mess....never are violent movies and games addressed. I grew up knowing healthy teens who hunted and target practiced and had RESPECT for guns. Now I have to say I know unhealthy teens and young adult men who glory in watching violence on tv and playing crazy video games. They have not been taught to respect a gun and the damage it can do to a person. They have a silly mindset of "shoot them up" And they do that without any respect for life.
There is hypocrisy in the president sending his kids to a private school where there is already armed security and of course the girls have the Secret Service to protect them also, but then NOT wanting anyone else' child to have the same protection.
I am sorry for the tragedy that happened in Newtown. I am sorry for any loss of life but we must remember that a criminal will break the laws to get what he wants.
The worry I have about our country goes far beyond just this new push for gun control. Our country has changed. We are headed into becoming a Socialist nation as fast as we can. Our rights are being taken away from us on all fronts.
When we were in Ukraine last year we would have very interesting conversations with anyone who spoke English and without fail we would be asked about Obama and "did we know he was a socialist???" They knew what they were taking about and they could see it from afar! Some liked Obama but most did not but they would all say the same things to us. It was very eye opening.
I'm sad and worried about where our country is headed. It's not just gun control, it's the abortion issue, the "redefining of marriage" , the attack on Christianity..... the violence and materialism being glorified throughout Hollywood, the lack of morality, the attack on the family, the attack on the Constitution....our nation is FAR from where it started.
Wednesday, January 16, 2013
Day 73 fish Oil Study & I did a trach change....
I DID IT!!!!!!! I changed Selah's trach! And I did NOT pass out!!! Although I did close my eyes as I was pulling it out LOL.....
We have some really nice nurses that I feel comfortable with and one of them got me to sit on the bed and watch last week. I manged that without getting sick or passing out and I practiced putting in a trach by using her hand with her thumb and forefinger acting as a trach LOL Today during our team meeting the doctor asked us what did we feel comfortable doing for Selah and what do we not feel comfortable with. For me, it's only the trach. Jon has done everything and has done it really good. So I thought I would try today. We had one of our favorite nurses, she is a Muslim and so funny:) She tells me how to be a good Muslim wife~ I wouldn't make a good one:) Anyhow we laugh alot with her and it made it easy for me to work with her. She and Jon got ready in case I passed out....she put a chair behind me and Jon was ready to catch me... but I did fine:) As I was pulling out the old trach, it felt like I was going to pull out her lungs, so I closed my eyes.....then I realized what I was doing! And my eyes flew open! Putting in the new trach was easier.
Selah did good today but after her bath and trach change, she was on the edge of a storm for about an hour or so. We took turns holding her and I brought in a rocking chair and we tried that for awhile too. She managed not to storm but it was close. Her heart rate would go up to the 130s and then come down.... Jon and I can't help but worry that it is the Ritalin that might have caused that. We aren't seeing any new or good changes in her. We're giving the Ritalin until Monday, if she doesn't start having issues, to see if it will help her but if she has storming, we will stop it. That is the last drug that is used for children to "wake them up"
I talked to the person in Medicaid who is helping us. We feel better about our chances to go home soon. It looks like things are working out and one agency has had a job fair in order to find nurses for Selah. It does not look like there will be an issue with getting approval for her to have 24/7 nursing....the wait is for nurses to fill in those slots! Thankfully there is a push to find her the nursing she needs so our family can get home! But we need nurses...so if you have any contacts, please let me know.
The problem with our fish oil got sorted out, and it's on the way to us.....
So everything is moving....even me:) Please pray for Selah....holding her this afternoon made me miss her. I just can't help but remember how it felt to hold her little body before the accident and now she feels so different and distant to me. She has gained so much weight! Someone asked me if she was swollen but she is NOT, she is just a pug:) She has not had one tummy problem, thankfully! She is fed Pedisure and it has caused her to gain weight. Right now for her height, she is fine but she is quite chubby:) She looks so good and has such good color. I just want her to respond more..... She has been lifting her head and shoulders off the bed several times a day. She was doing it often in NY but they are just seeing her do it now. So please pray for Selah!!
We have some really nice nurses that I feel comfortable with and one of them got me to sit on the bed and watch last week. I manged that without getting sick or passing out and I practiced putting in a trach by using her hand with her thumb and forefinger acting as a trach LOL Today during our team meeting the doctor asked us what did we feel comfortable doing for Selah and what do we not feel comfortable with. For me, it's only the trach. Jon has done everything and has done it really good. So I thought I would try today. We had one of our favorite nurses, she is a Muslim and so funny:) She tells me how to be a good Muslim wife~ I wouldn't make a good one:) Anyhow we laugh alot with her and it made it easy for me to work with her. She and Jon got ready in case I passed out....she put a chair behind me and Jon was ready to catch me... but I did fine:) As I was pulling out the old trach, it felt like I was going to pull out her lungs, so I closed my eyes.....then I realized what I was doing! And my eyes flew open! Putting in the new trach was easier.
Selah did good today but after her bath and trach change, she was on the edge of a storm for about an hour or so. We took turns holding her and I brought in a rocking chair and we tried that for awhile too. She managed not to storm but it was close. Her heart rate would go up to the 130s and then come down.... Jon and I can't help but worry that it is the Ritalin that might have caused that. We aren't seeing any new or good changes in her. We're giving the Ritalin until Monday, if she doesn't start having issues, to see if it will help her but if she has storming, we will stop it. That is the last drug that is used for children to "wake them up"
I talked to the person in Medicaid who is helping us. We feel better about our chances to go home soon. It looks like things are working out and one agency has had a job fair in order to find nurses for Selah. It does not look like there will be an issue with getting approval for her to have 24/7 nursing....the wait is for nurses to fill in those slots! Thankfully there is a push to find her the nursing she needs so our family can get home! But we need nurses...so if you have any contacts, please let me know.
The problem with our fish oil got sorted out, and it's on the way to us.....
So everything is moving....even me:) Please pray for Selah....holding her this afternoon made me miss her. I just can't help but remember how it felt to hold her little body before the accident and now she feels so different and distant to me. She has gained so much weight! Someone asked me if she was swollen but she is NOT, she is just a pug:) She has not had one tummy problem, thankfully! She is fed Pedisure and it has caused her to gain weight. Right now for her height, she is fine but she is quite chubby:) She looks so good and has such good color. I just want her to respond more..... She has been lifting her head and shoulders off the bed several times a day. She was doing it often in NY but they are just seeing her do it now. So please pray for Selah!!
Thoughts on Adoption
With all that has been in the media lately about Russia's ban on adoption, I just have to share my feelings. Obviously this is just a purely political move that shows us Putin's heart (as if we thought he was a kind hearted man) It seems to go beyond a political statement. I'm not a big one on blaming things on the devil but this ban seems almost demonic in nature.
It's hard to explain adoption and the love that it brings. I remember way back in the middle 90's when Steve was a baby, I read an article in Charisma magazine about "dying rooms" in China. Rooms where special needs children were placed to die! I cried reading that article and had a "knowing" in my heart that one day we would adopt from China. I can remember sitting on our bedroom floor, bawling and holding Steve. I prayed that God would prepare the way and protect the child He had for us! It was another 11 years before that adoption took place! I soon forgot all about that prayer...but God in Heaven remembered....
Growing up I was raised by my great aunt and uncle. It wasn't the worst upbringing but it certainly wasn't an Ozzie/Harriet type of life either. BUT it sure beat the heck out of the alternative, being raised by either of my "biological parents"! I'm sure the love of my great aunt to me, probably opened my eyes to loving a child that wasn't my "biological" child.
When I saw Shad's picture, I was drawn to him immediately! I can't explain it.... same way with Sarah and Selah..... they become YOUR child! The closest thing to compare it to is seeing your child's sonogram photos....You examine every little part of them that you can see...I remember being memorized by Sarah's hands! Don't ask me why but I loved her little hands in every picture I saw of her!
I got this picture of Sarah while we were waiting and I just memorized it
It's hard to explain adoption and the love that it brings. I remember way back in the middle 90's when Steve was a baby, I read an article in Charisma magazine about "dying rooms" in China. Rooms where special needs children were placed to die! I cried reading that article and had a "knowing" in my heart that one day we would adopt from China. I can remember sitting on our bedroom floor, bawling and holding Steve. I prayed that God would prepare the way and protect the child He had for us! It was another 11 years before that adoption took place! I soon forgot all about that prayer...but God in Heaven remembered....
Growing up I was raised by my great aunt and uncle. It wasn't the worst upbringing but it certainly wasn't an Ozzie/Harriet type of life either. BUT it sure beat the heck out of the alternative, being raised by either of my "biological parents"! I'm sure the love of my great aunt to me, probably opened my eyes to loving a child that wasn't my "biological" child.
look at that sad baby!!
I got this picture of Sarah while we were waiting and I just memorized it
And this one last Valentine's day to reassure me Sarah was ok.
This is one of the first pictures of Selah taken a few years ago
And here is one taken last year for us right before we went to Ukraine
So when you see these pictures even before you meet the child, you love them. Then after you meet them....they are your child....I can not imagine having gone to court, and passing court and then not being allowed to bring the child home. Jon & I talked about that and he said he was sure I'd be in a Ukrainian jail still if that had happened to us!
I can't explain the love that you have but it is real and you would die for your child. Adoption is just a word. My three adopted children mean the same to me as my biological children. It's hard for me to fathom they actually were someone else's biological child.... With Shad being abandoned we have no birth parent info. On the girls we have a lot of info .... with all three sets of parents, I have no desire to meet them, no desire to thank them....their actions condemned my three children to a life in an orphanage.... I'm a mom, of a special needs biological child and I wouldn't have left his side for one minute, much less gave him away because of his disability. Shad's vision impairment happened because of an accident. Our doctors can tell he was not born with his eye like it is. It looks as if he fell onto something and it went into his eye. there is scar tissue all the way up into the optic nerve. It was a very bad accident....then his family left him on a street. He was no longer "perfect" They walked away from him, after an accident.... That bothers me so much.... that would be like us walking away from Selah after her accident....I can not imagine. She is even dearer to us now than she was before, if that could be possible!
So I think of all the abandoned children in Russia, especially the special needs ones...does Putin really think that his Russian people are going to adopt those children?? Read this blog of a blind Russian girl... http://world.time.com/2013/01/14/the-blind-girl-vs-putin-a-plea-for-russias-handicapped-orphans/ she is amazing and she tells Putin at the end to lead the change and adopt a few handicapped kids..... You go girl!!!!
So many countries with their backgrounds not rooted and grounded in Christianity have such a jaded attitude towards adoption, especially special needs adoption. Look at China, Russia, all the former Soviet Union countries....they don't respect LIFE and it shows. In America we help our weakest, things may not be perfect but I can promise you they are much better than any other country on the face of this earth! If you doubt me, then take me to the nearest mental institution that is full of malnourished sick bed ridden handicapped children and I might just believe you.....but you won't find that in America....and if you did, people would go to prison for it!!!
I pray that this awful ban is lifted and adoption are allowed to proceed....Putin wants to say that 19 children of the 100,000 plus that have been adopted by Americans over the years have died in their parents care. I wonder how many children are dying MONTHLY in orphanages in Russia??? If I had to guess, I'd say probably more than 19! Of course any death that could be prevented is awful but the truth of the matter is, adoptive parents pass such scrutiny and background checks, as well as education classes, that they are well prepared and really want to be parents....Adoption is not an accident! You don't just "happen to adopt" it is HARD! And I think it should be, it shows that a family has perseverance and really want the child or children, to the point their whole life is turned upside down.
People adopt for various personal reasons....some say they do not like the idea of "rescuing" their child but for us that was a part of our adoption. We certainly rescued them and gave them the love of a family. It thrills me to do things for my kids that I know they never had before, even if it is ice cream or whatever... I love taking care of them and knowing they'll never be hungry again! We think of the three of them as JEWELS that were hidden away.....not appreciated, then they were taken out of the dark, cleaned off and then they could shine!
I keep reading different articles and hearing things on tv. I hope this is just Putin acting big and bad and I hope he will back down after he thinks his point is made. I don't know what is going to happen. I had always said that I never ever wanted to adopt from Eastern Europe, including Russia, because of the uncertainty of the adoptions and the changes that happen over night... Of course then we adopted from Ukraine and did go through some of the ups and downs that I was afraid of! But it was worth it to get our girls!!!
Tuesday, January 15, 2013
Day 72 Fish Oil Study and Frustration
Selah had a really good day today. She did therapy out of her room and was relaxed. Her doctor wanted to go up on the Bacifin (it relaxes her muslces) and she did by .5 and it made a big difference in Selah's arms and right leg. She is sleeping so nicely tonight. But she had a really busy day and she was alert all day so we aren't worried that the med is making her sleepy.
Tomorrow the dose of Ritalin is being doubled. We have not really seen any signs of it working but it had to be given at a low dose to start with to make sure that she would not have an adverse reaction. If we see no change in a few days we will take her off of it.
The Frustration is we are sitting here in Jax, Selah in a hospital where she could get sick, my kids by themselves most of the day as we are with Selah, Jon not working, so many ramifications from finances to schooling....WAITING on home nursing care!!! It would do no good for Jon to go home and go back to work as we can't be here as a family without him nor could they all be there at home as a family without me....and we don't "roll like that" With the little ones, and all their needs, it takes two adults to split the time. If he was gone, I'd have very little time with Selah because I'd have to do eye drops and everything by myself and I can't be at two places at the same time....
Basically our issue is where we live...supposedly our area is hard to get nurses for. No agency has agreed to take our case. We are expecting to get 24/7 nursing and that would require about 6 or 7 nurses to staff her. I have called Tallahassee as she is now under Medicaid. When I worked for the state, I worked with agencies that contracted with the state and they were REQUIRED to provide whatever services they had contracted OR they would lose their contract the next year. I have had some very helpful folks working with me in the Medicaid office but it seems like we are not getting anywhere..... if you are in any position to help me, please contact me. theclanton5@aol.com This is ridiculous and all of our lives are on hold at this point. I know that Selah needs to come home and believe she will do better once she is home! At this point, I may have to contact Tallahassee once again.
If you live in the central Florida area and are licenced as a nurse and interested in working for our family through a nursing agency please contact at click on their http://www.psahealthcare.com/job_search.html career section and apply. Please note I would not feel comfortable with a male nurse in our home....sorry I know "beggers can't be choosers" but that would make me uncomfortable.
We are almost out of our mixture that goes with the fish oil, it basically coats the stomach and intestines and allows for the fish oil to be absorbed better. It also protects the plastic syringe and tubing from the fish oil. Well Dr Sears' office needs the doctor here to order it, the doctor here won't order it since she didn't order it to begin with....I can't go back to the original doctor as she has no jurisdiction over her medical care now.....more frustration.....
And my blog is not allowing pictures to post.....things like that annoy me!
Good thing I wrote a spiritual post earlier....LOL this is my real life and I'm not feeling it......
Tomorrow the dose of Ritalin is being doubled. We have not really seen any signs of it working but it had to be given at a low dose to start with to make sure that she would not have an adverse reaction. If we see no change in a few days we will take her off of it.
The Frustration is we are sitting here in Jax, Selah in a hospital where she could get sick, my kids by themselves most of the day as we are with Selah, Jon not working, so many ramifications from finances to schooling....WAITING on home nursing care!!! It would do no good for Jon to go home and go back to work as we can't be here as a family without him nor could they all be there at home as a family without me....and we don't "roll like that" With the little ones, and all their needs, it takes two adults to split the time. If he was gone, I'd have very little time with Selah because I'd have to do eye drops and everything by myself and I can't be at two places at the same time....
Basically our issue is where we live...supposedly our area is hard to get nurses for. No agency has agreed to take our case. We are expecting to get 24/7 nursing and that would require about 6 or 7 nurses to staff her. I have called Tallahassee as she is now under Medicaid. When I worked for the state, I worked with agencies that contracted with the state and they were REQUIRED to provide whatever services they had contracted OR they would lose their contract the next year. I have had some very helpful folks working with me in the Medicaid office but it seems like we are not getting anywhere..... if you are in any position to help me, please contact me. theclanton5@aol.com This is ridiculous and all of our lives are on hold at this point. I know that Selah needs to come home and believe she will do better once she is home! At this point, I may have to contact Tallahassee once again.
If you live in the central Florida area and are licenced as a nurse and interested in working for our family through a nursing agency please contact at click on their http://www.psahealthcare.com/job_search.html career section and apply. Please note I would not feel comfortable with a male nurse in our home....sorry I know "beggers can't be choosers" but that would make me uncomfortable.
We are almost out of our mixture that goes with the fish oil, it basically coats the stomach and intestines and allows for the fish oil to be absorbed better. It also protects the plastic syringe and tubing from the fish oil. Well Dr Sears' office needs the doctor here to order it, the doctor here won't order it since she didn't order it to begin with....I can't go back to the original doctor as she has no jurisdiction over her medical care now.....more frustration.....
And my blog is not allowing pictures to post.....things like that annoy me!
Good thing I wrote a spiritual post earlier....LOL this is my real life and I'm not feeling it......
Five months ago.....Commitment
Five months ago, right about this time as I type this, our lives changed forever......
People have said to me they can't believe how I've handled this ordeal. It embarrasses me when they say it....how do you respond to that? "well thanks I'm pretty spiritual" LOLOL.... truly the only way I've handled these past five months have been through God's strength. I do not say it lightly.... I am not some spiritual giant. I've never spent hours and hours in prayer, I'm a DOER! I pray as I go.... I'm not sinless LOLOLOL and if you know me you are laughing out loud also! I've got a temper that I barely keep under control...but I'm not an angry person, I just don't have time to put up with foolishness, falseness, power plays or stupidity. There is to much to do for God and for others to waste my time.
The one thing that I did that has help bring me through this is a commitment I made almost 9 years ago standing in a hospital corridor. I was watching an "undeserving" (in my opinion ) family take home a healthy newborn as my son struggled for his life in the NICU. You see about 9 years before that moment, we had lost twins and I went through "a season of the soul" that lasted for years, I was bitter at God, the world, everyone around me....you name it and I was bitter about it. I worked through it and with God's forgiveness I was able to overcome it. Bitterness is a terrible thing..... so in that hospital corridor, I had to chose to trust God or allow bitterness to overcome me once again.....I chose TRUST! Not so much because I was so spiritual but because I knew what bitterness does to a life and I did not want to go through that again. So that day, I chose to trust God, not knowing what was ahead for me in parenting a sweet little disabled boy~Sam. But I soon learned there was so much JOY in my choice! To trust God and lean on Him became the very thing that my soul needed to heal from that hurt. He bound up my broken heart, broken over the fact my little boy would never have a "normal" life. Can I tell you today that doesn't even make my heart twinge?
So when the accident happened, I reminded myself to TRUST and I remind myself DAILY to trust God. He didn't cause the accident, He didn't cause Sam to be born blind, He didn't cause my twins to die, but He is the rebuilder of broken dreams. I committed to trust God and to "not charge Him foolishly" That means I don't spend my time asking "WHY God?" "Why did this happen to us?" "Why did this happen to Selah" of course I know it was human error/an accident and I don't put the blame on God for not preventing it. I also don't put a burden on my husband's shoulders for letting it happen. We've all had situations that could have been just as bad...accidents happen, no one is perfect. I also don't put the blame on "the devil" I don't think the devil caused it....we live in a fallen world...the very week of the accident, one child drown 2 days before, one man a day before and an handicapped man 3 days later JUST in the Rochester area.... Our children were the only ones who lived.... Accidents happen....by looking away for a moment, things can happen. We are fragile humans.....
So I trust God....I don't even necessarily believe it's"all part of His plan" but I trust HIM! I believe He can" work it all for good" but I certainly don't believe He preordained tragedy..... But I trust Him.... He knew what laid ahead for our family.....He knew when He sent that lady to me in the mall months before to tell me "Something big is ahead for your family, do not be afraid, many will see" I don't know why He didn't stop it from happening but God is not a genie....we live in a fallen world, we aren't promised a rose garden even if we are Christians....
Can I encourage you to trust God? We all have our stories and our tragedies....but if you will trust God despite what you go through and quit blaming God for the bad things in your life, then maybe you might just find that peace you crave. I don't believe you will find peace any other way......
Let God write your life story. I'm not saying just lay back and do nothing but let Him be there in the story of your life.... He will be your peace when there is no other peace to be found, I can promise you that! No one or nothing else will be that peace you seek.
I am so not a perfect person and I will be the first to say it (before someone else chimes in...) I don't claim to be the most spiritual, but I'm confident in the One who I depend on.... I know He will be there for me, even if I don't get the "pastor's wife of the year award" and have to tell someone off LOL!
People have said to me they can't believe how I've handled this ordeal. It embarrasses me when they say it....how do you respond to that? "well thanks I'm pretty spiritual" LOLOL.... truly the only way I've handled these past five months have been through God's strength. I do not say it lightly.... I am not some spiritual giant. I've never spent hours and hours in prayer, I'm a DOER! I pray as I go.... I'm not sinless LOLOLOL and if you know me you are laughing out loud also! I've got a temper that I barely keep under control...but I'm not an angry person, I just don't have time to put up with foolishness, falseness, power plays or stupidity. There is to much to do for God and for others to waste my time.
The one thing that I did that has help bring me through this is a commitment I made almost 9 years ago standing in a hospital corridor. I was watching an "undeserving" (in my opinion ) family take home a healthy newborn as my son struggled for his life in the NICU. You see about 9 years before that moment, we had lost twins and I went through "a season of the soul" that lasted for years, I was bitter at God, the world, everyone around me....you name it and I was bitter about it. I worked through it and with God's forgiveness I was able to overcome it. Bitterness is a terrible thing..... so in that hospital corridor, I had to chose to trust God or allow bitterness to overcome me once again.....I chose TRUST! Not so much because I was so spiritual but because I knew what bitterness does to a life and I did not want to go through that again. So that day, I chose to trust God, not knowing what was ahead for me in parenting a sweet little disabled boy~Sam. But I soon learned there was so much JOY in my choice! To trust God and lean on Him became the very thing that my soul needed to heal from that hurt. He bound up my broken heart, broken over the fact my little boy would never have a "normal" life. Can I tell you today that doesn't even make my heart twinge?
So when the accident happened, I reminded myself to TRUST and I remind myself DAILY to trust God. He didn't cause the accident, He didn't cause Sam to be born blind, He didn't cause my twins to die, but He is the rebuilder of broken dreams. I committed to trust God and to "not charge Him foolishly" That means I don't spend my time asking "WHY God?" "Why did this happen to us?" "Why did this happen to Selah" of course I know it was human error/an accident and I don't put the blame on God for not preventing it. I also don't put a burden on my husband's shoulders for letting it happen. We've all had situations that could have been just as bad...accidents happen, no one is perfect. I also don't put the blame on "the devil" I don't think the devil caused it....we live in a fallen world...the very week of the accident, one child drown 2 days before, one man a day before and an handicapped man 3 days later JUST in the Rochester area.... Our children were the only ones who lived.... Accidents happen....by looking away for a moment, things can happen. We are fragile humans.....
So I trust God....I don't even necessarily believe it's"all part of His plan" but I trust HIM! I believe He can" work it all for good" but I certainly don't believe He preordained tragedy..... But I trust Him.... He knew what laid ahead for our family.....He knew when He sent that lady to me in the mall months before to tell me "Something big is ahead for your family, do not be afraid, many will see" I don't know why He didn't stop it from happening but God is not a genie....we live in a fallen world, we aren't promised a rose garden even if we are Christians....
Can I encourage you to trust God? We all have our stories and our tragedies....but if you will trust God despite what you go through and quit blaming God for the bad things in your life, then maybe you might just find that peace you crave. I don't believe you will find peace any other way......
Let God write your life story. I'm not saying just lay back and do nothing but let Him be there in the story of your life.... He will be your peace when there is no other peace to be found, I can promise you that! No one or nothing else will be that peace you seek.
I am so not a perfect person and I will be the first to say it (before someone else chimes in...) I don't claim to be the most spiritual, but I'm confident in the One who I depend on.... I know He will be there for me, even if I don't get the "pastor's wife of the year award" and have to tell someone off LOL!
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