"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, November 16, 2012
Bless the Lord O My Soul
Bless the Lord, O my soul
O my soul
Worship His holy name
Sing like never before
O my soul
I'll worship Your holy name
The sun comes up, it's a new day dawning
It's time to sing Your song again
Whatever may pass, and whatever lies before me
Let me be singing when the evening comes
Bless the Lord, O my soul
O my soul
Worship His holy name
Sing like never before
O my soul
I'll worship Your holy name
You're rich in love, and You're slow to anger
Your name is great, and Your heart is kind
For all Your goodness I will keep on singing
Ten thousand reasons for my heart to find
Bless the Lord, O my soul
O my soul
Worship His holy name
Sing like never before
O my soul
I'll worship Your holy name
And on that day when my strength is failing
The end draws near and my time has come
Still my soul will sing Your praise unending
Ten thousand years and then forevermore
Bless the Lord, O my soul
O my soul
Worship His holy name
Sing like never before
O my soul
I'll worship Your holy name
Jesus, I'll worship Your holy name
Lord, I'll worship Your holy name
Sing like never before
O my soul
I'll worship Your holy name
Jesus, I'll worship Your holy name
I'll worship Your holy name
I love this song....I highlighted the parts that just make my heart soar!!!! What a song!!! Hope you are blessed by it!
Day 12 Fish Oil study & a BIG thank you!
Evidently Selah knew she had to make daddy and mommy feel better so she did! This morning when the therapist came to get her, the therapist said "Selah let's get UP" So Selah lifted her right shoulder off the bed. The therapist repeated it and Selah responded again. Then the therapist called Jon over and told Selah "let's get up" and Selah lifted BOTH her shoulders off the bed, and turned towards Meg, the therapist!!!!!!! That is big, as it shows understanding and that she can follow directions. That is what rehab looks for! She was holding her head up today and holding her trunk better too. The therapist only has to give her one arm for help. Much less support than she even had to do last week.
When Jon came in, Selah zeroed in on him and held his eyes. Jon started making her little noises and she tried so hard to do it back. The therapist had never seen her do it before and she couldn't believe the "banter" they did back and to. Selah hasn't done that for awhile so it was good to see her do it again!!! And I'm glad the therapist saw it.
There is a little less concern about her left elbow and right thumb. There seems to be no change so it doesn't look like she is drawing up in those areas, it just might be her normal poise. Obviously we only had a few weeks with her and didn't notice that about her. So we aren't as worried about that .
She did all her normal things today with no regression at all. Even being on the therapy ball, she managed to hold her body better. Even last week it was quite a chore for the therapist but today there is a difference. The therapist didn't have to work as hard:)
Jon worked with Selah all day long. We are enrolling her in our own therapy school. :) We want her prepared for the rehab and ready to work with them.
I cleaned our room today and repacked everything. It is a amazing how much junk a family of 7 can get in 3 months! We have our summer clothes gone through and packed. I went through all the things we have been given or bought and sorted things out. We've been given or bought alot of clothes since all we had with us was shorts:) Let me tell you, the thrift stores here in Rochester ROCK:) so I have quite a bit of winter clothes now:) I LOVE thrift shopping!! Especially on Half Price days! That is my retail therapy without feeling like I'm wasting money! And the good thing is if you buy from a thrift store, you are helping another charity out!
Dear Readers, I want to thank you so much! Thank you to the three families and a Catholic School from Ontario NY that gave to the Rochester Ronald McDonald House in our honor!!!!!! That just blessed us so much! RMH has been so wonderful to us through this whole ordeal and we just love the staff! They've become family to us! If you live in this area, and want a GREAT charity to give to, one that really does what it says it does....then give to the Rochester Ronald McD House!!!!! We were also told some others have given in our honor but it's being processed. I am so glad!!!
And thank you to the sweet lady from Perry Oklahoma who sent us a note and gift today! I'm from Perry Fl and thought that was neat:)
http://reecesrainbow.org/38066/sponsorbasas
AND THE BEST......ALMOST $1000 HAS COME IN FOR THIS FAMILY!!!! THANK YOU SO MUCH TO ALL WHO HAVE GIVEN AND PRAYED FOR THEM. THE LITTLE BOY'S PICTURE IS UP ON THEIR SITE NOW....WHAT A DOLL BABY! THEY STILL NEED $3000 BY NEXT WEEK BUT GOD LOVES THE ORPHAN AND HE IS ABLE! IF YOU HAVEN'T GIVEN AND CAN GIVE TO THEM PLEASE PLEASE DO!! I can't help but to put us in their place...being in country and wanting to add another child. We almost added another little girl while we were in Ukraine but her paperwork was not correct...I wanted to bring her home too so I can understand how they feel! If Selah recovers, we want to go back and get her....sometimes I can't think too much about her or it hurts too bad. Another family is going over soon and going to see her and take a dolly to her from us. We've named her Sally in our minds, so please pray for her that God will hold her close to Him and be with her. I even pray that another family will come for her if we can't do it soon. She is in a bad situation......
So please continue to pray for Selah! We need her to cough more, she did some good coughing today but it needs to be consisitant. She needs to get to the point she doesn't need to be sucutioned out and right now she has to be every couple of hours or so. Pray that she makes some big gains and is ready for rehab!
We are still looking for a place to stay in, if you have any contacts, please contact them for us. We are too big of a family to stay in the Jax RMH....
When Jon came in, Selah zeroed in on him and held his eyes. Jon started making her little noises and she tried so hard to do it back. The therapist had never seen her do it before and she couldn't believe the "banter" they did back and to. Selah hasn't done that for awhile so it was good to see her do it again!!! And I'm glad the therapist saw it.
There is a little less concern about her left elbow and right thumb. There seems to be no change so it doesn't look like she is drawing up in those areas, it just might be her normal poise. Obviously we only had a few weeks with her and didn't notice that about her. So we aren't as worried about that .
She did all her normal things today with no regression at all. Even being on the therapy ball, she managed to hold her body better. Even last week it was quite a chore for the therapist but today there is a difference. The therapist didn't have to work as hard:)
Jon worked with Selah all day long. We are enrolling her in our own therapy school. :) We want her prepared for the rehab and ready to work with them.
I cleaned our room today and repacked everything. It is a amazing how much junk a family of 7 can get in 3 months! We have our summer clothes gone through and packed. I went through all the things we have been given or bought and sorted things out. We've been given or bought alot of clothes since all we had with us was shorts:) Let me tell you, the thrift stores here in Rochester ROCK:) so I have quite a bit of winter clothes now:) I LOVE thrift shopping!! Especially on Half Price days! That is my retail therapy without feeling like I'm wasting money! And the good thing is if you buy from a thrift store, you are helping another charity out!
Dear Readers, I want to thank you so much! Thank you to the three families and a Catholic School from Ontario NY that gave to the Rochester Ronald McDonald House in our honor!!!!!! That just blessed us so much! RMH has been so wonderful to us through this whole ordeal and we just love the staff! They've become family to us! If you live in this area, and want a GREAT charity to give to, one that really does what it says it does....then give to the Rochester Ronald McD House!!!!! We were also told some others have given in our honor but it's being processed. I am so glad!!!
And thank you to the sweet lady from Perry Oklahoma who sent us a note and gift today! I'm from Perry Fl and thought that was neat:)
http://reecesrainbow.org/38066/sponsorbasas
AND THE BEST......ALMOST $1000 HAS COME IN FOR THIS FAMILY!!!! THANK YOU SO MUCH TO ALL WHO HAVE GIVEN AND PRAYED FOR THEM. THE LITTLE BOY'S PICTURE IS UP ON THEIR SITE NOW....WHAT A DOLL BABY! THEY STILL NEED $3000 BY NEXT WEEK BUT GOD LOVES THE ORPHAN AND HE IS ABLE! IF YOU HAVEN'T GIVEN AND CAN GIVE TO THEM PLEASE PLEASE DO!! I can't help but to put us in their place...being in country and wanting to add another child. We almost added another little girl while we were in Ukraine but her paperwork was not correct...I wanted to bring her home too so I can understand how they feel! If Selah recovers, we want to go back and get her....sometimes I can't think too much about her or it hurts too bad. Another family is going over soon and going to see her and take a dolly to her from us. We've named her Sally in our minds, so please pray for her that God will hold her close to Him and be with her. I even pray that another family will come for her if we can't do it soon. She is in a bad situation......
So please continue to pray for Selah! We need her to cough more, she did some good coughing today but it needs to be consisitant. She needs to get to the point she doesn't need to be sucutioned out and right now she has to be every couple of hours or so. Pray that she makes some big gains and is ready for rehab!
We are still looking for a place to stay in, if you have any contacts, please contact them for us. We are too big of a family to stay in the Jax RMH....
Thursday, November 15, 2012
Day 11 Fish Oil study
Today made a full week that Selah has had a full dose of fish oil. She still has not had a "storm" We were talking with her therapist about the "storms" and she said when she first working with Selah and she had started storming, she thought it would only get worse. After she got on meds for them, we were told that at some point she probably wouldn't respond to meds forever. We were told to expect the storms to get worse...thank God that hasn't happened. In fact even before the fish oil, she was going about 1 to 2 days between storms but since the fish oil study started there have been no storms. One morning the night nurse told the morning nurse that she had stormed overnight ....we tracked that nurse down and found out that her heart rate had gone up when she had her teeth brushed....and then went down...that is not a storm!!!!! So thankfully we are still storm free
One thing we are worried about is her left thumb seems to be drawing up into her hand. Also her right arm might be drawing up a little at the elbow. Everyone that has had a brain injury has some kind of physical response. Selah has done very differently than most people who have be in a near drowning. Instead of drawing up, she has extended her limbs. It is very unusual for that to happen. But now we see these two things that bother us. We are watching her very carefully. It might not mean anything because her limbs are not tight but they just seem to go back into these certain positions.
She has the first step down trach in and is doing good. But she is not doing good when they try to close the airway and make her use her mouth and nose. She begins to struggle to draw in breath. She also is not coughing enough and still has to be suctioned out. She really has to start coughing. Please pray for that!! We are disappointed!
We had a team meeting today, mostly talking about the transfer to the rehab in Jacksonville. Obviously we have some real concerns. Let me see if I can explain it good to you. Six weeks ago we were turned down for rehab here. That was heartbreaking. The same doctor came in yesterday and did say that Selah had progressed some but they would probably just offer us a 2 week program where they would work with us as parents to be ready to transition home. They are not a pediatric rehab all though they do have kids there, but it's not their speciality.
After talking to the nurse yesterday from Brooks, I felt like they would and could offer Selah more than that BUT it is really up to the insurance company and Selah. The way rehab works now is there are weekly goals, if the child meets them and is progressing, they can stay, if not they are sent home. So Selah has to meet goals. I talked to them about Selah and WHO she was before the accident....very developmentally delayed, from an institution and never had heard English until we met her back in April. We hope that will be taken into consideration. The therapists we have now are awesome and have understood where Selah was BEFORE the accident and do not approach her in the same way they would a normal "eight yr old"
After the meeting today, Jon and I both broke down. We know what lies ahead. We have been the parents of a child with disabilities for almost nine years. We have fought many battles for his health care and his therapy....you have no idea.... We brought Sam home with THREE machines and could get no help.....we know what Florida offers and it is not much!
We have goals for Selah, the main one is getting her off the trach. If that doesn't happen in the hospital or in rehab, then it will be difficult to find someone to work with her once we get home. The therapist we were set to work with is not comfortable with working with her trach....it takes a specialist.
We are concerned we will get Selah to Jacksonville and she'll be there for 2 weeks and then sent home. We ask that you pray that she will get the therapy she needs to rehabilitate her muscles and that all her special circumstances be taken in context. To be honest, since she was so delayed before we are afraid she will be discriminated against in rehab. It happens.....the idea is why put all the effort into a child that is not "normal" already. I can assure you it happens, it has happened to Sam...
Selah has not really done any new things, she has not regressed either but we like new things!! She did take some soup in a syringe today and did really good on swallowing it. She held her head up while I was changing her clothes and did quite well. That is new this week, holding her head up for up to 45 seconds. She was showing some head control last week but it is more this week.
Everything has been baby steps, even when I say something like she held her head up , it's not like she can maintain for more than a minute. We have a long way to go.....
We are discouraged to be honest, lots of reality coming down on our shoulders. We are not quitters, we may be plodders but we don't quit:) But we are sad and worried about several things.
We are still looking for accommodations in Jax. I have several friends looking into things but no one has an answer yet. If you have any contacts please contact them for us.
Thank you for your prayers....don't need any christian advice tonight...just prayers.... we don't know the outcome of things, we are hopeful but please don't say she will be healed or anything like that because you don't know and that does not comfort me for the most part. We may have a long long lonely road ahead and I really don't need platitudes.... Not trying to be mean...but it just gets on my last nerve and I don't have too many left :) (actually I've never had very many lol)
I finally finished reading a great book today someone had sent me about extraordinary women of God. They all faced incredible challenges, more more like what the New Testament saints faced than what the Christan church world of today thinks a good christian will face. It encouraged me to read of the various trials they went through and how they felt. One woman a Korean lady stood under great persecution by the Japanese before and during World War 2 and yet she stood for God, even when she was afraid. Her frank works encouraged me today. She literally had a "Shadrach Meshach and Abendgo" moment when she was told to bow down and worship the Japanese king and their idol in front of others. She refused and then withstood torture for the next 10 years! She shares how she had faith at times and then shook with fear at other times....I can relate although I am not going through something like that. But there are times when my heart is heavy and times when I have more hope...... there was also a chapter in there on Gladys Alyward, one of my favorite missionaries.... I loved this book because it told women's stories of faith warts and all!!!! I believe in that!!! Warts and All!!!
So we are resting in God's peace tonight but we are discouraged and tired.....
One thing we are worried about is her left thumb seems to be drawing up into her hand. Also her right arm might be drawing up a little at the elbow. Everyone that has had a brain injury has some kind of physical response. Selah has done very differently than most people who have be in a near drowning. Instead of drawing up, she has extended her limbs. It is very unusual for that to happen. But now we see these two things that bother us. We are watching her very carefully. It might not mean anything because her limbs are not tight but they just seem to go back into these certain positions.
She has the first step down trach in and is doing good. But she is not doing good when they try to close the airway and make her use her mouth and nose. She begins to struggle to draw in breath. She also is not coughing enough and still has to be suctioned out. She really has to start coughing. Please pray for that!! We are disappointed!
We had a team meeting today, mostly talking about the transfer to the rehab in Jacksonville. Obviously we have some real concerns. Let me see if I can explain it good to you. Six weeks ago we were turned down for rehab here. That was heartbreaking. The same doctor came in yesterday and did say that Selah had progressed some but they would probably just offer us a 2 week program where they would work with us as parents to be ready to transition home. They are not a pediatric rehab all though they do have kids there, but it's not their speciality.
After talking to the nurse yesterday from Brooks, I felt like they would and could offer Selah more than that BUT it is really up to the insurance company and Selah. The way rehab works now is there are weekly goals, if the child meets them and is progressing, they can stay, if not they are sent home. So Selah has to meet goals. I talked to them about Selah and WHO she was before the accident....very developmentally delayed, from an institution and never had heard English until we met her back in April. We hope that will be taken into consideration. The therapists we have now are awesome and have understood where Selah was BEFORE the accident and do not approach her in the same way they would a normal "eight yr old"
After the meeting today, Jon and I both broke down. We know what lies ahead. We have been the parents of a child with disabilities for almost nine years. We have fought many battles for his health care and his therapy....you have no idea.... We brought Sam home with THREE machines and could get no help.....we know what Florida offers and it is not much!
We have goals for Selah, the main one is getting her off the trach. If that doesn't happen in the hospital or in rehab, then it will be difficult to find someone to work with her once we get home. The therapist we were set to work with is not comfortable with working with her trach....it takes a specialist.
We are concerned we will get Selah to Jacksonville and she'll be there for 2 weeks and then sent home. We ask that you pray that she will get the therapy she needs to rehabilitate her muscles and that all her special circumstances be taken in context. To be honest, since she was so delayed before we are afraid she will be discriminated against in rehab. It happens.....the idea is why put all the effort into a child that is not "normal" already. I can assure you it happens, it has happened to Sam...
Selah has not really done any new things, she has not regressed either but we like new things!! She did take some soup in a syringe today and did really good on swallowing it. She held her head up while I was changing her clothes and did quite well. That is new this week, holding her head up for up to 45 seconds. She was showing some head control last week but it is more this week.
Everything has been baby steps, even when I say something like she held her head up , it's not like she can maintain for more than a minute. We have a long way to go.....
We are discouraged to be honest, lots of reality coming down on our shoulders. We are not quitters, we may be plodders but we don't quit:) But we are sad and worried about several things.
We are still looking for accommodations in Jax. I have several friends looking into things but no one has an answer yet. If you have any contacts please contact them for us.
Thank you for your prayers....don't need any christian advice tonight...just prayers.... we don't know the outcome of things, we are hopeful but please don't say she will be healed or anything like that because you don't know and that does not comfort me for the most part. We may have a long long lonely road ahead and I really don't need platitudes.... Not trying to be mean...but it just gets on my last nerve and I don't have too many left :) (actually I've never had very many lol)
I finally finished reading a great book today someone had sent me about extraordinary women of God. They all faced incredible challenges, more more like what the New Testament saints faced than what the Christan church world of today thinks a good christian will face. It encouraged me to read of the various trials they went through and how they felt. One woman a Korean lady stood under great persecution by the Japanese before and during World War 2 and yet she stood for God, even when she was afraid. Her frank works encouraged me today. She literally had a "Shadrach Meshach and Abendgo" moment when she was told to bow down and worship the Japanese king and their idol in front of others. She refused and then withstood torture for the next 10 years! She shares how she had faith at times and then shook with fear at other times....I can relate although I am not going through something like that. But there are times when my heart is heavy and times when I have more hope...... there was also a chapter in there on Gladys Alyward, one of my favorite missionaries.... I loved this book because it told women's stories of faith warts and all!!!! I believe in that!!! Warts and All!!!
So we are resting in God's peace tonight but we are discouraged and tired.....
Wednesday, November 14, 2012
Be a part of something BIGGER than you!!!!
http://reecesrainbow.org/38066/sponsorbasas
Please check out this family on the above link!!!!!
This family went to Sarah and Selah's country to adopt this sweet little girl with Larsen's Syndrome. Since they got there, they've fallen in love with a little boy with CP.....They can also bring him home but need $4000 to do it.... Can't my readers make it happen? I have about 3000 readers a day on here, if everyone gave $1.33, we could make it happen!!!!!
Since we've been here, our debit card has been compromised and the bank had to close it out (thankfully we didn't lose any money) but I can't give electronically to this family but you can and you'll be blessed by doing it.... I'm not saying that you will get a ten thousand fold in return LOL BUT you will be giving a little boy a home!!!! That is priceless! Can you really wrap your head around what this means???? It means a little boy that this family met and feel in love with, can go home with them! They weren't planning on this happening....but it is...be a part of something so much bigger than yourselves!!!!!
The family's blog is on private right now as they are in country and that is what is recommended but believe me I know this family is praying for the finances to ransom one more child and to give that child a home!!!!!
Thank you!!!!
Please check out this family on the above link!!!!!
This family went to Sarah and Selah's country to adopt this sweet little girl with Larsen's Syndrome. Since they got there, they've fallen in love with a little boy with CP.....They can also bring him home but need $4000 to do it.... Can't my readers make it happen? I have about 3000 readers a day on here, if everyone gave $1.33, we could make it happen!!!!!
Since we've been here, our debit card has been compromised and the bank had to close it out (thankfully we didn't lose any money) but I can't give electronically to this family but you can and you'll be blessed by doing it.... I'm not saying that you will get a ten thousand fold in return LOL BUT you will be giving a little boy a home!!!! That is priceless! Can you really wrap your head around what this means???? It means a little boy that this family met and feel in love with, can go home with them! They weren't planning on this happening....but it is...be a part of something so much bigger than yourselves!!!!!
The family's blog is on private right now as they are in country and that is what is recommended but believe me I know this family is praying for the finances to ransom one more child and to give that child a home!!!!!
Thank you!!!!
Day 10....fish oil study....what a day....
Jon went over this morning and I got a call from him and the resident. She felt that perhaps the rehab was not going to take Selah, that was a blow to my gut! She wanted to know if we were comfortable going straight home with her still on the trach....ummm NO! The logistics alone were overwhelming to think of. We talked some more and she said she'd call the rehab and get back to us.
My heart just sank, we feel she has come so far but we realize she has a long way to go. But to think that she would be denied going to a rehab at this point, just made my heart drop! I really had to "cast my cares on Him" This morning and early afternoon, were rough for me!!!!
Well I decided to call the rehab myself. (anyone surprised at that?? LOL) I spoke to the person reviewing our case and we were able to discuss Selah. Thankfully it looks like they will accept her as a patient. The rehab has also spoke to the doctor. There just was lack of communication.... We will probably be transferred the week after Thanksgiving. Selah will be flown down and we will drive down. My sister in law Valerie will be there to meet her and to stay with her until we can get there. All patients are accepted in for two weeks. If she is making progress and meeting goals, then they will keep her longer. If not we will go home because insurance will not let her stay. The first two weeks will be intensive for Selah and for us. We will be trained to take care of her in more practical ways. Hopefully she will meet her weekly goals and be able to stay there. Our number one goal for her is for her to come off the trach. That will be the best place for it to happen at. Certainly better than at home!
SO....please pray that everything will work out...LOTS of logistics to figure out....we have to find a place to stay in Jax....
But more than anything else....pray for Selah, pray that she begins to recover faster than expected. I'm tired today, I'm discouraged....I really don't even have the words to say.....We've seen some progress and it is great, still no storms! But she is far from the child she was on August 14th.... We have high hopes that the fish oil will work for her. She is not near the "magic time" when it is supposed to really start working. She will have blood work next week to see where the markers are at, when they are at a certain point, that is when the recovery seems to really happen and the earliest we can really expect is about one month.
Today both therapists were out and Jon worked with her. She sat up in her car seat for 1 1/2 hours and she was tracking with her eyes. A doctor from St Mary's (the rehab here) did come by and see her and she did remark that she could tell she was tracking and responding. Selah was also moving her left arm independently also. So she is doing some things....I just want her to walk out of here.....I know that is not realistic BUT that is what I want!!!!!
Our real true Hope is in God and today as He has throughout this whole time, He was there to comfort me and to ground my thoughts so they wouldn't go in a million directions. The future is scary and even harder than most families face in this kind of situation as we are so far from home and have the additional stress of that, but I trust that God will work out things in a way that we don't even understand nor can try to figure out on our own. He has proven Himself to be our provider over and over again and I know He will make a way for us. We of all people should not wonder or try to work out things in our minds, as we have seen God do so much for us in the past. I don't want to be like the children of Israel, seeing miracles, then turning around and doubting God the next day!
But I feel very down tonight. I know what most of the doctors expect in Selah's situation and it is not what we want.....they've never seen anyone recover to a normal degree from something like she has gone through and that weighs on me. They would LOVE to see her recover completely and I think they think there is some medical hope in the fish oil, to some degree but the reality is hard. They want to prepare us for a life with a severely disable child. Believe me if you really know me, I am about as realistic as they come, you won't find me "claiming something" but there is something inside of me that just says "NO" to the future they paint for Selah. I'm trying to discern if it is just me or if God is giving me this thought. Obviously no sane person wants to accept a future for their child that keeps her basically bed ridden! However with Sam, we were very accepting of his disablity and just rearranged our lives around it. Maybe that was because he was born with it and we never saw him any different than that. We certainly accepted Sarah and Selah just like there were also. I don't know but everything in me sees Selah back to "her normal" So I don't know the future, one day I'll look back on these words and know whether God was speaking to me or if I was just holding on to a false hope. But tonight I just want to curl up and escape everything......
Thank you for your prayers and support!
My heart just sank, we feel she has come so far but we realize she has a long way to go. But to think that she would be denied going to a rehab at this point, just made my heart drop! I really had to "cast my cares on Him" This morning and early afternoon, were rough for me!!!!
Well I decided to call the rehab myself. (anyone surprised at that?? LOL) I spoke to the person reviewing our case and we were able to discuss Selah. Thankfully it looks like they will accept her as a patient. The rehab has also spoke to the doctor. There just was lack of communication.... We will probably be transferred the week after Thanksgiving. Selah will be flown down and we will drive down. My sister in law Valerie will be there to meet her and to stay with her until we can get there. All patients are accepted in for two weeks. If she is making progress and meeting goals, then they will keep her longer. If not we will go home because insurance will not let her stay. The first two weeks will be intensive for Selah and for us. We will be trained to take care of her in more practical ways. Hopefully she will meet her weekly goals and be able to stay there. Our number one goal for her is for her to come off the trach. That will be the best place for it to happen at. Certainly better than at home!
SO....please pray that everything will work out...LOTS of logistics to figure out....we have to find a place to stay in Jax....
But more than anything else....pray for Selah, pray that she begins to recover faster than expected. I'm tired today, I'm discouraged....I really don't even have the words to say.....We've seen some progress and it is great, still no storms! But she is far from the child she was on August 14th.... We have high hopes that the fish oil will work for her. She is not near the "magic time" when it is supposed to really start working. She will have blood work next week to see where the markers are at, when they are at a certain point, that is when the recovery seems to really happen and the earliest we can really expect is about one month.
Today both therapists were out and Jon worked with her. She sat up in her car seat for 1 1/2 hours and she was tracking with her eyes. A doctor from St Mary's (the rehab here) did come by and see her and she did remark that she could tell she was tracking and responding. Selah was also moving her left arm independently also. So she is doing some things....I just want her to walk out of here.....I know that is not realistic BUT that is what I want!!!!!
Our real true Hope is in God and today as He has throughout this whole time, He was there to comfort me and to ground my thoughts so they wouldn't go in a million directions. The future is scary and even harder than most families face in this kind of situation as we are so far from home and have the additional stress of that, but I trust that God will work out things in a way that we don't even understand nor can try to figure out on our own. He has proven Himself to be our provider over and over again and I know He will make a way for us. We of all people should not wonder or try to work out things in our minds, as we have seen God do so much for us in the past. I don't want to be like the children of Israel, seeing miracles, then turning around and doubting God the next day!
But I feel very down tonight. I know what most of the doctors expect in Selah's situation and it is not what we want.....they've never seen anyone recover to a normal degree from something like she has gone through and that weighs on me. They would LOVE to see her recover completely and I think they think there is some medical hope in the fish oil, to some degree but the reality is hard. They want to prepare us for a life with a severely disable child. Believe me if you really know me, I am about as realistic as they come, you won't find me "claiming something" but there is something inside of me that just says "NO" to the future they paint for Selah. I'm trying to discern if it is just me or if God is giving me this thought. Obviously no sane person wants to accept a future for their child that keeps her basically bed ridden! However with Sam, we were very accepting of his disablity and just rearranged our lives around it. Maybe that was because he was born with it and we never saw him any different than that. We certainly accepted Sarah and Selah just like there were also. I don't know but everything in me sees Selah back to "her normal" So I don't know the future, one day I'll look back on these words and know whether God was speaking to me or if I was just holding on to a false hope. But tonight I just want to curl up and escape everything......
Thank you for your prayers and support!
Tuesday, November 13, 2012
Day 9 fish Oil study!
Another good day...
Today was Jon's day over at the hospital. I got a wonderful phone call from him and the therapist....during therapy Selah was able to hold her head up while sitting on the edge of the bed! She held her head up without any assistance for up to 45 seconds at a time. She had to rest in between times but did it several times:) We were all excited about it! The therapist was giving her some trunk support but she did the head support on her own!
Selah continues to swallow!! She also coughed some:) She deliberately with PURPOSE pushed away the Popsicle after awhile:)
However she was not able to have her trach opening covered in order for her to breath only through her mouth and nose. She got afraid when her trach was covered. Physically she did ok, but it scared her. The therapists are going to work on that with her as she has to do that in order to come off the trach altogether. Please pray that she will be able to work with her therapist on this! We want to see her off the trach!
So all in all good news...I just want it to happen fast! Please keep praying for her. She is improving daily but she still has a far way to go . Thank you for your prayers!
Today was Jon's day over at the hospital. I got a wonderful phone call from him and the therapist....during therapy Selah was able to hold her head up while sitting on the edge of the bed! She held her head up without any assistance for up to 45 seconds at a time. She had to rest in between times but did it several times:) We were all excited about it! The therapist was giving her some trunk support but she did the head support on her own!
Selah continues to swallow!! She also coughed some:) She deliberately with PURPOSE pushed away the Popsicle after awhile:)
However she was not able to have her trach opening covered in order for her to breath only through her mouth and nose. She got afraid when her trach was covered. Physically she did ok, but it scared her. The therapists are going to work on that with her as she has to do that in order to come off the trach altogether. Please pray that she will be able to work with her therapist on this! We want to see her off the trach!
So all in all good news...I just want it to happen fast! Please keep praying for her. She is improving daily but she still has a far way to go . Thank you for your prayers!
Monday, November 12, 2012
Day 8 fish Oil study
Great day!
One full week of NO storms! And one full week of fish oil~~
Today Selah did wonderful with OT and ST. She took water from a syringe and drank it, probably a whole 3ML. I know that is not huge but it is. She swallowed well and tolerated it. During ST she got tired of the Popsicle and she pushed it away 3x! We couldn't help but laugh about it. Her personality is shining through!
Later I was wiping her face with a washcloth and she started sucking on my finger! Honestly it scared me and I jumped:)
Monday is the day for the new attending doctors to come in. One came in that hadn't seen her since late September when Selah was turned down for the rehab hospital here. She was shocked at the change in her, the doctor said Selah had made "significant progress" she continued to say if Selah continues to make more "significant progress" she could start the process to come off the trach!!!!!!! It is not an overnight thing but a process of at least a month, if all goes well. They are very concerned about safety and do not want her to aspirate so we will see how things go. I LOVE the term "significant progress"
Just a little while ago Selah got her new trach. For lack of a better term, it is a step down trach. She is required to use her mouth and nose more to breath through, not just the throat opening. If she tolerates this and so far she has quite well as her oxygen stats are at 100%, the opening in the tube will be blocked altogether forcing her to breath only through her mouth and nose.
She will also have a covering over it called a "nose" she has one on now. The nose acts just like our filter in keeping the air clean that she breaths in Tomorrow her therapist will put on another nose that will enable her to make noise through it!!!! So tomorrow we will hear some yelling. If the new trach had gotten in earlier, the therapist would have done it today but we have that to look forward to for tomorrow!
For the record, Selah smells like the beach, quite fishy:) It has permeated her clothes but to me it is the smell of progress:) At least that is how I am choosing to look at it ! LOLOL!
Thursday we are having a team meeting to look at where we are and where we are going....one thing I learned today is that if Selah is sent to Brooks in Jacksonville Fl, our family is too large to stay at the RMH there. Not every Ronald McDonald House is as flexible as the Rochester NY RMH. We don't split up our family and it wouldn't work anyhow. So if you have any contacts in the Jacksonville Fl area please check them out for me. Please don't send me suggestions for me to check out, I wouldn't contact someone if I dont' have a link with them personally. I am thinking maybe a church might have a "missions house" or something along those lines. We wouldn't be interested in living with anyone, that would be a little too stressful! But if you have contacts, tell them about our family and we will see what happens
Our hope is that Selah will work herself off the trach and be ready to go straight home from here. If that did happen, we would drive home with her:) She would have therapy at home, it is already set up and we would not need as much nursing care.
As always we are just staying flexible, not sure what is going to happen.....
Thank you for your prayers for Selah, please continue to ask the Father to touch and heal her!!!!
One full week of NO storms! And one full week of fish oil~~
Today Selah did wonderful with OT and ST. She took water from a syringe and drank it, probably a whole 3ML. I know that is not huge but it is. She swallowed well and tolerated it. During ST she got tired of the Popsicle and she pushed it away 3x! We couldn't help but laugh about it. Her personality is shining through!
Later I was wiping her face with a washcloth and she started sucking on my finger! Honestly it scared me and I jumped:)
Monday is the day for the new attending doctors to come in. One came in that hadn't seen her since late September when Selah was turned down for the rehab hospital here. She was shocked at the change in her, the doctor said Selah had made "significant progress" she continued to say if Selah continues to make more "significant progress" she could start the process to come off the trach!!!!!!! It is not an overnight thing but a process of at least a month, if all goes well. They are very concerned about safety and do not want her to aspirate so we will see how things go. I LOVE the term "significant progress"
Just a little while ago Selah got her new trach. For lack of a better term, it is a step down trach. She is required to use her mouth and nose more to breath through, not just the throat opening. If she tolerates this and so far she has quite well as her oxygen stats are at 100%, the opening in the tube will be blocked altogether forcing her to breath only through her mouth and nose.
She will also have a covering over it called a "nose" she has one on now. The nose acts just like our filter in keeping the air clean that she breaths in Tomorrow her therapist will put on another nose that will enable her to make noise through it!!!! So tomorrow we will hear some yelling. If the new trach had gotten in earlier, the therapist would have done it today but we have that to look forward to for tomorrow!
For the record, Selah smells like the beach, quite fishy:) It has permeated her clothes but to me it is the smell of progress:) At least that is how I am choosing to look at it ! LOLOL!
Thursday we are having a team meeting to look at where we are and where we are going....one thing I learned today is that if Selah is sent to Brooks in Jacksonville Fl, our family is too large to stay at the RMH there. Not every Ronald McDonald House is as flexible as the Rochester NY RMH. We don't split up our family and it wouldn't work anyhow. So if you have any contacts in the Jacksonville Fl area please check them out for me. Please don't send me suggestions for me to check out, I wouldn't contact someone if I dont' have a link with them personally. I am thinking maybe a church might have a "missions house" or something along those lines. We wouldn't be interested in living with anyone, that would be a little too stressful! But if you have contacts, tell them about our family and we will see what happens
Our hope is that Selah will work herself off the trach and be ready to go straight home from here. If that did happen, we would drive home with her:) She would have therapy at home, it is already set up and we would not need as much nursing care.
As always we are just staying flexible, not sure what is going to happen.....
Thank you for your prayers for Selah, please continue to ask the Father to touch and heal her!!!!
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