After I just got comfortable learning how to blog...we are switching!
People have been wanting email updates that tell you I've posted, so that is the reason for the switch. You can sign up for an automatic update on this new site.
Please continue to follow Ashley's story at...
strength42day.wordpress.com
Wednesday, March 9, 2011
Tuesday, March 8, 2011
Tuesday night
Well, the thru the night feeding went fine until 5 am when all the alarms went off because the tube had kinked when she rolled over on it! She was eventually able to fall back asleep, but it is a struggle for us older folks!
The morning started at an eye dtr appt. We were very concerned with her eyes and the light sensitivity and wanted to address it. We saw Christian Carter, he is awesome, and he gave her a clean bill of health. So, that leaves us with the light sensitivity purely being a psych issue or perhaps this magnesium deficiency. I think for now I fall in the middle of the two.
Then we spent a lot of time with our visiting nurse. It's funny, when first talk of the feeding tube came about, I said to Mike that I didn't care what it cost, that I wanted a nurse to come for every feeding! Well, she just swung by to "check on us" and said that we were fine, so I guess my perception of a visiting nurse was way off! Apparently, this is an area that God wants to grow me in!
We also decided today to move our appt at CHOP. I really don't want to take her up there on a feeding tube, plus we felt like she had just been through all this trauma at UVA and wasn't strong enough for the trip. We will definitely still go back and see Dr. Verma, do the bone scan, etc., but at a time that is better for her.
We also started amitriptyline. With all we have read and been told from many dtrs about the gut being the second brain, her struggling neurotransmitters, etc., we just felt like she needed a little help to get over this hump mentally. All dtrs (Richmond, Philly, UVA) agreed with this decision. We will also continue counseling.
When she feeds, she is even more irritated by the tube and moans/cries louder and insists on my hand being on her stomach during this time. I always pray through feedings (well, when I'm not totally exhausted) and I desire that my hand would be the healing hand of Jesus lying on her stomach.
How are we doing folks ask? Tired...physically, emotionally, spiritually. At times I just almost feel numb because of how long this road has been. At times I feel encouraged and totally uplifted. It really depends on the moment. My heart YEARNS for her to talk, laugh, sing and play again...please pray that she wouldn't totally shut us out!
No progress today with soft foods. She only took maybe 10 sips of water all day, she is really resistant with the tube. The visiting nurse said that some kids just won't eat with it in...so again, pray for wisdom...when do we take it out to see if she is ready to eat?
A BIG THANKS to Stuart and Tom for clearing some trees that needed to be taken down in our backyard. Thanks for serving us in this way! I think it was good for Mike to get outside and have some "mantime" as well:)
HUGE THANKS also to everyone at ACTS who sent the awesome posterboard card and the sweet cards and gifts! She hasn't had the energy to read it all yet, but I know it means a lot to her to be remembered! Grateful for your prayers and encouragement ACTS friends!
In Christ,
Lori
The morning started at an eye dtr appt. We were very concerned with her eyes and the light sensitivity and wanted to address it. We saw Christian Carter, he is awesome, and he gave her a clean bill of health. So, that leaves us with the light sensitivity purely being a psych issue or perhaps this magnesium deficiency. I think for now I fall in the middle of the two.
Then we spent a lot of time with our visiting nurse. It's funny, when first talk of the feeding tube came about, I said to Mike that I didn't care what it cost, that I wanted a nurse to come for every feeding! Well, she just swung by to "check on us" and said that we were fine, so I guess my perception of a visiting nurse was way off! Apparently, this is an area that God wants to grow me in!
We also decided today to move our appt at CHOP. I really don't want to take her up there on a feeding tube, plus we felt like she had just been through all this trauma at UVA and wasn't strong enough for the trip. We will definitely still go back and see Dr. Verma, do the bone scan, etc., but at a time that is better for her.
We also started amitriptyline. With all we have read and been told from many dtrs about the gut being the second brain, her struggling neurotransmitters, etc., we just felt like she needed a little help to get over this hump mentally. All dtrs (Richmond, Philly, UVA) agreed with this decision. We will also continue counseling.
When she feeds, she is even more irritated by the tube and moans/cries louder and insists on my hand being on her stomach during this time. I always pray through feedings (well, when I'm not totally exhausted) and I desire that my hand would be the healing hand of Jesus lying on her stomach.
How are we doing folks ask? Tired...physically, emotionally, spiritually. At times I just almost feel numb because of how long this road has been. At times I feel encouraged and totally uplifted. It really depends on the moment. My heart YEARNS for her to talk, laugh, sing and play again...please pray that she wouldn't totally shut us out!
No progress today with soft foods. She only took maybe 10 sips of water all day, she is really resistant with the tube. The visiting nurse said that some kids just won't eat with it in...so again, pray for wisdom...when do we take it out to see if she is ready to eat?
A BIG THANKS to Stuart and Tom for clearing some trees that needed to be taken down in our backyard. Thanks for serving us in this way! I think it was good for Mike to get outside and have some "mantime" as well:)
HUGE THANKS also to everyone at ACTS who sent the awesome posterboard card and the sweet cards and gifts! She hasn't had the energy to read it all yet, but I know it means a lot to her to be remembered! Grateful for your prayers and encouragement ACTS friends!
In Christ,
Lori
Monday, March 7, 2011
Monday night...we are home
Friends, long day, but we are home. I have mixed emotions. I'm not saying that I wanted to stay in the hospital, but I'm also not excited to be home with the NG tube. Luckily, Mike's comfort level with all this is a lot higher than mine.
She is still incredibly uncomfortable with the tube in her throat, so no luck with any soft foods today. PLEASE pray that she will try tomorrow. It's such a tricky situation. UVA said that many kids don't feel comfortable eating with the tube, but then they want her to eat to take the tube out...what do you do? We need to pray that she will at least be willing to try soft things!
Please pray for wisdom on when the tube should come out...too soon, and maybe she won't get strong enough, too long and maybe she won't try to eat when it comes out. They will not keep the tube in the same side of the nose longer than 7-10 days, so basically we're looking at Friday or Monday...Monday, could I ever make it that long? Then, if she won't eat, they would put one in the other side for the same length of time. Then the dtrs said it becomes the "law of diminishing returns" and they won't keep going back and forth and then our next avenue is a feeding tube straight to the stomach, a G-tube...I pray that it would never come to this!!!
People ask...what's hardest? The fact that she moans all the time, perhaps as a coping mechanism, and that she doesn't speak at all anymore, either because of the discomfort of the tube or simply because she is sick of all this, I would be too...my guess is that it is a combination of both.
The constant intensity of this situation is beyond words...your prayers are what is sustaining us,
Lori
Mary and Todd...thanks for your encouragement today:)
Happy, Happy Birthday to my Mom today...sorry that we can't be with you to celebrate!
Please continue to pray for our roommate, the six week old precious baby boy with spina bifida. We had great conversation throughout the morning with his mother!
She is still incredibly uncomfortable with the tube in her throat, so no luck with any soft foods today. PLEASE pray that she will try tomorrow. It's such a tricky situation. UVA said that many kids don't feel comfortable eating with the tube, but then they want her to eat to take the tube out...what do you do? We need to pray that she will at least be willing to try soft things!
Please pray for wisdom on when the tube should come out...too soon, and maybe she won't get strong enough, too long and maybe she won't try to eat when it comes out. They will not keep the tube in the same side of the nose longer than 7-10 days, so basically we're looking at Friday or Monday...Monday, could I ever make it that long? Then, if she won't eat, they would put one in the other side for the same length of time. Then the dtrs said it becomes the "law of diminishing returns" and they won't keep going back and forth and then our next avenue is a feeding tube straight to the stomach, a G-tube...I pray that it would never come to this!!!
People ask...what's hardest? The fact that she moans all the time, perhaps as a coping mechanism, and that she doesn't speak at all anymore, either because of the discomfort of the tube or simply because she is sick of all this, I would be too...my guess is that it is a combination of both.
The constant intensity of this situation is beyond words...your prayers are what is sustaining us,
Lori
Mary and Todd...thanks for your encouragement today:)
Happy, Happy Birthday to my Mom today...sorry that we can't be with you to celebrate!
Please continue to pray for our roommate, the six week old precious baby boy with spina bifida. We had great conversation throughout the morning with his mother!
Monday morning
I must have been really exhausted last night...I also forgot to thank my friend Tessa, who not only came to visit, but brought soft foods that are on Ashley's SCD!!! Thankful for you laboring with us on Ashley's care...SOO grateful!
Prayers for today...
WISDOM...for us and the dtrs to know when Ashley should come home and how long she should have the feeding tube.
SOFT FOODS...please pray that she will start eating some soft foods today.
GRATEFUL...Lori
And for continued health for our whole family!!!
Prayers for today...
WISDOM...for us and the dtrs to know when Ashley should come home and how long she should have the feeding tube.
SOFT FOODS...please pray that she will start eating some soft foods today.
GRATEFUL...Lori
And for continued health for our whole family!!!
Sunday, March 6, 2011
Sunday night
She took in all her fluids fine today. Drank some water, but was resistant to applesauce/yogurt. Please pray that tomorrow she will be willing to try soft foods. Please continue to pray for her to overcome her discomfort with the tube, especially in her throat. Please also pray for wisdom in talking with the dtrs about when to go home and when to stop the NG tube.
Please also pray for the baby that we are sharing a room with. He is 6 weeks old and has spina bifida and just had surgery to put in a shunt. He is pretty miserable tonight and we would love for you to lift him and his family up in prayer as well.
Grateful for encouraging visits today from the Dilly's, the Hornsby's, Bruce and Valerie (my YLives girl). You guys keep us going:)
Very tired,
Lori
Please also pray for the baby that we are sharing a room with. He is 6 weeks old and has spina bifida and just had surgery to put in a shunt. He is pretty miserable tonight and we would love for you to lift him and his family up in prayer as well.
Grateful for encouraging visits today from the Dilly's, the Hornsby's, Bruce and Valerie (my YLives girl). You guys keep us going:)
Very tired,
Lori
Sunday morning
PRAISE GOD...she kept everything down!
Please continue to pray for strong, quick nourishment from the food and the quick working of the Flagyl. We will try some real, soft food today...PLEASE pray that she will try it with the irritation of the tube...it is very much still bothering her! Pray for comfort.
There are a lot of sick, contagious kids near us, like CHOP, please pray that we don't pick up anything new that they have! And please be healthy if you want to visit!
Praying to "dance in the rain" today:)
Lori
Please continue to pray for strong, quick nourishment from the food and the quick working of the Flagyl. We will try some real, soft food today...PLEASE pray that she will try it with the irritation of the tube...it is very much still bothering her! Pray for comfort.
There are a lot of sick, contagious kids near us, like CHOP, please pray that we don't pick up anything new that they have! And please be healthy if you want to visit!
Praying to "dance in the rain" today:)
Lori
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