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!!!!
Tuesday, August 12, 2014
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.
Wednesday, April 30, 2014
PAMPERED CHEF HAFT WISH LIST
PAMPERED CHEF HAFT WISH LIST
Sorry I should have explained this post for those of you that do not have FB...I am hosting a Pampered Chef show to benefit the Haft kitchen. Any of these items can be ordered through me or my online party link. Or people can order items for themselves and the credits benefit the Haft.
Quantity for items
are all (1) unless otherwise noted in parenthesis
#1088 – Professional Shears pg. 25 -- $26.50
#1755 – Chef’s Silicone Basting Brush pg. 42 -- $10.00
#2071 – Small Spreader pg. 54 -- $6.50
#1642 – All Purpose Spreader pg. 54 -- $6.00
#2622 – Mini Serving Spatula pg. 54 -- $6.50 (2)
#2626 – Lg. Serving Spatula pg. 54 -- $10.50
#2981 – Microfiber Towel pg. 59 -- $9.00 (2)
#1321 – Deep Dish Covered Baker pg. 36 -- $88.00
#3081 – Small Round Bowls pg. 46 -- $18.00 (2)
#3084 – Round Serving Bowls pg. 46 -- $18.00 (2)
#1678 – Spoon Rest pg. 17 -- $12.00
#2340 – Small Turner pg. 19 -- $5.50
#1182 - Egg Slicer pg 29 -- $13.00
#1054 – Chef’s Knife pg. 30 -- $79.00
#1055 – Bread Knife pg. 30 -- $69.00
A day at DuPont
DuPont hospital is situated among the horse farms of Wilmington DE., or so it seemed to me as we sipped our coffee and made our way through the scenic route to get there. :) I had never been there before, and I was genuinely impressed with the facility and the service. I thought the valet parking was an added bonus.
Yesterday was the day that we were scheduled to do a series of tests/ultrasounds on Gracie to be sure she didn't have any more of the conditions, that can be tied to the CHARGE syndrome, that we were not aware of. The letters in the word CHARGE stand for a number of body functions that can be affected by having the syndrome. C=coloboma (eyes), H=heart, A=atresia choanae (closed area in nasal passage) R=retardation of GROWTH or development (I did NOT say they are retarded :), it simply means their growth and development may be slow) G=genital abnormalities, E=ear abnormalities.
We arrived at the hospital at 8:00 a.m. and made our way to the cardiology unit. We filled out the usual papers and shortly after were called into the Dr. office where they gave us a little hospital gown to put on Gracie. She cooperated for most of the things the nurse wanted to check- weight, length etc. and did well for the EKG, but she had an issue with the whole blood pressure procedure (cutest little blood pressure cuff ever). After this the Dr. ordered the ultrasound part of the appt. to be done. Dutch and I worked together to keep Gracie entertained and tried to keep her from grabbing the ultrasound technicians hand etc. All in all Gracie was fairly cooperative through the procedure. I didn't realize how much I was holding my breath about the outcome of this test until I left out a sigh of relief when the Dr. said- "Her heart looks great. It looks normal for a 5 month old. I see no complications relating to CHARGE syndrome". Praise the Lord!! I guess thinking of living here at the Haft and having to have Gracie go through any major or minor heart surgery seemed a little overwhelming to me. How would we juggle everything? So it was a big relief to know that she doesn't have any heart condition. The next appt. was to check her kidneys, not that that's one of the major things they find affecting CHARGE syndrome, but more because its something that in general can be affected by genetic disorders. But "Sue" our ultrasound tech assured us that she has two kidneys, and they're in the right place!! Another good report!! The last test was her ears. Now we were quite certain she could hear to some extent but were not sure how much etc. This test was a 2 hr. test where they put the little stickers on her- behind her ears, and on her forehead, and there are wires they connect to this and they do a computerized test of sound waves etc. (glad somebody understands that stuff and knows what they're doing, it was just a bunch of squiggly lines to me). We needed her to be still or sleep for this procedure to get a really good reading. I was hoping she would do just that, but babies can be unpredictable... praise the Lord she slept/nursed the whole way through. The outcome was this- the inner ear etc.is developed, she doesn't show signs of underdevelopment and that is great news. She does, however; show signs of her earing being somewhat impaired right now, but the tech was fairly sure that was because she has fluid laying in there that needs to be drained. Tubes inserted in her ears will most likely be something she will need in the near future. So, in other words, her hearing is probably muffled right now, but it doesn't look like permanent hearing loss. Oh and a bonus to this appt was that the Dr. that did this test was a Christian, and she shared a piece of her testimony and of how God had worked in her life. We invited her to come to the Haft, and she "you haven't seen the last of me". Those are the kind of things we are always looking for on our life journey and especially through the journey we are on with Gracie. God moments! Divine appointments!
Thank you all for caring and praying. The texts etc. mean so much. Thank you. It was a good day!
Yesterday was the day that we were scheduled to do a series of tests/ultrasounds on Gracie to be sure she didn't have any more of the conditions, that can be tied to the CHARGE syndrome, that we were not aware of. The letters in the word CHARGE stand for a number of body functions that can be affected by having the syndrome. C=coloboma (eyes), H=heart, A=atresia choanae (closed area in nasal passage) R=retardation of GROWTH or development (I did NOT say they are retarded :), it simply means their growth and development may be slow) G=genital abnormalities, E=ear abnormalities.
We arrived at the hospital at 8:00 a.m. and made our way to the cardiology unit. We filled out the usual papers and shortly after were called into the Dr. office where they gave us a little hospital gown to put on Gracie. She cooperated for most of the things the nurse wanted to check- weight, length etc. and did well for the EKG, but she had an issue with the whole blood pressure procedure (cutest little blood pressure cuff ever). After this the Dr. ordered the ultrasound part of the appt. to be done. Dutch and I worked together to keep Gracie entertained and tried to keep her from grabbing the ultrasound technicians hand etc. All in all Gracie was fairly cooperative through the procedure. I didn't realize how much I was holding my breath about the outcome of this test until I left out a sigh of relief when the Dr. said- "Her heart looks great. It looks normal for a 5 month old. I see no complications relating to CHARGE syndrome". Praise the Lord!! I guess thinking of living here at the Haft and having to have Gracie go through any major or minor heart surgery seemed a little overwhelming to me. How would we juggle everything? So it was a big relief to know that she doesn't have any heart condition. The next appt. was to check her kidneys, not that that's one of the major things they find affecting CHARGE syndrome, but more because its something that in general can be affected by genetic disorders. But "Sue" our ultrasound tech assured us that she has two kidneys, and they're in the right place!! Another good report!! The last test was her ears. Now we were quite certain she could hear to some extent but were not sure how much etc. This test was a 2 hr. test where they put the little stickers on her- behind her ears, and on her forehead, and there are wires they connect to this and they do a computerized test of sound waves etc. (glad somebody understands that stuff and knows what they're doing, it was just a bunch of squiggly lines to me). We needed her to be still or sleep for this procedure to get a really good reading. I was hoping she would do just that, but babies can be unpredictable... praise the Lord she slept/nursed the whole way through. The outcome was this- the inner ear etc.is developed, she doesn't show signs of underdevelopment and that is great news. She does, however; show signs of her earing being somewhat impaired right now, but the tech was fairly sure that was because she has fluid laying in there that needs to be drained. Tubes inserted in her ears will most likely be something she will need in the near future. So, in other words, her hearing is probably muffled right now, but it doesn't look like permanent hearing loss. Oh and a bonus to this appt was that the Dr. that did this test was a Christian, and she shared a piece of her testimony and of how God had worked in her life. We invited her to come to the Haft, and she "you haven't seen the last of me". Those are the kind of things we are always looking for on our life journey and especially through the journey we are on with Gracie. God moments! Divine appointments!
Thank you all for caring and praying. The texts etc. mean so much. Thank you. It was a good day!
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