"Rejoice in hope, be patient in tribulation, be constant in prayer." Romans 12:12
Thursday, August 23, 2012
Friday, August 17, 2012
Hayden
It is with great sadness that I have to post that our precious friend Hayden is now in Heaven.
I met Hayden and his parents Lauren and Brent when I was his nurse several months ago. His mama called him her "earth angel," which described him perfectly. I have taken care of many special babies, but Hayden and his family hold an extra special place in my heart.
As does his mom. Lauren has taught me how to be a better mama, and how to truly celebrate every moment. She had such amazing HOPE for Hayden.
As sad as I am that Hayden is now in Heaven, I am rejoicing that he is perfect and whole, in no more pain, no longer suffering. He blessed us with his presence on earth, and now I look forward to seeing him again one day. :)
Please pray for Hayden's family as they have his funeral tomorrow.
I met Hayden and his parents Lauren and Brent when I was his nurse several months ago. His mama called him her "earth angel," which described him perfectly. I have taken care of many special babies, but Hayden and his family hold an extra special place in my heart.
As does his mom. Lauren has taught me how to be a better mama, and how to truly celebrate every moment. She had such amazing HOPE for Hayden.
As sad as I am that Hayden is now in Heaven, I am rejoicing that he is perfect and whole, in no more pain, no longer suffering. He blessed us with his presence on earth, and now I look forward to seeing him again one day. :)
Please pray for Hayden's family as they have his funeral tomorrow.
Thursday, August 9, 2012
Choices and Thank Yous
Today, I am choosing to be thankful for the miracles in my life. :)
Check out what my girl did in therapy today!
This is the first time she has ever fed herself all by herself! She actually fed herself three puffs...I was in shock, so I only got one on video.
p.s. Thank you to everyone for the encouragement yesterday! Ms. Kathy, Auntie Susan, Aunt Lesia, Marilyn, Alita, and sweet Tina (all the way from Greece!)...thank you!
Check out what my girl did in therapy today!
This is the first time she has ever fed herself all by herself! She actually fed herself three puffs...I was in shock, so I only got one on video.
p.s. Thank you to everyone for the encouragement yesterday! Ms. Kathy, Auntie Susan, Aunt Lesia, Marilyn, Alita, and sweet Tina (all the way from Greece!)...thank you!
Wednesday, August 8, 2012
Eating Issues and Other Ramblings...
I have wanted to write a post about Grace's eating issues for a while. However, I've been anxious about the comments I might get in response it. I'm now ready to be honest and hopefully I will receive positive and encouraging comments! :)
Grace has had eating/feeding issues for a while now. When she was a baby, she took her bottles with virtually no problems (I even had to try a lot of different bottles because she was spitting up so much). The only small problem we had was she would take a while (longer than 30 minutes at times) to finish bottles, but after briefly seeing a speech therapist through early intervention, this problem was corrected. We sailed along and she did fine with transitioning to rice cereal and to stages 1 and 2 baby foods. She loved to eat, and would pretty much eat everything.
We started having trouble when we were beginning to try to transition to a sippy cup and table foods. We see a speech therapist on an as needed basis currently, and she has helped us so much! Through a lot of work, which at times seemed like it wasn't working, Grace now eats most table foods. She still gags on slippery foods, especially fruits like peaches and strawberries. But she is able to eat pretty much anything.
She still refuses any type of sippy cup. She is very sensitive to anything new. I tried to take away one of her bottles thinking she would be more thirsty and would cooperate with a sippy cup. That did not work. Instead, she started getting a little dehydrated. So I added back that bottle. She currently takes 3 bottles a day (at 10, 3, and 8) in between meals (at 8, 12, and 6). Thankfully, she is now only taking whole milk (no formula). She won't even hold her bottles, although I have recently been using handles that I found that go with Avent bottles. I've been placing her hands on the handles. I think she will get it eventually. During meals, we try to get her to take liquids (milk, water, juice) off of a cup edge (we use nosey cups). She will take anything from nothing on bad days to maybe an ounce of liquid with meals on really good days. She is usually pretty offended by even seeing the cup. I've tried working with her with straw drinking, but she hasn't gotten that yet either (although we haven't been working on that long).
I have a hard time with knowing the balance between pushing her to overcome her sensitivities, and when to be okay with her being sensitive.
We make her try and feed herself puffs or goldfish (at least 5) before her meals. This consists of her eventually trying to pick up the puffs/goldfish (after a lot of encouragement) and then us putting our hand around hers so that she will hold it in her hand. Then we guide her hand to her mouth and put the puff/goldfish in her mouth. She is proud of herself once she realizes what she's done, but she does not know how to do it on her own. We've been working on this skill for months.
It is exhausting trying to feed her. It usually takes around 30 minutes. While I am thankful she can eat by mouth (many of the children we know with diagnoses like Grace's are tube fed), it is still very exhausting. There are times that I cry during meals. There are times that I get angry.
I HATE the disabilities. I HATE THEM. It breaks my heart that my child struggles with things like these issues that come so naturally to other children. EVERY milestone she meets is a pure STRUGGLE. There are days when I am okay with all that we go through to teach Grace to do new skills, and there are days that I give up and grieve for the things Grace has to go through just to do things that other kids do without even thinking about them.
Some days I feel the (extreme) pressure to achieve "normal". I want her to be able to do all the normal things other kids do. Then I realize that maybe she will never be "normal". This realization is both relieving and utterly heartbreaking...relieving because it takes the pressure off to achieve "normal," and heartbreaking because I know in my heart she will never be normal.
I feel like I'm rambling. I hope something here makes sense to some mom who has been there and can encourage me with positive thoughts and/or advice. Thank you for listening!
Grace has had eating/feeding issues for a while now. When she was a baby, she took her bottles with virtually no problems (I even had to try a lot of different bottles because she was spitting up so much). The only small problem we had was she would take a while (longer than 30 minutes at times) to finish bottles, but after briefly seeing a speech therapist through early intervention, this problem was corrected. We sailed along and she did fine with transitioning to rice cereal and to stages 1 and 2 baby foods. She loved to eat, and would pretty much eat everything.
We started having trouble when we were beginning to try to transition to a sippy cup and table foods. We see a speech therapist on an as needed basis currently, and she has helped us so much! Through a lot of work, which at times seemed like it wasn't working, Grace now eats most table foods. She still gags on slippery foods, especially fruits like peaches and strawberries. But she is able to eat pretty much anything.
She still refuses any type of sippy cup. She is very sensitive to anything new. I tried to take away one of her bottles thinking she would be more thirsty and would cooperate with a sippy cup. That did not work. Instead, she started getting a little dehydrated. So I added back that bottle. She currently takes 3 bottles a day (at 10, 3, and 8) in between meals (at 8, 12, and 6). Thankfully, she is now only taking whole milk (no formula). She won't even hold her bottles, although I have recently been using handles that I found that go with Avent bottles. I've been placing her hands on the handles. I think she will get it eventually. During meals, we try to get her to take liquids (milk, water, juice) off of a cup edge (we use nosey cups). She will take anything from nothing on bad days to maybe an ounce of liquid with meals on really good days. She is usually pretty offended by even seeing the cup. I've tried working with her with straw drinking, but she hasn't gotten that yet either (although we haven't been working on that long).
I have a hard time with knowing the balance between pushing her to overcome her sensitivities, and when to be okay with her being sensitive.
We make her try and feed herself puffs or goldfish (at least 5) before her meals. This consists of her eventually trying to pick up the puffs/goldfish (after a lot of encouragement) and then us putting our hand around hers so that she will hold it in her hand. Then we guide her hand to her mouth and put the puff/goldfish in her mouth. She is proud of herself once she realizes what she's done, but she does not know how to do it on her own. We've been working on this skill for months.
It is exhausting trying to feed her. It usually takes around 30 minutes. While I am thankful she can eat by mouth (many of the children we know with diagnoses like Grace's are tube fed), it is still very exhausting. There are times that I cry during meals. There are times that I get angry.
I HATE the disabilities. I HATE THEM. It breaks my heart that my child struggles with things like these issues that come so naturally to other children. EVERY milestone she meets is a pure STRUGGLE. There are days when I am okay with all that we go through to teach Grace to do new skills, and there are days that I give up and grieve for the things Grace has to go through just to do things that other kids do without even thinking about them.
Some days I feel the (extreme) pressure to achieve "normal". I want her to be able to do all the normal things other kids do. Then I realize that maybe she will never be "normal". This realization is both relieving and utterly heartbreaking...relieving because it takes the pressure off to achieve "normal," and heartbreaking because I know in my heart she will never be normal.
I feel like I'm rambling. I hope something here makes sense to some mom who has been there and can encourage me with positive thoughts and/or advice. Thank you for listening!
Wednesday, August 1, 2012
***PT Update***
Grace got into the crawl position ALL BY HERSELF this morning in PT!!!!!
Praises to God for this big goal that she met!
Next on the agenda: staying in the crawl position, crawling on her own, and pulling up! We are also going to be getting a hip splint, AFOs, and a standing frame in the near future.
God has big plans for our little girl. We are privileged just to watch and be involved.
Thank you, Lord, for helping Grace to accomplish this big goal. You knew we needed success. I pray that you will help her to continue to meet goals with strength and courage. Continue to give Chad and me strength and patience as we watch you work in her life. Thank you, thank you, thank you for ALL that you have done in her life and for all that you will continue to do to bring glory and honor to your great name. We love you and praise you for all your good works. Thank you for letting us witness your glory.
Praises to God for this big goal that she met!
Next on the agenda: staying in the crawl position, crawling on her own, and pulling up! We are also going to be getting a hip splint, AFOs, and a standing frame in the near future.
God has big plans for our little girl. We are privileged just to watch and be involved.
Thank you, Lord, for helping Grace to accomplish this big goal. You knew we needed success. I pray that you will help her to continue to meet goals with strength and courage. Continue to give Chad and me strength and patience as we watch you work in her life. Thank you, thank you, thank you for ALL that you have done in her life and for all that you will continue to do to bring glory and honor to your great name. We love you and praise you for all your good works. Thank you for letting us witness your glory.
The Little Light House
Last week, Chad, Grace, and I toured The Little Light House. TLLH is a developmental center for children with special needs. Children that go there have special needs like cerebral palsy, Down syndrome, hydrocephaly, autism, etc. Currently, they have three classes with eight children in each class. Last year, they had 10 graduates!
Grace has been on TLLH waiting list since February when our PT suggested it. To be honest, I learned about TLLH while I was in the hospital after having Grace, but at that time, we didn't really know what Grace's future needs would be. In February, Grace was number 33 on the waiting list. I called the week before last to schedule our tour since they recently moved. The director Carrie said, "Let me check and see where Grace is on the waiting list," and she started counting, "one, two, three...," and she got to the number seven. Grace is NUMBER 7 on the waiting list!!! I was expecting to maybe be in the 20s.
What does this mean? Well, it means that there is a very good possibility that Grace will be a student at TLLH next August! We just need them to graduate 7 this year, which they probably will. I cannot tell you how excited I am for Grace to attend TLLH!
"The Little Light House offers a tuition-free early intervention program for children birth to six years consisting of intensive therapeutic care and cognitive remediation. Addressing a child’s physical ability, wellness, mind, and community, our year-round program promotes systematic, long-term, healthy change. A Bible-based curriculum specifically designed for children with special needs is the foundation for our classroom structure. Working alongside parents, our staff members develop individual education plans with measurable goals for each child. School sessions are held Monday through Thursday, from 8:30am to 1:30pm."
Doesn't that sound AWESOME??!! Please join with us in prayer that Grace will be a student at TLLH next year!
Grace has been on TLLH waiting list since February when our PT suggested it. To be honest, I learned about TLLH while I was in the hospital after having Grace, but at that time, we didn't really know what Grace's future needs would be. In February, Grace was number 33 on the waiting list. I called the week before last to schedule our tour since they recently moved. The director Carrie said, "Let me check and see where Grace is on the waiting list," and she started counting, "one, two, three...," and she got to the number seven. Grace is NUMBER 7 on the waiting list!!! I was expecting to maybe be in the 20s.
What does this mean? Well, it means that there is a very good possibility that Grace will be a student at TLLH next August! We just need them to graduate 7 this year, which they probably will. I cannot tell you how excited I am for Grace to attend TLLH!
"The Little Light House offers a tuition-free early intervention program for children birth to six years consisting of intensive therapeutic care and cognitive remediation. Addressing a child’s physical ability, wellness, mind, and community, our year-round program promotes systematic, long-term, healthy change. A Bible-based curriculum specifically designed for children with special needs is the foundation for our classroom structure. Working alongside parents, our staff members develop individual education plans with measurable goals for each child. School sessions are held Monday through Thursday, from 8:30am to 1:30pm."
Doesn't that sound AWESOME??!! Please join with us in prayer that Grace will be a student at TLLH next year!
Wednesday, July 18, 2012
Playing Catch Up
We've been busy this summer, so I am playing catch up with this post!
At the end of June, we helped celebrate Grace's friend and future husband Walker's first birthday! He had a splash party, and we had so much fun!
I recently got to see one of my oldest friends, Lauren. When I say "oldest," I mean we met in the seventh grade in Coach Murphy's class (17 or 18 years ago!). We surprised Lauren at her work! It was great to see her! Please pray for Lauren, her husband Chris, and their baby Evan. At 20 weeks pregnant (in April), they found out that Evan has anencephaly. Her blog is http://funtimeswithshearow.blogspot.com/.
We celebrated Independence Day by spending time with family and friends. We went to Pickwick, went swimming, and had a fish fry. Grace enjoyed the fried fish and all the good sides that came with it! We enjoyed celebrating Independence Day as we remembered what the day is about, celebrating our country's freedom!
Also since my last post, I turned the big 3-0! I worked on my birthday, so we forgot to take pictures. :( I celebrated by spending time with family, getting taken out to dinner by Lyndsey and Suzanne, enjoying lunch and cake thanks to my coworkers, and getting visited at work by Chad and Grace! This is going to be a GOOD decade! :)
Grace has been doing great in therapy! First of all, she is almost there with crawling! Our newest focus is teaching her to get into the crawl position on her own and keeping her legs at a 90 degree angle to her body while in the crawl position (she likes to have her legs/knees/feet under her like a frog). She got really upset in PT this week (and last week), but she did really good. Our PT wants Grace to be able to get into the crawl position on her own by next week! We have a lot of work to do, but I know she can do it! She also did great in OT last week! Our newest focus there is teaching her to pull objects to herself by pulling the string that is attached to them. Make sense? Apparently this is a big skill to learn. I think she'll do it very soon! We also saw our ST last week (we only see her as needed). Grace continues to have issues with taking in liquids in any way other than her bottles. I was hoping we could start teaching her to drink through a straw, but our ST says we are not ready for that yet. We will continue what we are currently doing (teaching her to drink at the edge of a cup) and get her less sensitive to things on/in her mouth.
This past weekend, Chad and I had our first date night in a long time, and we decided to take a family picture before our date! We also took pictures of the cousins on Sunday after church. Enjoy!
Ok, I think that about catches you up! Please continue to pray for Grace! There is a list of prayer requests on the right side of my blog. Thank you!
I am He, I am He who will sustain you. I have made you and I will carry you; I will sustain you and I will rescue you. Isaiah 46:4
At the end of June, we helped celebrate Grace's friend and future husband Walker's first birthday! He had a splash party, and we had so much fun!
Making a splash!
The birthday boy was busy splashing too!
I recently got to see one of my oldest friends, Lauren. When I say "oldest," I mean we met in the seventh grade in Coach Murphy's class (17 or 18 years ago!). We surprised Lauren at her work! It was great to see her! Please pray for Lauren, her husband Chris, and their baby Evan. At 20 weeks pregnant (in April), they found out that Evan has anencephaly. Her blog is http://funtimeswithshearow.blogspot.com/.
We celebrated Independence Day by spending time with family and friends. We went to Pickwick, went swimming, and had a fish fry. Grace enjoyed the fried fish and all the good sides that came with it! We enjoyed celebrating Independence Day as we remembered what the day is about, celebrating our country's freedom!
Grace was posing
My twin sister Kristen and me
Also since my last post, I turned the big 3-0! I worked on my birthday, so we forgot to take pictures. :( I celebrated by spending time with family, getting taken out to dinner by Lyndsey and Suzanne, enjoying lunch and cake thanks to my coworkers, and getting visited at work by Chad and Grace! This is going to be a GOOD decade! :)
Grace has been doing great in therapy! First of all, she is almost there with crawling! Our newest focus is teaching her to get into the crawl position on her own and keeping her legs at a 90 degree angle to her body while in the crawl position (she likes to have her legs/knees/feet under her like a frog). She got really upset in PT this week (and last week), but she did really good. Our PT wants Grace to be able to get into the crawl position on her own by next week! We have a lot of work to do, but I know she can do it! She also did great in OT last week! Our newest focus there is teaching her to pull objects to herself by pulling the string that is attached to them. Make sense? Apparently this is a big skill to learn. I think she'll do it very soon! We also saw our ST last week (we only see her as needed). Grace continues to have issues with taking in liquids in any way other than her bottles. I was hoping we could start teaching her to drink through a straw, but our ST says we are not ready for that yet. We will continue what we are currently doing (teaching her to drink at the edge of a cup) and get her less sensitive to things on/in her mouth.
This past weekend, Chad and I had our first date night in a long time, and we decided to take a family picture before our date! We also took pictures of the cousins on Sunday after church. Enjoy!
Grace was busy trying to take her shoes and socks off
Pretty girl in her dress from Aunt Susie all the way from Thailand!
Ok, I think that about catches you up! Please continue to pray for Grace! There is a list of prayer requests on the right side of my blog. Thank you!
I am He, I am He who will sustain you. I have made you and I will carry you; I will sustain you and I will rescue you. Isaiah 46:4
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