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!
"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, January 15, 2013
Monday, January 14, 2013
Day 71 Fish Oil Study
We got back to Jax late this afternoon and I dropped everyone off at the hotel and came over to Selah. I missed seeing her since Saturday! She has a great nurse tonight and she had had her bath and looked great. We put her splints on and totally ticked her off but thank God she didn't storm! Once we got them off, and the nurse moved her around some, she went to sleep. I'm just sitting here watching her sleep. She has done fine with the Ritalin, no adverse reaction. I'm not sure if the doctor will go up on it, I think we'll find out tomorrow.
I thought you all might find interesting the email I got today from Dr Sear's assistant. In it he writes about the need for safe pure fish oil.
I thought you all might find interesting the email I got today from Dr Sear's assistant. In it he writes about the need for safe pure fish oil.
Good evening Everyone,
You may have heard me say Omega Rx 2 is a remarkable product. It can help athletes perform significantly better, improve moods, reduce pain as well as provide many other health benefits - and most of you have confirmed this by taking it yourself. One thing I may have not talked about to you about is the purity of Omega Rx 2. Purity matters because the ocean is full of toxins and so are the fish. If you don't eliminate these toxins, in particular PCB's, during manufacturing, they end up in your body! Of course, every company will tell you what level of toxins in in their capsules, right? Don't bet on it!
THE FISH OIL STANDARD - OMEGA RX2
In 2002, Dr. Sears wrote the Omega Rx Zone (I highly recommend you read this). This book describes the amazing clinical benefits of omega 3 fatty acids, which pioneered and launched the fish oil/omega 3 industry. Prior to this, there was no availability of any high concentration, low toxicity omega 3 supplements. At this point, Dr. Sears also initiated lab testing for fish oils to hold manufacturers and production companies accountable for the purity of their products - particularly PCB's and OXIDATION. In fact, some are considered unsuitable for human consumption based on World Health Organization standards! As you can imagine, not many companies were willing to do this because they would fail miserably - and chances are, if you have taken fish oil (other than Omega Rx) over the years, it's not so pure!
Fast forward a decade and the same sad situation for omeg-3 fatty supplements is still true. Since there is no real accountability for quality, rancidity and freshness at the highest levels, marketing companies can make any statement they want with regard to purity. It is really a BUYER BEWARE market! Luckily, Dr. Sears has stepped up the quality control to maximize purity. There is no fish oil product in the world, with or without a prescription, that meets the same purity standards as Omega Rx2!
WHAT ARE PCB'S?
Polychlorinated biphenols are insulators for electronic transformers made by General Electric. They were first produced in 1930, peaked production in 1960 and finally banned in 1977 due to their toxic nature. However, they are still in every part of every ocean in the world since they are virtually indestrucible. In the body they act as neurotoxins, carcinogens, endocrine disruptors. Probably not something you want in high quantities in your body. Unfortunately, these PCB's are found in every fish and therefore fish oil sold today. We have set the purity standards to bring them to trace levels, but you might want to be weary of other brands that don't!
CALIFORNIA STANDARD FOR PCB'S - PROP 65
In 2002, California set an allowable upper limit for fish oil to contain PCB's. Despite this new law, a number of COMPANIES still sell tainted fish oil and were finally held accountable. However, they did not make them remove their product from the shelves. Actually, the level they set for acceptability is still very high at 90 parts per billion and yet they couldn't meet these standards! I think as close to zero would be a much more acceptable level!
Coincidently, when you purchase OMEGA RX 2 from Zone Health, you will always have extremely low, if not undetectable, levels of PCB's. To validate this claim, you can download an analysis of this batch of Omega Rx 2. CLICK HERE and then click on "Ingredients Q & A". Here you will see reality and truth of fish oil purity. If you want to define quality, this is it!
*I have attached a copy of the analysis for your viewing pleasure!
5 DIRTY SECRETS OF THE FISH OIL INDUSTRY - A MUST READ!!!
In this article, you will read about the dark secrets of the fish oil industry and what they won't tell you! In addition, there are additional links that confirm the quality of Omega Rx 2 with third party lab testing. Honestly, this info completely separates every other fish oil in the world. There is no purer, period!
WHY NOT EAT FISH
Fish may sound like a good idea but it still comes from the ocean and is laced with toxins. As many of you know, it is not recommended that pregnant women consume more than 2 servings per week. This is a powerful statement and gives you an idea about the junk in our fish supply!
CONCLUSIVE RATIO!
To not balance your omega 3 and omega 6 fatty acid intake, is like playing Russian Roulette with your health. Unfortunately, omega 6 fatty acids are everywhere in the food you eat and drive inflammation - which contributes to chronic disease, pain, moods, poor athletic performance, etc. Fish is one of the main sources of omega 3 fatty acids but you would need to consume 7 pounds of lobster, or two pounds of tuna, or 6 oz. of salmon a day to equal 2.5 grams of EPA & DHA ; the minimum recommended by Dr. Sears. Considering that omega 3's are essential to human health, means you need to consume a quality supplement, free of toxins!
My next email will be why we need omega 3 fatty acids and how the dietary balance of omega 6 to omega 3 ratio can determine your risk of heart disease as well as other potential chronic diseases. Have a great week and here's to your health!
Paul Wilk
Zone Health Associate
949.212.1123
If you are interested you can click on the top right side of my blog above the videos and there is a link to Dr Sear's website.
I enjoy his emails and always learn from them!
Let me tell you the funniest thing today....I was CRAVING coffee and a doughnut. I'm not a big coffee drinker nor do I really like sweets too much...but I was CRAVING it! So I passed a Dunking Doughnuts on my way to the hospital and had to turn around. When I was in the turn lane I realized the DD was right next to a porn shop! LOL so the traffic is horrible and all I could think of was it looked like I was heading into the porn shop....me in the Mommy van with all the kiddo stickers on back!!! I was dying by the time I got into the Dunking Doughnut's parking lot and wasn't sure if I really wanted coffee from a place next to a porn shop!
Sunday, January 13, 2013
Day 70 Fish OIl study
We decided to stay overnight at home so we have been working on projects this afternoon. Most have annoyed me! I went to two different pharmacies to get Selah's meds ( to have them once she is home ) and just got the total runaround....So still don't have them in place. I have a million little crappy "projects:" that only I can do like fax insurance/prescription cards...etc....so annoying. I feel like I"m getting NOTHING done! I need to make a list and just go down it. That is the only thing that works for me.
Selah has done fine, no more elevated heart rates. No issues...it's just hard for me to be away from her. I feel torn in a million directions, being so far from home, there are so many things that need to be taken care of here when I am home! Probably tomorrow they will up her dose on Ritalin and see how she does. We hope to be up and rolling early! We will be up...rolling is a bit hard with all the kids!
Had a good service today. Our music minister sang a grouping of some of the old "Sunday night revival songs" One was a childhood favorite "Getting Ready to Leave this World" and there were a few more ALL I knew but now can't remember them LOL I have no brains or memory left...that is why I make lists! Every Sunday I say I"m not going to church so I can get things done before we leave since we're just home Saturday night and Sunday morning but every week I go....and am glad to go....
PLEASE keep praying for Selah, pray this med will work on her. Pray the Fish OIl will continue to work on her but more than anything pray that God will have mercy and touch our daughter and heal her.
Selah has done fine, no more elevated heart rates. No issues...it's just hard for me to be away from her. I feel torn in a million directions, being so far from home, there are so many things that need to be taken care of here when I am home! Probably tomorrow they will up her dose on Ritalin and see how she does. We hope to be up and rolling early! We will be up...rolling is a bit hard with all the kids!
Had a good service today. Our music minister sang a grouping of some of the old "Sunday night revival songs" One was a childhood favorite "Getting Ready to Leave this World" and there were a few more ALL I knew but now can't remember them LOL I have no brains or memory left...that is why I make lists! Every Sunday I say I"m not going to church so I can get things done before we leave since we're just home Saturday night and Sunday morning but every week I go....and am glad to go....
PLEASE keep praying for Selah, pray this med will work on her. Pray the Fish OIl will continue to work on her but more than anything pray that God will have mercy and touch our daughter and heal her.
Saturday, January 12, 2013
Day 69 Fish OIl Study
This morning we went to see Selah. We took her outside for some sun and we fed the ducks in the outdoor pond. Sam threw in a whole piece of bread and the ducks loved him. Selah seems to enjoy being outside. We are so looking forward to her being home where we can take her outside daily.
She was started on the Ritalin at 8 am today. The doctor will start her slowly and see how she does. She did get upset this afternoon after her splints had been on her arms for 1.5 hours. The nurse removed them and held her for a few minutes and she calmed down. We don't think that was caused by the Ritalin but it will be watched closely. Please pray that she will respond to this medication.
We drove home and went to see Jon's dad. It was his 85th bday! What a wonderful father in law he has been to me all these years! My mother in law was the greatest also and we miss her. She was killed in a car accident only a few months after Jon & I got married. I often think how different life would be if she had not had the accident..... You never know what tomorrow holds, love your family and hold them close while you can.
So we finally got home late tonight and found ALL our "left over" things ~ things we couldn't get packed int our car waiting for us! Thank you RMH for mailing all that to us, it was like a little Christmas:) We weren't sure what was in there LOL!
Well I had some great photos but my blog is not being cooperative...maybe tomorrow!
Thanks for all your prayers!!!!
She was started on the Ritalin at 8 am today. The doctor will start her slowly and see how she does. She did get upset this afternoon after her splints had been on her arms for 1.5 hours. The nurse removed them and held her for a few minutes and she calmed down. We don't think that was caused by the Ritalin but it will be watched closely. Please pray that she will respond to this medication.
We drove home and went to see Jon's dad. It was his 85th bday! What a wonderful father in law he has been to me all these years! My mother in law was the greatest also and we miss her. She was killed in a car accident only a few months after Jon & I got married. I often think how different life would be if she had not had the accident..... You never know what tomorrow holds, love your family and hold them close while you can.
So we finally got home late tonight and found ALL our "left over" things ~ things we couldn't get packed int our car waiting for us! Thank you RMH for mailing all that to us, it was like a little Christmas:) We weren't sure what was in there LOL!
Well I had some great photos but my blog is not being cooperative...maybe tomorrow!
Thanks for all your prayers!!!!
Friday, January 11, 2013
Day 68 Fish OIl Study ( and book review)
Today Jon took the day shift and spent the day with Selah. He was able to take her outside and she seemed very content. We have been reading and discussing various meds that have shown some improvements in some patients. We have decided to try her on Ritalin. It works on a child like Selah differently tha it does on a child that has ADD. In a child like Selah it has shown to help make them more alert. The other med we tried a few weeks ago didn't work at all but this works differently on the brain so maybe it will help her.
Jon came and picked us up and we went to this great place called Town Center...oh my....lots of places to eat and stores. I got a manicure/pedicure....and just like the Russian lady who cut my hair that day before Christmas when I was so down....the lady who did my mani/pedi was a Vietnamese Christian. She wrote our names down in her bible to pray for Selah. She kept telling me "not to worry I will pray now every day" While my nails were drying ( my REAL nails btw! Nothing like a bit of MRSA to keep my hands out of my mouth LOLOLOL) she came around and gave me a massage and I could hear her praying under her breath....it took all the self control I had not to just bawl my eyes out.... I love God's people!
Jon found the best book at Barnes & Noble! http://www.amazon.com/The-Grace-Effect-Corruption-Unbelief/dp/1595554408 The Grace effect by Larry Alex Taunton
IF you have ever adopted or plan to adopt from Ukraine this is such a great book! You will find yourself standing in the hallway of the SDA....it talks about the corruption and the "gifts" or bribes...(yes for the record we did knowingly give a "gift" LOL at that point we were at, it was a NO brainer!! And we would do it again in a heartbeat!) So many of the descriptions just brought back so many many memories. I LOVE Ukraine despite all of its problems. I didn't feel like that about China. But Ukraine got in my heart!
This writer Larry Alex Taunton is a apologist and he regularly debates the "new atheists" like Christopher Hitchens (before his death) So this book also is about the GRACE of God in an orphan's life and shows how ONLY Christianity reaches out to the world to change it! What a GREAT book!!!! I was fightig tears throughout is as I sat in Selah's room tonight reading it....
So since Jon did the day I stayed with her late tonight. She was unusually alert for the time and she watched her DVD of Baby Praise intently! I felt like she wanted to be held and she did:) I sat her up and pulled her into my lap and she just got so calm. Later I had her torso supported by my knees and she totally held her head up for quite a while! She would need some assistance at times but did better than I have seen her do since we have been in Florida! After I put her to bed, I went and found the nurse, I actually thought maybe they had already started the Ritalin and she was responding! But it doesn't start till tomorrow morning. I was just thrilled with her alertness and how she would look me in the eye. One thing that really bothered me is her arms were so tight tonight. They were drawn up to her sides and bent in. I did alot of ROM (range of Motion) and ticked her off good! She has 100% ROM but she just goes back to that position. Jon said she was not tight when he was there and that the therapists remarked on how loose she was. Tone is a funny thing!
Please pray that Ritalin will help Selah......we will not quit praying or trying to find medical help for her ever! Sometimes it is trial and error. But we will try things that have sciectific data supporting some positive changes in patients like Selah. I'm not a big drug fan but at this point, we will try things and see how she reacts! There are a few more drugs to try that have brought help to some children. But we hope this one will help her!
Jon came and picked us up and we went to this great place called Town Center...oh my....lots of places to eat and stores. I got a manicure/pedicure....and just like the Russian lady who cut my hair that day before Christmas when I was so down....the lady who did my mani/pedi was a Vietnamese Christian. She wrote our names down in her bible to pray for Selah. She kept telling me "not to worry I will pray now every day" While my nails were drying ( my REAL nails btw! Nothing like a bit of MRSA to keep my hands out of my mouth LOLOLOL) she came around and gave me a massage and I could hear her praying under her breath....it took all the self control I had not to just bawl my eyes out.... I love God's people!
Jon found the best book at Barnes & Noble! http://www.amazon.com/The-Grace-Effect-Corruption-Unbelief/dp/1595554408 The Grace effect by Larry Alex Taunton
IF you have ever adopted or plan to adopt from Ukraine this is such a great book! You will find yourself standing in the hallway of the SDA....it talks about the corruption and the "gifts" or bribes...(yes for the record we did knowingly give a "gift" LOL at that point we were at, it was a NO brainer!! And we would do it again in a heartbeat!) So many of the descriptions just brought back so many many memories. I LOVE Ukraine despite all of its problems. I didn't feel like that about China. But Ukraine got in my heart!
This writer Larry Alex Taunton is a apologist and he regularly debates the "new atheists" like Christopher Hitchens (before his death) So this book also is about the GRACE of God in an orphan's life and shows how ONLY Christianity reaches out to the world to change it! What a GREAT book!!!! I was fightig tears throughout is as I sat in Selah's room tonight reading it....
So since Jon did the day I stayed with her late tonight. She was unusually alert for the time and she watched her DVD of Baby Praise intently! I felt like she wanted to be held and she did:) I sat her up and pulled her into my lap and she just got so calm. Later I had her torso supported by my knees and she totally held her head up for quite a while! She would need some assistance at times but did better than I have seen her do since we have been in Florida! After I put her to bed, I went and found the nurse, I actually thought maybe they had already started the Ritalin and she was responding! But it doesn't start till tomorrow morning. I was just thrilled with her alertness and how she would look me in the eye. One thing that really bothered me is her arms were so tight tonight. They were drawn up to her sides and bent in. I did alot of ROM (range of Motion) and ticked her off good! She has 100% ROM but she just goes back to that position. Jon said she was not tight when he was there and that the therapists remarked on how loose she was. Tone is a funny thing!
Please pray that Ritalin will help Selah......we will not quit praying or trying to find medical help for her ever! Sometimes it is trial and error. But we will try things that have sciectific data supporting some positive changes in patients like Selah. I'm not a big drug fan but at this point, we will try things and see how she reacts! There are a few more drugs to try that have brought help to some children. But we hope this one will help her!
Another chance to give!
http://www.followingwheregodleadsus.blogspot.com/
I just gave to this little guy's family and it was a pain to redo all the paypal stuff but I'm so glad I did! they need $12,000 to finish thier adoption of this little guy from Russia. they've past court and are thankful that their adoption will proceed! Can I encourage you all give? My blog has about 4000 hits a day...if all my readers would take the time to go and give just $3, their need would be met!!!
I chose to give because of all the love that has been shown to our family, I wanted to pass it on!!! Giving to this family would be a "good thing" to get this little guy home and to the medical help he will need soon to save his life!
I posted his info back awhile ago and then it was unclear if the family would be allowed to finish their adoption, but thank God they will be!!!
Just click on their link and look on the right side of their blog and you can see the "chip in" section where you can give!!!
Just click on their link and look on the right side of their blog and you can see the "chip in" section where you can give!!!
God bless you!!!
My Real Life
“The great thing is, if one can, to stop regarding all the unpleasant things as interruptions in one's "own" or "real" life. The truth is, of course, that what one regards as interruptions are precisely one's life.” ~C. S. Lewis
When I saw this quote, I couldn't help but think of my life......and the title of my blog. Back four years ago when I started my blog, I really had an issue coming up with a name for it. I asked my brother in law, Jim because he is really good with words and he came up with some funny names like "Yvonne's Yarns" . But this title came to me, because I live a real life....well I didn't know how real my life was going to get!
We are tempted to think "when I do this" or "when I finish this" my life will really be perfect. But it never is "perfect" it's just life. I'm atidy person (OCD person) so I always feel like life is perfect if my house/yard is clean, closets straighten, garden done, kids clean and in perfectly ironed and matching clothes with fresh hair cuts.....so with all these kids, that rarely happens.... Living out of a Ronald McDonald House, or a hotel room, with a child in the hospital, and kids wearing whatever happens to be clean, and me going over two months on a manicure, and a husband who needed a hair cut two weeks ago would not be my idea of "life" it would be more my idea of an "interruption"of my life! But guess what? THIS is my life like it or not!
And where/what ever you find yourself in, is your life, like it or not! Personally I'd prefer things to be different in my life but I don't want another life.... So we all have to make the best of where we are.... You only get one life. Don't waste your life by wishing it away. Do the best with the life you have.
I love hearing stories of folks who took the "talents in their hands" , their lives and did great things for God. Even when there did not seem much "in their hands" I recently read in the book "Reckless Faith" of families who had nothing yet would take kids in their homes to raise them. I read of an older retired man who started a church in the worst area of a Mexican town,they used the talents in his hands, worked within their circumstances to do great things for God. That is what I want to do!
I have dreams in my heart that may never be fulfilled now....but that doesn't mean I'm just going to "lay down and die" I may never get the chance to work overseas, run an orphanage, but I'm going to serve God where I am at by serving my family and being open to whatever God brings across my path.
So I encourage you, use what is in your hands for God. It may not seem like much, but God can take your faithfulness and make it a story that will encourage others ......
When I saw this quote, I couldn't help but think of my life......and the title of my blog. Back four years ago when I started my blog, I really had an issue coming up with a name for it. I asked my brother in law, Jim because he is really good with words and he came up with some funny names like "Yvonne's Yarns" . But this title came to me, because I live a real life....well I didn't know how real my life was going to get!
We are tempted to think "when I do this" or "when I finish this" my life will really be perfect. But it never is "perfect" it's just life. I'm a
And where/what ever you find yourself in, is your life, like it or not! Personally I'd prefer things to be different in my life but I don't want another life.... So we all have to make the best of where we are.... You only get one life. Don't waste your life by wishing it away. Do the best with the life you have.
I love hearing stories of folks who took the "talents in their hands" , their lives and did great things for God. Even when there did not seem much "in their hands" I recently read in the book "Reckless Faith" of families who had nothing yet would take kids in their homes to raise them. I read of an older retired man who started a church in the worst area of a Mexican town,they used the talents in his hands, worked within their circumstances to do great things for God. That is what I want to do!
I have dreams in my heart that may never be fulfilled now....but that doesn't mean I'm just going to "lay down and die" I may never get the chance to work overseas, run an orphanage, but I'm going to serve God where I am at by serving my family and being open to whatever God brings across my path.
So I encourage you, use what is in your hands for God. It may not seem like much, but God can take your faithfulness and make it a story that will encourage others ......
Thursday, January 10, 2013
Day 67 Fish Oil Study
Selah has had a good day today. She was alert in therapy, no storming now for a week. She is resting good tonight.
So long day dealing with insurances.....We were denied coverage by Blue Cross for her to stay here past Friday morning. Yesterday we appealed but today we found we were denied the appeal. At the same time we have been appealing to Medicaid, her secondary insurance for nursing care ( BC does not do full time nursing) Today we found out that Medicaid will cover her stay her until the nursing issue is resolved. I filled out an in depth schedule for Jon and myself today to show our need for 24/7 nursing. It made me tired LOL. It looks like we have an agency to work with us. We have worked with some really nice folks, even the ones at Blue Cross that turned us down:) The Pasco Co Medicaid office has really worked hard on our case and are very sympathetic towards our complex situation. Usually I'm a mess trying to work out things like this (not that I have ever had a situation like this before thank God!) but I've had a peace even though everyone around me has been quite negative towards our need of 24/7 nursing, telling me how it won't happen. Our case is unusual to say the least with two other handicapped kids but because of our situation we are finding the help we need. Nothing is for sure at this point but I've believed from the beginning that God knows what I can and can't do and what I already do with Sam and Sarah who are both severely handicapped. Some people say I make it look easy, and to be honest with the three little ones before the accident, it was easy for me. It was like having two toddlers and a baby. Well now that has changed alot. I believe God will provide what I need to be able to take care of all my children. I've had nothing but positive input today from the various offices that will have to decide the hours of nursing we will get. Our situation won't change over time because my little ones will always be "forever toddlers/babies" So unless Selah is healed, our nursing situation should stay the same.
We have made the decision to home school Shad and Steve for the rest of this school year. Steve will probably have to work through the summer also. We haven't had books since before Christmas but hopefully we will pick them up this weekend. We had been going back and to on this decision but we feel this new journey is too new and fragile for me to try and take the kids to school and Jon has to get back to work and will have no leave time to be able to transport them. It has worked so far this year and will work out for us.
During my hours on "hold" today I did find some studies on comas and bringing people out of them. I brought some of the info in and talked to her doctor about trying a few other drugs.. So we are going to look at trying a new one. There have been a few cases where there has been improvement, we will see..... I believe in medicine and believe that God gives doctors wisdom and caring hearts to want to ease human suffering. Just like we were blessed to find out about Dr Aquevella and his life long work on artificial corneas and now have a little boy that has some sight compared to being blind! I keep praying and hoping we will find another "Dr Aquevella" who has tried something new that works on brain injuries.
So a busy but productive day....thank you for your prayers and please continue to pray that everything will work out in our favor for Selah's nursing. Pray for Selah, pray that she will be healed! And we won't even need nursing! I'd be thrilled!!
So long day dealing with insurances.....We were denied coverage by Blue Cross for her to stay here past Friday morning. Yesterday we appealed but today we found we were denied the appeal. At the same time we have been appealing to Medicaid, her secondary insurance for nursing care ( BC does not do full time nursing) Today we found out that Medicaid will cover her stay her until the nursing issue is resolved. I filled out an in depth schedule for Jon and myself today to show our need for 24/7 nursing. It made me tired LOL. It looks like we have an agency to work with us. We have worked with some really nice folks, even the ones at Blue Cross that turned us down:) The Pasco Co Medicaid office has really worked hard on our case and are very sympathetic towards our complex situation. Usually I'm a mess trying to work out things like this (not that I have ever had a situation like this before thank God!) but I've had a peace even though everyone around me has been quite negative towards our need of 24/7 nursing, telling me how it won't happen. Our case is unusual to say the least with two other handicapped kids but because of our situation we are finding the help we need. Nothing is for sure at this point but I've believed from the beginning that God knows what I can and can't do and what I already do with Sam and Sarah who are both severely handicapped. Some people say I make it look easy, and to be honest with the three little ones before the accident, it was easy for me. It was like having two toddlers and a baby. Well now that has changed alot. I believe God will provide what I need to be able to take care of all my children. I've had nothing but positive input today from the various offices that will have to decide the hours of nursing we will get. Our situation won't change over time because my little ones will always be "forever toddlers/babies" So unless Selah is healed, our nursing situation should stay the same.
We have made the decision to home school Shad and Steve for the rest of this school year. Steve will probably have to work through the summer also. We haven't had books since before Christmas but hopefully we will pick them up this weekend. We had been going back and to on this decision but we feel this new journey is too new and fragile for me to try and take the kids to school and Jon has to get back to work and will have no leave time to be able to transport them. It has worked so far this year and will work out for us.
During my hours on "hold" today I did find some studies on comas and bringing people out of them. I brought some of the info in and talked to her doctor about trying a few other drugs.. So we are going to look at trying a new one. There have been a few cases where there has been improvement, we will see..... I believe in medicine and believe that God gives doctors wisdom and caring hearts to want to ease human suffering. Just like we were blessed to find out about Dr Aquevella and his life long work on artificial corneas and now have a little boy that has some sight compared to being blind! I keep praying and hoping we will find another "Dr Aquevella" who has tried something new that works on brain injuries.
So a busy but productive day....thank you for your prayers and please continue to pray that everything will work out in our favor for Selah's nursing. Pray for Selah, pray that she will be healed! And we won't even need nursing! I'd be thrilled!!
Persistent Vegatative State/ Pondering in my heart
Selah has been diagnosed in a persistent vegatative state (PVS) by the doctors here and was diagnosed in a minimally conscious state (MCS) by the doctors in NY. There is some difference in the two terms with MCS being better. It is still a coma state but not quite a coma. From what I read the patiets are still judged on the coma scale for the various testing models. Some would say a person in either state is not in a coma per se some would say the person still is to some degree....
If you read about either state, you will know that Selah is not expected to "come out" of this state. Basically a person has about a 6 month window to recover and if not, then it is highly unlikely.... Selah is almost at 5 months.....
There are times my heart breaks in a way I didn't know it could break. We went from no hope of her surviving to no hope of Selah coming back to us. She has progressed some, but I'm not stupid and I'm not a person who doesn't believe doctors either. Doctors make diagnoses based on what they and others have seen and usually they are right or close to right in their diagnoses. I'm not one of those foolish people who are always going around saying "Whose report will you believe? I will believe the report of the Lord" I do believe the report of the Lord BUT only if God has given me a report to believe..... the prophet Isaiah in Is 53 is telling the people a prophecy/God's words to them...The scripture actually reads:
If you read about either state, you will know that Selah is not expected to "come out" of this state. Basically a person has about a 6 month window to recover and if not, then it is highly unlikely.... Selah is almost at 5 months.....
There are times my heart breaks in a way I didn't know it could break. We went from no hope of her surviving to no hope of Selah coming back to us. She has progressed some, but I'm not stupid and I'm not a person who doesn't believe doctors either. Doctors make diagnoses based on what they and others have seen and usually they are right or close to right in their diagnoses. I'm not one of those foolish people who are always going around saying "Whose report will you believe? I will believe the report of the Lord" I do believe the report of the Lord BUT only if God has given me a report to believe..... the prophet Isaiah in Is 53 is telling the people a prophecy/God's words to them...The scripture actually reads:
Isaiah 53
New International Version (NIV)
53 Who has believed our message (or report)
and to whom has the arm of the Lord been revealed?
2 He grew up before him like a tender shoot,
and like a root out of dry ground.
He had no beauty or majesty to attract us to him,
nothing in his appearance that we should desire him.
3 He was despised and rejected by mankind,
a man of suffering, and familiar with pain.
Like one from whom people hide their faces
he was despised, and we held him in low esteem.
and to whom has the arm of the Lord been revealed?
2 He grew up before him like a tender shoot,
and like a root out of dry ground.
He had no beauty or majesty to attract us to him,
nothing in his appearance that we should desire him.
3 He was despised and rejected by mankind,
a man of suffering, and familiar with pain.
Like one from whom people hide their faces
he was despised, and we held him in low esteem.
4 Surely he took up our pain
and bore our suffering,
yet we considered him punished by God,
stricken by him, and afflicted.
and bore our suffering,
yet we considered him punished by God,
stricken by him, and afflicted.
In the gospel of John that verse is fulfilled by Jesus' coming....
John 12:38
New King James Version (NKJV)
38 that the word of Isaiah the prophet might be fulfilled, which he spoke:
“Lord, who has believed our report?
And to whom has the arm of the Lord been revealed
And to whom has the arm of the Lord been revealed
somehow the Pentecostals/Charismatics have made that Messianic prophecy into some type of "magical saying" and as long as they say they believe "the report of the Lord" then things will be reversed in their lives....Um...so sorry, that is not even a little good theology! It's not even quoting scripture correctly!
So that was our little correct theology lesson for today....
So in saying all of that, I'm talking about acceptance of Life....I accept Life...
On the other hand, I had a vivid dream right after the accident. I dreamed that Selah and I were home together alone. It seemed that it was really bad weather outside. It seemed that everyone was over at the church, maybe it was a Sunday morning. Anyhow in my dream, Selah "woke up" "became herself again" We were sitting in the living room area. She was still a small girl and it did not seem like a lot of time had passed. She was back cognitively in a way I understood her being Selah. However she could not walk but of course that didn't bother me in the dream! I don't know what that meant, if it meant anything more than an extensive of my hopes....I'm not claiming it was a dream that came from God, but we will know it was if that happens. It does seem interesting that even if Selah recovered cognitively, she will need surgery on her knees/ankles in order to walk again. At the time of the dream I had no idea of how her body would respond to the accident. I've held onto that hope now for almost 5 months.
So I don't know what the days ahead hold, as you can tell I'm in a reflective mood. Please pray for Selah and for our situation....I know so many of you are and we thank you for holding us all up to God!
Wednesday, January 9, 2013
Day 66 Fish Oil Study
Have you ever eaten crow? I may have to...got Selah's blood work back on the inflammation and she is at .6 that means she went down from 1.1 . Not at all what we were expecting. It does not line up with where she is at. She should not have regressed with the level going down. It is actually too low at this point and we are cutting back on her fish oil by 5 ml a dose!
She has had a great calm day although her tone seems high. We do not know what to think about this new info. We also did find out something else interesting, not only did the MRI show less damage in the white matter. Also the front of her brain looks better. How is that for me giving you the unscientific news? I don't have the report with me so it is hard to remember but it is a good thing.
With all this good news, I feel she should be doing better overall. We can't explain it. The hospital certainly ran every test to check on anything that could possibly be causing this regression. There is nothing....
Today we were told our primary insurance Blue Cross will not allow her to stay here past Friday...for some reason I am completely calm about this. No there is no nursing set up for her. There are lots of folks working on it. We have put in an appeal to BC so we are waiting on many people to get back to us. I don't know if this is supernatural or if I am past worrying ..... but it is very odd! Now I can not imagine taking her home on our own on Friday.....but.....
Today I finished the book "Reckless Faith" by Beth Guckenberger. I would recommend it....
In chapter 10 she writes
" Faith is the gas that makes your spiritual car go. How reckless can your faith actually get? It's measured by the extent to which you really believe God's plan for you is the best. It requires the kind of faith that believes that God's words are not empty promises, meant for someone else. It's the kind of faith that says "Everything will work out in the end"`even if "the end" is eternity.
Over and Over again God teaches me that for those with reckless faith, the story is never over. It's childish to throw in the towel, pout, get frustrated,or walk away. Life's isn't a puzzle that too hard or a toy you can't figure out. But so often, I'm tempted to lose faith when I'm confronted with a setback.
When I relax my control on the plot line of my life & give in to the journey God has prepared for me. I lose myself in all the great stories swirling around me. When I stomp my feet and say "that's not fair!" or "it wasn't supposed to happen this way" then I run out of gas and my spiritual journey stalls.
But God is teaching me, one child at a time, that He is the Author of life and can redeem and write any story He wants" (boldness added by me)
This particular passage really spoke to me. So much so I just typed it all out for you to read. It mirrors my heart right now.
You know my life wasn't supposed to be like this....this accident, these last 5 months away from home~ tomorrow is 5 months since we left home....now this, going home with a very sick little girl.... I serve God, I try to be faithful, I'm a good person... I've embraced the difficulties that God has allowed in my life believing it will work a bigger purpose.... Somewhere along the line, God could have stepped in....He could have changed things, but He didn't completely do what I wanted Him to do. I should be home right now getting supper but instead I'm in a hospital room with my husband sitting Selah up in her bed as her heart rate rises, my kids are at the hotel waiting for us....no this is not what I would have wanted...but I'm learning to let go... God is in control, He can write this story, I am not in control of how things work out.
When we were adopting the children, I knew that my life would change. There were a few times that I would have the feeling that "my life as I know it is over" but then I discovered, it really wasn't much different than the life we already had! Now I think it will be much much different.... I had decided that if God gave us the children, He would give me the grace to serve them the rest of my life. I thought serving would mean one thing...it's going to mean something quite different once we get home....It's scary...you have NO idea how afraid I am. I already have more responsibilities than most folks have and I've gladly embraced it. These new responsibilities....it is a scary thing. But the same God who prepared us for the two new little girls will prepare us for this next step. I have no doubt of that. Does that mean I am doing cartwheels down the hall? Not really! It is a heavy load on my shoulders and on my mind. In the natural, I have NO idea how things will all work out. Not just the few things we have to get clarification on but life, day to day....Life. I didn't ask for the life that lies ahead but I know one thing...I'm going to trust God and I'm going to serve Selah and my other children.
I'm learning to let God write the story of my life...as a young woman, I had a PLAN for my life, really a plan with 5 yr and 10 yr goals....and I met those goals.... Now I don't have a plan for tomorrow....we had a meeting today and I was asked "what's the plan?" I wanted to start laughing hysterically...I haven't had a plan for the last 5 months and not much of one before that! I've been "winging it" for the pat year, not knowing where I'd be the next week.
I'm not saying NOT to have a plan for your life don't get me wrong! But I'm just sharing what I'm learning in my life.
So the "story is not over " for us or for Selah! I don't know what the story will read but it's not over yet....
Please pray for us and Selah!
She has had a great calm day although her tone seems high. We do not know what to think about this new info. We also did find out something else interesting, not only did the MRI show less damage in the white matter. Also the front of her brain looks better. How is that for me giving you the unscientific news? I don't have the report with me so it is hard to remember but it is a good thing.
With all this good news, I feel she should be doing better overall. We can't explain it. The hospital certainly ran every test to check on anything that could possibly be causing this regression. There is nothing....
Today we were told our primary insurance Blue Cross will not allow her to stay here past Friday...for some reason I am completely calm about this. No there is no nursing set up for her. There are lots of folks working on it. We have put in an appeal to BC so we are waiting on many people to get back to us. I don't know if this is supernatural or if I am past worrying ..... but it is very odd! Now I can not imagine taking her home on our own on Friday.....but.....
Today I finished the book "Reckless Faith" by Beth Guckenberger. I would recommend it....
In chapter 10 she writes
" Faith is the gas that makes your spiritual car go. How reckless can your faith actually get? It's measured by the extent to which you really believe God's plan for you is the best. It requires the kind of faith that believes that God's words are not empty promises, meant for someone else. It's the kind of faith that says "Everything will work out in the end"`even if "the end" is eternity.
Over and Over again God teaches me that for those with reckless faith, the story is never over. It's childish to throw in the towel, pout, get frustrated,or walk away. Life's isn't a puzzle that too hard or a toy you can't figure out. But so often, I'm tempted to lose faith when I'm confronted with a setback.
When I relax my control on the plot line of my life & give in to the journey God has prepared for me. I lose myself in all the great stories swirling around me. When I stomp my feet and say "that's not fair!" or "it wasn't supposed to happen this way" then I run out of gas and my spiritual journey stalls.
But God is teaching me, one child at a time, that He is the Author of life and can redeem and write any story He wants" (boldness added by me)
This particular passage really spoke to me. So much so I just typed it all out for you to read. It mirrors my heart right now.
You know my life wasn't supposed to be like this....this accident, these last 5 months away from home~ tomorrow is 5 months since we left home....now this, going home with a very sick little girl.... I serve God, I try to be faithful, I'm a good person... I've embraced the difficulties that God has allowed in my life believing it will work a bigger purpose.... Somewhere along the line, God could have stepped in....He could have changed things, but He didn't completely do what I wanted Him to do. I should be home right now getting supper but instead I'm in a hospital room with my husband sitting Selah up in her bed as her heart rate rises, my kids are at the hotel waiting for us....no this is not what I would have wanted...but I'm learning to let go... God is in control, He can write this story, I am not in control of how things work out.
When we were adopting the children, I knew that my life would change. There were a few times that I would have the feeling that "my life as I know it is over" but then I discovered, it really wasn't much different than the life we already had! Now I think it will be much much different.... I had decided that if God gave us the children, He would give me the grace to serve them the rest of my life. I thought serving would mean one thing...it's going to mean something quite different once we get home....It's scary...you have NO idea how afraid I am. I already have more responsibilities than most folks have and I've gladly embraced it. These new responsibilities....it is a scary thing. But the same God who prepared us for the two new little girls will prepare us for this next step. I have no doubt of that. Does that mean I am doing cartwheels down the hall? Not really! It is a heavy load on my shoulders and on my mind. In the natural, I have NO idea how things will all work out. Not just the few things we have to get clarification on but life, day to day....Life. I didn't ask for the life that lies ahead but I know one thing...I'm going to trust God and I'm going to serve Selah and my other children.
I'm learning to let God write the story of my life...as a young woman, I had a PLAN for my life, really a plan with 5 yr and 10 yr goals....and I met those goals.... Now I don't have a plan for tomorrow....we had a meeting today and I was asked "what's the plan?" I wanted to start laughing hysterically...I haven't had a plan for the last 5 months and not much of one before that! I've been "winging it" for the pat year, not knowing where I'd be the next week.
I'm not saying NOT to have a plan for your life don't get me wrong! But I'm just sharing what I'm learning in my life.
So the "story is not over " for us or for Selah! I don't know what the story will read but it's not over yet....
Please pray for us and Selah!
Tuesday, January 8, 2013
Day 65 Fish Oil Study
Selah had a good day today. She got very angry when we put her arms splint on. She did something we had never seen her do. She raised her arm, with elbow bent and brought it down several times. like a judge would! She evidently got so mad that her heart rate went up to the 160s but since it was because she was upset, she calmed down after the splints were taken off. We are using these splints because at times her hands/arms are drawing in. Last week we had that odd episode where her arm was out to the side. That was very unusual and hasn't happened again. If anything she tends to draws her elbow in towards her sides. We first noticed it right before we left NY but it has gotten worse on some days. She did prior to the accident, have a strange way she held her arms. It caused her to be diagnosed with Cerebral Palsy in Ukraine. Our pediatrician and the therapists who evaluated her when we got home did not feel she had CP, she had full range of motion she just had an unusual way of moving. At first we thought she was just putting her arms/hands into the old positions but it seems she has gone beyond those positions.
Last night I bought several of the heat up thingys....Selah had some cute ones that I had bought up in NY. But she had an accident on them and they had to be thrown away. I found her 2 that are like long scarfs that can be wrapped around her legs. I also got a heat up neck pillow. Today I warmed them up and used them on her legs. She sat up in her chair for about 45 minutes working with the heat up pillows. I was able to get some good range of motion on her legs. When she sits up in the car seat, gravity helps bring her legs down into a more normal position. Then the heat and weight of the pillows help her legs relax some.
We are still waiting for the MRI results, we were in and out today so we missed getting the copy. We are also waiting on the blood test results.
We have been waiting on get Selah's nursing set up. Since we live in a rural area, it has been difficult to say the least! We've had a social worker here working hard on it for weeks and she has just been given the run around by different agencies. So today I called the Governor's office....I was listened to and then sent to the head of the Medicaid dept there in Tallahassee. The person I spoke to said our case was serious and they would work on it. Within the hour I got a call from an administrative person in our county who assured me that would work on our case tomorrow (it was very close to 5 pm) Every agency has said because of where we live, they can't service her. Since they all have contracts with the State to care for patients within our county, there is some obligation to do that! I understand contracts with the state ....at one point I worked for a contracted agency and then later when I worked for the state, I worked with contracted agencies and did reviews on them. I also know what happened when we'd get a call from the Governor's office regarding a case.....we JUMPED! I know I worked within the criminal justice system but it is the same overall rules. So I'm not as worried as some might be over this...I feel like it will be resolved.
I'd been thinking about the flu vaccinations and read today how bad the flu season is this year so I found where we could get flu shots. We went to the Health Dept and we all got our shots. The nurses and the staff there were amazing and so kind. They got us in and out as fast as they could. We have been getting flu shots for years, all of us and never have had any issues. It's late in the season to get flu shots but we have been a bit busy. I would encourage you all to get your flu shot. I grew up not getting vaccinated for anything. I almost died from the whooping cough, I was sick for months and months. I had every childhood disease....it was AWFUL! I am the absolute opposite of my family, my kids get every vaccine out there! None of my kids have ever had any problems from any shot, not even a fever.... And even if they did have a slight reaction, it is still worth it to be protected!!! And my poor adopted kids....they come home and go to the doctor and their first visit included 6-7 shots!! Today we were even able to get Sarah's Hep A and B boosters! She wasn't too thrilled with it!
We had some friends come over tonight and then we finished the night watching "Domesday Preppers" ~ my favorite show:) And then Diggers, makes me want to go buy a metal detector! Looks like fun!
Several folks have asked about my back/shoulders. I am still having problems with it! A friend of a friend sent me a gift for me to go and get a massage and I did last week at http://www.southerncomforttherapeuticmassage.com/# thank you friend! And thank you Southern Comfort, I had some relief for awhile! Jon wants me to go to the doctor but honestly I don't even know where to start....maybe if we ever get home..... I hope to go back to Southern Comfort thanks to my friend's generous gift!!!
Please pray for Selah...she is still not at the point she was at before we moved her. We are wondering more and more if the regression is not tied to her whole institutional autism. Could she be so upset from the move that she has regressed? That certainly doesn't seem to explain everything....I just want to get her home but I want to be safe about it. I know my limitations....I'm only one person, Jon works two jobs and can be called in to the prison for an emergency ( and has been called in numerous times) and of course as a pastor, he has to be ready to go to member's if they need him! We need reliable nursing care!
Just pray for her, we want her to interact with us more, we want her back to "SELAH" We need God's mercy!!!
Last night I bought several of the heat up thingys....Selah had some cute ones that I had bought up in NY. But she had an accident on them and they had to be thrown away. I found her 2 that are like long scarfs that can be wrapped around her legs. I also got a heat up neck pillow. Today I warmed them up and used them on her legs. She sat up in her chair for about 45 minutes working with the heat up pillows. I was able to get some good range of motion on her legs. When she sits up in the car seat, gravity helps bring her legs down into a more normal position. Then the heat and weight of the pillows help her legs relax some.
We are still waiting for the MRI results, we were in and out today so we missed getting the copy. We are also waiting on the blood test results.
We have been waiting on get Selah's nursing set up. Since we live in a rural area, it has been difficult to say the least! We've had a social worker here working hard on it for weeks and she has just been given the run around by different agencies. So today I called the Governor's office....I was listened to and then sent to the head of the Medicaid dept there in Tallahassee. The person I spoke to said our case was serious and they would work on it. Within the hour I got a call from an administrative person in our county who assured me that would work on our case tomorrow (it was very close to 5 pm) Every agency has said because of where we live, they can't service her. Since they all have contracts with the State to care for patients within our county, there is some obligation to do that! I understand contracts with the state ....at one point I worked for a contracted agency and then later when I worked for the state, I worked with contracted agencies and did reviews on them. I also know what happened when we'd get a call from the Governor's office regarding a case.....we JUMPED! I know I worked within the criminal justice system but it is the same overall rules. So I'm not as worried as some might be over this...I feel like it will be resolved.
I'd been thinking about the flu vaccinations and read today how bad the flu season is this year so I found where we could get flu shots. We went to the Health Dept and we all got our shots. The nurses and the staff there were amazing and so kind. They got us in and out as fast as they could. We have been getting flu shots for years, all of us and never have had any issues. It's late in the season to get flu shots but we have been a bit busy. I would encourage you all to get your flu shot. I grew up not getting vaccinated for anything. I almost died from the whooping cough, I was sick for months and months. I had every childhood disease....it was AWFUL! I am the absolute opposite of my family, my kids get every vaccine out there! None of my kids have ever had any problems from any shot, not even a fever.... And even if they did have a slight reaction, it is still worth it to be protected!!! And my poor adopted kids....they come home and go to the doctor and their first visit included 6-7 shots!! Today we were even able to get Sarah's Hep A and B boosters! She wasn't too thrilled with it!
We had some friends come over tonight and then we finished the night watching "Domesday Preppers" ~ my favorite show:) And then Diggers, makes me want to go buy a metal detector! Looks like fun!
Several folks have asked about my back/shoulders. I am still having problems with it! A friend of a friend sent me a gift for me to go and get a massage and I did last week at http://www.southerncomforttherapeuticmassage.com/# thank you friend! And thank you Southern Comfort, I had some relief for awhile! Jon wants me to go to the doctor but honestly I don't even know where to start....maybe if we ever get home..... I hope to go back to Southern Comfort thanks to my friend's generous gift!!!
Please pray for Selah...she is still not at the point she was at before we moved her. We are wondering more and more if the regression is not tied to her whole institutional autism. Could she be so upset from the move that she has regressed? That certainly doesn't seem to explain everything....I just want to get her home but I want to be safe about it. I know my limitations....I'm only one person, Jon works two jobs and can be called in to the prison for an emergency ( and has been called in numerous times) and of course as a pastor, he has to be ready to go to member's if they need him! We need reliable nursing care!
Just pray for her, we want her to interact with us more, we want her back to "SELAH" We need God's mercy!!!
Monday, January 7, 2013
Day 64 FOS~ 7 years Gotch Day for Shad!
GREAT news today....sit down:) Not only is Selah doing much better~no storming~ sat in car seat for almost 2 hours while I did range of motion and stayed calm... BUT her regular doctor was back and gave us more info on her MRI. There is IMPROVEMENT in her brain since the last MRI done back in early November before the start of the fish oil study!!!!!!!!!!! I've asked for a copy of the MRI report so I can explain it better and figure out what it means but I got the impression that this was not a usual occurrence:) I believe the improvement is in the white matter area/PVL which is great! I'll have more details tomorrow.
Her blood work got to the lab too late to be ran today but we should have the results of it tomorrow also, regarding the inflammation level. Right now we know things are being done correctly and we can tell from how well she is doing. When we started the fish oil in NY, there was overnight improvement as far as no storming and a calmness/alertness. It seems to be like that again.
I am so thankful that last week is over. Last Thursday night I could not have felt any lower and hopeless....thank you for your prayers! They gave us the strength to get back up and keep going. I am so thankful for God's presence. Living like we are, it's not like I have much "alone time" so I've learned just to reach out to God in my heart, even when I'm busy doing something else. I just kept calling on God, just like on the day of the accident...."Oh God Help".... and He did! Sure we opened a new bottle of fish oil BUT He had helped me already! If I didn't have Him with me last Friday when Selah was storming & vibrating all day I could not have stayed at the hospital but we made it through and then on Friday night opened the new bottles and now things are so much better again. So we think somehow the fish oil or the mixing agent get contaminated during the two weeks or so it is used, that's why we see these big improvements when a new bottle is open. We never had this problem before, and don't feel it is the fish oil but the way it is handled. We think it all has been resolved now.
Tonight I realized that today is Shad's "GOTCHA DAY" Today marks 7 years, right about this time that I met my little guy! (it was 9 am China time which is 12 hours ahead of EST- so actually I met him on the 8th in China but it was the 7 th here!)
This is Shad & me seconds after we met:) He looks a little concerned....."are you my mother?" YES!!!!! I am!!!!!
I went to China alone. Sam was not yet 2 yrs old and got so sick so easily we were afraid for him to go and we were afraid to leave him and go by ourselves. Right at the end I almost took Steve but the swine flu was really bad that year and we just felt like it was the safest thing for me to go by myself. It made a woman out of me LOL! There was another couple there, the wife had her husband, her mom and her teenage son and she cried everyday...I thought I was going to have to slap her...for real!!!
It was a lonely time for me but an amazing one... walking into that cold Chinese orphanage and walking out with this funny little boy who'd stolen our hearts.....what an amazing day! I will never forget that day! I realized in just about 3 seconds that...
A. Shad wasn't completely blind
B. He probably wasn't mentally delayed either !!! (as he tried to take the lamp apart)
C. He liked to EAT!!!!
Shad's first American word was MORE as in "more food" he ate grown men under the table. He was the hit of the adoption group (as he always is the hit of any group) and the men liked to see how much he'd eat....Me....well I was changing the diapers (with WORMS in them) after all the eating...I QUIT eating LOLOL (for real~ saltines were it for me for about 2 weeks!)
Shad has been a blessing to our family. It's hard for me to remember he was actually adopted, it doesn't seem possible this kid,, that is so like his dad, came from the literal other side of the world! Chengdu China is almost exactly on the other side of the world from Florida! He is the life of any party and he has never met a stranger. Shad (short for Shadrach) has an incredible self confidence, he just walks up to people and starts conversations. He finds himself interesting and is sure that others do too! He has an unique ability to be himself and not feel under pressure to be any other way...I adore that about him! Shad has a way of dealing with life, that goes far beyond his 9 yrs. He is an "old soul" We've had some deep conversations about how he came to be adopted into our family. The first conversation came at just 4 yrs old...I wasn't ready.... but he has dealt with questions. I think of his birth parents and who they missed out on knowing...just because he was not "perfect" But we have been blessed to know and love him for these past 7 years. We're so glad he came into our lives.....we are the family that we are, because he is a part of it!
Shad had some gift cards to spend so we went Toys R Us and he bought himself some more Nerf Guns. He has quite the arsenal going!! Steve gave him a gift card of his and he was also able to get a Xbox Lego Game Batman 2 DC (has all the comic heroes in it) He is a happy boy tonight:) I also told him today was Christmas Day for Ukraine so he said he was helping them to celebrate:)
Today is also our 7th year anniversary of Jon pastoring GRACE CHURCH! Yes his first Sunday was actually the day ( Monday in China) I picked up Shad from the orphanage...Big day for the Clanton family!!!!!!
So tonight I am a thankful woman! Selah is doing much better and this is a great day to celebrate 7 yrs of Shad being our son!!!
Her blood work got to the lab too late to be ran today but we should have the results of it tomorrow also, regarding the inflammation level. Right now we know things are being done correctly and we can tell from how well she is doing. When we started the fish oil in NY, there was overnight improvement as far as no storming and a calmness/alertness. It seems to be like that again.
Tonight I realized that today is Shad's "GOTCHA DAY" Today marks 7 years, right about this time that I met my little guy! (it was 9 am China time which is 12 hours ahead of EST- so actually I met him on the 8th in China but it was the 7 th here!)
I went to China alone. Sam was not yet 2 yrs old and got so sick so easily we were afraid for him to go and we were afraid to leave him and go by ourselves. Right at the end I almost took Steve but the swine flu was really bad that year and we just felt like it was the safest thing for me to go by myself. It made a woman out of me LOL! There was another couple there, the wife had her husband, her mom and her teenage son and she cried everyday...I thought I was going to have to slap her...for real!!!
It was a lonely time for me but an amazing one... walking into that cold Chinese orphanage and walking out with this funny little boy who'd stolen our hearts.....what an amazing day! I will never forget that day! I realized in just about 3 seconds that...
A. Shad wasn't completely blind
B. He probably wasn't mentally delayed either !!! (as he tried to take the lamp apart)
C. He liked to EAT!!!!
Shad's first American word was MORE as in "more food" he ate grown men under the table. He was the hit of the adoption group (as he always is the hit of any group) and the men liked to see how much he'd eat....Me....well I was changing the diapers (with WORMS in them) after all the eating...I QUIT eating LOLOL (for real~ saltines were it for me for about 2 weeks!)
Shad has been a blessing to our family. It's hard for me to remember he was actually adopted, it doesn't seem possible this kid,, that is so like his dad, came from the literal other side of the world! Chengdu China is almost exactly on the other side of the world from Florida! He is the life of any party and he has never met a stranger. Shad (short for Shadrach) has an incredible self confidence, he just walks up to people and starts conversations. He finds himself interesting and is sure that others do too! He has an unique ability to be himself and not feel under pressure to be any other way...I adore that about him! Shad has a way of dealing with life, that goes far beyond his 9 yrs. He is an "old soul" We've had some deep conversations about how he came to be adopted into our family. The first conversation came at just 4 yrs old...I wasn't ready.... but he has dealt with questions. I think of his birth parents and who they missed out on knowing...just because he was not "perfect" But we have been blessed to know and love him for these past 7 years. We're so glad he came into our lives.....we are the family that we are, because he is a part of it!
Shad had some gift cards to spend so we went Toys R Us and he bought himself some more Nerf Guns. He has quite the arsenal going!! Steve gave him a gift card of his and he was also able to get a Xbox Lego Game Batman 2 DC (has all the comic heroes in it) He is a happy boy tonight:) I also told him today was Christmas Day for Ukraine so he said he was helping them to celebrate:)
Today is also our 7th year anniversary of Jon pastoring GRACE CHURCH! Yes his first Sunday was actually the day ( Monday in China) I picked up Shad from the orphanage...Big day for the Clanton family!!!!!!
So tonight I am a thankful woman! Selah is doing much better and this is a great day to celebrate 7 yrs of Shad being our son!!!
What is Ministry?
This is one of those posts that I've been rolling around in my head for awhile.....these are the kind that usually get me in trouble LOL....
What is ministry? Ask that to people and you'd get all kinds of answers....
Jon & I have always been "different" in our approach to ministry. We've just lived our life and it has happened. When we were younger we were taught the steps of "how to be in the ministry" but the steps didn't ever work for us because that wasn't who we were. Jon never "pushed" himself forward in ministry circles. When we were young, I used to encourage him to do "the things" all the young ministers did, go to meeting, "network" etc... I soon learned that wasn't going to happen with Jon. Not that he was disrespectful of others, he just had no time for it. He was too busy doing ministry to try and meet someones expectation of "ministry" He was doing the ministry no one else wanted to do. He didn't have to worry about competition LOL there were no lines of ministers waiting to go preach at the homeless shelters or the jails or at the little country churches! And that was where his heart was and is now!
I can't help but laugh sometimes at some of the various mailings and emails we get..."how to build your ministry"....is that too funny or what? Maybe I'm the only one who gets the irony of it.
We are not interested in being the CEO's of a ministry:) God didn't call anyone to "market" ministry, just to do it.....Sure you can work it and build numbers but is that truly ministry? When I see "ministers" who have body guards or "armor bearers" I have to roll my eyes and laugh, it's sick to me. If you are so important you can't spend time with folks in your congregation or who come to your meetings, I think it's time for an evaluation..... past time! God didn't call anyone to build empires!
God called us to faithfulness. He didn't call us to be "successful" by the world's standards. There is nothing wrong with growth! Don't get me wrong but our striving should be after what God wants than what brings us "validation" as a minister. I know plenty of pastors who will do just about anything to bring in people, "the ends justify the means" They will preach a sermon that doesn't challenge the congregation in order to keep folks... it's tempting as a pastor to skirt around various issues so you don't offend but just remember you aren't preaching your bible you are preaching God's bible and let the chips fall....
For example I have some dear friends who have chosen to live "inmoral lifestyles, I love them, I do not preach to them but I believe the bible teaches that is a sin. I didn't write the bible...God inspired "holy men of old" to write the inspired word of God. ( Read 1Timothy ) My thought is I chose to believe Gods word whether I like it or not. I live according to the bible, I don't try and make the bible say what I want it to say. Too many people today are afraid to have any standards. They say "who are you to say what is right or what is wrong?" I'm no one to say in myself to say what is right or what is wrong but I stand by the Word of God.
I hear the argument all the time that the bible was just written by men....usually that argument comes when you talk about something that someone doesn't like in the bible. But then that same person will quote the bible when it benefits him! Tha's not right....either take the WHOLE bible or don't take it at all. Don't pick and chose scripture.... I know folks who regularly sin ( according to the bible) but they ask for God's blessings in their lives. It's like they want only what they want from God without having to have any responsibility on their part! So many parts of scriptures have promises to us but they also come with requirements to get those promises...such as this verse
What is ministry? Ask that to people and you'd get all kinds of answers....
Jon & I have always been "different" in our approach to ministry. We've just lived our life and it has happened. When we were younger we were taught the steps of "how to be in the ministry" but the steps didn't ever work for us because that wasn't who we were. Jon never "pushed" himself forward in ministry circles. When we were young, I used to encourage him to do "the things" all the young ministers did, go to meeting, "network" etc... I soon learned that wasn't going to happen with Jon. Not that he was disrespectful of others, he just had no time for it. He was too busy doing ministry to try and meet someones expectation of "ministry" He was doing the ministry no one else wanted to do. He didn't have to worry about competition LOL there were no lines of ministers waiting to go preach at the homeless shelters or the jails or at the little country churches! And that was where his heart was and is now!
I can't help but laugh sometimes at some of the various mailings and emails we get..."how to build your ministry"....is that too funny or what? Maybe I'm the only one who gets the irony of it.
We are not interested in being the CEO's of a ministry:) God didn't call anyone to "market" ministry, just to do it.....Sure you can work it and build numbers but is that truly ministry? When I see "ministers" who have body guards or "armor bearers" I have to roll my eyes and laugh, it's sick to me. If you are so important you can't spend time with folks in your congregation or who come to your meetings, I think it's time for an evaluation..... past time! God didn't call anyone to build empires!
God called us to faithfulness. He didn't call us to be "successful" by the world's standards. There is nothing wrong with growth! Don't get me wrong but our striving should be after what God wants than what brings us "validation" as a minister. I know plenty of pastors who will do just about anything to bring in people, "the ends justify the means" They will preach a sermon that doesn't challenge the congregation in order to keep folks... it's tempting as a pastor to skirt around various issues so you don't offend but just remember you aren't preaching your bible you are preaching God's bible and let the chips fall....
For example I have some dear friends who have chosen to live "inmoral lifestyles, I love them, I do not preach to them but I believe the bible teaches that is a sin. I didn't write the bible...God inspired "holy men of old" to write the inspired word of God. ( Read 1Timothy ) My thought is I chose to believe Gods word whether I like it or not. I live according to the bible, I don't try and make the bible say what I want it to say. Too many people today are afraid to have any standards. They say "who are you to say what is right or what is wrong?" I'm no one to say in myself to say what is right or what is wrong but I stand by the Word of God.
I hear the argument all the time that the bible was just written by men....usually that argument comes when you talk about something that someone doesn't like in the bible. But then that same person will quote the bible when it benefits him! Tha's not right....either take the WHOLE bible or don't take it at all. Don't pick and chose scripture.... I know folks who regularly sin ( according to the bible) but they ask for God's blessings in their lives. It's like they want only what they want from God without having to have any responsibility on their part! So many parts of scriptures have promises to us but they also come with requirements to get those promises...such as this verse
16 Wash yourselves and be clean!
Get your sins out of my sight.
Give up your evil ways.
17 Learn to do good.
Seek justice.
Help the oppressed.
Defend the cause of orphans.
Fight for the rights of widows.
18 “Come now, let’s settle this,”
says the Lord.
“Though your sins are like scarlet,
I will make them as white as snow.
Though they are red like crimson,
I will make them as white as wool.
19 If you will only obey me,
you will have plenty to eat.
20 But if you turn away and refuse to listen,
you will be devoured by the sword of your enemies.
I, the Lord, have spoken!” Isaiah 1:16-20
Get your sins out of my sight.
Give up your evil ways.
17 Learn to do good.
Seek justice.
Help the oppressed.
Defend the cause of orphans.
Fight for the rights of widows.
18 “Come now, let’s settle this,”
says the Lord.
“Though your sins are like scarlet,
I will make them as white as snow.
Though they are red like crimson,
I will make them as white as wool.
19 If you will only obey me,
you will have plenty to eat.
20 But if you turn away and refuse to listen,
you will be devoured by the sword of your enemies.
I, the Lord, have spoken!” Isaiah 1:16-20
So I went from what is ministry to this ....but the point is to give a pure message, not a watered down one.
There used to be quite the controversy in our christian circles about whether every believer is a minister (of course they are) or if there was a special calling to the ministry (of course there is) So if you are a full time minister, if you have have that calling, you have that responsibility to do the work of ministry NOT building yourself or your name up.
We were asked when we were gone so long from our church Grace Church how would it get along without us? Well our church was not built on Jon's personality! It was started years ago before either of us were born and hopefully it will be going on after we pass away! Our church is not a large church but the folks were faithful without anyone telling them to be. Why? Because they were there to serve God and God wasn't stuck up in a NY hospital!
But if you are a believer you also have a ministry, by living your life to glorify God. By reaching out to others, by being kind and loving. One thing I've learned over the years is to just care for others. People may chose to live their lives different from what the bible teaches BUT that doesn't mean you can't love them and be their friend! I have friends of various backgrounds and religions, I love them and they know it. I'm not trying to "get a notch on my belt" to get them "saved" I'm friends with a Wicca priest:) We are really friends, Jon & I enjoy him as a person. He knows where we stand and we know where he stands and because we like each other we have great conversations:) I have a friend who is a Jehovah Witness. We worked together for years and enjoyed each other's friendship. She wasn't allowed to eat in public with a non Jehovah Witness so we'd pick up lunch and eat at our desk. I have friends who are Muslim, Mormans and even an Agnostic or two:) Don't shy away from someone just because they believe different than you and don't try to shove your beliefs down their throats. No one like that! Just be a friend. I'm not saying not to share what you believe, but enjoy the person don't beat them down!!
So what is ministry? It's reaching out to others, daily, showing love, showing God's love and compassion to others. It's not living within a "Christian bubble" Alot of ministers I know, don't really know how to live outside the bubble. They don't know anyone but Christians.... there time is filled with "christian things" Jesus didn't live in the temple...he was a friend to sinners....remember we are all sinners.... I almost believe that all ministers should have to work a secular job because in this day and age too many insulate themselves from others and from the real world. (see I told you too much thnking gets me in trouble LOL) It's not about wearing a suit and a tie and calling each other Pastor. It's about reaching folks and loving them!
So I know this is a bit different post than my ones about Selah but I started this blog in order to write what was on my mind.....
Sunday, January 6, 2013
Day 63 fish Oil Study
Another good day for Selah. No storming at all, she's been relaxed and alert according to the nurse. Her tone has been better also. We'd hope to get back in time to go see her but we drove up in a rainstorm and we have to get all of Sam's meds done tonight.
We were able to be at our church this morning. Jon also did a service at the prison. Our house is completely ready for Selah now. Everything is in place except for the bed and other stuff that will come when she does. What a load of my shoulders to have everything done. It was a big job! Thank goodness for Val getting the house so clean! It made it easy to put everything up!
Tomorrow we hope to get the results of her blood test for inflammation. That should answer many questions for us. If it is higher than 1.1, we will know that the fish oil has not been handled correctly at some point. We feel that it is being handled correctly now. Of course we are using a new bottle now also. When Selah was tested prior to start the fish oil, her inflammation level was 15.0 In two weeks time it went to 1.1. Now we will see where it is.
A friend gave me a good idea....if you live in our area and are a nurse or know some home health nurses and you'd like to work for us. can you contact me at theclanton5@aol.com ? I can put you in touch with the agency we are working with. They are finding it difficult to find 24/7 nursing for us due to where we live. I don't know how everything is arranged but the agency can work out all the details. We'd like it all set up before we leave! And we want to leave soon!!! So rack your brains my Florida friends we need help.
Thank you for all the messages I've gotten about churches praying for Selah and us this weekend. Thank you all so much! I can't explain how prayer helps but I believe it does! I feel strengthen and ready for this coming week! Last week was very hard.....
We were able to be at our church this morning. Jon also did a service at the prison. Our house is completely ready for Selah now. Everything is in place except for the bed and other stuff that will come when she does. What a load of my shoulders to have everything done. It was a big job! Thank goodness for Val getting the house so clean! It made it easy to put everything up!
Tomorrow we hope to get the results of her blood test for inflammation. That should answer many questions for us. If it is higher than 1.1, we will know that the fish oil has not been handled correctly at some point. We feel that it is being handled correctly now. Of course we are using a new bottle now also. When Selah was tested prior to start the fish oil, her inflammation level was 15.0 In two weeks time it went to 1.1. Now we will see where it is.
A friend gave me a good idea....if you live in our area and are a nurse or know some home health nurses and you'd like to work for us. can you contact me at theclanton5@aol.com ? I can put you in touch with the agency we are working with. They are finding it difficult to find 24/7 nursing for us due to where we live. I don't know how everything is arranged but the agency can work out all the details. We'd like it all set up before we leave! And we want to leave soon!!! So rack your brains my Florida friends we need help.
Thank you for all the messages I've gotten about churches praying for Selah and us this weekend. Thank you all so much! I can't explain how prayer helps but I believe it does! I feel strengthen and ready for this coming week! Last week was very hard.....
Saturday, January 5, 2013
Day 62 Fish Oil study~ much better day!
Thank God, Selah had a much better day today! We went in this morning with all the kids and she was turning towards them. She was much more aware and much more relaxed!!!! Her tone was good and she was looser.
We left for home and called several times. The only issue she had was around 8 pm, her heart rate went up to 140 and the nurse decided to give her Valium. It was a new nurse, we probably wouldn't have asked for it and just watched her. I think she was being changed and just got upset. All in all a much better day.
Obviously we feel this is all related to her fish oil. The last bottle was not consistently kept in the freezer. That is the 'best practice". This one will be. Perhaps the other one got contaminated...who knows but we saw a difference last night as soon as she got the dose!
Hopefully we will find out Monday her blood test results! Then we will know if this regression is linked to a problem with the fish oil.
We came home to the cleanest house ever! My sister in law had done our carpets and everything else!!!!!!! Thank you Val!!!!! I don't think this house has been that clean since we moved in LOLOL! What a weight off me:) My friends had cleaned up for us, but in all the working and pulling things out....we had really messed it up! She even cleaned the windows:) What a great sis in law!!!!!
So please pray for our little girl as you go to worship tomorrow and if possible ask your church to pray for her. Pray that she will be touched by God and healed. We still pray for God to deliver her.... I keep holding on to the dream I had right after the accident.... It was so real. I dreamed that she and I were in our house and suddenly she was "back" mentally The only thing that was wrong was she couldn't walk.... That would make sense now to me. Her legs/ankles are so affected that she will have to have surgery. They are pulled into a ballerina pose, very uncomfortable. At the time of the dream, the whole feet/leg thing didn't make sense to me. Her legs were just getting tone and we did not understand the ramifications of it. But now I understand. I pray that dream comes true, we can work on the feet/ankles!! Pray that our nursing situation will work out quickly so we can go home! Her room is ready and waiting for her!
Thankyou for your prayers! They have given us renewed strength!
We left for home and called several times. The only issue she had was around 8 pm, her heart rate went up to 140 and the nurse decided to give her Valium. It was a new nurse, we probably wouldn't have asked for it and just watched her. I think she was being changed and just got upset. All in all a much better day.
Obviously we feel this is all related to her fish oil. The last bottle was not consistently kept in the freezer. That is the 'best practice". This one will be. Perhaps the other one got contaminated...who knows but we saw a difference last night as soon as she got the dose!
Hopefully we will find out Monday her blood test results! Then we will know if this regression is linked to a problem with the fish oil.
We came home to the cleanest house ever! My sister in law had done our carpets and everything else!!!!!!! Thank you Val!!!!! I don't think this house has been that clean since we moved in LOLOL! What a weight off me:) My friends had cleaned up for us, but in all the working and pulling things out....we had really messed it up! She even cleaned the windows:) What a great sis in law!!!!!
So please pray for our little girl as you go to worship tomorrow and if possible ask your church to pray for her. Pray that she will be touched by God and healed. We still pray for God to deliver her.... I keep holding on to the dream I had right after the accident.... It was so real. I dreamed that she and I were in our house and suddenly she was "back" mentally The only thing that was wrong was she couldn't walk.... That would make sense now to me. Her legs/ankles are so affected that she will have to have surgery. They are pulled into a ballerina pose, very uncomfortable. At the time of the dream, the whole feet/leg thing didn't make sense to me. Her legs were just getting tone and we did not understand the ramifications of it. But now I understand. I pray that dream comes true, we can work on the feet/ankles!! Pray that our nursing situation will work out quickly so we can go home! Her room is ready and waiting for her!
Thankyou for your prayers! They have given us renewed strength!
Friday, January 4, 2013
Day 61 Fish Oil Study-what a day...
Whew.....
We got there early and Selah had already started storming.....
Some have asked what storming is...for Selah it is her heart rate rising (normal for a child her age is under 100) she can get up to 180-200! She gets stiff, she begins "vibrating" and sweating....it is awful to watch.
We talked with the doctor who seemed concerned and she ordered a bunch of tests. Xrays to rule out some hips displacement problems, and to make sure her lungs were clear. MRI to check her brain for fluid build up or any other issue, EEG to rule out seizures, bloodwork to rule out infections and a urine test. To take Selah for the tests she had to be wheeled across the inside bridge to the bigger hospital next door. Both times we went, she stormed so much we had to turn around and bring her back for some meds to calm her down. By this point Jon and I were so upset and worried. Selah could not handle any touch nor did she even like anyone to get near here, her heart rate would just climb. This went on all day. Thankfully they did the orders so she could get medication as needed to help her. I am NOT a fan of alot of meds BUT believe me if you saw your sweet child shaking you would be begging for something for her!
So every single test came back unchanged. Normal for Selah/for what was expected. No change, No seizures, no extra fluid on the brain or blood clots, no infections......
We also had her blood sent to Dr Sear's lab for her monthly blood test for inflamation. When Selah began the Fish Oil Study 61 days ago her inflamtion level was 15! That is high for a child. After one dose of fish oil, Selah never had another storm there. Within two weeks her inflamtion numbers were 1.1!!!! That was perfect! She did not have another storm until she had been here for a week. She has not had that tested since she has been here. If the number is higher than 1.1, we will feel we are correct in thinking there has been some sort of mix up with her fish oil study. We should get those results on Monday or Tuesday.
Tonight I opened a new bottle of fish oil and a new bottle of the stuff it is mixed with. Since that time her heart rate has been normal although she still seemed agaited.
One thing that really bothers me is there is not alot of respect for the fish oil study. We came here with the assurance that the hospital would work with Dr Sear's office and follow the protcol. We know the protcol has not been followed at times and now we have been questioned about the authenticy of the study. We consisitently refer them back to Strong's Hosptial or to Dr Sear's office. At Strong's the study was put to an administrative review board and it passed! It passed several reviews, the names of the reviews I can't recall right now....but Strongs' is not some crazy little country hospital....LOL It is one of the leading hospitals in the NY/Pennsylvaian Ohio region!!!! This is a real sore point for us!
We had a real down day yesterday and a sad night but God gave us the strength to get up today and fight for our daughter!
God knows we HATE what happened to Selah. We all have gone over and over the accident in our minds and all the little ways perhaps if could have been avoided. I think we will do that for the rest of our lives. We adore Selah, she was a bit of a surpise to us, we were planning on adopting another child who got adopted by someone else but we soon saw that SHE was the one God had for our family. The adoption and the adjustment into our family was flawless with both girls (WAY more easier than with Shad!!! ) All summer we kept pinching ourselves and wondering if we'd ever really have any adjustment issues....and we didn't. It was unreal and perfect:) Then....our world crashed....but we loved Selah so much we didn't give up, even when the doctors said we could just not do some medical interventions and she would pass away...we wouldn't give up! We made some promises to that little girl, that nothing could change! We stuck by her when she didn't know we were even in the room and then we had many victories and thought we might be the ones to get a medical miracle! Right now we don't know what is going to happen now....we feel like this will be resolved and she will begin recovery again but even if she doesn't we are going to be there for her 100%! I'm not telling you all this to impress you but I'm just explaining how we feel. Neither Jon nor I care about how we look to medical staff or administration,we are so far beyond that it so doesn't matter anymore. I can speak my mind and hold my head up as I walk down the hall. Why? Because Selah is my daughter handpicked by God for us and I will NOT stop fighting for her! We know where she was in recovery, we were there daily, we were in therapy with her, we worked with her. We were not fooled and we can see she is not the child who was recovering in such a marvlous way.
This has been a hard almost 5 months for us but it has been harder for Selah. I can't imagine what she has gone through. Pray for our little girl that she will begin recovering again!!!
One thing we loved her from the beginging...but having gone through this ordeal, Selah is even dearer to our hearts. We both feel very protective of her. It's funny,but when she can't really show us affection, our love for her continues to grow... Sometimes the fear of the future wells up inside of me but when I look at that precious little girl and know all she went through before we adopted her and now the accident... that gives me the strength to know we can serve and care for her no matter how intensive that care might be. And I know who we are depending on for strength also. We know God will give us the strength and wisdom we need for the job ahead. We have no choice, there is no way we are giving up on our girl!!!!
We have a great aftercare coordinator who is working on getting our nursing set in place but the one agency we'd hope to use can't give us enough staff to fill our 24/7 schedule. but we have a few people working on things. It's just a matter of time. We hope to have it resolved and nurses in place by Wednesday....we understand how this all works! We live in a rural area with few pediatric patients...please pray that this is resolved and we can get Selah home!!!!!!!
Pray that the new fish oil bottle and mixer is what is needed and the storming will stop!! Pray that we get her home to her beautiful new room, with her new swing outside and a peaceful home. Our home was the perfect size before but adding a full time nurse and with Selah having her own room, it certainly will be challenging in some ways and NO we have not heard from Extreme Home Makeover yet but hope to one day!!! We haven't decided what we are going to do yet. We probably won't build onto this house since it is not our own home, it is a parsonage and is owned by the church. I think the most important thing is to get her home and see how things work out. Our family is pretty flexable....obviously!!! And we don't have to have things perfect....but it will be perfect for her! That is the most important at this point. We can meet her needs right now with things like they are and we will figure out the rest later!
So if you attend church this weekend please ask for special prayer for Selah! Pray for peace and comfort for her. Pray that God will have mercy and heal her! Pray that the fish oil study will not be hindered in any way! Thank you!!! We want our sweet little girl back!
We got there early and Selah had already started storming.....
Some have asked what storming is...for Selah it is her heart rate rising (normal for a child her age is under 100) she can get up to 180-200! She gets stiff, she begins "vibrating" and sweating....it is awful to watch.
We talked with the doctor who seemed concerned and she ordered a bunch of tests. Xrays to rule out some hips displacement problems, and to make sure her lungs were clear. MRI to check her brain for fluid build up or any other issue, EEG to rule out seizures, bloodwork to rule out infections and a urine test. To take Selah for the tests she had to be wheeled across the inside bridge to the bigger hospital next door. Both times we went, she stormed so much we had to turn around and bring her back for some meds to calm her down. By this point Jon and I were so upset and worried. Selah could not handle any touch nor did she even like anyone to get near here, her heart rate would just climb. This went on all day. Thankfully they did the orders so she could get medication as needed to help her. I am NOT a fan of alot of meds BUT believe me if you saw your sweet child shaking you would be begging for something for her!
So every single test came back unchanged. Normal for Selah/for what was expected. No change, No seizures, no extra fluid on the brain or blood clots, no infections......
We also had her blood sent to Dr Sear's lab for her monthly blood test for inflamation. When Selah began the Fish Oil Study 61 days ago her inflamtion level was 15! That is high for a child. After one dose of fish oil, Selah never had another storm there. Within two weeks her inflamtion numbers were 1.1!!!! That was perfect! She did not have another storm until she had been here for a week. She has not had that tested since she has been here. If the number is higher than 1.1, we will feel we are correct in thinking there has been some sort of mix up with her fish oil study. We should get those results on Monday or Tuesday.
Tonight I opened a new bottle of fish oil and a new bottle of the stuff it is mixed with. Since that time her heart rate has been normal although she still seemed agaited.
One thing that really bothers me is there is not alot of respect for the fish oil study. We came here with the assurance that the hospital would work with Dr Sear's office and follow the protcol. We know the protcol has not been followed at times and now we have been questioned about the authenticy of the study. We consisitently refer them back to Strong's Hosptial or to Dr Sear's office. At Strong's the study was put to an administrative review board and it passed! It passed several reviews, the names of the reviews I can't recall right now....but Strongs' is not some crazy little country hospital....LOL It is one of the leading hospitals in the NY/Pennsylvaian Ohio region!!!! This is a real sore point for us!
We had a real down day yesterday and a sad night but God gave us the strength to get up today and fight for our daughter!
God knows we HATE what happened to Selah. We all have gone over and over the accident in our minds and all the little ways perhaps if could have been avoided. I think we will do that for the rest of our lives. We adore Selah, she was a bit of a surpise to us, we were planning on adopting another child who got adopted by someone else but we soon saw that SHE was the one God had for our family. The adoption and the adjustment into our family was flawless with both girls (WAY more easier than with Shad!!! ) All summer we kept pinching ourselves and wondering if we'd ever really have any adjustment issues....and we didn't. It was unreal and perfect:) Then....our world crashed....but we loved Selah so much we didn't give up, even when the doctors said we could just not do some medical interventions and she would pass away...we wouldn't give up! We made some promises to that little girl, that nothing could change! We stuck by her when she didn't know we were even in the room and then we had many victories and thought we might be the ones to get a medical miracle! Right now we don't know what is going to happen now....we feel like this will be resolved and she will begin recovery again but even if she doesn't we are going to be there for her 100%! I'm not telling you all this to impress you but I'm just explaining how we feel. Neither Jon nor I care about how we look to medical staff or administration,we are so far beyond that it so doesn't matter anymore. I can speak my mind and hold my head up as I walk down the hall. Why? Because Selah is my daughter handpicked by God for us and I will NOT stop fighting for her! We know where she was in recovery, we were there daily, we were in therapy with her, we worked with her. We were not fooled and we can see she is not the child who was recovering in such a marvlous way.
This has been a hard almost 5 months for us but it has been harder for Selah. I can't imagine what she has gone through. Pray for our little girl that she will begin recovering again!!!
One thing we loved her from the beginging...but having gone through this ordeal, Selah is even dearer to our hearts. We both feel very protective of her. It's funny,but when she can't really show us affection, our love for her continues to grow... Sometimes the fear of the future wells up inside of me but when I look at that precious little girl and know all she went through before we adopted her and now the accident... that gives me the strength to know we can serve and care for her no matter how intensive that care might be. And I know who we are depending on for strength also. We know God will give us the strength and wisdom we need for the job ahead. We have no choice, there is no way we are giving up on our girl!!!!
We have a great aftercare coordinator who is working on getting our nursing set in place but the one agency we'd hope to use can't give us enough staff to fill our 24/7 schedule. but we have a few people working on things. It's just a matter of time. We hope to have it resolved and nurses in place by Wednesday....we understand how this all works! We live in a rural area with few pediatric patients...please pray that this is resolved and we can get Selah home!!!!!!!
Pray that the new fish oil bottle and mixer is what is needed and the storming will stop!! Pray that we get her home to her beautiful new room, with her new swing outside and a peaceful home. Our home was the perfect size before but adding a full time nurse and with Selah having her own room, it certainly will be challenging in some ways and NO we have not heard from Extreme Home Makeover yet but hope to one day!!! We haven't decided what we are going to do yet. We probably won't build onto this house since it is not our own home, it is a parsonage and is owned by the church. I think the most important thing is to get her home and see how things work out. Our family is pretty flexable....obviously!!! And we don't have to have things perfect....but it will be perfect for her! That is the most important at this point. We can meet her needs right now with things like they are and we will figure out the rest later!
So if you attend church this weekend please ask for special prayer for Selah! Pray for peace and comfort for her. Pray that God will have mercy and heal her! Pray that the fish oil study will not be hindered in any way! Thank you!!! We want our sweet little girl back!
Thursday, January 3, 2013
Day 60 Fish Oil study
Back on Day 1, I thought by Day 60 Selah would be so far ahead than what she is today.
We had our weekly meeting today. Basically it comes down to we are not happy nor do we have the same level of teamwork/trust as we had in NY. We asked to be transferred but that is almost impossible since she is not acutely ill. We already understood that but had hoped they may want to transfer us so we put it out as an option. We are hoping for a release date of Monday and alot of things are falling into place so that might just happen. Jon & I are going over training/discharge paperwork in order to leave on Monday if the nursing is set up. That all is being worked on by different agencies. Pray that we will have everything in place by Monday with 24 hour nursing as we have requested due to our circumstances. Thankfully in our state, they do have to take into consideration our other children. I'm not sure how often they've had a family with three disabled children. But everyone seems to think that will tip the scales in our favor.
Selah had a storm at 3:30 PM her new regular time. Then she got her meds. The storm only lasted about 10 minutes. But then at 4:30 pm it started again. It took her about 45 minutes to bring herself down. We have no idea why she is having storms again. All I say is once she had started the fish oil study on Day 1 she went from storming several times a day to no storming again until a couple of weeks ago. The fish oil bottle was changed (we thought it had been compromised) and she didn't have another storm until this past Tuesday.
She was evaluated by a neurologist who was called in. In a nutshell the neuro basically said Selah was at the same place as she was in NY according to their (NY) records....The neuro said it was "how she was viewed or how it was interpreted or read" Basically that means Selah is the same, we all misunderstood her in NY...... If it was not so asinine, I would have to laugh but at this point I just want to cry....I can't even discuss how we feel about this but to say we do NOT agree that she is the same as she was in NY! Two major documented differences...1. she had quit storming in NY 2. she was swallowing in NY... Those aren't things that are open to interpretation or subjective views......
Jon and I just have our heads down and are plodding along, making sure we have everything ready for her release on Monday. We are beat down and discouraged in a way we have not been before. At least during the hard times in NY we had confidence in those who were working with Selah. That makes a huge difference when you feel everything that can be done is being done. If there were any questions about her health, they turned over every stone to make sure she had proper care! We didn't have to ask for it, it happened in the course of treatment! Can I say again how much we love Strong's Hospital in Rochester NY! We knew we were in the best hands and had confidence in that! We do appreciate the nurses who have been working with Selah here, we have three lovely ladies who do the majority of her nursing and they are great and caring. One is from Eastern Europe herself, one from Morocco and one homegrown:) But this is far different than Strong's
So our prayer request is that everything comes together in the way we need in order for us to be most comfortable in bringing her home. We really want to go home on Monday with her. Our family needs to be home. Up until this past week or so I've not even let myself think about going home and actually living there with our family. I am so ready..... I think we are all at a breaking point, Jon, me and the kids. The kids have all been so great and have had wonderful attitudes through this whole ordeal but they need structure in their lives again. I'm really proud of Steve and Shad, they have not complained at all about losing their room and having to sleep on the floor. Honestly not one word or grumble, they've treated it like an adventure:) They've all "gone with the flow" Last night Sarah had a nightmare and woke up screaming and shaking. I had to hold her and sing to her for her to calm down. She was doing the long shuddering breaths....she finally calmed down. I think we haven't given her enough attention the last few days. I stayed home with them this morning and held her and fed her and talked to her... I think just a few months ago she was living in a mental institution. Now she just goes with the flow and has adapted so well to everything but some days she just needs Mama! And I need her and her sweet laugh!!! But we are all ready to be home, even tho home will be so different......
I have never tried to say what I thought our future looked like....we hope and pray for Selah's healing. I can't believe this is the ending we will have.... but I don't know.... I cry out to Jesus every night and every morning when I wake up. It comes welling up from inside of me. Sometimes when I am half asleep, I find myself fervently praying for Selah without evern thinking about it. I ask for His mercy over Selah.... I ask for Grace to walk whatever path that lies in front of us. I don't understand why others have had a recovery and Selah hasn't.... But I am still going to trust God.
These past almost 5 months have been the hardest walk I've ever had...and there is no end in sight right now. Please pray for Jon & me, we need your prayers, now more than ever....
Thank you all again for your prayers and for your many kindnesses to our family. I am beyond behind on thank yous but please know we do not take anything for granted. We have learned by the outpouring of love to know how much it means to be reached out to. There has been times in other's situations that I thought maybe I should send a card or something but figured it wouldn't mean that much, probably so many others were doing it ....OH but it does mean so much !!!!! I'll never squash that impulse again even if I barely know the person or even if I don't know the person! So thank you all!
We had our weekly meeting today. Basically it comes down to we are not happy nor do we have the same level of teamwork/trust as we had in NY. We asked to be transferred but that is almost impossible since she is not acutely ill. We already understood that but had hoped they may want to transfer us so we put it out as an option. We are hoping for a release date of Monday and alot of things are falling into place so that might just happen. Jon & I are going over training/discharge paperwork in order to leave on Monday if the nursing is set up. That all is being worked on by different agencies. Pray that we will have everything in place by Monday with 24 hour nursing as we have requested due to our circumstances. Thankfully in our state, they do have to take into consideration our other children. I'm not sure how often they've had a family with three disabled children. But everyone seems to think that will tip the scales in our favor.
Selah had a storm at 3:30 PM her new regular time. Then she got her meds. The storm only lasted about 10 minutes. But then at 4:30 pm it started again. It took her about 45 minutes to bring herself down. We have no idea why she is having storms again. All I say is once she had started the fish oil study on Day 1 she went from storming several times a day to no storming again until a couple of weeks ago. The fish oil bottle was changed (we thought it had been compromised) and she didn't have another storm until this past Tuesday.
She was evaluated by a neurologist who was called in. In a nutshell the neuro basically said Selah was at the same place as she was in NY according to their (NY) records....The neuro said it was "how she was viewed or how it was interpreted or read" Basically that means Selah is the same, we all misunderstood her in NY...... If it was not so asinine, I would have to laugh but at this point I just want to cry....I can't even discuss how we feel about this but to say we do NOT agree that she is the same as she was in NY! Two major documented differences...1. she had quit storming in NY 2. she was swallowing in NY... Those aren't things that are open to interpretation or subjective views......
Jon and I just have our heads down and are plodding along, making sure we have everything ready for her release on Monday. We are beat down and discouraged in a way we have not been before. At least during the hard times in NY we had confidence in those who were working with Selah. That makes a huge difference when you feel everything that can be done is being done. If there were any questions about her health, they turned over every stone to make sure she had proper care! We didn't have to ask for it, it happened in the course of treatment! Can I say again how much we love Strong's Hospital in Rochester NY! We knew we were in the best hands and had confidence in that! We do appreciate the nurses who have been working with Selah here, we have three lovely ladies who do the majority of her nursing and they are great and caring. One is from Eastern Europe herself, one from Morocco and one homegrown:) But this is far different than Strong's
So our prayer request is that everything comes together in the way we need in order for us to be most comfortable in bringing her home. We really want to go home on Monday with her. Our family needs to be home. Up until this past week or so I've not even let myself think about going home and actually living there with our family. I am so ready..... I think we are all at a breaking point, Jon, me and the kids. The kids have all been so great and have had wonderful attitudes through this whole ordeal but they need structure in their lives again. I'm really proud of Steve and Shad, they have not complained at all about losing their room and having to sleep on the floor. Honestly not one word or grumble, they've treated it like an adventure:) They've all "gone with the flow" Last night Sarah had a nightmare and woke up screaming and shaking. I had to hold her and sing to her for her to calm down. She was doing the long shuddering breaths....she finally calmed down. I think we haven't given her enough attention the last few days. I stayed home with them this morning and held her and fed her and talked to her... I think just a few months ago she was living in a mental institution. Now she just goes with the flow and has adapted so well to everything but some days she just needs Mama! And I need her and her sweet laugh!!! But we are all ready to be home, even tho home will be so different......
I have never tried to say what I thought our future looked like....we hope and pray for Selah's healing. I can't believe this is the ending we will have.... but I don't know.... I cry out to Jesus every night and every morning when I wake up. It comes welling up from inside of me. Sometimes when I am half asleep, I find myself fervently praying for Selah without evern thinking about it. I ask for His mercy over Selah.... I ask for Grace to walk whatever path that lies in front of us. I don't understand why others have had a recovery and Selah hasn't.... But I am still going to trust God.
These past almost 5 months have been the hardest walk I've ever had...and there is no end in sight right now. Please pray for Jon & me, we need your prayers, now more than ever....
Thank you all again for your prayers and for your many kindnesses to our family. I am beyond behind on thank yous but please know we do not take anything for granted. We have learned by the outpouring of love to know how much it means to be reached out to. There has been times in other's situations that I thought maybe I should send a card or something but figured it wouldn't mean that much, probably so many others were doing it ....OH but it does mean so much !!!!! I'll never squash that impulse again even if I barely know the person or even if I don't know the person! So thank you all!
Wednesday, January 2, 2013
Day 59 Fish Oil Study~ complete bad news
I do not even know how to write all that has happened today and all that is on our minds...
This morning we came in Selah's room and her right arm was lying out by her side like she was on a cross. It looked so odd that it caught my attention immediately. I went over and went to move it and she winced and her heart rate soared. I stopped moving it and went and told the nurse I wanted a doctor in to see her because I thought her arm was hurt. An hour or so passed and the doctor came in and said nothing was wrong she was doing a new movement/posturing. The OT had also come and saw it and thought it looked odd, not something Selah's body was doing on her own. We still asked for an xray that took hours to get and more hours to read and get the results. Tonight the results came that there was no broken or fractured bones. She stormed today right after they were doing the xray for about 5 -10 minutes again. She reacted to being moved as if it really hurt her. All the doctor would say is maybe she is sore from the spacity and that is why she reacted like that. I have no idea...my gut tells me NO!
This is a new doctor to us. We went through all of the ways Selah has regressed since she has been transferred here. The doctor, of course, puts the blame on Selah. "She has had so much brain damage, she is unstable" I kept repeatedly saying that she was stable for weeks and weeks in NY. It was like talking to a wall. She did call in a neurologist, who will come in tomorrow. She seems to think that Selah "just happened to decline" when she came here as that is part of the whole brain injury situation. We do NOT believe that for a moment! She also suggested that something may have happened on the plane trip, but she was hooked up to everything and nothing registered a problem. She also suggested Selah may have increased water on the brain. She thinks a CAT scan (because it is easier to schedule) should be done. We disagree, we want an MRI because it is much safer and Selah has had a couple of CAT scans so we are done with those for now!!! We've asked for a MRI for weeks and they act like it is soooo hard to schedule one. Truth is NO ONE has tried to schedule one to my knowledge.
I am beyond frustrated tonight. Since the day we arrived, we were shocked at the decline in Selah. It took us 2 days to drive here and in those 2 days we couldn't believe the change in Selah. It has gone from bad to worse. We do not feel that we are listened to at all. We constantly tell them to call our therapists and doctors in NY for more details and to my knowledge that isn't done. We feel like they think we are just very unrealistic parents who thought there was a tiny bit of improvement in their hopeless child.
Please don't make a ton of suggestions. Right now we just want to get her home. It is almost impossible to transfer her to another hospital at this point. We know, remember we were in NY for 18 weeks? At least 12 of those weeks trying to get to Florida. Just pray that Selah will not decline any further and that all the insurances/planning will come together and that she will be ready to leave with 24 hour nursing on Monday.
Jon and I are very upset, worried and distraught. We do not know what is wrong but there is something terribly wrong here. I still believe it comes back to mishandling of the fish oil. I have no proof of that now as it is not brought into her room until it is already mixed but the smell is gone again. Her clothes still have a smell but tonight I just buried my face into her hair and all I could smell was Selah...not fish oil. I just want to get her home although I am petrified of the responsibility....
We watched some videos we made of her in NY in therapy after the accident and we both cried because she looked so good and aware. She was making great eye contact and doing things. Now she is barely there again....it's awful to have had such great progress just to see it slip away. I think that hurts more than anything!!!!
This morning we came in Selah's room and her right arm was lying out by her side like she was on a cross. It looked so odd that it caught my attention immediately. I went over and went to move it and she winced and her heart rate soared. I stopped moving it and went and told the nurse I wanted a doctor in to see her because I thought her arm was hurt. An hour or so passed and the doctor came in and said nothing was wrong she was doing a new movement/posturing. The OT had also come and saw it and thought it looked odd, not something Selah's body was doing on her own. We still asked for an xray that took hours to get and more hours to read and get the results. Tonight the results came that there was no broken or fractured bones. She stormed today right after they were doing the xray for about 5 -10 minutes again. She reacted to being moved as if it really hurt her. All the doctor would say is maybe she is sore from the spacity and that is why she reacted like that. I have no idea...my gut tells me NO!
This is a new doctor to us. We went through all of the ways Selah has regressed since she has been transferred here. The doctor, of course, puts the blame on Selah. "She has had so much brain damage, she is unstable" I kept repeatedly saying that she was stable for weeks and weeks in NY. It was like talking to a wall. She did call in a neurologist, who will come in tomorrow. She seems to think that Selah "just happened to decline" when she came here as that is part of the whole brain injury situation. We do NOT believe that for a moment! She also suggested that something may have happened on the plane trip, but she was hooked up to everything and nothing registered a problem. She also suggested Selah may have increased water on the brain. She thinks a CAT scan (because it is easier to schedule) should be done. We disagree, we want an MRI because it is much safer and Selah has had a couple of CAT scans so we are done with those for now!!! We've asked for a MRI for weeks and they act like it is soooo hard to schedule one. Truth is NO ONE has tried to schedule one to my knowledge.
I am beyond frustrated tonight. Since the day we arrived, we were shocked at the decline in Selah. It took us 2 days to drive here and in those 2 days we couldn't believe the change in Selah. It has gone from bad to worse. We do not feel that we are listened to at all. We constantly tell them to call our therapists and doctors in NY for more details and to my knowledge that isn't done. We feel like they think we are just very unrealistic parents who thought there was a tiny bit of improvement in their hopeless child.
Please don't make a ton of suggestions. Right now we just want to get her home. It is almost impossible to transfer her to another hospital at this point. We know, remember we were in NY for 18 weeks? At least 12 of those weeks trying to get to Florida. Just pray that Selah will not decline any further and that all the insurances/planning will come together and that she will be ready to leave with 24 hour nursing on Monday.
Jon and I are very upset, worried and distraught. We do not know what is wrong but there is something terribly wrong here. I still believe it comes back to mishandling of the fish oil. I have no proof of that now as it is not brought into her room until it is already mixed but the smell is gone again. Her clothes still have a smell but tonight I just buried my face into her hair and all I could smell was Selah...not fish oil. I just want to get her home although I am petrified of the responsibility....
We watched some videos we made of her in NY in therapy after the accident and we both cried because she looked so good and aware. She was making great eye contact and doing things. Now she is barely there again....it's awful to have had such great progress just to see it slip away. I think that hurts more than anything!!!!
Day 58 fish Oil Study:(
After yesterday I thought I'd have more great stuff to write about.....today Jon changed her trach and she had a small storm. It only lasted 5-10 minutes but still her heartbeat went up to 170 and she shook. She has never had a reaction to her trach being changed before and they did it really quick. She brought herself down and didn't need any extra meds. she hasn't had another problem but I am worried about tomorrow....I'm worried about the fish oil.... she had NO problems in NY. She was as stable as she could be under the circumstances, she was progressing daily or at least was staying the same daily and hitting new milestones every few days. I do not believe this regression we have seen is because Selah herself is unstable. I don't feel it in my gut. I trust my gut instinct, I've had almost 9 yrs of dealing with a sick/handicapped child. My gut has always been right. My gut tells me that something with the fish oil is off. When it was started 58 days ago, she went from having "storming" daily, often several times a day, to no storming, no matter what was asked of her (in therapy) That remained consistent even when she had pneumonia. she was amazing everyone....what has changed? Her location and the way the fish oil has been treated. Now although we had felt everything had been addressed, this has happened again. I know if I go to the doctors about this they will just tell me that Selah was a near drowning and near drownings are unstable...... Well most might be but she has never been once the fish oil was started. I am just sick about this....
Please pray for Selah....pray that there will be no more episodes and that we can get everything set up for her to be transferred home asap!!! When she is home ~ Jon or I will be the only ones to touch her fish oil. We will make sure that it is done correctly. We know she is the 7th person to be admitted into this study. The other 6 recovered from their comas, some did have some physical delays but they all recovered. We saw so much recovery in the first 40 days it was unreal! We believe that she will regain the function she had in NY and improve beyond that if things are done correctly.
Tonight I accidentally called Strong's Hospital instead of the one she is in now (they are both listed under Selah in my phone) I asked for her nurse and the floor receptionist caught my voice and we started laughing. She & I spoke for a few minutes and she told me how they all think of us...I could have cried....I loved those folks so much and had so much trust in them.... I do not feel the same about where she is now. Although we do have some lovely nurses that we like and would be glad to take a few of them home with us to work with her. But overall it is not the same and that is hard for me. I feel like Selah is just looked at as "another drowning case" and "you know they don't progress" I don't feel like they believe us about her progress in NY although they've talked to her therapists in NY.
Selah is different as every case is different....we saw real progress. Now we see real regression...she was stable too long for this type of regression at this point in the recovery process. Something is not right....
Please pray for Selah and for us that we have wisdom.
Please pray for Selah....pray that there will be no more episodes and that we can get everything set up for her to be transferred home asap!!! When she is home ~ Jon or I will be the only ones to touch her fish oil. We will make sure that it is done correctly. We know she is the 7th person to be admitted into this study. The other 6 recovered from their comas, some did have some physical delays but they all recovered. We saw so much recovery in the first 40 days it was unreal! We believe that she will regain the function she had in NY and improve beyond that if things are done correctly.
Tonight I accidentally called Strong's Hospital instead of the one she is in now (they are both listed under Selah in my phone) I asked for her nurse and the floor receptionist caught my voice and we started laughing. She & I spoke for a few minutes and she told me how they all think of us...I could have cried....I loved those folks so much and had so much trust in them.... I do not feel the same about where she is now. Although we do have some lovely nurses that we like and would be glad to take a few of them home with us to work with her. But overall it is not the same and that is hard for me. I feel like Selah is just looked at as "another drowning case" and "you know they don't progress" I don't feel like they believe us about her progress in NY although they've talked to her therapists in NY.
Selah is different as every case is different....we saw real progress. Now we see real regression...she was stable too long for this type of regression at this point in the recovery process. Something is not right....
Please pray for Selah and for us that we have wisdom.
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