Mystery of Marriage. Wednesday evening 6:00 p.m. - Sunday 2:00 p.m. Sounds long. Too long- too long for the kids, too long away from work, too long for a retreat. BUT. If you're looking for more than just a marriage retreat, if you want to hear some really good teaching, if you want to "go deeper" with God, grow closer to your spouse, and if you want to find out what "church" really is- you may want to consider attending our next "Mystery of Marriage" in May 2015.
Last week we had such a wonderful time as a group. Sharing, laughing & crying together. We learned to "turn to Jesus" early in the morning before we were even fully awake. We shared communion together and were reminded that we were not to examine ourselves to see if we were worthy to take communion of our own righteousness but rather dressed in His robe of righteousness. Hallelujah!!
Every couple shared a piece of their story, their life journey- because we ALL have a story. Our lives have been shaped by that story, the good, the bad- all of it really. So we give couples the opportunity to share their story, and to say what's on their hearts. If they have something they want to work through, we pray with them. We try to be sensitive to the working of the Holy Spirit at all of our retreats, so while we have a schedule, we are also flexible.
A few highlights of the week were- the one couple renewed their wedding vows, the formal dinner on Friday night, the one couple felt a powerful move of the Spirit while praying together in their room the one afternoon, the good laughs (especially about the one couple's honeymoon trip to Alaska), and so much more.
Without sharing too much personal info about the people's lives that were here, I wanted to give you a glimpse of the exciting things God is doing. We have another one of these retreats schedule for May of 2015. Please let us know if you or someone you know is interested in attending.
Friday, October 24, 2014
Wednesday, September 24, 2014
Stories, updates, and more
Many things happen on a daily and weekly basis around here that I never take the time to write about. And I know we all have things like this... little everyday things and even big "God" moments that we are in awe of but never take the time to share them. Today's blog is a compilation of events, updates and God moments that have taken place since the last time I blogged.
The Ministry-
God has been using this place of rest to touch so many people. There is a steady flow of guests coming and going. And we, as an on-site team, interact with nearly all of our guests at some point. It might be anything from sitting with them for several hrs. through a "counseling" session, to having a meal together, sitting around the campfire together, or spending some time in prayer. It varies so much- the people, the needs, the time spent... but one thing that doesn't change, it is evident that the Holy Spirit is at work here. (I know there are people on-site (and abroad) who are praying on a regular basis, and that directly affects the Kingdom work being done here). Many people testify to feeling a peace while they're here. We praise the Lord for what He is doing!!
Highlights-
The experience that one of our most recent guests had while spending time alone at The Garden Cottage, brought a renewed sense of joy and awe at what God can do in a person's life when they are ready to surrender to Him. "David" (name changed to protect identity) came here in desperate need of something, and in his heart he knew what that something was. He knew He wanted to find God in a real, tangible way. He had been raised in church, but said he had never really connected with God in a real way. When he arrived here, Dutch and Dan were actually praying with three brothers and their dad that had come for the day to work through some tough "guy" issues. Dutch invited "David" to join them down at the barn. One of the brothers experienced a major breakthrough and he had a desire to be baptized. Hey why not?? Here's someone who has a revelation, all the stuff he's known in his head finally reached his heart and he wants to outwardly show what just took place inwardly. So we headed to the pond. All the while "David" was taking all of this in....
"David" told us later that what he saw that afternoon and evening with the brothers and their dad, and the baptism and all- seemed real to him. And that was what he was looking for- real Christians. He also told us that when he sorted through what was going on in his life, he had a desire to be baptized as well. To make a long story short- "David" connected with God during his week here, and to see the change that took place was awesome!! He was excited to go home and live out what God had started in his life, knowing, of course, that this was only the beginning of the journey. Challenges would lay ahead of him, but change had come and he left here different than he was when he came.
To add to the story, "David" returned last weekend, bringing with him his wife because he wanted to show her the place where God had started changing his heart. He also wanted to be baptized. After church on Sunday, we, along with quite a few of the folks from LHF Fellowship, headed to the Loyalsock creek to allow "David" to publicly confess that he believed in Jesus as his Savior and was ready to die to the old, and walk in the new!!! It was so refreshing to see his excitement about what he had found, his hunger for truth, and his desire to follow the voice of the Holy Spirit in every decision he makes!!!
Shay & Matt-
ShaLyn had mentioned earlier in the summer that she had a desire to be baptized. We talked about it some, but didn't make any official plans. We knew she was ready, but were waiting for the right opportunity. When, LHF Fellowship, the church we attend up here, held an outdoor service here this summer, several people were baptized in the pond that day. If Shay had known ahead of time that that was planned for that day, she said she probably would have done it then. So when the decision was made to baptize the one brother (from the story above), we asked her if she wanted to take this opportunity and be baptized as well!! It only took her a minute to decide- YES!
We also gave Madison the option of being baptized since he had made a commitment to Jesus a while back and we knew that baptism was something he desired as well. He also decided to get baptized. So on the evening of Sept. 9th both Shay & Matt took the "cold water":) challenge for Jesus. They were baptized in the name of the Father, His son Jesus, & the Holy Spirit- they made a public statement that they had died to self and the world and were ready to follow Jesus!
Gracie-
The last time I posted about Gracie, we were scheduled to have a surgery to put tubes in her ears. Well, that appointment happened to be scheduled on a very busy week here at The Haft, and I could not see pull everything off. I cancelled the surgery!! So as of now, Gracie does not have tubes in her ears and the surgery has not yet been rescheduled.
As for her overall progress- she is really doing well. She has been healthy! She is learning to get around!! She doesn't venture all over the house like a typical child her age that can see far and wide, but considering her seeing handicap she is doing QUITE well. She pulls herself up on furniture, she interacts with her siblings, she half crawls, half scoots with her head and makes her way from one area of the room to another. She is very social with us her family, but when others talk to her she often puts her thumb in her mouth and lays her head on the shoulder of the person carrying her. We've discovered recently that she loves to be outside. She also loves when we sing (more on that below).
"Holy Moments" w/ Gracie-
Gracie absolutely loves when I sing to her. I have started recently to intentionally sit on the rocking chair at some point in my crazy day and just rock her and sing. I really love to sing to begin with, so now I finally found someone that really appreciates it.:) I often sing old hymns that I grew up singing in church- Amazing Grace, Just As I Am, My Hope is Built on Nothing Less, and many more. Gracie simply positions herself, head tilted, and looks directly in my face and watches me for as long as I'm willing to sing. And you know what? Time stands still!! And Gracie and I worship together. I refer to these times as "Holy Moments". I have no doubt that this child will sing and worship in a powerful way one day. I also told the kids recently that if Gracie can't see well in the physical realm, she will certainly see into the spiritual realm. It will be exciting!!
The Suburban-
I find myself writing this blog right at the same time we get a call from the garage where our Suburban is once again having work done to it. And the repairmen says to Dutch when he answers the phone- "I'm afraid you don't want to hear what I have to say".
Our Suburban has served us well in that it has made many trips back and forth to Lancaster and beyond, but this vehicle has not been without its many problems. Every garage visit, or so it seems, is not a small deal- it has had rust issues, therefore causing many parts needing to be replaced. When we purchased this vehicle we would have told you that God provided it at just the right time since we needed something on rather short notice (back in 2011 when we moved to the Haft the first time). We were not planning to trade in our minivan (that never caused us any problems) until plans changed and we realized we couldn't use a truck from Twin-Mar Const. to haul our trailer back and forth. We had to have a vehicle that could pull a trailer and we knew a car dealer that had this Suburban on his lot, so it seemed like the perfect fit. We purchased it a week before we moved North. If any of you recall- the very first weekend we were planning to head back to Lancaster, this same Suburban had a major leak in the gas line. We didn't know it then, but that was one of many issues we would have with it.
I say all of this to say- pray for us that we have the wisdom to know what to do? Do we continue to fix it? Do we trade it in? I still believe God provided this Suburban, but I certainly question why it has had so many issues.
And one more thing- we had planned to take a family day tomorrow, go off-site to Cabela's, and celebrate Madison's 10th birthday. Now that the vehicle is not fixed, we may have to change all those plans, which would be disappointing for all of us... so if you think about it, say a prayer for the Suburban situation.
The Rest of Us-
As for life in general, and how we are doing overall? We are blessed, and most days we're excited about what God is doing in our lives and the people around us. Of course, we feel completely overwhelmed some days and even get burned out. We appreciate all the prayer support we can get!!!! We love hearing from our friends whether it's through FB, email or phone calls.
PS- And we're looking for someone to come serve here at The Haft with us. Is God calling you????
Be blessed!!
The Ministry-
God has been using this place of rest to touch so many people. There is a steady flow of guests coming and going. And we, as an on-site team, interact with nearly all of our guests at some point. It might be anything from sitting with them for several hrs. through a "counseling" session, to having a meal together, sitting around the campfire together, or spending some time in prayer. It varies so much- the people, the needs, the time spent... but one thing that doesn't change, it is evident that the Holy Spirit is at work here. (I know there are people on-site (and abroad) who are praying on a regular basis, and that directly affects the Kingdom work being done here). Many people testify to feeling a peace while they're here. We praise the Lord for what He is doing!!
Highlights-
The experience that one of our most recent guests had while spending time alone at The Garden Cottage, brought a renewed sense of joy and awe at what God can do in a person's life when they are ready to surrender to Him. "David" (name changed to protect identity) came here in desperate need of something, and in his heart he knew what that something was. He knew He wanted to find God in a real, tangible way. He had been raised in church, but said he had never really connected with God in a real way. When he arrived here, Dutch and Dan were actually praying with three brothers and their dad that had come for the day to work through some tough "guy" issues. Dutch invited "David" to join them down at the barn. One of the brothers experienced a major breakthrough and he had a desire to be baptized. Hey why not?? Here's someone who has a revelation, all the stuff he's known in his head finally reached his heart and he wants to outwardly show what just took place inwardly. So we headed to the pond. All the while "David" was taking all of this in....
"David" told us later that what he saw that afternoon and evening with the brothers and their dad, and the baptism and all- seemed real to him. And that was what he was looking for- real Christians. He also told us that when he sorted through what was going on in his life, he had a desire to be baptized as well. To make a long story short- "David" connected with God during his week here, and to see the change that took place was awesome!! He was excited to go home and live out what God had started in his life, knowing, of course, that this was only the beginning of the journey. Challenges would lay ahead of him, but change had come and he left here different than he was when he came.
To add to the story, "David" returned last weekend, bringing with him his wife because he wanted to show her the place where God had started changing his heart. He also wanted to be baptized. After church on Sunday, we, along with quite a few of the folks from LHF Fellowship, headed to the Loyalsock creek to allow "David" to publicly confess that he believed in Jesus as his Savior and was ready to die to the old, and walk in the new!!! It was so refreshing to see his excitement about what he had found, his hunger for truth, and his desire to follow the voice of the Holy Spirit in every decision he makes!!!
Shay & Matt-
ShaLyn had mentioned earlier in the summer that she had a desire to be baptized. We talked about it some, but didn't make any official plans. We knew she was ready, but were waiting for the right opportunity. When, LHF Fellowship, the church we attend up here, held an outdoor service here this summer, several people were baptized in the pond that day. If Shay had known ahead of time that that was planned for that day, she said she probably would have done it then. So when the decision was made to baptize the one brother (from the story above), we asked her if she wanted to take this opportunity and be baptized as well!! It only took her a minute to decide- YES!
We also gave Madison the option of being baptized since he had made a commitment to Jesus a while back and we knew that baptism was something he desired as well. He also decided to get baptized. So on the evening of Sept. 9th both Shay & Matt took the "cold water":) challenge for Jesus. They were baptized in the name of the Father, His son Jesus, & the Holy Spirit- they made a public statement that they had died to self and the world and were ready to follow Jesus!
Gracie-
The last time I posted about Gracie, we were scheduled to have a surgery to put tubes in her ears. Well, that appointment happened to be scheduled on a very busy week here at The Haft, and I could not see pull everything off. I cancelled the surgery!! So as of now, Gracie does not have tubes in her ears and the surgery has not yet been rescheduled.
As for her overall progress- she is really doing well. She has been healthy! She is learning to get around!! She doesn't venture all over the house like a typical child her age that can see far and wide, but considering her seeing handicap she is doing QUITE well. She pulls herself up on furniture, she interacts with her siblings, she half crawls, half scoots with her head and makes her way from one area of the room to another. She is very social with us her family, but when others talk to her she often puts her thumb in her mouth and lays her head on the shoulder of the person carrying her. We've discovered recently that she loves to be outside. She also loves when we sing (more on that below).
"Holy Moments" w/ Gracie-
Gracie absolutely loves when I sing to her. I have started recently to intentionally sit on the rocking chair at some point in my crazy day and just rock her and sing. I really love to sing to begin with, so now I finally found someone that really appreciates it.:) I often sing old hymns that I grew up singing in church- Amazing Grace, Just As I Am, My Hope is Built on Nothing Less, and many more. Gracie simply positions herself, head tilted, and looks directly in my face and watches me for as long as I'm willing to sing. And you know what? Time stands still!! And Gracie and I worship together. I refer to these times as "Holy Moments". I have no doubt that this child will sing and worship in a powerful way one day. I also told the kids recently that if Gracie can't see well in the physical realm, she will certainly see into the spiritual realm. It will be exciting!!
The Suburban-
I find myself writing this blog right at the same time we get a call from the garage where our Suburban is once again having work done to it. And the repairmen says to Dutch when he answers the phone- "I'm afraid you don't want to hear what I have to say".
Our Suburban has served us well in that it has made many trips back and forth to Lancaster and beyond, but this vehicle has not been without its many problems. Every garage visit, or so it seems, is not a small deal- it has had rust issues, therefore causing many parts needing to be replaced. When we purchased this vehicle we would have told you that God provided it at just the right time since we needed something on rather short notice (back in 2011 when we moved to the Haft the first time). We were not planning to trade in our minivan (that never caused us any problems) until plans changed and we realized we couldn't use a truck from Twin-Mar Const. to haul our trailer back and forth. We had to have a vehicle that could pull a trailer and we knew a car dealer that had this Suburban on his lot, so it seemed like the perfect fit. We purchased it a week before we moved North. If any of you recall- the very first weekend we were planning to head back to Lancaster, this same Suburban had a major leak in the gas line. We didn't know it then, but that was one of many issues we would have with it.
I say all of this to say- pray for us that we have the wisdom to know what to do? Do we continue to fix it? Do we trade it in? I still believe God provided this Suburban, but I certainly question why it has had so many issues.
And one more thing- we had planned to take a family day tomorrow, go off-site to Cabela's, and celebrate Madison's 10th birthday. Now that the vehicle is not fixed, we may have to change all those plans, which would be disappointing for all of us... so if you think about it, say a prayer for the Suburban situation.
The Rest of Us-
As for life in general, and how we are doing overall? We are blessed, and most days we're excited about what God is doing in our lives and the people around us. Of course, we feel completely overwhelmed some days and even get burned out. We appreciate all the prayer support we can get!!!! We love hearing from our friends whether it's through FB, email or phone calls.
PS- And we're looking for someone to come serve here at The Haft with us. Is God calling you????
Be blessed!!
Tuesday, August 12, 2014
The latest on Gracie's eyes....
If you put your fingers on your eyes and held them closed part way, you would get an idea of how much Gracie sees. At our most recent visit with the ophthalmologist, the Dr. explained that at 8 wks along in the womb, the part of the eye that forms at that stage of gestation, simply didn't develop like it was supposed. So when he looks into Gracie's eyes, what would typically be a healthy eye, is in Gracie's case- undeveloped tissue. They call this coloboma. In her case, the coloboma is extensive, meaning that over half of her eyes are of no use to her. She would be considered "legally blind", but let me clarify that a person can be "legally blind" and still see something. So let me try to say this in a way that makes sense- Gracie can see, but the vision she has is not even half of what you and I have. And I don't know how clear or blurry it is. No surgery will correct it. Glasses may be a help down the road, but that is yet to be determined. Only a miracle from God will correct Gracie's eye sight.
It breaks my heart when I think about how little she sees. I do, however; choose to pick out the positive things like- she could be completely blind, but she's not!! or the fact that this is all she knows from birth so her brain and other senses will make up for her poor eyesight. I believe she will use her mind to do amazing things!!
As for our medical expenses with Gracie- someone asked recently what kind of coverage we have for all of Gracie's Dr. visits etc. Several months ago we were told by "Early Intervention" that we would most likely qualify for the PA Medical Assistance Program. We weren't sure at first if we should apply or not, but after asking several people and talking to parents of special needs children that are part of the program, we decided to apply. And because of Gracie's diagnosis she qualified. The next step was to insure that the Dr.'s we've been seeing were on the list of caregivers on the program. Thankfully they were, so all of Gracie's medical bills have been paid by the state or by the sharing program (Samaritan Ministries) that we are apart of. We are so grateful for this!! So for us personally, the only expense that we've had (and trust me it does add up) is the cost of travelling back and forth to Lanc or Delaware (DuPont Hospital) for her appts and check-ups. We try to make our trips count, and work around other plans or events that we may already scheduled to go to Lanc. for. Unfortunately, it doesn't ALWAYS work out that way.
We appreciate all the prayers on our behalf. And for all who truly care. It is our desire that Gracie's story, and her life be a testimony of God's goodness and faithfulness. Continue to believe with us for miracles for Gracie's life!!!!
It breaks my heart when I think about how little she sees. I do, however; choose to pick out the positive things like- she could be completely blind, but she's not!! or the fact that this is all she knows from birth so her brain and other senses will make up for her poor eyesight. I believe she will use her mind to do amazing things!!
As for our medical expenses with Gracie- someone asked recently what kind of coverage we have for all of Gracie's Dr. visits etc. Several months ago we were told by "Early Intervention" that we would most likely qualify for the PA Medical Assistance Program. We weren't sure at first if we should apply or not, but after asking several people and talking to parents of special needs children that are part of the program, we decided to apply. And because of Gracie's diagnosis she qualified. The next step was to insure that the Dr.'s we've been seeing were on the list of caregivers on the program. Thankfully they were, so all of Gracie's medical bills have been paid by the state or by the sharing program (Samaritan Ministries) that we are apart of. We are so grateful for this!! So for us personally, the only expense that we've had (and trust me it does add up) is the cost of travelling back and forth to Lanc or Delaware (DuPont Hospital) for her appts and check-ups. We try to make our trips count, and work around other plans or events that we may already scheduled to go to Lanc. for. Unfortunately, it doesn't ALWAYS work out that way.
We appreciate all the prayers on our behalf. And for all who truly care. It is our desire that Gracie's story, and her life be a testimony of God's goodness and faithfulness. Continue to believe with us for miracles for Gracie's life!!!!
Wednesday, July 2, 2014
Gracie: A Wildflower Child
Someone once referred to their special needs child as a "wildflower child". And I can't think of a better term to use to describe our Gracie. When I think of a wildflower I think of a flower that grows differently then a typical annual that you would plant in your flower bed. Wildflowers are so pretty, yet they grow in different places, and under different conditions.
Gracie is now 7 months old. And yes, she is growing and learning things at her own speed. In a lot of ways she's like a typical child, and yet, there are ways, because of her vision issues, that she is developing slower (and sometimes faster) then other children her age. I did not realize how much the human mind learns by seeing until I was given a child who only sees "in part". For instance, what would drive you to sit up, and put your head in space, if there was nothing to focus on or look at? It's kinda scary putting your head up not knowing completely what is around you. Wouldn't you choose to roll or scoot around on the floor too, where you can "feel" what's around you? This explains why Gracie learned at a very early age to "feel" her world by putting her butt in the air, and her head on the carpet. It "feels" safe. So one of the areas we are working on with Gracie is sitting- teaching her to feel comfortable with her head up, even though she can't see completely or feel what's around her.
Observing Gracie, the things she does and doesn't do, and why she does or doesn't do them has been so fascinating to me. Not that I have time to sit around all day and watch her :) but when I do spend quality time interacting with her I'm amazed at her world!! She, for the most part, is a happy baby. In ALOT of ways she is MUCH more content playing with toys, being in her saucer, and just plain down entertaining herself then what our Gabby ever was!!! (thank you Esther Riehl for the saucer, it has been good for strengthening her back and teaching her to hold her head). She explores the floor by rolling, scooting and almost crawling... she plays in her saucer and "feels" the different toys, she watches her own hand and she LISTENS. She knows when I walk in her bedroom to get her out of her pak n' play after a nap- not because she sees me too well, but because she hears and senses that I'm there. If you watch her eyes you will see her "scanning" a lot, when she does this, she is tracking with the vision she has and processing with her mind. I can almost "see" her little mind working sometimes.
As for Gracie's over all mental development... I can't tell you exactly where she is at compared to a "typical" 7 month old. She seems, from my view point, to be doing things on time. She seems to understand and interact with us. From what I've read of children with CHARGE syndrome, their mental ability varies from child to child, and a lot of the ones that are delayed mentally become that way because of their overall health conditions and from spending months in the hospital due to physical complications. Gracie is very fortunate to have had no hospital stays or surgeries.
What is next on the "to do" list for Gracie with her ears and eyes?? She has a follow-up appt. with the ophthalmologist (eye specialist) on Aug. 1st. I don't know what this appt. entails or what we'll find out. The first time the ophth looked in her eyes, he didn't give a lot of hope of future development. He made it sound like the hand she's been dealt is not a good one when it comes to sight and that this all happened in the womb already so it wouldn't change as she grows. BUT people have been praying for her and her eyesight, SO that means things could change. It will be interesting to see what they say at this follow-up visit!! And as for her ears- the fluid is still in her middle ear, and it is affecting the quality of hearing. This causes her to not pass her hearing test. This means Dr. O'Reilly will be putting ear tubes in, which will help the fluid to drain. They will put her to sleep to do the minor surgery. While she's asleep anyway, they will do the ABR test again to get a good read on her overall hearing. Now, I can tell you that she hears! She jumps at noise, she sleeps lightly and hears me if I walk into her room while she's napping- but how CLEARLY she hears, we do not know. Does it sounds muffled like we're talking to her under water? If so, this could affect her speech development. So again it's one of those things that we "typicals" take for granted, but for the "wildflowers" they need some assistance in some of these areas. Of course, my prayer would be that the fluid would disappear and none of these tubes, tests, etc. would be necessary, but on the other hand I do not want to be negligent. There is always the fine line of what does God want us to do in this situation?? I'll never forget what another mother of a special needs child once said about believing for healing versus accepting this to be God's will, she said- "I don't know if this is something that God wants me to cry out and ask Him to heal/change my child or is He asking me to accept this?" In other words, does He want to increase my faith and want me to see a miracle and completely heal my child or is He asking me to love this child just the way he/she is? I've come to the conclusion it's both- God wants us to ask for the miracle, believe for it, but ultimately He wants to change me by givng me the opportunity to love a wildflower child!!!!
PS- We appreciate your continued prayers for Gracie's healing, for us as we make decisions, for the Dr's that are working with Gracie, and for safety as we travel to and from her appointments.
PSS- And to the mama who referred to her special needs child as a "wildflower child"- we don't know each other and you might never read this blog, but if you do: "I hope you don't mind me borrowing the term. I don't know if you coined it yourself or heard it somewhere else, but it is a brilliant way to describe a special needs child!! And by the way- I know that your 'wildflower child' was picked for a Heavenly bouquet... I'm sure she's blooming beautifully there among all the others who have gone on before!!"
Gracie is now 7 months old. And yes, she is growing and learning things at her own speed. In a lot of ways she's like a typical child, and yet, there are ways, because of her vision issues, that she is developing slower (and sometimes faster) then other children her age. I did not realize how much the human mind learns by seeing until I was given a child who only sees "in part". For instance, what would drive you to sit up, and put your head in space, if there was nothing to focus on or look at? It's kinda scary putting your head up not knowing completely what is around you. Wouldn't you choose to roll or scoot around on the floor too, where you can "feel" what's around you? This explains why Gracie learned at a very early age to "feel" her world by putting her butt in the air, and her head on the carpet. It "feels" safe. So one of the areas we are working on with Gracie is sitting- teaching her to feel comfortable with her head up, even though she can't see completely or feel what's around her.
Observing Gracie, the things she does and doesn't do, and why she does or doesn't do them has been so fascinating to me. Not that I have time to sit around all day and watch her :) but when I do spend quality time interacting with her I'm amazed at her world!! She, for the most part, is a happy baby. In ALOT of ways she is MUCH more content playing with toys, being in her saucer, and just plain down entertaining herself then what our Gabby ever was!!! (thank you Esther Riehl for the saucer, it has been good for strengthening her back and teaching her to hold her head). She explores the floor by rolling, scooting and almost crawling... she plays in her saucer and "feels" the different toys, she watches her own hand and she LISTENS. She knows when I walk in her bedroom to get her out of her pak n' play after a nap- not because she sees me too well, but because she hears and senses that I'm there. If you watch her eyes you will see her "scanning" a lot, when she does this, she is tracking with the vision she has and processing with her mind. I can almost "see" her little mind working sometimes.
As for Gracie's over all mental development... I can't tell you exactly where she is at compared to a "typical" 7 month old. She seems, from my view point, to be doing things on time. She seems to understand and interact with us. From what I've read of children with CHARGE syndrome, their mental ability varies from child to child, and a lot of the ones that are delayed mentally become that way because of their overall health conditions and from spending months in the hospital due to physical complications. Gracie is very fortunate to have had no hospital stays or surgeries.
What is next on the "to do" list for Gracie with her ears and eyes?? She has a follow-up appt. with the ophthalmologist (eye specialist) on Aug. 1st. I don't know what this appt. entails or what we'll find out. The first time the ophth looked in her eyes, he didn't give a lot of hope of future development. He made it sound like the hand she's been dealt is not a good one when it comes to sight and that this all happened in the womb already so it wouldn't change as she grows. BUT people have been praying for her and her eyesight, SO that means things could change. It will be interesting to see what they say at this follow-up visit!! And as for her ears- the fluid is still in her middle ear, and it is affecting the quality of hearing. This causes her to not pass her hearing test. This means Dr. O'Reilly will be putting ear tubes in, which will help the fluid to drain. They will put her to sleep to do the minor surgery. While she's asleep anyway, they will do the ABR test again to get a good read on her overall hearing. Now, I can tell you that she hears! She jumps at noise, she sleeps lightly and hears me if I walk into her room while she's napping- but how CLEARLY she hears, we do not know. Does it sounds muffled like we're talking to her under water? If so, this could affect her speech development. So again it's one of those things that we "typicals" take for granted, but for the "wildflowers" they need some assistance in some of these areas. Of course, my prayer would be that the fluid would disappear and none of these tubes, tests, etc. would be necessary, but on the other hand I do not want to be negligent. There is always the fine line of what does God want us to do in this situation?? I'll never forget what another mother of a special needs child once said about believing for healing versus accepting this to be God's will, she said- "I don't know if this is something that God wants me to cry out and ask Him to heal/change my child or is He asking me to accept this?" In other words, does He want to increase my faith and want me to see a miracle and completely heal my child or is He asking me to love this child just the way he/she is? I've come to the conclusion it's both- God wants us to ask for the miracle, believe for it, but ultimately He wants to change me by givng me the opportunity to love a wildflower child!!!!
PS- We appreciate your continued prayers for Gracie's healing, for us as we make decisions, for the Dr's that are working with Gracie, and for safety as we travel to and from her appointments.
PSS- And to the mama who referred to her special needs child as a "wildflower child"- we don't know each other and you might never read this blog, but if you do: "I hope you don't mind me borrowing the term. I don't know if you coined it yourself or heard it somewhere else, but it is a brilliant way to describe a special needs child!! And by the way- I know that your 'wildflower child' was picked for a Heavenly bouquet... I'm sure she's blooming beautifully there among all the others who have gone on before!!"
Thursday, May 29, 2014
Gracie update
Last week I took Gracie to see Dr. O'Reilly, the ENT at DuPont, concerning her ears. This visit was necessary because she didn't pass her hearing test several wks ago. If you remember from one of my earlier posts, I mentioned that the Dr. that performed the hearing test said she felt like things were developed inside the ear, but the reason she didn't pass the test was because of fluid in her ears. So the test last wk. was a follow-up visit to see if we should put tubes in her ears to drain the fluid build up. However, when Dr. O'Reilly looked in her ears last week he said- "She only has fluid in one ear."
To which replied- "Well, we do have people praying for Gracie, so maybe that's why the fluid disappeared in her one ear."
His response- "Yeah maybe that made a difference. Probably depends who you have praying though."
Me- "What do you mean by that?"
"Well", he said, "If I'd (meaning himself) be the one praying it probably wouldn't make a difference. Him (meaning God) & I aren't really on good terms right now."
I said something like- "Oh! Well, you might want to work on that."
And he replied, "Yeah, I've been trying."
The conversation was lite and mostly said in a humorous, joking way, but basically he was saying that he doesn't have a relationship with God right now. I do hope that every encounter like that on our "Gracie Journey" can plant a seed in the lives of the people we come in contact with, and will spark an interest in them coming to know Jesus in a personal way.
As for the next step w/ her ears- Dr. O'Reilly wants to see her again in a month and possibly redo the hearing test before going ahead with tubes. That means another trip to Lancaster in June, but this time we won't have to go to DuPont- we can get an appt. with this same Dr. at Dr. Morton's office in Strasburg.
I also want to mention a little about Gracie's over all progress. She now has a therapist that comes out once a week for an hr. We work mostly with her on her vision. I can tell you this- Gracie can see to some extent. Even though her eyes don't always co-operate for her, she does have a certain way of holding her head and you can see that she is tracking things. The therapist put it this way on Wed. when she was here- "she has low vision, not no vision." We are grateful for this!! Even though we don't know exactly what or how much she sees, we do know that her world is not completely dark.
And her motor skills- wow! she gets around. She entertains herself for long periods of time by being on the floor, standing on her feet with her butt in the air, her head on the floor and scooting around like that. She also gets herself in the crawling position, but she hasn't actually crawled yet. She is also working on the sitting position.
Gracie is so lovable and cuddly- we love her dearly. Thank you for praying for Gracie and us!!
PS- "thank you" to my sister Sue for going with me to DuPont last wk.!!
To which replied- "Well, we do have people praying for Gracie, so maybe that's why the fluid disappeared in her one ear."
His response- "Yeah maybe that made a difference. Probably depends who you have praying though."
Me- "What do you mean by that?"
"Well", he said, "If I'd (meaning himself) be the one praying it probably wouldn't make a difference. Him (meaning God) & I aren't really on good terms right now."
I said something like- "Oh! Well, you might want to work on that."
And he replied, "Yeah, I've been trying."
The conversation was lite and mostly said in a humorous, joking way, but basically he was saying that he doesn't have a relationship with God right now. I do hope that every encounter like that on our "Gracie Journey" can plant a seed in the lives of the people we come in contact with, and will spark an interest in them coming to know Jesus in a personal way.
As for the next step w/ her ears- Dr. O'Reilly wants to see her again in a month and possibly redo the hearing test before going ahead with tubes. That means another trip to Lancaster in June, but this time we won't have to go to DuPont- we can get an appt. with this same Dr. at Dr. Morton's office in Strasburg.
I also want to mention a little about Gracie's over all progress. She now has a therapist that comes out once a week for an hr. We work mostly with her on her vision. I can tell you this- Gracie can see to some extent. Even though her eyes don't always co-operate for her, she does have a certain way of holding her head and you can see that she is tracking things. The therapist put it this way on Wed. when she was here- "she has low vision, not no vision." We are grateful for this!! Even though we don't know exactly what or how much she sees, we do know that her world is not completely dark.
And her motor skills- wow! she gets around. She entertains herself for long periods of time by being on the floor, standing on her feet with her butt in the air, her head on the floor and scooting around like that. She also gets herself in the crawling position, but she hasn't actually crawled yet. She is also working on the sitting position.
Gracie is so lovable and cuddly- we love her dearly. Thank you for praying for Gracie and us!!
PS- "thank you" to my sister Sue for going with me to DuPont last wk.!!
Saturday, May 24, 2014
Chocolate Lab Puppies
For Sale - Choc Lab Puppies
For what it's worth I decided to post this on my blog. :)
We have choc lab puppies for sale.
They're registered ACA- they're English choc labs.
Currently 7 wks old. Ready for good homes on June 1, 2014.
1st round of shots and wormed.
6 females
4 males
Asking $650
Many people say to advertise them on Greenfield Puppies but I was hoping to sell them w/o doing that:) :) so if you know of anyone looking for a puppy send them our way!!
570.363.2405
PS- I'll be posting a Gracie update soon...
Friday, May 16, 2014
She's strong
I'm posting this video for those of you who don't have Facebook. Hopefully you'll be able to watch it. This is the kind of stuff Gracie has been doing on the floor for a month already. She spends a lot of time exploring on the floor.
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