Credit: painting by John Lautermilch
So sad......praying for the families....
"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!
Friday, December 14, 2012
Day 40 fish oil study
Our first full day in Florida. We went with Selah to all her therapies. She certainly was "off" again. She had thick green guck coming out of the trach and was still on oxygen. the culture came back positive and now she is on antibiotics. It bothers me that this was not noticed until we got here and I started pointing things out to the staff. Obviously she is not doing all the things she normally does but we did see her do one new thing. When quickly moved to her right side ( to mimic a fall) she does startle and reacts in an alarmed way.
We had a long conference with our main doctor and staff to get clarity on some issues. Our main concern is that she gets rehabilitated, and gets as much services as possible while she is here. She was placed in a 2 week "evaluation program" That is not exactly what we agreed on during the conference call we had. We did agree to start with that with the belief that reasonable goals would be set and achieved and she would meet the requirements for the insurance to keep her here. Once we got here, it seemed that only the two week evaluation program was being considered for her. There is definitely a difference in opinions between us and them. It was explained to us that her brain is slowly healing and that no therapy would help her get better any quicker. Therefore rehab won't do much for her at this time. That is NOT our opinion nor is it the opinion of various therapists we have had over the years for Sam. (in fact most of the time I've felt that Sam had been pushed too hard at times)
I am not sure what is going to happen. We do get some positive feelings here and I think if she were higher functioning they would give her more but they don't because of her lower functioning ability. That bothers me. We did like the doctor's approach to the meds, she is interested in taking her off of as much as possible that could give her sedation! I'm thrilled with that and all for it! Also tomorrow she will be started on a new drug called Amantadine this is a drug that seems to help children with brain injuries. In a study 63% of the children saw significant changes within 3 days. The changes included increased alertness, initiations and verbalization and decreased agitation. Please pray that this will work significantly for Selah without any bad side affects!!!!!!!!!!
In my opinion, the outlook for Selah by the staff here is not good. They seem to think she will have increased problems with the spacity (stiffness) and may need a pump placed inside to give her continuous meds to combat the stiffness as well as other issues. Although they are very respectful and pharse their statements gently, it is depressing. They tend to point out the negatives and not the positives. We are realistic, please do not get me wrong- I am the Queen of Realism but we also have hope. I told them in our meeting that we have seen how far she has come, without any regression (until now) and that only gives us hope for the future.
My philosophy as a parent of a child with disabilities is to give the child as much therapy as possible and work the body, which in turn stimulates the brain. I've been told that by other therapists and doctors. I've done that with Sam and if you know us, you know how far Sam has come, much farther than anyone ever thought he would. This philosophy that they are sharing with us goes against my gut feelings and everything I've been told for the past almost 9 years.
There is not alot of options for us to be honest. Our insurances will only cover so much and obviously we can't afford to just go anywhere we want to get therapy. If you have any real suggestions, or if you are a millionaire and would like to pay her therapy (lol) , please feel free to share with me. Believe me, if there were any real options to go to after here, I would be doing them.
I'm confident in God tonight, He has led us these past 19 weeks and He will continue to work things out for Selah. If you know me, you know I'm not naturally "at peace" with things if I don't agree with them. I will continue to advocate for Selah and I believe I know what is best for her and I will go with my gut instinct about things. Please pray that she will respond more and that they will see the potential in Selah, not just the negatives. Pray that the staff will see our commitment to bring Selah back as far as possible and want to work with us in a stronger more pro-active way. Pray that this new medicine will work mightily in her brain! And that she will 100% tolerate the decrease in some of the other meds and this new one being added with no side effects. This has not been the easiest day for us. Jon is sick and feels down, which is not how he usually is either. We have so much responsibility on us, it is easy to feel alone.
The other kids had a great time today in our hotel suite, they fixed lunch and watched tv:) They called us to tell us what all they were doing. they are loving it here! (but they miss their RMH friends as do we! The hotel is wonderful but we do miss the interaction with our friends! But are loving the privacy!!!! )
We had a long conference with our main doctor and staff to get clarity on some issues. Our main concern is that she gets rehabilitated, and gets as much services as possible while she is here. She was placed in a 2 week "evaluation program" That is not exactly what we agreed on during the conference call we had. We did agree to start with that with the belief that reasonable goals would be set and achieved and she would meet the requirements for the insurance to keep her here. Once we got here, it seemed that only the two week evaluation program was being considered for her. There is definitely a difference in opinions between us and them. It was explained to us that her brain is slowly healing and that no therapy would help her get better any quicker. Therefore rehab won't do much for her at this time. That is NOT our opinion nor is it the opinion of various therapists we have had over the years for Sam. (in fact most of the time I've felt that Sam had been pushed too hard at times)
I am not sure what is going to happen. We do get some positive feelings here and I think if she were higher functioning they would give her more but they don't because of her lower functioning ability. That bothers me. We did like the doctor's approach to the meds, she is interested in taking her off of as much as possible that could give her sedation! I'm thrilled with that and all for it! Also tomorrow she will be started on a new drug called Amantadine this is a drug that seems to help children with brain injuries. In a study 63% of the children saw significant changes within 3 days. The changes included increased alertness, initiations and verbalization and decreased agitation. Please pray that this will work significantly for Selah without any bad side affects!!!!!!!!!!
In my opinion, the outlook for Selah by the staff here is not good. They seem to think she will have increased problems with the spacity (stiffness) and may need a pump placed inside to give her continuous meds to combat the stiffness as well as other issues. Although they are very respectful and pharse their statements gently, it is depressing. They tend to point out the negatives and not the positives. We are realistic, please do not get me wrong- I am the Queen of Realism but we also have hope. I told them in our meeting that we have seen how far she has come, without any regression (until now) and that only gives us hope for the future.
My philosophy as a parent of a child with disabilities is to give the child as much therapy as possible and work the body, which in turn stimulates the brain. I've been told that by other therapists and doctors. I've done that with Sam and if you know us, you know how far Sam has come, much farther than anyone ever thought he would. This philosophy that they are sharing with us goes against my gut feelings and everything I've been told for the past almost 9 years.
There is not alot of options for us to be honest. Our insurances will only cover so much and obviously we can't afford to just go anywhere we want to get therapy. If you have any real suggestions, or if you are a millionaire and would like to pay her therapy (lol) , please feel free to share with me. Believe me, if there were any real options to go to after here, I would be doing them.
I'm confident in God tonight, He has led us these past 19 weeks and He will continue to work things out for Selah. If you know me, you know I'm not naturally "at peace" with things if I don't agree with them. I will continue to advocate for Selah and I believe I know what is best for her and I will go with my gut instinct about things. Please pray that she will respond more and that they will see the potential in Selah, not just the negatives. Pray that the staff will see our commitment to bring Selah back as far as possible and want to work with us in a stronger more pro-active way. Pray that this new medicine will work mightily in her brain! And that she will 100% tolerate the decrease in some of the other meds and this new one being added with no side effects. This has not been the easiest day for us. Jon is sick and feels down, which is not how he usually is either. We have so much responsibility on us, it is easy to feel alone.
The other kids had a great time today in our hotel suite, they fixed lunch and watched tv:) They called us to tell us what all they were doing. they are loving it here! (but they miss their RMH friends as do we! The hotel is wonderful but we do miss the interaction with our friends! But are loving the privacy!!!! )
Thursday, December 13, 2012
Day 39 fish OIl (and day 1 for Sarah!) We're in Jax!
So we finally made it here! We began wondering if Florida had moved or something, it seemed like such a long drive.
We went straight to see Selah. She has had her Aunt Val with her to take care of her and she was relaxed when we got there. Funny thing is we could smell her down the hall....39 days of fish oil has quite the brimy smell:) Our sweet little Mermaid:)
She seemed to have a lot of guck coming out of the trache, it was actually bubbling out! The color was greenish and it worried me. Evidently she has had that since she got there and everyone thought it was her "normal". As soon as I said she had never had anything like that, even when she was sick a couple of weeks ago, things started moving. The respitor therapist came and did an xray and a culture of it. Also right after we got there, her oxygen level dropped to the low 90's which really scared me. Never has she had that happen! So she was put on a little supplemental oxygen for tonight just to make it easy on her. (just got an update from Val and her chest xray was clear, still waiting for the culture to come back)
The Rehab is beautiful and her room is huge! It actually looks like a spa:) the staff was very responsive to us and it's been like that for Valerie too. We will meet all the doctors and therapists tomorrow and have some meetings. We are looking forward to it!
We met our new friend in the parking lot of the hospital and he gave us the directions to our hotel and the keys along with some goodies! When we got to the hotel.....we were FLOORED!! Two bedrooms and a bath, living room and kitchen area! The whole place was decorated for Christmas, including a live tree!!! The cupboards were filled with our favorite goodies and so was the fridge! Thank you so much Mandarin United Methodist! We are so grateful to your kindnesses to us!!!!! After we unpacked (what a job-it seemed like my brain was mush!) we ate and it was just so nice not to have to run anywhere to get something to eat! What a blessing to our family. The boys were just amazed that someone would do something like this for us! They were jumping around with happiness at every new discovery:) It was cute, everyone was tired but that woke us all up for awhile:)
So we are all about to fall out, Jon is really sick, he actually took some medicine so you know he is sick! Steve feels better, both little ones have runny noses/coughing...me and Shad are still ok! We 're going to get up tomorrow and start this new phase of Selah's recovery. Please pray for her that she will respond more and more each day!
BTW, Dr Sears sent us some fish oil for us to use including liquid fish oil for the little ones. Since we have a fridge, we opened it tonight and gave some to Sarah in applesauce. She took it and didn't seem to mind it! I'm curious to see what affect it has on her. She is so very delayed, much like a 3 or 4 month old.... Now if we can just trick Sam. but that might be harder to do! Also today I thought we should try and get Sarah into the out patient therapy here. I feel like we "wasted" the last 4 months for her. If we would have known how long we were going to be in NY, we would have gotten Sarah into therapy there. She doesn't walk and her feet/legs turn in. I had taken her for PT, OT, and speech evaluations before we left for NY and I had everything ready for all of them to start therapy when we got home.... since she spent all her time "bed ridden" tied to a bed, she could only lift her head a little and roll when we got to her. Now she pulls herself up and stands by the couch, or in the crib....but she has no idea of how to walk, she puts one foot on top of the other. So maybe we can get her started soon here and work with her also. I called our doctor and they have already sent all the paperwork needed for her to get started! Hopefully we can get a date tomorrow for Sarah to get started in therapy.
We went straight to see Selah. She has had her Aunt Val with her to take care of her and she was relaxed when we got there. Funny thing is we could smell her down the hall....39 days of fish oil has quite the brimy smell:) Our sweet little Mermaid:)
She seemed to have a lot of guck coming out of the trache, it was actually bubbling out! The color was greenish and it worried me. Evidently she has had that since she got there and everyone thought it was her "normal". As soon as I said she had never had anything like that, even when she was sick a couple of weeks ago, things started moving. The respitor therapist came and did an xray and a culture of it. Also right after we got there, her oxygen level dropped to the low 90's which really scared me. Never has she had that happen! So she was put on a little supplemental oxygen for tonight just to make it easy on her. (just got an update from Val and her chest xray was clear, still waiting for the culture to come back)
The Rehab is beautiful and her room is huge! It actually looks like a spa:) the staff was very responsive to us and it's been like that for Valerie too. We will meet all the doctors and therapists tomorrow and have some meetings. We are looking forward to it!
We met our new friend in the parking lot of the hospital and he gave us the directions to our hotel and the keys along with some goodies! When we got to the hotel.....we were FLOORED!! Two bedrooms and a bath, living room and kitchen area! The whole place was decorated for Christmas, including a live tree!!! The cupboards were filled with our favorite goodies and so was the fridge! Thank you so much Mandarin United Methodist! We are so grateful to your kindnesses to us!!!!! After we unpacked (what a job-it seemed like my brain was mush!) we ate and it was just so nice not to have to run anywhere to get something to eat! What a blessing to our family. The boys were just amazed that someone would do something like this for us! They were jumping around with happiness at every new discovery:) It was cute, everyone was tired but that woke us all up for awhile:)
So we are all about to fall out, Jon is really sick, he actually took some medicine so you know he is sick! Steve feels better, both little ones have runny noses/coughing...me and Shad are still ok! We 're going to get up tomorrow and start this new phase of Selah's recovery. Please pray for her that she will respond more and more each day!
BTW, Dr Sears sent us some fish oil for us to use including liquid fish oil for the little ones. Since we have a fridge, we opened it tonight and gave some to Sarah in applesauce. She took it and didn't seem to mind it! I'm curious to see what affect it has on her. She is so very delayed, much like a 3 or 4 month old.... Now if we can just trick Sam. but that might be harder to do! Also today I thought we should try and get Sarah into the out patient therapy here. I feel like we "wasted" the last 4 months for her. If we would have known how long we were going to be in NY, we would have gotten Sarah into therapy there. She doesn't walk and her feet/legs turn in. I had taken her for PT, OT, and speech evaluations before we left for NY and I had everything ready for all of them to start therapy when we got home.... since she spent all her time "bed ridden" tied to a bed, she could only lift her head a little and roll when we got to her. Now she pulls herself up and stands by the couch, or in the crib....but she has no idea of how to walk, she puts one foot on top of the other. So maybe we can get her started soon here and work with her also. I called our doctor and they have already sent all the paperwork needed for her to get started! Hopefully we can get a date tomorrow for Sarah to get started in therapy.
Wednesday, December 12, 2012
Day 38 Fish Oil Study~ I feel like traveling on......
Selah had all our evaluations today. I don't know that she did as well as normal as she seems stressed out but I think that is good, as it may keep her goals more manageable and that is important as she has to meet goals to stay in rehab. Her aunt is taking care of her and reminding them all of who Selah is! I'm so thankful that Valerie is with her, I'd be a mess if she were there by herself!
We will be there by early afternoon and be there for some of her therapies and we will get to meet her new doctors and therapists and see what they have to say. We are excited/anxious to know what they say.... We've stopped north of Charlotte NC and are staying at a great hotel thanks to our friends, calling us and surprising us with a reservation:)
On our way up to Rochester, we stopped in Mt Ariy NC, Andy Griffin's hometown and had a fun day. We took some really cute pictures of the kids that day, it was a good time. Driving past that exit tonight, just broke my heart. I started bawling, remembering that day. All I could think is "if only I could turn back time" Oh God, if we had only known what was before us.....
Don't get me wrong, I'm thankful for how far Selah has come, but she has so far to go to be where she was...will that happen? We just don't know. Today I have had to remind myself again..."do not fear" Long road trips give you a lot of time to think....the future is scary...so many unknowns
Please pray for Selah....pray that she comes all the way back to us!
We will be there by early afternoon and be there for some of her therapies and we will get to meet her new doctors and therapists and see what they have to say. We are excited/anxious to know what they say.... We've stopped north of Charlotte NC and are staying at a great hotel thanks to our friends, calling us and surprising us with a reservation:)
On our way up to Rochester, we stopped in Mt Ariy NC, Andy Griffin's hometown and had a fun day. We took some really cute pictures of the kids that day, it was a good time. Driving past that exit tonight, just broke my heart. I started bawling, remembering that day. All I could think is "if only I could turn back time" Oh God, if we had only known what was before us.....
Don't get me wrong, I'm thankful for how far Selah has come, but she has so far to go to be where she was...will that happen? We just don't know. Today I have had to remind myself again..."do not fear" Long road trips give you a lot of time to think....the future is scary...so many unknowns
Please pray for Selah....pray that she comes all the way back to us!
the kids in the Mayberry Jail (Selah in orange, Sam, Shad and Steve holding Sarah)
Sam in bed! He didn't want to get up this morning
Sam on the trip listening to the bear reading "twas the night before Christmas" for hundreds of miles!!!!
Tuesday, December 11, 2012
Day 37 fish Oil Study...on the way to Florida
This was a very emotional day for us, a day of good-byes to some wonderful people who have walked with us through our darkest days.....
We started the morning saying goodbye to Selah's therapist, Megan. She was such an encouragement to us and helped us to understand Selah better.
Then we said good bye to some of our RMH families, some more staff, our doctor, social workers and a minister friend and his family....
We waited for the transport team to get there and once they were there, things moved fast! I literally had to fight a panic attack when they first walked in. It was hard for me to entrust her to some one's care to go all the way to Florida on a small plane! The team put us at ease immediately and we could tell they really cared about their patients. We walked down with her and that was so emotional for me, I just sobbed the whole way. We happened to go down in the same elevator she was taken up to the PICU on , almost 18 weeks ago. Then we went out the ambulance bay where I had stood waiting to go in to the ER on the awful day (actually where I tried to climb over a cop to get into the ER, if we are to be factual!! LOL) It was snowing...and I couldn't help but contrast the days.... We went back up and so many folks were coming up to us to wish us well, it was hard to control my emotions!
Then we said good bye to some of our RMH families, some more staff, our doctor, social workers and a minister friend and his family....
We waited for the transport team to get there and once they were there, things moved fast! I literally had to fight a panic attack when they first walked in. It was hard for me to entrust her to some one's care to go all the way to Florida on a small plane! The team put us at ease immediately and we could tell they really cared about their patients. We walked down with her and that was so emotional for me, I just sobbed the whole way. We happened to go down in the same elevator she was taken up to the PICU on , almost 18 weeks ago. Then we went out the ambulance bay where I had stood waiting to go in to the ER on the awful day (actually where I tried to climb over a cop to get into the ER, if we are to be factual!! LOL) It was snowing...and I couldn't help but contrast the days.... We went back up and so many folks were coming up to us to wish us well, it was hard to control my emotions!
Then we went over to the RMH and did a news conference with all the news stations of the Rochester area. It still surprises me how much interest and concern the Rochester community has shown to Selah and to us!
We had so much stuff that the RMH offered to ship some for us but our van is packed to the gills:) We only made it to Lewisburg Penn tonight as we are just exhausted and a bit overwhelmed. We hope to do really good tomorrow and maybe even make it to Jax....well we can hope can't we LOL!
The transport team was awesome and kept us up to date as to where they were. Selah had absolutely no issues on the trip and even slept some:) She touched down about 6:30 pm and is now resting comfortably at the rehab with her Aunt Valerie by her side! Thank God for Valerie being able to take off work and come up and stay with her until we can get there. It gives us a great peace of mind knowing she has someone who loves her with her!
Thank you all for your prayers and please continue to pray for us that we have safe travels the rest of the 880 miles (according to my son) until we get to Jax. Tomorrow will be a big day for Selah as she will be evaluated by various therapist, please pray that they will understand who Selah was and is and that God will give them a special love for this little girl and that they will want to fight with us to bring her all the way back! My sister in law is impressed with the rehab and feels good about it so far and that has helped me too. They seem to be understanding about Selah and all her complex issues she had even before the accident. Pray that that will continue.
And I just have to say thank you one more time to Strong's hospital and staff, we will be forever grateful for the wonderful care that our daughter was given. What a great hospital and it is great because it is staffed with great people!!!
Thank you to the Ronald McDonald House, that truly was our "home away from home" We grew to love the staff, Carol, the director, Lori, Patty, Kathy, Cher, Bonnie, Gail, Jack Amy, Deb, and all the volunteers....we had so many kindnesses shown to us..... There are just not words to say how much they all mean to us! If you live in the Rochester area, get involved with the RMH, it is a wonderful help to so many families! They truly live their mission statement! Volunteer, donate, promote, what ever you can do to help them! They work with so many families and give them HOPE!
Thank you ROCHESTER NY for all the love and concern you all showed to our family. Rochester is an amazing community!!
And always we will never forget the ones who helped rescue our children.....
We are so grateful....
Monday, December 10, 2012
Day 36 Fish Oil Study
Jon couldn't sleep so he got up and got over to the hospital at 7 am this morning. He put Selah's "talking nose" on and she wore it for 5 hours with no issues! She had PT, OT and ST with the nose on and they worked her out! She has been very aware today and did great in therapy. We are so proud of her hard work!
Our poor social worker is getting all the details done for her transfer tomorrow, lots of details. It looks like she will-be leaving between 11 am - 1 pm. An Air Ambulance is coming in for her, with a nurse and a respiratory therapist on board. It is going to be a very small 2 engine plane....please pray for her flight! I am a nervous flyer and am certainly nervous about my child flying.....
We will wait to leave until she leaves....we want to make sure that is actually on her way before we leave.
She has collected quite a few stuffed animals and I just found out she can only have one small bag to go with her! We were hoping that we could send most of her things with her but it doesn't look like that will happen! So we are packing up her room. We are going to look like the Beverly Hillbilly's leaving for Florida!
Please keep her and us in your prayers tomorrow. Thank you so much!
Our poor social worker is getting all the details done for her transfer tomorrow, lots of details. It looks like she will-be leaving between 11 am - 1 pm. An Air Ambulance is coming in for her, with a nurse and a respiratory therapist on board. It is going to be a very small 2 engine plane....please pray for her flight! I am a nervous flyer and am certainly nervous about my child flying.....
We will wait to leave until she leaves....we want to make sure that is actually on her way before we leave.
She has collected quite a few stuffed animals and I just found out she can only have one small bag to go with her! We were hoping that we could send most of her things with her but it doesn't look like that will happen! So we are packing up her room. We are going to look like the Beverly Hillbilly's leaving for Florida!
Please keep her and us in your prayers tomorrow. Thank you so much!
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