Sarah and Selah had appointments with GI (gastro) that had been scheduled for awhile so Selah didn't go to HBOT this morning. We took the girls to Lakeland. Our GI doctor has offices all over. Usually in Lakeland, we don't have to wait very long, NOT today....we waited and waited.... Finally got in....we had a lot to discuss for both girls. I'll start with Sarah.
When we got home from Ukraine, Sarah weighed only 19 pounds, she was 5.5 years old, a little bag of bones. We got home at midnight and had her to the doctor at 9 am this next morning. He ran all the usual tests and we began setting up all the specialists for her to see. All the basic tests were actually ok, despite her obvious malnourishment. She had a terrible vitamin D defiency from never getting out in the sun. So we set up all her specialists appointments for September thinking we'd be home from NY by then. Well we know how that went.... So today I finally got her into see GI. Sarah has DOUBLED her weight since coming home, she is 40 pounds:) Still very small for a girl who is almost 7 years old but much bigger than when we got her. Sarah is the "Poop Queen" she poops 4 to 5 times a day, very loose and very stinky. She has a lot of gas both ways..... so we've worried about her but she is never sick and has gained plenty of weight. She also eats everything pureed. The doctor is doing some tests on her and has put her on an antibodic, just to clear out her GI tract in case something is lurking from Ukraine. Sarah has always had a smell to her, it's not unpleasant but it is different-sort of a sweet smell. But she has no issues with her sugar. It's her skin that smells. I've mentioned it to doctors here and there but no one has been too worried. The GI doc is not too worried either as she has been so very healthy but did mention some metabolic disorders that we can test for. Stuff like that scares me. We are starting with some of these tests and the medicine and then will go from there with things.
Selah is doing great with GI, she has lost some weight since we changed formula but it's ok., We weren't worried about it, the pedisure made her very puffy. We've had all kinds of issues getting some supplies and her formula. He wrote out orders for everything we need so hopefully it will all get straighten out.
Then we drove back home, dropped off food for Steve and Sam and dropped off Sarah and took Selah to HBOT. I got her set in there and went and picked up Shad. I got back with him and it was time to take Selah home.....
I got home, put together a casserole and am doing this blog before I fall asleep!!!!!! What a busy day!
Yes I have vague memories of the days before we had kids....very very vague memories.....
Selah will make up this morning's session and have an extra morning of HBOT at the end. We normally wouldn't miss but we really had to get in and have all her stuff straightened out and Sarah needed to see the doctor too.
So friends I am really tired tonight. Thank you all for your prayers. Thank you for your emails and comments on here. I really LOVE hearing from you!!!!!!
"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!
Wednesday, November 6, 2013
Tuesday, November 5, 2013
My Day
This time change is GREAT! The clock wasn't changed in my room so I jumped up frantic at 8:50 (really 7:50 am) this morning because the PT would be here in 10 minutes and the kids weren't up! Well since she doesn't come till 9am we were GOOD! Got the kids up, changed, breakfasted, put chili in the crock pot for tonight, got myself all ready....all before 9 am:) I think I'll leave the clocks alone LOL
Then we had a little scare with Selah. Our nurse took her to HBOT but was back in just a few minutes, her "mickey" gtube had come out! Ever so often the balloon inside breaks. Either it reacts to the fish oil or we just got a batch of bad ones. So then he left again with her. She still got all her therapy time in. Our weekday nurse is able to take her for me in the mornings which really helps out. Friday-Sunday we have go with the nurse to help transport her. I really appreciate our day nurse for taking her by himself, it really frees me up! I go in the afternoons.
We haven't seen anything new with Selah but we are still waiting.
I should share that last weekend, before she started HBOT on Friday she went poop with no medicine! And has been pooping ever since on her own! We are all very happy about that! I don't think it had anything to do with HBOT since she started the early morning before she went in for her first treatment but boy are we proud of her! There had been a little talk about wondering if her gut was somewhat shutting down some.... Glad that doesn't seem to be the case!
Please keep her in prayer!!!!
Today after school Shad and I went to Walmart. It was "big" purchase trip meaning all the big things, the waters, the dog food, cat food, big bags (40 pound) of salt for our water treatment (if you have well water you understand) paper towels, toilet paper. and baby wipes (we buy the big boxes LOL) and paper plates and bowls. We had 2 buggies when we got to the cashier, I got there first and helped move Shad's buggy behind me. A lady was coming up as I was doing this. This lady asked me in an odd way if he was with me or waiting for his mother. You know I understand he is Asian but that really ticked me off. I told her quite sharply that I WAS his mother. Shad starts snickering... THEN she asked if she could go ahead, granted we did have 2 buggies but they were big things and a quick scan, she on the other hand had a buggy filled with all kinds of things. I told her NO. I'm sure someone will think I'm just a witch but I felt slightly insulted and I was quite tired because I wore heels with my jeans and just did not feel like being nice!!!! She grumbled and walked off. Everyone around me started laughing....at least that made me feel better and not like I was acting too much like a witch. The guy ahead of me turned and just shook his head at her and then said "the nerve of some people" That made me feel like better although right then I just didn't care too much.
WOW have I been really honest in my last couple of posts....and yet no mean responses LOL! When I am open about something we are currently dealing with like Sam's self hurting/anxiety or my issue with Steve's game systems, I feel really really vulnerable. It's not so bad when I share something that happened years ago....but something that is not resolved is harder for me to share about. Thanks for being nice :)
I'm still in amazement DAILY as I see all the hits this blog gets.....I just don't understand WHY people read it. I'm really grateful just amazed that anyone ever comes back:) LOL I know I don't get 2000 NEW people every day so I have to assume that many people come back daily and read it. I average between 2,000 and 3,000 hits a day.... It blows me away! Actually it scares me some too! When I read over my blog posts, I wonder what people think about what I share. My fear is I am such a train wreck that people just can't help coming back to see what new stupid thing I wrote LOL!!!! I do LOVE getting emails and messages from you guys. Please feel free to email me. I respond to each email.
I've talked here about The Shepherd Crook Ministry . They had a listing for Shad back when we adopted him. they list, fund raise and advocate for special needs kids who are harder to find families for. It's led by Scott and Kathy Rosenow who just inspire me daily!
Here is a picture of them with their family that are still at home. Scott's the tall guy and Kathy is right beside him in orange. Most of their younger kids are adopted, several with special needs. They have older children who are married and carrying on their family's tradition by adopting. It is a beautiful thing!
Well they made an announcement today....you can read it here.... http://us5.campaign-archive2.com/?u=f14884e6c88d4b68239654ec5&id=fba2e06953&e=9c7b6bfa20 they are adopting AGAIN....Below is the picture of the lucky little girl who will be joining their family!
"who me?"
she has many medical needs and will need a lot of care
If you could give towards this adoption, it would be a great thing. You can look at their link and it will tell you how to be able to give to be a part of this.
I know I bring up many situations where you can be a part of things by giving. I LOVE to give towards adoption, just to be a part of a child finding a family is a great feeling! And I really do think you will have a reward in heaven for giving towards adoption of special needs kids or any kid.... I guess having walked into orphanages and seen all I have seen, I KNOW God does not want those children to live and die like that... Just heard today of a baby passing away, with no medical care....so sad. So go to their link and think/pray about giving to this wonderful family!!! They cared about Shad many years ago and fought to see that he had a family..... I appreciate that very much!
Monday, November 4, 2013
Challenges of parenting!
So I have a very funny Shad story.... he was our usher on Sunday for the offering for orphans.....unbeknownst to me was his method of being an usher. His method, I was told by my husband, who was laughing hysterically, was to stand in front of each parishioner until they gave! We did talk to him last night about the correct gracious way to take up an offering, however we were still laughing so much about it that I'm not sure he paid us much attention! Shad is such a funny guy:) Love that boy!
Our wonderful nurse took Selah this morning to HBOT so I could do paperwork and I did do some! I FINALLY addressed the thank you cards to all the people who helped us in our insurance fight! It was not the easiest thing to get the governor's address LOL. I also paid bills, that is a good thing to do and on time. I HATE paying bills, not just because it makes our bank account go down, I just hate the chore of it! I did a bunch of calls for various things....left messages all medical, finally got one call back today.
The kids had PT and OT today in between Selah's therapies. Then it was time for her to go back to HBOT. I had time to drop her off and go in for a few minutes before going to get Shad. In those few minutes, the discussion turned to food and then to DOUGHNUTS. I fought temptation hard but when I picked up Shad I asked his opinion and he really thought we should go and buy doughnuts! Thank God because I was craving them so bad! We bought a dozen and took them back to HBOT. I didn't know if the health conscious staff would eat any....they did LOL!
Steve is working hard on his last few books. He wants to get a job but we told him he has to finish his books before he can get a job. I think he will be done by Christmas or January.
Shad made ALL A's in school, all high A's! In just a 9 week period, he completed basically a half of year of work. He did 5 or 6 books in each subject! I'm very happy with his progress. The boys use a curriculum that allows the child to work at their own pace. We'd love to see Shad finish with his curriculum early and enroll in college while still in high school. I know he has a ways to go but it could happen!
I don't usually read too many blogs because I am afraid I will plagiarize them without meaning to do so LOL but today I was researching something else and came across a really good blog.
http://www.smockityfrocks.com/2012/07/10-signs-your-child-might-be-spoiled-and-what-to-do-about-it.html this lady totally cracks me up! I read several of her posts and totally agreed with everything she said which is unusual for me LOL This post is even better! http://www.smockityfrocks.com/2012/06/are-your-kids-spoiled.html
Between these two posts I really started thinking.....
We expect a lot from our kids. We hear that all the time from friends and relatives. We expect our older boys to do chores at home and at church and to do them willingly without expecting payment or a specific reward. We do not give allowances, we do not do rewards for them doing stuff unless you count getting pizza occasionally after a job is done as a reward. I have told my boys that they are "working for God" when they do work at the church and that they will get their rewards in eternity LOL Now we do fun things as a family and they get to do special things individually too at times BUT we don't usually give them the idea it is a "payback" for some specific job. We feel like kids need to learn to work and that it is a part of life. It's just good to learn to do things without feeling like they need to have a reward.
Recently Steve somewhat kidded around about the things he had done to help me that morning.....he changed both kids and fed them breakfast. I told him that he should read "Little House on the Prairie" and read how the young girls worked in the fields daily and then come and tell me about all he had done LOL! That shut him up!
Well months and months ago, Steve started pestering us for a specific new game system that is coming out. I do truly HATE any type of video game and feel they are all spawns of Satan.... not because they are so evil (our kids don't get evil games) but the video games SUCK out the brains of children and teens....just suck them out and take them to outer space!
Anyhow I gave in to him.....He has been such a great help this past year to us. So I ordered this system and immediately regretted it! But it was so complicated, I could not figure out how to cancel the order. It's not that I don't appreciate my son, I really really do. But I don't think this was the best way to show appreciation! And I HATE anything to do with video games!
He thinks it is the best way for us to show our appreciation to him......
Such a dilemma, after I read this blog I automatically felt like a bad mother! I really don't want my kids to get an entitlement mindset!
I'm still not in a happy place with this whole thing....I don't like to do things where I don't feel peace about it. On one hand of course I love making my kids happy....but on the other hand, I don't want them to get their brains sucked out anymore than they are have had LOL! Plus it was more expensive than I anticipated, of course Steve had an answer for that too since we didn't do much of a Christmas the last two years and he didn't complain at all. We didn't do anything much for his birthday last year so he succeeded in making me think this was a 2 Christmas and 2 birthday presents combined! Let me tell you, he is good....
UGH!!!! I'm not happy with myself! This blog really made me think. Take the time to read it.
I am thankful, I think we have made good choices with parenting our kids. There are a few things that I would change if I could go back and the number one thing would be video games- there would be NONE in our home! You have no idea but VG are the bane of my existence and I have no one to blame but ourselves!!! I know we could still yank them and sell them all but then a small part of me thinks how much Steve and Shad enjoy them and of course I like my kids to enjoy things....but.... we set limits with them and they are pretty compliant. So this is the dilemma, that I'm still going through. I like to give things to make my kids happy and be happy at the same time and I'm not!
The complications of being a parent!
The blog actually gave me some really good tips about how to get young children to sit still in church. Sam totally loves church and sits on the front row right by the aisle so he is right in front of the pulpit. It is unreal to see him come in and sit himself down. He is extremely well behaved in church and actually seems to respond. It took some years of me working with him gently.
Sarah LOVES the music. Since we sit on the front row, I let her twirl on the floor. No one can really see her and she doesn't disturb anyone. She generally will sit either in a chair or on the floor by my leg for most of the service. However she has started doing a new thing. She touches everything, which is good. But she touches things by lightly hitting them. We are working on this. But sometimes she will hit the stage area and it picks up on the sound system. Usually I have to take her out about mid way the sermon. I've been taking her to the office where I can still hear and letting her play on the floor. The blog gives the suggestion that when you take a small child out of service, don't allow any playtime or then the child will think "I'll make noise, get to go out and play" That was a light bulb moment for me! So now if I take Sarah out, she'll have to sit on my lap and not get down in the office. I think she understands enough that once it doesn't become fun, she won't want to do it.
We don't feel our little ones (Sam and Sarah and obviously Selah) should be spanked. I don't have a problem with spankings, I think it helps to remind kids to behave but I also think the child should be fully able to understand spankings. With them (and of course Selah too before the accident) we mostly "disciplined" them by removing them from the situation. I have tried putting Sam in a "time out" before in his crib and all he did was fall asleep LOL. Because of Sarah's situation, coming from where she did, with the understanding she has, I could never use" time out " for her. That would be too much like rejection for her I believe. With her if I say NO she does seem to understand and will stop the behavior (like the light hitting) for a few minutes at least. It's challenging to train up special needs children with low mental understanding. BUT I've seen some special needs adults who had NO discipline or anyone ever saying NO and they were brats and very hard to deal with. I believe children crave order in their lives.
Sam can be very impatient for things like food and we have catered to him probably a bit too much in the past. He can be very demanding and we've always tried to meet his needs quickly so he didn't get upset. It has seemed like that makes him even more demanding!
Sam has always "bit" on a finger, for years he has done this. Then he began biting the same finger on the other hand. We've worked with him and tried various things, mostly trying to do whatever we could NOT to frustrate him.
Well we have noticed since we came back home a newer level of frustration with him. Now he sometimes bites the top of his one hand. Occasionally, he has pinched himself (he used to pinch us if he was mad) and recently he brings both hands together and pushes on his forehead to the point he has a red spot.
Our PT suggested more out door time and "brushing him" I've been doing that pretty consistently for about 2 weeks now with no real change in Sam. I set an appointment with his neurologist to talk about this. I think Sam is dealing with anxiety and while I am not one to want to medicate myself or a child, I want to see what the doctor says about all of this. We had talked a couple of years ago about the finger biting and the doctor basically told me to just keep him busy and keep the frustration level as low as possible, which we have done.
I think, we may try a light anxiety medicine if the doctor thinks that is the way to go and then while he is on the meds, try really working with him to find other ways of dealing with frustration. It is hard when your child is non verbal. Looking at the situation, I really think we did wrong in catering to him as much as we have done. Now if we do anything "out of schedule" he gets so upset. he is an easy going child in many ways, but there are things that really upset him. One thing that is hysterically funny is if anything changes the order of the church service.....one time I was sharing several prayer requests and he started making his "unhappy sound" It was like he was saying "sit down and shut up and let daddy get on with the service!" He did the same thing last Sunday as I was sharing about Orphan Sunday LOL He knows the order of the service and he doesn't like that to change. He also does NOT like if the service is late getting started. Sometimes Jon will be a few minutes late since he does a service at the prison before our church service and Sam will get very frustrated (so does Mama LOL) I've told our music minster to "just go ahead and start the service, Sam is mad" LOL it's really funny in those situations but it is something we need to work on with him. We had tried a communication board/system before and he didn't understand it. I think we are going to try one again and see if his level of understanding has gotten to a place where he could communicate with us. It could be he is frustrated by not being able to communicate his wants/needs to us.
Sarah has no behaviors like Sam does despite all the years in a mental institution!
Again the complications and challenges of being a parent!
----------------------------------------------------------------------------------------------------------------------------
So today is day 4 of HBOT, we haven't seen any changes with Selah except she seems exhausted! This time around the morning and afternoon sessions are much closer together and I don't think she likes it at all! If we do it again, I'll try to get better times for her.
Last time it was on day 10 I think, that she started the tongue movement so we'll see what happens next week. Please keep praying for our sweet LaLa!
Our wonderful nurse took Selah this morning to HBOT so I could do paperwork and I did do some! I FINALLY addressed the thank you cards to all the people who helped us in our insurance fight! It was not the easiest thing to get the governor's address LOL. I also paid bills, that is a good thing to do and on time. I HATE paying bills, not just because it makes our bank account go down, I just hate the chore of it! I did a bunch of calls for various things....left messages all medical, finally got one call back today.
The kids had PT and OT today in between Selah's therapies. Then it was time for her to go back to HBOT. I had time to drop her off and go in for a few minutes before going to get Shad. In those few minutes, the discussion turned to food and then to DOUGHNUTS. I fought temptation hard but when I picked up Shad I asked his opinion and he really thought we should go and buy doughnuts! Thank God because I was craving them so bad! We bought a dozen and took them back to HBOT. I didn't know if the health conscious staff would eat any....they did LOL!
Steve is working hard on his last few books. He wants to get a job but we told him he has to finish his books before he can get a job. I think he will be done by Christmas or January.
Shad made ALL A's in school, all high A's! In just a 9 week period, he completed basically a half of year of work. He did 5 or 6 books in each subject! I'm very happy with his progress. The boys use a curriculum that allows the child to work at their own pace. We'd love to see Shad finish with his curriculum early and enroll in college while still in high school. I know he has a ways to go but it could happen!
I don't usually read too many blogs because I am afraid I will plagiarize them without meaning to do so LOL but today I was researching something else and came across a really good blog.
http://www.smockityfrocks.com/2012/07/10-signs-your-child-might-be-spoiled-and-what-to-do-about-it.html this lady totally cracks me up! I read several of her posts and totally agreed with everything she said which is unusual for me LOL This post is even better! http://www.smockityfrocks.com/2012/06/are-your-kids-spoiled.html
Between these two posts I really started thinking.....
We expect a lot from our kids. We hear that all the time from friends and relatives. We expect our older boys to do chores at home and at church and to do them willingly without expecting payment or a specific reward. We do not give allowances, we do not do rewards for them doing stuff unless you count getting pizza occasionally after a job is done as a reward. I have told my boys that they are "working for God" when they do work at the church and that they will get their rewards in eternity LOL Now we do fun things as a family and they get to do special things individually too at times BUT we don't usually give them the idea it is a "payback" for some specific job. We feel like kids need to learn to work and that it is a part of life. It's just good to learn to do things without feeling like they need to have a reward.
Recently Steve somewhat kidded around about the things he had done to help me that morning.....he changed both kids and fed them breakfast. I told him that he should read "Little House on the Prairie" and read how the young girls worked in the fields daily and then come and tell me about all he had done LOL! That shut him up!
Well months and months ago, Steve started pestering us for a specific new game system that is coming out. I do truly HATE any type of video game and feel they are all spawns of Satan.... not because they are so evil (our kids don't get evil games) but the video games SUCK out the brains of children and teens....just suck them out and take them to outer space!
Anyhow I gave in to him.....He has been such a great help this past year to us. So I ordered this system and immediately regretted it! But it was so complicated, I could not figure out how to cancel the order. It's not that I don't appreciate my son, I really really do. But I don't think this was the best way to show appreciation! And I HATE anything to do with video games!
He thinks it is the best way for us to show our appreciation to him......
Such a dilemma, after I read this blog I automatically felt like a bad mother! I really don't want my kids to get an entitlement mindset!
I'm still not in a happy place with this whole thing....I don't like to do things where I don't feel peace about it. On one hand of course I love making my kids happy....but on the other hand, I don't want them to get their brains sucked out anymore than they are have had LOL! Plus it was more expensive than I anticipated, of course Steve had an answer for that too since we didn't do much of a Christmas the last two years and he didn't complain at all. We didn't do anything much for his birthday last year so he succeeded in making me think this was a 2 Christmas and 2 birthday presents combined! Let me tell you, he is good....
UGH!!!! I'm not happy with myself! This blog really made me think. Take the time to read it.
I am thankful, I think we have made good choices with parenting our kids. There are a few things that I would change if I could go back and the number one thing would be video games- there would be NONE in our home! You have no idea but VG are the bane of my existence and I have no one to blame but ourselves!!! I know we could still yank them and sell them all but then a small part of me thinks how much Steve and Shad enjoy them and of course I like my kids to enjoy things....but.... we set limits with them and they are pretty compliant. So this is the dilemma, that I'm still going through. I like to give things to make my kids happy and be happy at the same time and I'm not!
The complications of being a parent!
The blog actually gave me some really good tips about how to get young children to sit still in church. Sam totally loves church and sits on the front row right by the aisle so he is right in front of the pulpit. It is unreal to see him come in and sit himself down. He is extremely well behaved in church and actually seems to respond. It took some years of me working with him gently.
Sarah LOVES the music. Since we sit on the front row, I let her twirl on the floor. No one can really see her and she doesn't disturb anyone. She generally will sit either in a chair or on the floor by my leg for most of the service. However she has started doing a new thing. She touches everything, which is good. But she touches things by lightly hitting them. We are working on this. But sometimes she will hit the stage area and it picks up on the sound system. Usually I have to take her out about mid way the sermon. I've been taking her to the office where I can still hear and letting her play on the floor. The blog gives the suggestion that when you take a small child out of service, don't allow any playtime or then the child will think "I'll make noise, get to go out and play" That was a light bulb moment for me! So now if I take Sarah out, she'll have to sit on my lap and not get down in the office. I think she understands enough that once it doesn't become fun, she won't want to do it.
We don't feel our little ones (Sam and Sarah and obviously Selah) should be spanked. I don't have a problem with spankings, I think it helps to remind kids to behave but I also think the child should be fully able to understand spankings. With them (and of course Selah too before the accident) we mostly "disciplined" them by removing them from the situation. I have tried putting Sam in a "time out" before in his crib and all he did was fall asleep LOL. Because of Sarah's situation, coming from where she did, with the understanding she has, I could never use" time out " for her. That would be too much like rejection for her I believe. With her if I say NO she does seem to understand and will stop the behavior (like the light hitting) for a few minutes at least. It's challenging to train up special needs children with low mental understanding. BUT I've seen some special needs adults who had NO discipline or anyone ever saying NO and they were brats and very hard to deal with. I believe children crave order in their lives.
Sam can be very impatient for things like food and we have catered to him probably a bit too much in the past. He can be very demanding and we've always tried to meet his needs quickly so he didn't get upset. It has seemed like that makes him even more demanding!
Sam has always "bit" on a finger, for years he has done this. Then he began biting the same finger on the other hand. We've worked with him and tried various things, mostly trying to do whatever we could NOT to frustrate him.
Well we have noticed since we came back home a newer level of frustration with him. Now he sometimes bites the top of his one hand. Occasionally, he has pinched himself (he used to pinch us if he was mad) and recently he brings both hands together and pushes on his forehead to the point he has a red spot.
Our PT suggested more out door time and "brushing him" I've been doing that pretty consistently for about 2 weeks now with no real change in Sam. I set an appointment with his neurologist to talk about this. I think Sam is dealing with anxiety and while I am not one to want to medicate myself or a child, I want to see what the doctor says about all of this. We had talked a couple of years ago about the finger biting and the doctor basically told me to just keep him busy and keep the frustration level as low as possible, which we have done.
I think, we may try a light anxiety medicine if the doctor thinks that is the way to go and then while he is on the meds, try really working with him to find other ways of dealing with frustration. It is hard when your child is non verbal. Looking at the situation, I really think we did wrong in catering to him as much as we have done. Now if we do anything "out of schedule" he gets so upset. he is an easy going child in many ways, but there are things that really upset him. One thing that is hysterically funny is if anything changes the order of the church service.....one time I was sharing several prayer requests and he started making his "unhappy sound" It was like he was saying "sit down and shut up and let daddy get on with the service!" He did the same thing last Sunday as I was sharing about Orphan Sunday LOL He knows the order of the service and he doesn't like that to change. He also does NOT like if the service is late getting started. Sometimes Jon will be a few minutes late since he does a service at the prison before our church service and Sam will get very frustrated (so does Mama LOL) I've told our music minster to "just go ahead and start the service, Sam is mad" LOL it's really funny in those situations but it is something we need to work on with him. We had tried a communication board/system before and he didn't understand it. I think we are going to try one again and see if his level of understanding has gotten to a place where he could communicate with us. It could be he is frustrated by not being able to communicate his wants/needs to us.
Sarah has no behaviors like Sam does despite all the years in a mental institution!
Again the complications and challenges of being a parent!
----------------------------------------------------------------------------------------------------------------------------
So today is day 4 of HBOT, we haven't seen any changes with Selah except she seems exhausted! This time around the morning and afternoon sessions are much closer together and I don't think she likes it at all! If we do it again, I'll try to get better times for her.
Last time it was on day 10 I think, that she started the tongue movement so we'll see what happens next week. Please keep praying for our sweet LaLa!
Sunday, November 3, 2013
Sunday Post.... GRACE CHURCH
Sam had a new outfit and Sarah had a new dress that a friend had sent so Steve took some pictures before church for me since I was gone with Selah to HBOT.
these two are so my twins:)
So when the nurse and I got to the HBOT clinic, THIS van was parked there....LOL
I just have to say IF marijuana was ACTUALLY prescribed like any other dangerous drug that would be ok with me. BUT we can look at the states that have legalized it "for medical purposes" and see that soon it becomes legal for recreational purposes.... They seem NOT to hold anyone accountable. While we were getting Selah into the van to leave, a lady came up to take a picture and she was ALL for it. However to be quite honest, having worked with drug addicts for years, it was obvious the lady had had some issues in that area.....probably within the last few hours...... The nurse and I just rolled out eyes and got Selah into her car seat ! LOL
We got back to the church in time for me to share about Orphan Sunday. If you know me, I do NOT cry in front of people....unless I am talking about my little ones or Orphans....so this morning I bawled as I shared about the two orphans I am committed to raise funds and find families for. Our church gave over $150 with more to come. I appreciate the fact that they have opened their hearts to something they really didn't know much about before the last couple of years. Sometimes I hear of churches not getting behind families who are adopting or they don't want to know about the world outside their 4 walls...I'm so thankful Grace Church of Zephyrhills Fl is not like that!! Our church has changed and grown so much over the past 7.5 years. We are so blessed to have lived through the changes (LOL) Looking over an almost full church this morning, seeing folks wipe their eyes as I shared our story ..... it was a blessing!!!!
We are so excited about our church. I know I've mentioned it before but we came to a small, dying, physically falling down, "Sanford & Son" train wreck ... The few families here, were all inter related and nothing had changed in 25 years. The buildings were really almost falling down, there was a back addition to the church that was leaning, holes on the church's platform, pews that had so much termite damage that between services a new pile of sawdust would be on the old RED carpet. We hauled off over 5 dump truck loads of just plain trash the first couple of months we were here....it was unreal!
Then as the years went by, God began to do some things. One of the things was to move out some people. I can love and care about folks, but still know they needed to find another church home. One reason was some folks had never seen or experienced much of the Christian world outside this church. They were taught that this little church was the beginning and ending of their spiritual life. In other words, for them to go to another church would almost, if not be a sin. Some folks came here just out of tradition, there was no deep relationship with God nor any Christian growth that was evident. Sometimes folks need to be challenged. Now I am all about being faithful to a church and having a church home BUT you can never cling to a specific church or exalt a specific pastor above God. I think it is almost always a good thing for a church when the church loses people.....that sounds funny coming from a pastor's wife right??? LOL Over the years, we feel like God has pruned our church. It's not always been the easiest thing but it has been a good thing.
When we took the church almost 8 years ago, we didn't' think we'd be here that long. Jon has always had various ministerial offers but we felt we could help out for a while. Then as we began really focusing on the church, God really started giving us a vision for this church. Before anything could happen, God used some circumstances to basically empty the church LOL. That was not the funniest time but we knew that God had something bigger for this church and we realized that sometimes things or people have to CHANGE to CHANGE!
We just determined to stay faithful to what God had set before us. We never defined ourselves, this church by numbers or by situations.
God worked HUGE miracles to provide all the necessary labor and building supplies to totally redo the whole campus. We made a decision that blew some folks away to give back a large donation that had been given to the church for seemingly selfish/control purposes... I can laugh about it now but when I dropped that check in the mailbox.....I thought I'd throw up LOL!!!!!! Maybe not that bad but...... My husband said "God will provide or the church will fall down...." guess what? It didn't fall down:)
God has been faithful!
We had this great new renovated church and fellowship hall....but it was rather empty!
So what did we do? We just put it in God's hands. In the books of Acts, the bible says "God added to the church daily, those who were to be saved" In the evangelical world there are all kinds of "programs" and "philosophies" about church growth. They just ring false to us. I don't' say that they are evil programs or philosophies but we are not comfortable with using them.
We just kept being faithful to what God had told us to do. Pastor the church, pastor the prison, take care of orphans, love folks into the kingdom.....
Then we were gone to Ukraine and then the accident happened and we were gone for almost 6 months to NY..... we had a couple of great guys who filled in for us while we were gone but they had other jobs/ministries they couldn't devote a lot of time to the church. Jon and I discussed it ONCE while Selah was sick.... Jon said "God will take care of it or it will close" ( You see how he thinks huh?) We didn't really worry about things, there was nothing we could do anyhow....
It didn't' close....
We came home, there was some more pruning.....
THEN....God began doing some amazing things....really amazing things....
We have a "Family Intergrated Church" philosophy.... actually it USED to be called, the whole family going to church together until churches began offering children's church and teen church during regular church times. Over the past 4 or 5 years, the whole idea of a children's church or a teen church became worrisome to us. When we first came here, we looked for both a youth pastor and a children's pastor. We did have one children's pastor who really pastored the kids and she is now a missionary. But other than her, it just was not a good situation, we never felt good about the kids being out of church. We had a youth pastor.....let's just say....DIASTER in so many ways.... And we really started thinking, praying and looking at things. We began to see that separating the children and youth is "new thing" in the church world. It started in the 70's and now most Christian churches have children's church during the main worship time and often have a youth church also. If we look back on the decline of the young adults in church, it can so easily be traced back to the advent of the separation of kids and their families. Now we are not militant but we look back to how we were raised, in church with our families...not in some little room coloring or hearing a little story. We were in church worshipping and learning with our families.
We feel that is probably the best way for children/teens to learn about God, it worked for centuries in the church world.......
Wikiped defines Family Intergrated Church as
A family integrated church is one in which parents and children ordinarily attend church services together, children stay all through church services without attending Sunday school or children's ministries, and organized groups and activities for children and youth are normally non-existent. Other terms used are family discipleship churches, family-centered ministry and inclusive-congregational ministry.[1]A spectrum of such churches exist with some completely eliminating all age-segregation and others allowing for some in certain contexts. Although segregation may take place during weekday events, family-integrated churches are generally united in having children in the main worship service.[2] Timothy Paul Jones notes that in the family-integrated ministry model, "all age-graded classes and events are eliminated."[3] Family integrated churches emphasise inter-generational ministry and the "parents' responsibility to evangelize and disciple their own children."[1] Some advocates base this on the idea that families are the "God-ordained building blocks of the church."
We came to this idea on our own, then we were told it is a whole movement LOL! We've done things this way for at least 3 years and really see fruit in our kids' lives. Now we have other families coming with their kids. It's great!
Then we had a couple move here who have a motorcycle ministry. Then we had the privilege of partnering with a Spanish church to provide services. Then we had a couple who went to a main line church who just wanted go deeper start coming and now they are starting a Sunday school class. We had families make new commitments to attend the church in order to grow the kingdom.
It's been an incredible few months. No we're not running in the hundred's yet....but we run above 30 serious believers every week, now for a few months....we're reaching folks through prison ministry, orphan ministry, Missions, that may never attend our church but we are serious about Kingdom building....not building our own little kingdom. What I love is almost everyone who has become a part of our church have just moved to the area, or just got serious with God or are seeking a deeper type of walk..... No one has come because they were mad a preacher or didn't like something that happened in their church! One time we had a family visit our church and all they did was bad mouth another pastor. I told them they needed to go and make things right with the pastor and the church and that we were not interested in building a church full of disgruntled church attenders LOL Jon said I'd do well to read "How to win friends and influence people" We actually just laughed about it. Recently a friend of mine (who is much like me....I know that is scary!) was told the same thing...and she replied "I have enough friends and Jesus can influence the others" LOL
So we feel like we are at the beginning of something really great happening here! Jon & I are all about reaching out to the ones that society forgets about....the prisoners, the orphans, the widows, the drug addicts, the "strangers", the elderly, the disabled....I don't share that in a prideful way, but that is where our focus in ministry has always been and sometimes it has been lonely reaching out to folks that no one else cared much about. I don't know if lonely is the right word but as far as other ministers, for the most part, don't "get" us.... We loved the ministry that God has given us, it's just not many others were that excited about it. We don't have any enemies (that I know of LOL) but we've just been "different" from the beginning. I think most of the ministers who know us like us very much, they just don't understand our focus.....
But we are doing what God has put on our hearts to do and it is exciting!
So we are looking towards the future here at Grace Church! Come join us if you are in this area!
Saturday, November 2, 2013
Orphan Sunday
About two years ago I saw a blog that a college friend of mine reposted on FB, in that blog I was lead to a site that had pictures of children who needed adoption...I saw this picture
this picture burned into my heart. I looked at this child's hands, see they are fisted and she is not holding the toy. But yet there is a sweet smile on her face. I read that she was in a mental institution and was in urgent need of adoption. I was amazed at how much this child (didn't know whether she was a boy or girl at this point) looked like Sam. I turned off my computer.....I logged off and went to bed, just sick....then I couldn't sleep. I thought "Oh my God what if that were Sam???? Alone, in an adult mental institution, blind, hungry.... I laid on my bed and prayed for this child and then tried my best to forget this child. I wouldn't go back to the site. I told myself that we had NO money, we had already "done our part for the orphan crises by adopting Shad and we had fulfilled James 1:27" I told myself that we had a small home and a child that would need care for the rest of our lives.... Plus since this child was very white (LOL) I figured the child was from Russia or Eastern Europe and I had SWORE I would NEVER EVER adopt from there (it is WAAAAAAAAAY toooooo crazy to adopt from any of those countries. Oh I had heard the horror stories.....
But then it was going to be Orphan Sunday November 2011....I had this great thought that would totally clear my conscience ...we'd take up an offering for the child!!!!!!!! There we go!
So I got up in church and shared how we could as a church help this child.....
Then by that afternoon I was back on the computer trying to find that child again...... Then I had a great thought, we'd just raise the money for a family to adopt her and two other blind kids I found in my search for her. Our church had just been fully remodeled, we had no debt and I thought it would be a "good thing" to fund raise for these kids....especially that one that looked like Sam.
That only lasted a few days, I was able to track down info on the child and found out it was a girl. By that Thursday, she was my girl. Just 100% mine.....heck no I wasn't going to raise money for anyone else to go and get her!!!! I was going to go get her!!!!!! Thankfully my crazy husband was thinking the same thing:) She was OUR girl!!!!!!!!!!
And so she is....my sweet little girl..... I started the paper trail, stayed up several nights to get things done as quickly as possible and just 4 months later we were on our way to bring her and our "surprise" girl home.....
WELL. it's Orphan Sunday once again....and there are two children heavy on my heart.
First there is Angela, the girl we sponsor through Life2Orphans
If WHEN a family steps forward for these kids, I will promise you that I will help all I possibly can in your adoption by raising money and praying for the adoption!
this picture burned into my heart. I looked at this child's hands, see they are fisted and she is not holding the toy. But yet there is a sweet smile on her face. I read that she was in a mental institution and was in urgent need of adoption. I was amazed at how much this child (didn't know whether she was a boy or girl at this point) looked like Sam. I turned off my computer.....I logged off and went to bed, just sick....then I couldn't sleep. I thought "Oh my God what if that were Sam???? Alone, in an adult mental institution, blind, hungry.... I laid on my bed and prayed for this child and then tried my best to forget this child. I wouldn't go back to the site. I told myself that we had NO money, we had already "done our part for the orphan crises by adopting Shad and we had fulfilled James 1:27" I told myself that we had a small home and a child that would need care for the rest of our lives.... Plus since this child was very white (LOL) I figured the child was from Russia or Eastern Europe and I had SWORE I would NEVER EVER adopt from there (it is WAAAAAAAAAY toooooo crazy to adopt from any of those countries. Oh I had heard the horror stories.....
But then it was going to be Orphan Sunday November 2011....I had this great thought that would totally clear my conscience ...we'd take up an offering for the child!!!!!!!! There we go!
So I got up in church and shared how we could as a church help this child.....
Then by that afternoon I was back on the computer trying to find that child again...... Then I had a great thought, we'd just raise the money for a family to adopt her and two other blind kids I found in my search for her. Our church had just been fully remodeled, we had no debt and I thought it would be a "good thing" to fund raise for these kids....especially that one that looked like Sam.
That only lasted a few days, I was able to track down info on the child and found out it was a girl. By that Thursday, she was my girl. Just 100% mine.....heck no I wasn't going to raise money for anyone else to go and get her!!!! I was going to go get her!!!!!! Thankfully my crazy husband was thinking the same thing:) She was OUR girl!!!!!!!!!!
And so she is....my sweet little girl..... I started the paper trail, stayed up several nights to get things done as quickly as possible and just 4 months later we were on our way to bring her and our "surprise" girl home.....
WELL. it's Orphan Sunday once again....and there are two children heavy on my heart.
First there is Angela, the girl we sponsor through Life2Orphans
yes that is me holding her on her bed (the girl next to her is the girl Lucien that you all helped raise money to get her home!) Angela is 12 years old and has CP, she is about the size of a normal 8 yr old. She has the same spirit as Sarah and Lucien, sweet happy, loving.... she is from Ukraine.
The second is Timothy
He is also 12 years old and is from China. He is blind and has some CP, with no mental delays. I know someone who knows him personally and he is just a wonderful sweet boy.
Will you really pray for these two children???? Pray that a family will step forward for each of them. Ask God if you can be that family! Consider giving to both or either of them! You can help them get a family!!!!
I've felt that I should concentrate on raising money for these two kids specifically for now. So every penny that comes in will go in a dedicated fund for them until they are listed with a ministry.
Grace Haven Ministries is going to be setting up a page for Angela. The Shepherd's Crook is working on Timothy's situation also. I speak with some people who actually know Timothy and we know he has a file and is ok'ed for international adoption. No agency has taken his file that I know of at this time. However he can be requested by a family and I have info about him. So let's get these two older kids into a family!!!!!!!!
I know our family's story touches many of your hearts and I appreciate all that has been given towards Orphans this year ( I think close to $2000 that has come through our church and I know some of you have given on line to various families/children in honor of our kids and I so appreciate that! Can you give again???
Just $5 from each of my daily readers could be $15,000....or do a yard sale or car wash in their honor.... After January, our family will do some type of fund raisers for these two. Every penny that comes in will go towards a grant for these two separately. There are no "overhead" costs. If you'd like to designate your giving towards one child then it will be designated. If not it will all be divided between the two children.
Once their grants have been set up, whatever has come in for them will go to the different ministries (both of them I know and appreciate and TRUST) to be held in a fund until a family steps forward.
I think also there will be an on line link that you can give through when everything has been set up. But right now you can give via a check to :
GRACE CHURCH
ADOPTION FUND
7060 Berry Road
Zephyrhills Fl 33540
(you will get a tax credit for this gift!)
Timothy is the most urgent, time wise as I believe he will "age out" and not be eligible for adoption after Jan 2015!!!!!!!!!
Angela is the most serious case as far as needing medical care.....
They both have urgent needs please help them out!
Remembering Ukraine and a little boy from there who needs our help!
Hey I'd like to start this blog by sharing about Gavin and his family. Gavin WAS an orphan but he is home with his family now. The family adopted him KNOWING he needed life saving surgery. He needs a new kidney and has a live donor but there are expenses the family needs help with. Here is their fund raising page http://www.gofundme.com/Gavins-kidney-fund You can give directly on their page! They have a family blog also http://lifeasathomas5.blogspot.com/?m=1 and you can read their whole story there. If you could help this family it would be great!!!!! This cutie pie would have died for sure if this family hadn't stepped forward to save his life and give him a family who will love his during his medical challenges.
Today was a busy day. Jon took Selah this morning to HBOT and I took her this afternoon. While she was in HBOT Steve and I went to the library!!! Woohoo!!! I LOVE libraries but don't have a chance to go as often as I'd like, which would be weekly! I got some books form one of my fav new authors, Rhys Bowen, that I've not read before. I can't wait to read them!!!
Selah was so tired yesterday that she slept straight from 5pm to 5am this morning. She slept through diaper changes and everything! Today she seems very stressed. It might take her a few days to relax and get back used to being out so much.
Some friends of mine are in Ukraine right now adopting....I look at the pictures, read the blogs and all the memories come back to me. I've never had an experience like Ukraine and the adoption of the girls. It felt like pure magic, except for the food and the train..... and my constant upset tummy aka bathroom runs..... But other than that, it was like a magical trip. I don't mean that everything I saw was beautiful, but I fell in love with Ukraine and the people there in a way I've never felt before. Having my kids with me, exploring the whole country, living right with the people....I'll probably never have an experience like that again but it's in my heart. It makes me sad that we will probably never adopt again. I've never really grieved about not having anymore biological kids, that is all finished as far as I am concerned (I certainly hope so) But I do grieve deeply that we won't adopt again unless Selah had a complete miracle healing. In fact, we had hoped to go back to Ukraine for Jon to preach at a few various churches but we probably won't ever be able to do that either. THAT makes me so sad..... It's so odd, that a little country that I had to look up on a map to remember exactly where it was would affect me do deeply. There is always a "low grade longing" in my heart to go back there. But some days the longing is so strong I could cry. I've been to other countries and Never felt like that. I mean I've liked everywhere I've gone and if something is on tv that I recognize like the Panda Bear Research place I went to in Chengdu China with Shad, I think it's cool but nothing pulls me like Ukraine does. I truly didn't want to leave there when it was time to go LOL I kidded around that I knew I'd really have more work to do with two more children but it wasn't that. I just didn't want to leave there. I did want American Food....REALLY bad but I loved Ukraine:) It's hard to explain but we could have just stayed there and worked with the kids in the institution and I think I would have been happy for the rest of my life.
Please keep praying for Selah and her time in HBOT! Pray that God will grant us a miracle!
Today was a busy day. Jon took Selah this morning to HBOT and I took her this afternoon. While she was in HBOT Steve and I went to the library!!! Woohoo!!! I LOVE libraries but don't have a chance to go as often as I'd like, which would be weekly! I got some books form one of my fav new authors, Rhys Bowen, that I've not read before. I can't wait to read them!!!
Selah was so tired yesterday that she slept straight from 5pm to 5am this morning. She slept through diaper changes and everything! Today she seems very stressed. It might take her a few days to relax and get back used to being out so much.
Some friends of mine are in Ukraine right now adopting....I look at the pictures, read the blogs and all the memories come back to me. I've never had an experience like Ukraine and the adoption of the girls. It felt like pure magic, except for the food and the train..... and my constant upset tummy aka bathroom runs..... But other than that, it was like a magical trip. I don't mean that everything I saw was beautiful, but I fell in love with Ukraine and the people there in a way I've never felt before. Having my kids with me, exploring the whole country, living right with the people....I'll probably never have an experience like that again but it's in my heart. It makes me sad that we will probably never adopt again. I've never really grieved about not having anymore biological kids, that is all finished as far as I am concerned (I certainly hope so) But I do grieve deeply that we won't adopt again unless Selah had a complete miracle healing. In fact, we had hoped to go back to Ukraine for Jon to preach at a few various churches but we probably won't ever be able to do that either. THAT makes me so sad..... It's so odd, that a little country that I had to look up on a map to remember exactly where it was would affect me do deeply. There is always a "low grade longing" in my heart to go back there. But some days the longing is so strong I could cry. I've been to other countries and Never felt like that. I mean I've liked everywhere I've gone and if something is on tv that I recognize like the Panda Bear Research place I went to in Chengdu China with Shad, I think it's cool but nothing pulls me like Ukraine does. I truly didn't want to leave there when it was time to go LOL I kidded around that I knew I'd really have more work to do with two more children but it wasn't that. I just didn't want to leave there. I did want American Food....REALLY bad but I loved Ukraine:) It's hard to explain but we could have just stayed there and worked with the kids in the institution and I think I would have been happy for the rest of my life.
Please keep praying for Selah and her time in HBOT! Pray that God will grant us a miracle!
Friday, November 1, 2013
Back in HBOT!!!!!!
Selah is back in HBOT!
Started today, 2x a day for 20 days....
We are praying God will use this to heal her.
She seemed to be watching Nemo with great interest
She handled it great. Some kids or even grownups can't do HBOT without having to have tubes put in their ears, but she is able to clear her ears by swallowing. The staff check Selah's ears to make sure there is no redness or bruising. Plus Selah can show if something hurts her. I'm so thankful she can manage without the tubes. If she had a problem, it would be hard for us to find a doctor who would prescribe tubes since most doctors don't agree with HBOT.
So all three little ones has PT, OT and ST assessments between her sessions of HBOT. The assessments were just to figure out what they'd have evaluations for. Sam is not getting evaluated for PT which was fine with me as I don't think he needs much help in his gross motor skills. I hope to get their evaluations done soon. I thought today was for evaluations...it's so much to keep up with at times. I'm happier with the school system, I've actually met some folks who are NEW (at least to us and their positions) who seem to care about my little ones. Several of the folks that just GRATED on my nerves are gone. One was so inefficient that the person was taken from one high position and put over the vision and homebound kids. That person did not care at all about Sam or even the staff that worked for that person in my opinion. But these ineffective people just bid their time and then go and retire and make lots of money off the state..... Several that I felt were beyond burnt out are gone or transferred to bother someone else thank God LOL I don't "suffer fools" especially when it comes to my little ones!
Had to show off Sarah's ( and Sam's) new horse! they had both outgrown the first horsey we had bought for Sarah and I mentioned to a friend, Mrs Black who worked at a child's consignment store to keep her eye out for a BIG horse. I'd looked around some but hadn't seen one. She found this beautiful one and gave it to Sarah. As you can see, Sarah LOVES it. She spent a lot of today on it!!!!
She is very serious about riding:)
I LOVE this little girl!!!!
I bought her the first horse because of this picture of her when she was at the baby house...
this is before she went to the mental institution. What a cute little baby girl she was! So wish we could have gotten her back then! When I saw this picture, before we got her, I went out and found her a horse and kept it in our living room. The day we got home, I put her on it and she immediately smiled! I thought I would cry! I felt like she was taken care of better at the baby house and that the rocking horse was a good memory.
she was about 2 or 3 in this picture.
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Yesterday was a busy day for me but Selah dressed up in her Red Riding Hood outfit and her Monk Nurse dressed as a Monk:) We had a good time and had pizza for lunch.
Sometimes I wait too long to take pictures, she was getting annoyed she'd been outside for awhile
Selah and her Ukraine dolly
We were planning on taking the kids trick or treating (yes we "celebrate" Halloween to some degree) but I had somethings to do with some friends and Jon had to work late. But we had a good fun day. I had a "treat" because I got to spend time with one of my "besties", her daughter who I love and our "grandma" We all had a good time together!
Is my new FB page for the blog. It may make it easier for you to comment or ask questions on the page or in a PM. I'd love for you to go and LIKE the page:)
Please keep Selah in your prayers as we start this HBOT again and YES she is still on the fish oil study too:) Just pray that it all works together to bring healing to her little brain.
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