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
Saturday, March 5, 2011
Saturday night
Very tired friends...will be brief.
The most important prayer for the night is that Ashley wouldn't throw up from the feedings being soo close together. Ideally, we were hoping for her 3 daytime feeds to be close to 9, 12 and 5, with the nighttime slow drip starting at 10. But due to all the drama with the dtr this morning and the turn around rate of things in a hospital, her meals were 12, 4:30 and 8 today, with the night drip starting at 10. It's closer than I would desire, but the best we could do today because of the circumstances this morning.
PLEASE PRAY THAT SHE HOLDS IT ALL DOWN TONIGHT! If she does, I think we're in great shape and can get on the normal schedule that we were desiring starting tomorrow.
By the way, I just have to say how much I love Dr. Verma at CHOP. We have not even met her yet, she wasn't in house when we were there, but yet she is SOO helpful and continues to email me back almost immediately when I have questions. I emailed her the feeding dilemma that we were dealing with this morning and asked her advice. She said that she would do 3 bolus feeds (3 meals a day of 250) and a slow drip at night (750) total of 1500 calories. Isn't that interesting...exactly what we fought with the UVA dtr to get this morning? Enough said.
PRAYER...that she would keep the nighttime feeding down...that the feedings will QUICKLY help her regain her strength...that the Flagyl will work quickly. (and that we wouldn't have to fight with the dtrs again about it) Also, PLEASE PRAY for her comfort level. She is VERY uncomfortable with the tube, understandably so, and basically keeps a low moan going all day and a cry going during each feed. PLEASE PRAY that the Lord will touch her throat and nose and cause the discomfort to leave!
MANY THANKS TODAY...I actually don't even know who to exactly thank! I heard that homegroup (Hornsby's, White's, George's, Dilly's) worked in my yard, thanks! It was too dark to look when I got home, so I can't wait to see tomorrow. I heard that some YL girls earning money for summer camp cleaned all the windows/blinds in my house...I seriously haven't done that once in the 9 years that we have lived in this house...that's incredible! And thanks to the Hornsby's for having Cooper over and coming to the hospital with Mallory:) Although this morning I was wishing we were at CHOP, I am INCREDIBLY grateful for our support system here! Truly couldn't do it without you friends!!!
Grateful beyond what words can express,
Lori
The most important prayer for the night is that Ashley wouldn't throw up from the feedings being soo close together. Ideally, we were hoping for her 3 daytime feeds to be close to 9, 12 and 5, with the nighttime slow drip starting at 10. But due to all the drama with the dtr this morning and the turn around rate of things in a hospital, her meals were 12, 4:30 and 8 today, with the night drip starting at 10. It's closer than I would desire, but the best we could do today because of the circumstances this morning.
PLEASE PRAY THAT SHE HOLDS IT ALL DOWN TONIGHT! If she does, I think we're in great shape and can get on the normal schedule that we were desiring starting tomorrow.
By the way, I just have to say how much I love Dr. Verma at CHOP. We have not even met her yet, she wasn't in house when we were there, but yet she is SOO helpful and continues to email me back almost immediately when I have questions. I emailed her the feeding dilemma that we were dealing with this morning and asked her advice. She said that she would do 3 bolus feeds (3 meals a day of 250) and a slow drip at night (750) total of 1500 calories. Isn't that interesting...exactly what we fought with the UVA dtr to get this morning? Enough said.
PRAYER...that she would keep the nighttime feeding down...that the feedings will QUICKLY help her regain her strength...that the Flagyl will work quickly. (and that we wouldn't have to fight with the dtrs again about it) Also, PLEASE PRAY for her comfort level. She is VERY uncomfortable with the tube, understandably so, and basically keeps a low moan going all day and a cry going during each feed. PLEASE PRAY that the Lord will touch her throat and nose and cause the discomfort to leave!
MANY THANKS TODAY...I actually don't even know who to exactly thank! I heard that homegroup (Hornsby's, White's, George's, Dilly's) worked in my yard, thanks! It was too dark to look when I got home, so I can't wait to see tomorrow. I heard that some YL girls earning money for summer camp cleaned all the windows/blinds in my house...I seriously haven't done that once in the 9 years that we have lived in this house...that's incredible! And thanks to the Hornsby's for having Cooper over and coming to the hospital with Mallory:) Although this morning I was wishing we were at CHOP, I am INCREDIBLY grateful for our support system here! Truly couldn't do it without you friends!!!
Grateful beyond what words can express,
Lori
Saturday- 2PM
Ashley is finally resting and not moaning! But unfortunately our roommate is on a normal life schedule, so pray that the TV and their guests won't wake Ashley up!
I don't think I can even put into words what happened this morning. We had a very heated and emotional discussion with the dtr. I know that I need to apologize to him the next time we see him, but, I hate to say it this way, we got what is best for Ashley. The bottom line is that he only wanted to feed her 500 calories at night to give her "a chance to eat" during the day. Well, Ashley's daily intake should be 1600/1700 calories and we didn't bring her into the hospital to have her starve, we could have accomplished that at home. I clearly understand the point of wanting her to still try and eat and also not wanting to give her soo much that she throws up, but that is unacceptable. I, unfortunately not so calmly, explained to him that she WON'T eat on her own and that is why we are here...to give her a break from the trauma of eating and to strengthen her, so she can think clearly and hopefully desire to eat again. That was the plan that was discussed with our nurse on Wed. and we thought we were on the same page, but we are learning that not everyone talks to each other around here.
We also had quite a battle over the Flagyl. I probably can't say too much because I don't know who is reading this blog, but we were basically told that there is a national shortage of oral Flagyl and UVA is out and can't get any right now. I, not soo calmly again, explained that I picked some up at Kroger on Thurs. and have it in my purse currently! All I will say is that this issue has also been resolved.
God's goodness to us today...giving us an AMAZING nurse this shift...Jackie! She's the best! Also, it was such an encouragement to have Laura come and sit, pray and enter into the struggle with us. It gets a little monotonous at times and it definitely helps to have others jump in with fresh perspective. Soo grateful for your love and encouragement today friend:)
Bottom line...Ashley is miserable with the NG tube and spends most of the day crying/moaning. We now feel good about the feeding and Flagyl plan. PLEASE pray that the food strengthens her quickly and that the Flagyl works quickly as well to reduce her bacterial overgrowth. (that's a whole other conversation with the dtrs to share later!) PLEASE PRAY FOR THE COMFORT, PRESENCE AND PEACE OF THE HOLY SPIRIT TO BE UPON HER! She could use a break today...pray that she has a special sense of the Lord's presence and nearness to her each moment!
I keep waiting for a "breather" in this whole experience...
YOUR PRAYERS ARE WHAT IS SUSTAINING US...PLEASE DON'T STOP...thanks for pressing in,
Lori
I don't think I can even put into words what happened this morning. We had a very heated and emotional discussion with the dtr. I know that I need to apologize to him the next time we see him, but, I hate to say it this way, we got what is best for Ashley. The bottom line is that he only wanted to feed her 500 calories at night to give her "a chance to eat" during the day. Well, Ashley's daily intake should be 1600/1700 calories and we didn't bring her into the hospital to have her starve, we could have accomplished that at home. I clearly understand the point of wanting her to still try and eat and also not wanting to give her soo much that she throws up, but that is unacceptable. I, unfortunately not so calmly, explained to him that she WON'T eat on her own and that is why we are here...to give her a break from the trauma of eating and to strengthen her, so she can think clearly and hopefully desire to eat again. That was the plan that was discussed with our nurse on Wed. and we thought we were on the same page, but we are learning that not everyone talks to each other around here.
We also had quite a battle over the Flagyl. I probably can't say too much because I don't know who is reading this blog, but we were basically told that there is a national shortage of oral Flagyl and UVA is out and can't get any right now. I, not soo calmly again, explained that I picked some up at Kroger on Thurs. and have it in my purse currently! All I will say is that this issue has also been resolved.
God's goodness to us today...giving us an AMAZING nurse this shift...Jackie! She's the best! Also, it was such an encouragement to have Laura come and sit, pray and enter into the struggle with us. It gets a little monotonous at times and it definitely helps to have others jump in with fresh perspective. Soo grateful for your love and encouragement today friend:)
Bottom line...Ashley is miserable with the NG tube and spends most of the day crying/moaning. We now feel good about the feeding and Flagyl plan. PLEASE pray that the food strengthens her quickly and that the Flagyl works quickly as well to reduce her bacterial overgrowth. (that's a whole other conversation with the dtrs to share later!) PLEASE PRAY FOR THE COMFORT, PRESENCE AND PEACE OF THE HOLY SPIRIT TO BE UPON HER! She could use a break today...pray that she has a special sense of the Lord's presence and nearness to her each moment!
I keep waiting for a "breather" in this whole experience...
YOUR PRAYERS ARE WHAT IS SUSTAINING US...PLEASE DON'T STOP...thanks for pressing in,
Lori
Friday, March 4, 2011
Friday night
Ashley was sedated and still hysterical...4 tries by the nurses with the feeding tube...I had to leave the room...Mike is amazing...
I left at 10:30 and still no food in her yet! They are waiting for a chest x-ray to make sure the tube is in the right place (I obviously agree with this procedure, but who knows how long it will take them.) And they are also looking for the formula. I had been in touch with the UVA dietician 3/4 times this week leading up to this and she said they had Elecare on the floor. I even offered to get it myself since I have done this before. When I just left the nurse was still looking for it and couldn't find it, so Ash might have to eat something else for tonight I guess.
3 tries with the IV...4 tries with the feeding tube...almost 8 hrs (3 pm) since we have been in the room and still no food...please pray that by the grace of God He will help her somehow forget this traumatic night as we already had a lot to process in counseling!!!
Lori
Thank you Bowmans, Leigh Anne, Lauren and Keysers for all your loving kindness today...Cooper's first sleepover, wow!
Brittany reminded me today that I forgot to mention how much we enjoyed our visit with Joel and Holly as well yesterday:)
SOO grateful for friends at this time. We have been living in "crisis mode" since the beginning of Jan. and we don't know what we'd do without you!!!
I left at 10:30 and still no food in her yet! They are waiting for a chest x-ray to make sure the tube is in the right place (I obviously agree with this procedure, but who knows how long it will take them.) And they are also looking for the formula. I had been in touch with the UVA dietician 3/4 times this week leading up to this and she said they had Elecare on the floor. I even offered to get it myself since I have done this before. When I just left the nurse was still looking for it and couldn't find it, so Ash might have to eat something else for tonight I guess.
3 tries with the IV...4 tries with the feeding tube...almost 8 hrs (3 pm) since we have been in the room and still no food...please pray that by the grace of God He will help her somehow forget this traumatic night as we already had a lot to process in counseling!!!
Lori
Thank you Bowmans, Leigh Anne, Lauren and Keysers for all your loving kindness today...Cooper's first sleepover, wow!
Brittany reminded me today that I forgot to mention how much we enjoyed our visit with Joel and Holly as well yesterday:)
SOO grateful for friends at this time. We have been living in "crisis mode" since the beginning of Jan. and we don't know what we'd do without you!!!
PLEASE PRAY NOW
Ashley is hysterical...we can't do the tube... PLEASE PRAY FOR THE CALMNESS, PEACE AND COMFORT of the Holy Spirit to rule and reign in her heart, head and body. If she can't calm down we will have to sedate.
UVA
So I called our nurse when we were in the car on the way to the ER and she asked us to go back home and give her an hour. So, we actually came back home and left 45 minutes later. I guess she knew we were serious. We are finally in our room and have the IV. It was not the best IV experience we've had, it took her 3 tries. PLEASE PRAY that the feeding tube goes in VERY SMOOTHLY...we could use a positive hospital experience!!! She is very anxious, agitated and still moaning!
Keep praying please, we'll keep you posted!
Lori
Keep praying please, we'll keep you posted!
Lori
Headed in...
Very disappointed, haven't heard from UVA. We have waited on them since Wed. morning. She has barely taken in anything today. Tired of waiting, heading thru the ER. Pray for mercy...that we get upstairs quickly and for all the things I mentioned last night!!!
THANK YOU PRAYER WARRIORS!!!
THANK YOU PRAYER WARRIORS!!!
Thursday, March 3, 2011
Thurs. 3rd
Wow, where to begin? This has been such a hard road, I really can't even put it into words. Someone asked me recently why I don't just get out every once in awhile...well, I liken it to nursing twins (sorry guys) but once you're done with one (feeding, burping, changing) it's time to feed the next one and you feel like that's all you do all day and all night (at least that's what I can recall during that season of life that was such a blur!) It takes Ash a LONG time to consume a shake, we've even recently tried to reduce the size and instead of doing 3 big, do 6 small. I really can't explain it, but pretty much feeding her, bathing her (she does love her daily epsom salts bath), giving her all her supplements, taking her to appts, figuring out what the rest of the family will eat (although I have forgotten about them at times), calling dtrs, researching on the internet and maybe doing some laundry...that is how our days are spent!
I have to share the sweet moments of the day first...doing an hour of history with Brittany while Ashley slept this afternoon! Sounds crazy I know, but I haven't gotten much one-on-one time with Brit and Coop lately and Brittany really wanted to wrap up the chapters that we've had open for awhile. We typically meet every Friday to go over her History work for the week and today we really enjoyed our time together and we got 3 chapters done in an hour! And this brought me to tears...Cooper said today, "You know Mom, there have been a lot of hard things with Ashley being sick, but some good things too." So when I asked him what he felt those were, he said, "We've gotten a lot closer as a family, spent more time together, been less busy and prayed more." (ok, for those who didn't read further back on my blog...that directly speaks to 2 of the 3 things that I had been praying for months...go check them out!) Then Brittany chimed in, "and we've gotten to see the Body of Christ at work and our friends stepping up to help us." WOW...thank you Jesus! I did think the "stepping up" comment was cute because that's what I always say when I'm calling them out! Even when I feel like I can't pick up my head, God lifts me by the chin!
Now the big news medically. I probably can't do it justice, but will try. Once again, our Richmond dtr is beyond description. Her daughter had a medial emergency and she flew to see her today in the hospital, but YET she sensed my desperation and called the lab and had them fax the results. We have a phone appt on Monday to go over them in detail, but I will try to summarize (with the deciphering help once again of my incredible friend Tessa.) Basically, it's exactly what we latched on to earlier in the week. Ashley has virtually NO good bacteria in her gut and VERY high numbers for lots of bad ones. It makes me cry to think how messed up it is, but also makes me CRY rejoicing that we now have some answers! This will be a LONG road, probably many months to year (s) to heal, but TODAY is the first day along that road. The dtr immediately called in Flagyl for us and we started it tonight. There are several other supplements (probiotics, etc.) we will add to those that we are already doing, but I'm not even clear on all of them right now. And once again, when Ashley is eating again, we will strictly follow the SCD to starve the bad bacteria. By the way, several folks have emailed me that they have been on this diet and it has helped their IBS, Chrons, Ulcerative Colitis...something to look into if you suffer from any intestinal issue. But be aware, there are many medical dtrs that we have encountered that have never even heard of it!
Obviously I have learned a lot, but the most important lessons are to go with your mother's instinct and that you are your child's NUMBER ONE advocate! Seriously, several dtrs we have encountered have been unable to see the whole picture. If you left Ashley just to "take time" to "transition" through her Celiac, I shudder to think where we would have ended up. Also, dtrs kept telling me that she had a cold, the psych consult at CHOP even told me that she thought her throat clearing was like a nervous twitch to deal with her anxiety! I knew they were wrong and that we had to find the real answer. I am not exaggerating that she coughs up paper towel fulls of mucus all day long...no wonder why she can't swallow these shakes...she can barely swallow! Plus this totally medically validates her pain. I am not saying that there isn't counseling needed, I obviously believe that is an integral part to this medical trauma and I only wish we would have started it sooner. But the bottom line is that HER GUT IS KILLING HER! She's had this bad bacteria attacking her stomach since Sept and we probably held it at bay all fall with a probiotic, but then in Jan./Feb. it took off, that's when the mucus started. Addressing her lack of speech, sadness, etc...it is also totally validated (and don't ask me to explain this in detail) but her neurotransmitters on her urine test were soo low that those type of numbers can cause anxiety, depression and many other neurological issues. Ashley will not recover from this overnight, but PRAISE GOD for the beginning of the healing process!
So, TOMORROW...uuuuhhhh, can we just go to sleep and not think about tomorrow? I do have more of a peace than ever that she needs the tube. The Flagyl will take time to work and with the increased mucus, I really don't think she can reach her necessary intake...at least with her and us staying sane in the process. Like I said, it will give her a mental break from the trauma of the shakes and strengthen her. Please PRAY that the Flagyl will work quickly in helping her gut feel better and maybe help reduce the amount of time that we need the feeding tube for.
PLEASE PRAY for no complications with the tube and a very SMOOTH implementation! She is definitely scared and has been through soo much that this will not be easy...please PRAY hard tomorrow for her to be calm. Everything will go much smoother if she is. We are uncertain how long we will be in the hospital, but will keep you posted. We know that IV fluids are part of the plan, as well, hopefully, as a neurological consult to just check on the issue of gluten ataxia. We will keep the blog updated. Mike's dad arrived today and his mom is coming tomorrow, so that will be a huge help! We will both head in with her tomorrow and probably have Mike do nights and I will do the days. Please check the blog concerning visitors, thanks.
I was thinking tonight of how my heart has literally broken over and over again for her that, at times, I almost feel numb. But then I thought of how the Father's heart broke when He saw His Son suffering on the cross for our sins, and truly know that God can identify with my pain!
PLEASE PRAY HARD TOMORROW...clinging to Is. 46:4
"I am HE, I am HE who will sustain you Ashley. I have made you Ashley and I will carry you, I will sustain you Ashley and I will rescue you."
Grateful,
Lori
Thanks to the Kyners and Trivettes today for continuing to love on Brit and Coop...as Brittany said today...the Body of Christ at work as God intended it to be!!!
Oh, I can't end without adding this...my husband is amazing! He is calm when I can no longer be and level headed when I have lost it! This was a hard week for him as well, he gave up one of his all-time favorite things to do in life...take college boys to the Everglades! I know that some of you college boys are disappointed, but know that he wanted to take you SOO badly! He was still collecting canoes, trailers and camping gear up until earlier this week when the NG tube was quickly approaching. He cares deeply for you guys and we all naturally regret the timing of all this. I hope that many of you can join him next Jan., as he is already planning to reschedule the trip for then!!!
I have to share the sweet moments of the day first...doing an hour of history with Brittany while Ashley slept this afternoon! Sounds crazy I know, but I haven't gotten much one-on-one time with Brit and Coop lately and Brittany really wanted to wrap up the chapters that we've had open for awhile. We typically meet every Friday to go over her History work for the week and today we really enjoyed our time together and we got 3 chapters done in an hour! And this brought me to tears...Cooper said today, "You know Mom, there have been a lot of hard things with Ashley being sick, but some good things too." So when I asked him what he felt those were, he said, "We've gotten a lot closer as a family, spent more time together, been less busy and prayed more." (ok, for those who didn't read further back on my blog...that directly speaks to 2 of the 3 things that I had been praying for months...go check them out!) Then Brittany chimed in, "and we've gotten to see the Body of Christ at work and our friends stepping up to help us." WOW...thank you Jesus! I did think the "stepping up" comment was cute because that's what I always say when I'm calling them out! Even when I feel like I can't pick up my head, God lifts me by the chin!
Now the big news medically. I probably can't do it justice, but will try. Once again, our Richmond dtr is beyond description. Her daughter had a medial emergency and she flew to see her today in the hospital, but YET she sensed my desperation and called the lab and had them fax the results. We have a phone appt on Monday to go over them in detail, but I will try to summarize (with the deciphering help once again of my incredible friend Tessa.) Basically, it's exactly what we latched on to earlier in the week. Ashley has virtually NO good bacteria in her gut and VERY high numbers for lots of bad ones. It makes me cry to think how messed up it is, but also makes me CRY rejoicing that we now have some answers! This will be a LONG road, probably many months to year (s) to heal, but TODAY is the first day along that road. The dtr immediately called in Flagyl for us and we started it tonight. There are several other supplements (probiotics, etc.) we will add to those that we are already doing, but I'm not even clear on all of them right now. And once again, when Ashley is eating again, we will strictly follow the SCD to starve the bad bacteria. By the way, several folks have emailed me that they have been on this diet and it has helped their IBS, Chrons, Ulcerative Colitis...something to look into if you suffer from any intestinal issue. But be aware, there are many medical dtrs that we have encountered that have never even heard of it!
Obviously I have learned a lot, but the most important lessons are to go with your mother's instinct and that you are your child's NUMBER ONE advocate! Seriously, several dtrs we have encountered have been unable to see the whole picture. If you left Ashley just to "take time" to "transition" through her Celiac, I shudder to think where we would have ended up. Also, dtrs kept telling me that she had a cold, the psych consult at CHOP even told me that she thought her throat clearing was like a nervous twitch to deal with her anxiety! I knew they were wrong and that we had to find the real answer. I am not exaggerating that she coughs up paper towel fulls of mucus all day long...no wonder why she can't swallow these shakes...she can barely swallow! Plus this totally medically validates her pain. I am not saying that there isn't counseling needed, I obviously believe that is an integral part to this medical trauma and I only wish we would have started it sooner. But the bottom line is that HER GUT IS KILLING HER! She's had this bad bacteria attacking her stomach since Sept and we probably held it at bay all fall with a probiotic, but then in Jan./Feb. it took off, that's when the mucus started. Addressing her lack of speech, sadness, etc...it is also totally validated (and don't ask me to explain this in detail) but her neurotransmitters on her urine test were soo low that those type of numbers can cause anxiety, depression and many other neurological issues. Ashley will not recover from this overnight, but PRAISE GOD for the beginning of the healing process!
So, TOMORROW...uuuuhhhh, can we just go to sleep and not think about tomorrow? I do have more of a peace than ever that she needs the tube. The Flagyl will take time to work and with the increased mucus, I really don't think she can reach her necessary intake...at least with her and us staying sane in the process. Like I said, it will give her a mental break from the trauma of the shakes and strengthen her. Please PRAY that the Flagyl will work quickly in helping her gut feel better and maybe help reduce the amount of time that we need the feeding tube for.
PLEASE PRAY for no complications with the tube and a very SMOOTH implementation! She is definitely scared and has been through soo much that this will not be easy...please PRAY hard tomorrow for her to be calm. Everything will go much smoother if she is. We are uncertain how long we will be in the hospital, but will keep you posted. We know that IV fluids are part of the plan, as well, hopefully, as a neurological consult to just check on the issue of gluten ataxia. We will keep the blog updated. Mike's dad arrived today and his mom is coming tomorrow, so that will be a huge help! We will both head in with her tomorrow and probably have Mike do nights and I will do the days. Please check the blog concerning visitors, thanks.
I was thinking tonight of how my heart has literally broken over and over again for her that, at times, I almost feel numb. But then I thought of how the Father's heart broke when He saw His Son suffering on the cross for our sins, and truly know that God can identify with my pain!
PLEASE PRAY HARD TOMORROW...clinging to Is. 46:4
"I am HE, I am HE who will sustain you Ashley. I have made you Ashley and I will carry you, I will sustain you Ashley and I will rescue you."
Grateful,
Lori
Thanks to the Kyners and Trivettes today for continuing to love on Brit and Coop...as Brittany said today...the Body of Christ at work as God intended it to be!!!
Oh, I can't end without adding this...my husband is amazing! He is calm when I can no longer be and level headed when I have lost it! This was a hard week for him as well, he gave up one of his all-time favorite things to do in life...take college boys to the Everglades! I know that some of you college boys are disappointed, but know that he wanted to take you SOO badly! He was still collecting canoes, trailers and camping gear up until earlier this week when the NG tube was quickly approaching. He cares deeply for you guys and we all naturally regret the timing of all this. I hope that many of you can join him next Jan., as he is already planning to reschedule the trip for then!!!
Wednesday, March 2, 2011
Wed.-3/2
Hard counseling appt today...I can't explain all the details, but Mike and I are in agreement that the feeding tube is necessary. We tried to get in today, but were told to come Friday morning. She needs a break from the struggle of eating and hopefully it will give her an overall boost. She is very scared.
We are still excited about the SCD, even tried some recipes today. She's just not eating enough to care, so we are looking forward to implementing it in the future.
We are still awaiting the lab results that will give us insight on what is going on inside Ash and hopefully provide some answers.
Very hard day today, I think we are all weary of the struggle.
Grateful to the Keysers for giving Cooper and Brittany a much needed mental break and change of scenery!!!
Thanks for praying without ceasing...
Lori
Ps 61:1-4
We are still excited about the SCD, even tried some recipes today. She's just not eating enough to care, so we are looking forward to implementing it in the future.
We are still awaiting the lab results that will give us insight on what is going on inside Ash and hopefully provide some answers.
Very hard day today, I think we are all weary of the struggle.
Grateful to the Keysers for giving Cooper and Brittany a much needed mental break and change of scenery!!!
Thanks for praying without ceasing...
Lori
Ps 61:1-4
Tuesday, March 1, 2011
Tuesday-3/1
Just when I think that each day can't get more intense...
Poor Ash started off at LabCorp getting more blood drawn. This is for the dtr in Richmond and we are really looking forward to knowing the results...not just your typical blood tests.
MUCUS...yes, mucus! That is the key word for the day! The Lord knew I needed a breakthrough...all this suffering and no real answers. Well, today, as we were going thru the daily ritual of trying to get her shake consumed, she kept coughing up and wiping mucus from her mouth. This has been happening for weeks, really can't remember how long since much of this dilemma blurs together. I always thought that she had a cold (especially when we were in CHOP) or that is just what you get when you drink nasty feeding tube formula. So, I decided to email the UVA dietician and ask her opinion. She said that she had never heard of anyone complain of that before. So, back to researching and the MUCUS issue jumped out at me...
"Very simply, the Specific Carbohydrate Diet, which is grain free and lactose free, restores balance where "bad" intestinal microbes have been "allowed" to overgrow and thus create problems with absoption. When the "bad" microbes are allowed to overgrow, they produce toxins which iritate the lining of the intestines. The intestines, in an attempt to protect itself against the toxins, produce mucus which coat the surface.
Unfortunately, this mucus prevents the normal absorption, creating illnesses by way of "malabsorption." The diet re-establishs "good gut" flora, while starving the problem makers by eliminating the carbohydrates that feed these "bad guys." By starving the "bad" microbes out, the intestines are allowed to rest, heal, and re-establish the normal absorption of nutrients. It is important to note that the diet is often used in conjunction with medications."
Thanks again to my good friend Tessa for deciphering all this for me...what this is basically saying is that Ashley has some bacteria/yeast growing in her gut and that even though we have been eating gluten-free for the Celiac, we have been feeding the bacteria with things like starchy potatoes, sugary ketchup, etc. So, we will strictly follow the SCD, starving the bad bacteria, and anxiously await the lab results that will hopefully reveal the details of what is growing in her stomach. Then we can take medicine to kill it!!! If you're interested, here is the legal/illegal list for this diet... http://www.breakingtheviciouscycle.info/legal/legal_illegal_a-c.htm
THIS IS HUGE! It certainly doesn't mean that Ashley will be feeling better tomorrow. In fact, I had to contain myself today as I read that it can take months to get rid of certain bacterias and yeast. Eating by these rules will definitely speed up this process, but it will be a long road. So, definitely no cooking for the Cramers...but thanks for offers! We will eat not only gluten free, but have Ashley eat the SCD way for quite awhile. I will need to ask more questions, I'm not even certain at this point when/if you can come off of it?
BUT GOD is soo good...this is the first glimmer of hope that we've had since we got the Celiac diagnosis. We knew there had to be something complicating her situation, but after the scopes came back clear at CHOP, it just seemed soo confusing! This even explains her continued stomach pain which makes it hard to consume foods. It confirms what I thought all along, this is still very much a medical issue, not just psychological. I am grateful for the help that we've received at UVA and CHOP, but I can't speak highly enough of our dtr in Richmond! She is brilliant and has been focused on healing Ashley's gut since the beginning. She has had soo many insights, that I can't write them all. I truly believe that she is the agent God will use to bring Ashley's ultimate healing (and my friend Tessa:)
THANK YOU JESUS, we needed a breakthrough... please pray for quick lab results, Ashley's continued ability to consume the shakes, stamina for all of us and another good counseling appt tomorrow!!!
It was your prayers, the prayers of the saints, that brought this about...I have been struggling to even speak encouraging words, yet alone pray them, and your prayers have truly upheld us and opened doors of wisdom!!!
Please don't stop...
with DEEPEST gratitude,
Lori
Poor Ash started off at LabCorp getting more blood drawn. This is for the dtr in Richmond and we are really looking forward to knowing the results...not just your typical blood tests.
MUCUS...yes, mucus! That is the key word for the day! The Lord knew I needed a breakthrough...all this suffering and no real answers. Well, today, as we were going thru the daily ritual of trying to get her shake consumed, she kept coughing up and wiping mucus from her mouth. This has been happening for weeks, really can't remember how long since much of this dilemma blurs together. I always thought that she had a cold (especially when we were in CHOP) or that is just what you get when you drink nasty feeding tube formula. So, I decided to email the UVA dietician and ask her opinion. She said that she had never heard of anyone complain of that before. So, back to researching and the MUCUS issue jumped out at me...
"Very simply, the Specific Carbohydrate Diet, which is grain free and lactose free, restores balance where "bad" intestinal microbes have been "allowed" to overgrow and thus create problems with absoption. When the "bad" microbes are allowed to overgrow, they produce toxins which iritate the lining of the intestines. The intestines, in an attempt to protect itself against the toxins, produce mucus which coat the surface.
Unfortunately, this mucus prevents the normal absorption, creating illnesses by way of "malabsorption." The diet re-establishs "good gut" flora, while starving the problem makers by eliminating the carbohydrates that feed these "bad guys." By starving the "bad" microbes out, the intestines are allowed to rest, heal, and re-establish the normal absorption of nutrients. It is important to note that the diet is often used in conjunction with medications."
Thanks again to my good friend Tessa for deciphering all this for me...what this is basically saying is that Ashley has some bacteria/yeast growing in her gut and that even though we have been eating gluten-free for the Celiac, we have been feeding the bacteria with things like starchy potatoes, sugary ketchup, etc. So, we will strictly follow the SCD, starving the bad bacteria, and anxiously await the lab results that will hopefully reveal the details of what is growing in her stomach. Then we can take medicine to kill it!!! If you're interested, here is the legal/illegal list for this diet... http://www.breakingtheviciouscycle.info/legal/legal_illegal_a-c.htm
THIS IS HUGE! It certainly doesn't mean that Ashley will be feeling better tomorrow. In fact, I had to contain myself today as I read that it can take months to get rid of certain bacterias and yeast. Eating by these rules will definitely speed up this process, but it will be a long road. So, definitely no cooking for the Cramers...but thanks for offers! We will eat not only gluten free, but have Ashley eat the SCD way for quite awhile. I will need to ask more questions, I'm not even certain at this point when/if you can come off of it?
BUT GOD is soo good...this is the first glimmer of hope that we've had since we got the Celiac diagnosis. We knew there had to be something complicating her situation, but after the scopes came back clear at CHOP, it just seemed soo confusing! This even explains her continued stomach pain which makes it hard to consume foods. It confirms what I thought all along, this is still very much a medical issue, not just psychological. I am grateful for the help that we've received at UVA and CHOP, but I can't speak highly enough of our dtr in Richmond! She is brilliant and has been focused on healing Ashley's gut since the beginning. She has had soo many insights, that I can't write them all. I truly believe that she is the agent God will use to bring Ashley's ultimate healing (and my friend Tessa:)
THANK YOU JESUS, we needed a breakthrough... please pray for quick lab results, Ashley's continued ability to consume the shakes, stamina for all of us and another good counseling appt tomorrow!!!
It was your prayers, the prayers of the saints, that brought this about...I have been struggling to even speak encouraging words, yet alone pray them, and your prayers have truly upheld us and opened doors of wisdom!!!
Please don't stop...
with DEEPEST gratitude,
Lori
Monday, February 28, 2011
Monday
I have not wanted to post, as you can tell, these have been some hard days since we have returned! I was afraid to say much...afraid I would regret what I might say! But where else do I have to go?... but to press in to my Jesus...I know that He loves Ashley more than I do!
As we have been walking thru Brittany's epilepsy this past year, the Lord led me to two books, Streams in the Desert and Praying the Scriptures for Your Children. Both of these have prepared me for this trial. As I was looking at my notes on Streams in the Desert, I was reminded of one of my favorite devotionals on Mark 4:35..."As believers, we should not expect to escape the storm. The disciples were obeying His command, yet they encountered the fiercest of storms and were in great danger of being drowned. In their distress, they cried out for Christ's assistance. Christ may delay coming to us during our times of distress, but it is simply so our faith may be tested and strengthened. His purpose is also that our prayers will be more powerful, our desire for deliverance will be greater and when deliverance finally comes we will appreciate it more fully...We will never know our level of genuine faith until it is tested in a fierce storm and that is why our Savior is on board." I guess I was hoping our storm was passing when we returned from CHOP...but isn't it easier to trust God when the sun is shining?
Now medically what we have learned...First of all, I have to say that I am grateful beyond words for my wise friend Tessa. Words can't even express all the time, energy, help and prayers that she has put forth toward Ashley's healing. I truly don't know where we would be without her! So...here we go. Ashley has continued to have much aching in her legs and recently has had a lot of light sensitivity and can only squint when seeing...that is why you have seen her in sun glasses recently, she's not trying to avoid you, well, actually that might be some of it too! Anyway, both are signs of magnesium deficiency and we have started her on a mag supplement and pray that it addresses these issues. We are also anxiously awaiting some stool/urine test results that will reveal more clearly what is going on in her gut, things that the scope can't see...bacteria, yeast, etc. It would be HUGE (not that I'm hoping for more issues) if these tests revealed something because it would partially explain her much delayed recovery. Like I said earlier, when the Celiac was triggered by her Sept. sickness, she was put on clindamycin and who knows what that started in her gut! PLEASE pray that we get the results soon and they provide some answers.
With what limited eating she is doing, we are putting her on the Specific Carbohydrate Diet. Here's a link... http://www.breakingtheviciouscycle.info/ We are still awaiting the arrival of the book, Breaking the Vicious Cycle: Intestinal Health Through Diet by Elaine Gottschall, but understand the gist of it. Basically, it's only putting into your body foods that are easy for you stomach to digest; no complex carbs, grains, etc. It makes sense, if your gut is damaged, why not give it the easiest food to digest? Will comment more on this as we learn more, but we believe it is where we need to be headed.
Was also led by a friend this weekend to read the story of Jordan Rubin, the Maker's Diet guy. He was diagnosed with Crohn's disease, but had a two year, near death, battle to recover. I'm not saying this is the case with Ashley, but I do think that like Jordan's was not a typical Crohn's case, Ashley is not a typical Celiac case. If you want to read more of his fascinating story, here you go...http://www.jordanrubin.com/Jordan/JordansStory/tabid/1225/Default.aspx
Our UVA nurse said today that Ashley is the worst case she's ever seen... now the 3rd time we've heard that...a greater opportunity for God to reveal Himself and be glorified!
So, we still have no NG tube. We submitted our "calorie count" from Fri/Sat/Sun to the UVA dietician last night and she emailed back this morning that she was pleased. No huge breakthroughs yet, but also no further weight loss! Are we still considering it? Yes, because it is not easy for Ashley to intake these calories, but we'll stay on this course at least for now. We also began counseling today and feel that it is a very important part of her healing process, as she has been through much medical trauma and is still not desiring to really talk. Please continue to pray for this part of the healing process as well. Lastly, you can throw into the prayer mix that she would have no neurological complications from the Celiac damage, it is rare, but something we are reading and asking about as we do not want to leave any stone unturned!
Hope that wasn't too much information! My heart has continued to be broken when she constantly moans and says, "it hurts/it's hard!" What I wouldn't give to take away her pain! But, Heather shared a great quote with me tonight from the speaker on the YL Leadership Weekend..."You can't have a testimony without a test!" Praying for WISDOM from above that we would be studying the right materials to pass this test:)
Oh, I have to say thanks soo much to those who have visited recently! Kendall, Paige, the Wiese family, the Keyser family and Heather! It is soo important for Ashley to know that others are thinking about her and that she's not forgotten! If you are healthy and call ahead to make sure it is a good time, we would WELCOME you stopping by! She needs to continue to be around people, just don't be offended if she doesn't say much!
Grateful for your praying without ceasing!!!
I'm done...
Lori
As we have been walking thru Brittany's epilepsy this past year, the Lord led me to two books, Streams in the Desert and Praying the Scriptures for Your Children. Both of these have prepared me for this trial. As I was looking at my notes on Streams in the Desert, I was reminded of one of my favorite devotionals on Mark 4:35..."As believers, we should not expect to escape the storm. The disciples were obeying His command, yet they encountered the fiercest of storms and were in great danger of being drowned. In their distress, they cried out for Christ's assistance. Christ may delay coming to us during our times of distress, but it is simply so our faith may be tested and strengthened. His purpose is also that our prayers will be more powerful, our desire for deliverance will be greater and when deliverance finally comes we will appreciate it more fully...We will never know our level of genuine faith until it is tested in a fierce storm and that is why our Savior is on board." I guess I was hoping our storm was passing when we returned from CHOP...but isn't it easier to trust God when the sun is shining?
Now medically what we have learned...First of all, I have to say that I am grateful beyond words for my wise friend Tessa. Words can't even express all the time, energy, help and prayers that she has put forth toward Ashley's healing. I truly don't know where we would be without her! So...here we go. Ashley has continued to have much aching in her legs and recently has had a lot of light sensitivity and can only squint when seeing...that is why you have seen her in sun glasses recently, she's not trying to avoid you, well, actually that might be some of it too! Anyway, both are signs of magnesium deficiency and we have started her on a mag supplement and pray that it addresses these issues. We are also anxiously awaiting some stool/urine test results that will reveal more clearly what is going on in her gut, things that the scope can't see...bacteria, yeast, etc. It would be HUGE (not that I'm hoping for more issues) if these tests revealed something because it would partially explain her much delayed recovery. Like I said earlier, when the Celiac was triggered by her Sept. sickness, she was put on clindamycin and who knows what that started in her gut! PLEASE pray that we get the results soon and they provide some answers.
With what limited eating she is doing, we are putting her on the Specific Carbohydrate Diet. Here's a link... http://www.breakingtheviciouscycle.info/ We are still awaiting the arrival of the book, Breaking the Vicious Cycle: Intestinal Health Through Diet by Elaine Gottschall, but understand the gist of it. Basically, it's only putting into your body foods that are easy for you stomach to digest; no complex carbs, grains, etc. It makes sense, if your gut is damaged, why not give it the easiest food to digest? Will comment more on this as we learn more, but we believe it is where we need to be headed.
Was also led by a friend this weekend to read the story of Jordan Rubin, the Maker's Diet guy. He was diagnosed with Crohn's disease, but had a two year, near death, battle to recover. I'm not saying this is the case with Ashley, but I do think that like Jordan's was not a typical Crohn's case, Ashley is not a typical Celiac case. If you want to read more of his fascinating story, here you go...http://www.jordanrubin.com/Jordan/JordansStory/tabid/1225/Default.aspx
Our UVA nurse said today that Ashley is the worst case she's ever seen... now the 3rd time we've heard that...a greater opportunity for God to reveal Himself and be glorified!
So, we still have no NG tube. We submitted our "calorie count" from Fri/Sat/Sun to the UVA dietician last night and she emailed back this morning that she was pleased. No huge breakthroughs yet, but also no further weight loss! Are we still considering it? Yes, because it is not easy for Ashley to intake these calories, but we'll stay on this course at least for now. We also began counseling today and feel that it is a very important part of her healing process, as she has been through much medical trauma and is still not desiring to really talk. Please continue to pray for this part of the healing process as well. Lastly, you can throw into the prayer mix that she would have no neurological complications from the Celiac damage, it is rare, but something we are reading and asking about as we do not want to leave any stone unturned!
Hope that wasn't too much information! My heart has continued to be broken when she constantly moans and says, "it hurts/it's hard!" What I wouldn't give to take away her pain! But, Heather shared a great quote with me tonight from the speaker on the YL Leadership Weekend..."You can't have a testimony without a test!" Praying for WISDOM from above that we would be studying the right materials to pass this test:)
Oh, I have to say thanks soo much to those who have visited recently! Kendall, Paige, the Wiese family, the Keyser family and Heather! It is soo important for Ashley to know that others are thinking about her and that she's not forgotten! If you are healthy and call ahead to make sure it is a good time, we would WELCOME you stopping by! She needs to continue to be around people, just don't be offended if she doesn't say much!
Grateful for your praying without ceasing!!!
I'm done...
Lori
Saturday, February 26, 2011
Saturday
Thank you for the many emails and calls...sorry that I haven't posted. Honestly, I haven't wanted to and really find it hard even now to find the right words to say. From the moment we walked in the door Thursday evening until about lunch on Friday, all I could do was cry, uncontrollably at times. The reality that I brought Ashley home just as sick as when we left after spending a week in the hospital, was more than I could bear.
We did talk a bunch with UVA yesterday, I am grateful for our nurse Shelly. We had a bed all lined up for her to stay for the weekend and start the NG tube, but then I got on the phone with dietician. When I asked the details of what would happen, I got the answer that they would just use Elecare, which we are using at home, in higher doses. We then talked thru a detailed eating plan of what she would need to get in her shake and food wise and are giving it a shot this weekend. We have ordered several different kinds of high power supplement drinks to give her a variety because most of this stuff doesn't taste soo hot (which you can pray that our insurance will help us cover). I know many of you think we're crazy, but we made this decision with UVA's approval. We haven't closed that door by any means. She still has a cold and is blowing her nose and coughing often, which will be even more miserable with the tube. We also weighed the fact that she has been thru much medical trauma and asked not to return to the hospital. I'm not saying this will never be the case, but when Brittany asked us in Sept. not to medicate, thru much prayer we had a peace about honoring her request. AND THE LORD HAS BEEN FAITHFUL! It hasn't been easy, as we are really pressing Ashley's ability to intake at this point, but this hasn't been easy for months.
We have a follow-up appt at CHOP on 3/11 and will be heading back to Philly. She will have some other tests at this point as well. Struggling Celiacs can have weak bones, so one of the things they will do is a bone scan to see how much calcium she might need to supplement. They have other things planned and I am looking forward to learning more. This is a very complex disease.
I have to say a heartfelt thanks to my parents at this point. Like Pam, they went above and beyond. They drove up from Florida and served us in any way that they could. They traveled with us to help get Ashley home and totally hooked us up at Whole Foods before they left. We will miss you and pray for safe travels back to Florida. We love you soo much!
So...pray for increased intake, pray that Ashley will lift her head, open her eyes and talk! While you're at it, you can pray that I can lift my head as well...grateful friends!
Lori
We did talk a bunch with UVA yesterday, I am grateful for our nurse Shelly. We had a bed all lined up for her to stay for the weekend and start the NG tube, but then I got on the phone with dietician. When I asked the details of what would happen, I got the answer that they would just use Elecare, which we are using at home, in higher doses. We then talked thru a detailed eating plan of what she would need to get in her shake and food wise and are giving it a shot this weekend. We have ordered several different kinds of high power supplement drinks to give her a variety because most of this stuff doesn't taste soo hot (which you can pray that our insurance will help us cover). I know many of you think we're crazy, but we made this decision with UVA's approval. We haven't closed that door by any means. She still has a cold and is blowing her nose and coughing often, which will be even more miserable with the tube. We also weighed the fact that she has been thru much medical trauma and asked not to return to the hospital. I'm not saying this will never be the case, but when Brittany asked us in Sept. not to medicate, thru much prayer we had a peace about honoring her request. AND THE LORD HAS BEEN FAITHFUL! It hasn't been easy, as we are really pressing Ashley's ability to intake at this point, but this hasn't been easy for months.
We have a follow-up appt at CHOP on 3/11 and will be heading back to Philly. She will have some other tests at this point as well. Struggling Celiacs can have weak bones, so one of the things they will do is a bone scan to see how much calcium she might need to supplement. They have other things planned and I am looking forward to learning more. This is a very complex disease.
I have to say a heartfelt thanks to my parents at this point. Like Pam, they went above and beyond. They drove up from Florida and served us in any way that they could. They traveled with us to help get Ashley home and totally hooked us up at Whole Foods before they left. We will miss you and pray for safe travels back to Florida. We love you soo much!
So...pray for increased intake, pray that Ashley will lift her head, open her eyes and talk! While you're at it, you can pray that I can lift my head as well...grateful friends!
Lori
Wednesday, February 23, 2011
Wednesday night
We are coming home in the morning. We talked with UVA today and will check in with them on Friday to make a feeding tube decision. Too tired to write much more at the moment, needing to pack up, again.
I'm trying to embrace this quote today. It's from a dear friend who is triumphantly enduring her own battle...
"Life is not about waiting for the storm to pass, it's about learning how to dance in the rain."
Was also encouraged today by this song by Casting Crowns, "Praise You In This Storm"
http://www.youtube.com/watch?v=uHdcyue0bSw&feature=related
I AM BEYOND GRATEFUL to those that cleaned my house tonight...I'm in tears and can not even put into words how much it means! Thanks for being Jesus with skin on to us!!!
Thanks for your relentless prayers for Ashley,
Lori
Oh, I think my YLives girl Valerie is going to be on the 11 o'clock news tonight on Channel 19 for going to states! Watch it if you're still up:)
I'm trying to embrace this quote today. It's from a dear friend who is triumphantly enduring her own battle...
"Life is not about waiting for the storm to pass, it's about learning how to dance in the rain."
Was also encouraged today by this song by Casting Crowns, "Praise You In This Storm"
http://www.youtube.com/watch?v=uHdcyue0bSw&feature=related
I AM BEYOND GRATEFUL to those that cleaned my house tonight...I'm in tears and can not even put into words how much it means! Thanks for being Jesus with skin on to us!!!
Thanks for your relentless prayers for Ashley,
Lori
Oh, I think my YLives girl Valerie is going to be on the 11 o'clock news tonight on Channel 19 for going to states! Watch it if you're still up:)
Tuesday, February 22, 2011
One last thought for tonight...
I meant to say this in my earlier post...many of you have asked how you can help once we return home. Your kindness and generosity is overwhelming. I hope this doesn't sound ungrateful, but we do not wish to have meals at this point. Even if you cook gluten-free the possibility of cross contamination is too great! We have bought all new pots, pans, colanders, etc. and really don't want to risk anything with Ashley still being soo sick. If you want to bless us food wise, you could consider getting a gift certificate to a grocery store that carries gluten-free foods. This would be helpful on many levels as this whole process medically hasn't been cheap and neither are gluten-free foods!
Also, as Ashley continues to heal, you are more than welcome to come for short visits if you are not sick. I think it is important for her to see people and continually be encouraged that she will recover and that she's not forgotten. Also, Brittany and Cooper will be more than willing to come to your home and play, once again, if all are well in your house:)
Thanks for asking and for your willingness to come alongside us in such practical ways:)
Also, as Ashley continues to heal, you are more than welcome to come for short visits if you are not sick. I think it is important for her to see people and continually be encouraged that she will recover and that she's not forgotten. Also, Brittany and Cooper will be more than willing to come to your home and play, once again, if all are well in your house:)
Thanks for asking and for your willingness to come alongside us in such practical ways:)
Tuesday
We were released from CHOP late morning and by the time we packed up the hospital room and the hotel room, we felt that we were too exhausted to drive home. We are at my parents house outside of Philadelphia right now. We would like to take a day to breathe tomorrow and then leave for C-ville Thurs. morning, but it will depend on how the night and morning go. If they don't go well, we want to return ASAP to pursue the next step with UVA. We don't want to wait until things get crazy over a weekend and we can't get in touch with the folks we need to, that always seems to happen to us. She is trying SOO hard to eat real food by herself, a HUGE step compared to how we went in to CHOP, but it remains to be seen whether it will be enough. She is still in major stomach pain, typical for this severe Celiac and continues to moan often. This mother's heart is struggling to stay positive as it is beyond description how hard it has been to see her suffer. She has had headaches since Sept. and majorly declining health since early Dec., that's almost 3 months now, I really can't believe it! This week at CHOP, I often stopped and found myself asking...how did we get in this place? how could it have gotten this bad? I was initially shocked with the Celiac diagnosis, but now welcome the day when all that it means is eating gluten free and no longer seeing my child suffer!
So, many of you have asked how I have seen the Lord's hand at work. I clearly have seen it in the 3 things that I mentioned earlier that I was praying for months. I also firmly believe that this trial will bring complete healing to Ashley and others. Personally, I see that the Lord has totally stripped me of all the things that I had pride in...
- a mostly clean house (it has been weeks since it was cleaned)
- my kids accomplishing their school work every day (don't think we have done that for weeks either)
- my college girls Bible study being a rich time for the girls to grow in their faith (haven't even seen these ladies in weeks...miss them dearly)
- participating in YL events (Mike and Brit gave up Wyldlife weekend and all gave up Leadership weekend)
- success in ministry (Wow, the YLives Mentors pulled off an amazing "Love Club" last week without me and are doing a more than fantastic job of holding down the fort! My girl Valerie was going to stay at our house while her mother and step-dad were in Florida for a week...this obviously didn't happen and I am SOO proud of her for being a great Mom and going it alone for a week! I also have to say that I'm totally proud of her for winning Regionals in track and going on to States!)
- a general kind of "holding things together"...schedule, life, home (no need to really comment on this, it is obvious that the bottom has fallen out on this one!)
So, what does that leave me with...Jesus, and nothing of myself! I'm sure that is exactly where I need to be, but it is soo incredibly painful to be in this place as a result of my child's suffering. Am I that stubborn Lord? (actually, please don't answer that!) I've been really pondering this quote today..."He is making you into the follower you always tried to be, but couldn't." I know that is what is happening, but when I am trying to comfort her pain, I can't help but ask...is there any other way Lord?
Brittany reminded ME tonight, as I was crying, that we will still praise God no matter what and will say, "it is well with my soul!" Wow, what a work the Lord has done in her this year, as she has pressed into Him in the midst of her adversity! I can not wait to see what the Lord has in store for her as she has embraced trial and not given up or lost hope!
Please continue to pray for Ashley's stomach pain and achy body to be healed. Please continue to pray for her to be encouraged as she tries soo very hard to eat and drink. And, as much as we wish this was all over, please pray that we wouldn't miss what God has for us in the midst of the struggle!
Grateful,
Lori
"I lift my eyes to the hills, where does my help come from? My help comes from the Lord, the maker of heaven and earth..." Ps 121
So, many of you have asked how I have seen the Lord's hand at work. I clearly have seen it in the 3 things that I mentioned earlier that I was praying for months. I also firmly believe that this trial will bring complete healing to Ashley and others. Personally, I see that the Lord has totally stripped me of all the things that I had pride in...
- a mostly clean house (it has been weeks since it was cleaned)
- my kids accomplishing their school work every day (don't think we have done that for weeks either)
- my college girls Bible study being a rich time for the girls to grow in their faith (haven't even seen these ladies in weeks...miss them dearly)
- participating in YL events (Mike and Brit gave up Wyldlife weekend and all gave up Leadership weekend)
- success in ministry (Wow, the YLives Mentors pulled off an amazing "Love Club" last week without me and are doing a more than fantastic job of holding down the fort! My girl Valerie was going to stay at our house while her mother and step-dad were in Florida for a week...this obviously didn't happen and I am SOO proud of her for being a great Mom and going it alone for a week! I also have to say that I'm totally proud of her for winning Regionals in track and going on to States!)
- a general kind of "holding things together"...schedule, life, home (no need to really comment on this, it is obvious that the bottom has fallen out on this one!)
So, what does that leave me with...Jesus, and nothing of myself! I'm sure that is exactly where I need to be, but it is soo incredibly painful to be in this place as a result of my child's suffering. Am I that stubborn Lord? (actually, please don't answer that!) I've been really pondering this quote today..."He is making you into the follower you always tried to be, but couldn't." I know that is what is happening, but when I am trying to comfort her pain, I can't help but ask...is there any other way Lord?
Brittany reminded ME tonight, as I was crying, that we will still praise God no matter what and will say, "it is well with my soul!" Wow, what a work the Lord has done in her this year, as she has pressed into Him in the midst of her adversity! I can not wait to see what the Lord has in store for her as she has embraced trial and not given up or lost hope!
Please continue to pray for Ashley's stomach pain and achy body to be healed. Please continue to pray for her to be encouraged as she tries soo very hard to eat and drink. And, as much as we wish this was all over, please pray that we wouldn't miss what God has for us in the midst of the struggle!
Grateful,
Lori
"I lift my eyes to the hills, where does my help come from? My help comes from the Lord, the maker of heaven and earth..." Ps 121
Monday, February 21, 2011
Monday
When I left the hospital tonight at 8:30, it was the first time that I had left since Sat. morning at 8:30am...60hrs! My emotions have the best of me right now, so I will be brief. We got the biopsy results back tonight and PRAISE GOD there is nothing else going on in her body! So, you would think I'd be bouncing off the walls? Well, tonight was her worst night yet, her stomach is still causing her discomfort and her body continues to ache. The dtrs said that her Celiac panel (blood count) hasn't gone down at all and her villi are still very bent (decreasing absorption) even though she has been gluten-free since 1/14! And then we heard the same words as we heard in Richmond, she is a pretty bad case. Some people bounce back within 2 weeks to a month, but her body is obviously still trying to "reboot"! I talked to a woman today whose daughter experienced many mental effects from her Celiac disease and it was a long, hard transition. I believe that Ashley is there as well, she is soo sad, depressed and sick and tired of being sick! Tonight, thru tears she said, "Everything still hurts!" and then asked, "Why is this soo hard?" Ash, I have no answers...
So, on one hand, we got what we came for...the best dtrs looking at her and making sure that nothing else is going on. On the other hand, we are in the same place as we were when we arrived...feeling terribly sick, with no immediate end in sight! Yes, we are still evaluating the feeding tube. She is trying soo hard to eat, but we're not sure if it is enough. But it makes no sense to start that in Philly.
Will keep you posted tomorrow as the day progresses and let you know of our travel plans.
Lori
So, on one hand, we got what we came for...the best dtrs looking at her and making sure that nothing else is going on. On the other hand, we are in the same place as we were when we arrived...feeling terribly sick, with no immediate end in sight! Yes, we are still evaluating the feeding tube. She is trying soo hard to eat, but we're not sure if it is enough. But it makes no sense to start that in Philly.
Will keep you posted tomorrow as the day progresses and let you know of our travel plans.
Lori
Monday morning
My prayer for today.... JUST GIVE ME JESUS!
http://www.youtube.com/watch?v=-8i460c3ejw&feature=related
http://www.youtube.com/watch?v=-N3KPA9ltQE&feature=related
Enjoy!
College girls bible study, this makes me think of you...know that I miss you incredibly!!!
http://www.youtube.com/watch?v=-8i460c3ejw&feature=related
http://www.youtube.com/watch?v=-N3KPA9ltQE&feature=related
Enjoy!
College girls bible study, this makes me think of you...know that I miss you incredibly!!!
Sunday, February 20, 2011
Sunday
Well, if I had written this post at various times during the day, each time it would have been different. I woke up this morning, very encouraged. Shared with Ashley, John 8:32, 34-36, "I shall know the truth and the truth shall set me free...So if the Son sets me free, I shall be free indeed!" I told her that we would cling to the TRUTH today...that Christ died for her, that God deeply loves her and that the Lord is bringing about His healing of her stomach...that this Truth will set her free from her fear of food hurting her! Then, breakfast went horribly! It is partly because eating gluten and dairy free in a hospital is EXTREMELY challenging with the limited selection. Grits and fruit were about the only option and I thought that the grits tasted like paste! Then I shared with her the "Team Hoyt" video...
http://www.youtube.com/watch?v=sdA3Equ1I3s&feature=related We talked about how we all have things in our lives to overcome and we CAN overcome them with Christ! I love that this video ends with the verse that we've been having her repeat...Phil. 4:13! We then watched some worship videos on Youtube...a different kind of church today!
Lunch went fairly well and then Ashley and I actually had a good nap together in her hospital bed. Last night at 2 am we got a new neighbor...a sick little baby who screamed for about an hour to let us know that he was next door! Then tonight went downhill. Her cold started getting worse and her throat is really sore and she's having trouble breathing thru her nose. Normally, no big deal, but for her, anything that further inhibits her from eating is not helpful. PLEASE continue to pray that her cold (and Brittany's) would go away! We used that really cool sucking thing that you see in hospitals and got alot out, but she was still pretty miserable until she moaned herself to sleep about an hour ago...thus, not great intake tonight. I guess we did ok on fluids though because they are not hooking her up to IV's tonight, although they still want to keep the port in her hand. She can not wait to have that out!
Mike, Pam and Cooper and Brittany got to go out to West Chester today to see our old friends the Abdala's. I didn't get the full report, but I think it was good for them to have a change of pace, other then the traffic they got caught in! By the way, that's why we're not commuting from my parents house. It has taken them well over an hour and a half at times to get to CHOP or home due to traffic. It would make a daily commute virtually impossible! Mike and I take turns staying at the hospital and Pam has been BEYOND amazing at helping entertain Brit and Coop during the day, purchasing other food options for Ash, or getting on the computer to check if certain meds are gluten free! I CAN NOT express how grateful I am for all that she has done for us for well over a week! She leaves tomorrow to take a train back to C-ville and get her car and drive home to NC. To say she will be missed would be an understatement! James, thanks again for loaning her to us...she's an amazing woman! As the rest of the gang was gone, I had a sweet visit with my parents this afternoon. Mom, thanks for doing everyone's laundry!
So, tomorrow we will continue to work on eating as our main focus and trying to find foods that interest her. She honestly can't remember eating anything that she likes because it has been soo long since food felt good. I should also mention at this point because it might be helpful to others, that we have learned here that "in a recent survey of the Celiac Spruce Assoc., over half of the members reported having additional food allergies to foods such as milk, soy, nuts, yeast, eggs, corn and fructose." Often, these are just in the initial phase of discovering Celiac disease and can be re-introduced later. Until we get the biopsies back, we are doing our best to avoid all of them...very challenging. We just don't want to take any chances of causing her any more unnecessary pain. When they come back, one will tell if there are any allergens present and then we would move forward with allergy testing to know what her specific sensitivities are at this point.
Beth Cramer, once again, encouraged us with Is. 55:12..."You will go out in JOY and be led forth in PEACE, the mountains and hills will burst into song before you!" I've already begun to pray that this is how Ashley will leave the hospital. The dtrs clearly told her that the NG tube was next and she really tried as hard as she could with her cold and the food choices today. She kept breaking my heart by saying, "it's soo hard", but continued to persevere. Please also pray for her spirits. I am not exaggerating when I say this... due to this long road lasting many months, she's at the point where she would prefer to just keep her eyes closed and pretend she's asleep, not look you in the eye, not speak in complete sentences and certainly not laugh or smile. We miss our Ashley Mae Catherine...please continue to pray that the Lord will restore her body, mind and spirit!
Ps 34:18 "The Lord is close to the brokenhearted and saves those who are crushed in spirit!"
Beyond grateful for your continued prayers,
Lori
PS- Lori Ann, thanks for your post. I would love to talk with you more!!!
"There is no situation so chaotic that God cannot from that situation create something that is surpassingly good. He did it at the creation. He did it at the cross. He is doing it today." ... Bishop Handley Moule
http://www.youtube.com/watch?v=sdA3Equ1I3s&feature=related We talked about how we all have things in our lives to overcome and we CAN overcome them with Christ! I love that this video ends with the verse that we've been having her repeat...Phil. 4:13! We then watched some worship videos on Youtube...a different kind of church today!
Lunch went fairly well and then Ashley and I actually had a good nap together in her hospital bed. Last night at 2 am we got a new neighbor...a sick little baby who screamed for about an hour to let us know that he was next door! Then tonight went downhill. Her cold started getting worse and her throat is really sore and she's having trouble breathing thru her nose. Normally, no big deal, but for her, anything that further inhibits her from eating is not helpful. PLEASE continue to pray that her cold (and Brittany's) would go away! We used that really cool sucking thing that you see in hospitals and got alot out, but she was still pretty miserable until she moaned herself to sleep about an hour ago...thus, not great intake tonight. I guess we did ok on fluids though because they are not hooking her up to IV's tonight, although they still want to keep the port in her hand. She can not wait to have that out!
Mike, Pam and Cooper and Brittany got to go out to West Chester today to see our old friends the Abdala's. I didn't get the full report, but I think it was good for them to have a change of pace, other then the traffic they got caught in! By the way, that's why we're not commuting from my parents house. It has taken them well over an hour and a half at times to get to CHOP or home due to traffic. It would make a daily commute virtually impossible! Mike and I take turns staying at the hospital and Pam has been BEYOND amazing at helping entertain Brit and Coop during the day, purchasing other food options for Ash, or getting on the computer to check if certain meds are gluten free! I CAN NOT express how grateful I am for all that she has done for us for well over a week! She leaves tomorrow to take a train back to C-ville and get her car and drive home to NC. To say she will be missed would be an understatement! James, thanks again for loaning her to us...she's an amazing woman! As the rest of the gang was gone, I had a sweet visit with my parents this afternoon. Mom, thanks for doing everyone's laundry!
So, tomorrow we will continue to work on eating as our main focus and trying to find foods that interest her. She honestly can't remember eating anything that she likes because it has been soo long since food felt good. I should also mention at this point because it might be helpful to others, that we have learned here that "in a recent survey of the Celiac Spruce Assoc., over half of the members reported having additional food allergies to foods such as milk, soy, nuts, yeast, eggs, corn and fructose." Often, these are just in the initial phase of discovering Celiac disease and can be re-introduced later. Until we get the biopsies back, we are doing our best to avoid all of them...very challenging. We just don't want to take any chances of causing her any more unnecessary pain. When they come back, one will tell if there are any allergens present and then we would move forward with allergy testing to know what her specific sensitivities are at this point.
Beth Cramer, once again, encouraged us with Is. 55:12..."You will go out in JOY and be led forth in PEACE, the mountains and hills will burst into song before you!" I've already begun to pray that this is how Ashley will leave the hospital. The dtrs clearly told her that the NG tube was next and she really tried as hard as she could with her cold and the food choices today. She kept breaking my heart by saying, "it's soo hard", but continued to persevere. Please also pray for her spirits. I am not exaggerating when I say this... due to this long road lasting many months, she's at the point where she would prefer to just keep her eyes closed and pretend she's asleep, not look you in the eye, not speak in complete sentences and certainly not laugh or smile. We miss our Ashley Mae Catherine...please continue to pray that the Lord will restore her body, mind and spirit!
Ps 34:18 "The Lord is close to the brokenhearted and saves those who are crushed in spirit!"
Beyond grateful for your continued prayers,
Lori
PS- Lori Ann, thanks for your post. I would love to talk with you more!!!
"There is no situation so chaotic that God cannot from that situation create something that is surpassingly good. He did it at the creation. He did it at the cross. He is doing it today." ... Bishop Handley Moule
Saturday, February 19, 2011
One more request tonight...
Ashley has seemed to start getting a cold today, mainly in her throat. There are several really sick kids on our hall with "contact precautions." Brittany has also started developing quite a cold as well. PLEASE pray for protection from illness for our entire family! Grateful!
Good night!!!
Good night!!!
Saturday
Ashley is truly having a day of rest and recovery. The last couple of months have been hard, the last couple of weeks have been intense and the last couple of days have been exhausting...I'm soo glad that she is finally able to get some rest today and not have to endure any medical treatments! She is still very uncomfortable from the scopes and if any of you have had them done, you can understand. She is sore in her throat and uncomfortable in her belly, which is to be expected. The nurse just told me that even though the dtrs try to be delicate with the scope, they aren't really nice to your insides to see and get what they're looking for. Thus, we're not doing great on intake today. Until we get the labs back, know that this is our number one prayer request...eating and drinking! We have told Ashley that we will no longer feed her, if you didn't know, that's what we had to do the week before we came to keep her going. It has to be her decision whether to leave this hospital on a feeding tube or feeding herself. That's why praying for her "mind" to be filled with the TRUTH and not lies is soo important! Food has legitimately hurt her in the past and we have to show her that it is no longer her enemy...but will restore her strength!
Lots of reflecting going on for me as I finally have a little space to breathe. A friend recently told me, be careful what you pray for...well, for months going into this fall and thru the fall, I had been intensely praying these 3 things for our family and YLives...1-that we would love one another DEEPLY, 2- that we would HUNGER for His Word, 3- that our lives/ministry would give Him GLORY! As I sit here, watching my precious baby sleep, I realize that the first two have certainly been fulfilled in all of this, as well as number 3...but I'm still waiting on the Lord to fully bring that to fruition with Ashley's restoration of health! God's ways are not always our ways, but He is ALWAYS carrying out His perfect plan for our lives!
Thanks for many of you who prayed through her scoping yesterday. We felt it! Mike and I walked the halls outside the procedure room and prayed and quoted His promises in His Word. Not to embarrass him, but my Dad said that he prayed for the entire hour...brings tears to my eyes Dad, for He is doing a work in all of us and your precious Ashley will be healed!
A verse from Beth Cramer that we will stand on...Jer. 30:17 "But I will restore you to health and heal your wounds, declares the Lord."
Thanks for continuing to battle for Ashley Mae Catherine:)
Lots of reflecting going on for me as I finally have a little space to breathe. A friend recently told me, be careful what you pray for...well, for months going into this fall and thru the fall, I had been intensely praying these 3 things for our family and YLives...1-that we would love one another DEEPLY, 2- that we would HUNGER for His Word, 3- that our lives/ministry would give Him GLORY! As I sit here, watching my precious baby sleep, I realize that the first two have certainly been fulfilled in all of this, as well as number 3...but I'm still waiting on the Lord to fully bring that to fruition with Ashley's restoration of health! God's ways are not always our ways, but He is ALWAYS carrying out His perfect plan for our lives!
Thanks for many of you who prayed through her scoping yesterday. We felt it! Mike and I walked the halls outside the procedure room and prayed and quoted His promises in His Word. Not to embarrass him, but my Dad said that he prayed for the entire hour...brings tears to my eyes Dad, for He is doing a work in all of us and your precious Ashley will be healed!
A verse from Beth Cramer that we will stand on...Jer. 30:17 "But I will restore you to health and heal your wounds, declares the Lord."
Thanks for continuing to battle for Ashley Mae Catherine:)
Friday, February 18, 2011
Friday
What a day....Ashley is amazing! A very INTENSE morning of "cleaning out" and then we went to the procedure around 2. It lasted until about 3:30. Then she had quite a time coming out of the anesthesia. We had to have anesthesia come back around 6:30 (3 hrs!) to check on her and help us wake her up. Then finally back to the room for her first shower and tucked sweetly into bed. She will be put back on an IV tonight as all the dtrs feel that there has been enough trauma for one day! We will try to start foods and liquids again tomorrow, PLEASE continue to constantly pray for her desire to eat and drink and that her mind will be filled with the encouragement and HOPE of getting better! We will need to wait a couple of days for the actual biopsy results from today, but they didn't see anything alarming. Thank you Jesus!
That's all for tonight...it has been an exhausting day and we are glad to have it behind us!
Oh, I can't end without saying THANK YOU JESUS for our friend Libby's Pet Scan that showed NO more cancer! What a mighty God we serve, we rejoice with you Ryder's:)
That's all for tonight...it has been an exhausting day and we are glad to have it behind us!
Oh, I can't end without saying THANK YOU JESUS for our friend Libby's Pet Scan that showed NO more cancer! What a mighty God we serve, we rejoice with you Ryder's:)
Backstory
Some of you are jumping in right now, so I am going to do the best I can to give you the backstory. As time allows, I will probably reflect upon what we have learned along the way. I firmly believe that God will use this all to not only heal Ashley, but many others. Maybe it will be others who suffer from Celiac symptoms and don't even know it, maybe it will be those that suffer from rheumatoid arthritis or ulcerative colitis, who don't even know that going gluten-free will greatly reduce their pain. Many of these auto immune diseases travel together and are similar and can be greatly helped by being gluten free. For a long time, Mike's sister Pam has bugged Mike to get tested for Celiac (it's hereditary if I haven't said that yet) and he has been resistant. Well, as I described Mike's symptoms to the specialist in Richmond, her exact words were, "He has Celiac!" We have learned that is a "spectrum disorder" and you don't have to be as sick as Ashley to be suffering from the destructive power of gluten on your intestines, you actually might not have any symptoms! So, when the dust settles, Mike is next to undergo the scope and Ashley might have just saved him from dying of colon cancer or another intestinal disease by forcing his switch to gluten-free eating. By the way, if it turns out like we think it will, all those you eat out and travel with Mike will have to help keep him in line when he is eating out of the house:)
I will try to summarize Ashley's situation as best as I can. In Sept. she was really sick with a swollen lymph node under her right arm. The verdict is still out between the dtrs whether it was viral or bacterial, but we ended up with UVA Infectious Disease on several antibiotics, finally on clindamycin. After that time, she complained of headaches all fall and had some small weight loss, but kept plugging along. We have since learned that you are born with Celiac and it is triggered or "turned on" by stress, pregnancy, or extreme illness, as in Ashley's case. The dtrs wanted to put her on a chronic headache medicine amitriptyline, but I resisted, feeling that something bigger was going on. In December, things started to really go down hill. She had diarrhea (really seepage) for about 3/4 weeks which at first my dtr thought was a virus. Then we INSISTED on testing. He tested stool for C-diff and other bacteria and all came up negative. The diarrhea stopped and it then it was Christmas. After Christmas, I INSISTED again this this was not right. She was pale and weak and now rapidly losing weight. We then did blood tests for many things (lyme, anemia, leukemia, mono) and FINALLY got the Celiac diagnosis on Jan. 14th. We have been a totally gluten-free household since that date...even bought new pots/pans/colanders, etc. She also had two x-rays that showed she was fully impacted and they put her on a TON of Miralax. Even though we have been gluten free since 1/14, she continued to decline. They had her on Pediasures to sustain her, she has lost 14 pds since 12/15. At one point, they had her drinking 3 Pediasures a day and I thought I was watching her die. I kept reading everything I could and realized thru reading and Mike's sister that many Celiacs initially can't handle dairy and took her off the Pediasures and talked with several people and got her on Elecare. She continued to decline and starting eating just bites of food with the Elecare shakes. She has a very real association between food and stomach pain for many months and it has obviously caused her to not want to eat. Thru a wonderfully, helpful dear friend Tessa, we found an incredible specialist in Richmond. After spending hours with her, we really understood alot more and started to have Ashley use many helpful supplements to heal her "gut flora" as they call it, which was soo damaged. I firmly believe that this dtr could have helped Ashley entirely, but I think we got to her too late and Ashley was just too sick. We will continue to follow her plan and see her again after Ashley is stabilized. The specialist feels that we will not only restore Ashley to her original health, but even stronger because she believes that Ashley has been deficient in some nutrients for awhile. (more on that later, don't let me forget to come back to it, it is incredibly informative) We then did a round of steroids to reduce inflammation and increase appetite, but it didn't work. She also went in to the hospital for a day to receive IV fluids without much improvement. We were at the end of our rope and not feeling like we had any options. Then God did, what God always does, opened a door. Our dear old friend in West Chester, Jackie, knew of a woman who has sons with health issues, who had worked with a Dr. Verma at CHOP...a mom with Celiac kids of her own and a world renowned Celiac expert. Within 24 hrs I was sending her Ashley's records and emailing back and forth. We emailed for about 2 hrs Tuesday night and she had never even met Ashley! She was extremely helpful and we decided to get in the car first thing Wed. morning and drive to CHOP and enter thru the ER...if we made an appt we would have waited until a week from today and that was not an option!
So, here we are...my dear sweet Ashley has been thru soo much and I am soo proud of her, she is such a fighter!!! Gotta run...more later!
Is. 46:4 "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."
I will try to summarize Ashley's situation as best as I can. In Sept. she was really sick with a swollen lymph node under her right arm. The verdict is still out between the dtrs whether it was viral or bacterial, but we ended up with UVA Infectious Disease on several antibiotics, finally on clindamycin. After that time, she complained of headaches all fall and had some small weight loss, but kept plugging along. We have since learned that you are born with Celiac and it is triggered or "turned on" by stress, pregnancy, or extreme illness, as in Ashley's case. The dtrs wanted to put her on a chronic headache medicine amitriptyline, but I resisted, feeling that something bigger was going on. In December, things started to really go down hill. She had diarrhea (really seepage) for about 3/4 weeks which at first my dtr thought was a virus. Then we INSISTED on testing. He tested stool for C-diff and other bacteria and all came up negative. The diarrhea stopped and it then it was Christmas. After Christmas, I INSISTED again this this was not right. She was pale and weak and now rapidly losing weight. We then did blood tests for many things (lyme, anemia, leukemia, mono) and FINALLY got the Celiac diagnosis on Jan. 14th. We have been a totally gluten-free household since that date...even bought new pots/pans/colanders, etc. She also had two x-rays that showed she was fully impacted and they put her on a TON of Miralax. Even though we have been gluten free since 1/14, she continued to decline. They had her on Pediasures to sustain her, she has lost 14 pds since 12/15. At one point, they had her drinking 3 Pediasures a day and I thought I was watching her die. I kept reading everything I could and realized thru reading and Mike's sister that many Celiacs initially can't handle dairy and took her off the Pediasures and talked with several people and got her on Elecare. She continued to decline and starting eating just bites of food with the Elecare shakes. She has a very real association between food and stomach pain for many months and it has obviously caused her to not want to eat. Thru a wonderfully, helpful dear friend Tessa, we found an incredible specialist in Richmond. After spending hours with her, we really understood alot more and started to have Ashley use many helpful supplements to heal her "gut flora" as they call it, which was soo damaged. I firmly believe that this dtr could have helped Ashley entirely, but I think we got to her too late and Ashley was just too sick. We will continue to follow her plan and see her again after Ashley is stabilized. The specialist feels that we will not only restore Ashley to her original health, but even stronger because she believes that Ashley has been deficient in some nutrients for awhile. (more on that later, don't let me forget to come back to it, it is incredibly informative) We then did a round of steroids to reduce inflammation and increase appetite, but it didn't work. She also went in to the hospital for a day to receive IV fluids without much improvement. We were at the end of our rope and not feeling like we had any options. Then God did, what God always does, opened a door. Our dear old friend in West Chester, Jackie, knew of a woman who has sons with health issues, who had worked with a Dr. Verma at CHOP...a mom with Celiac kids of her own and a world renowned Celiac expert. Within 24 hrs I was sending her Ashley's records and emailing back and forth. We emailed for about 2 hrs Tuesday night and she had never even met Ashley! She was extremely helpful and we decided to get in the car first thing Wed. morning and drive to CHOP and enter thru the ER...if we made an appt we would have waited until a week from today and that was not an option!
So, here we are...my dear sweet Ashley has been thru soo much and I am soo proud of her, she is such a fighter!!! Gotta run...more later!
Is. 46:4 "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."
Thursday, February 17, 2011
thurs/fri
Please pray for no complications with either scope tomorrow, she will obviously be put under and she is very weak...that God would guide the hand of the dtrs administering the scopes...for quick answers and wisdom on how to proceed. After she comes out of recovery from the scopes, she will be allowed to finally eat again...PRAY that she would desire to and be able to. Other than IV's, she hasn't had a formula shake since Wed. morning. Please continue to pray for her mind...that it would be FILLED with the TRUTH of the Holy Spirit as we continue to speak LIFE, ENCOURAGEMENT and HOPE to her. CHOP's slogan, on every billboard around Philly..."Hope lives here!"
Ps 57 "Have mercy on me, O God, have mercy on me, for in you my soul takes refuge. I will take refuge in the shadow of your wings until the disaster has passed."
Ps 57 "Have mercy on me, O God, have mercy on me, for in you my soul takes refuge. I will take refuge in the shadow of your wings until the disaster has passed."
February 17, 2011
Dear Friends,
We are BEYOND grateful for your prayers and support in the midst of this long trial! I promised that I would never blog because I feel it's easy to get sucked into reading blogs all day and spend hours away from doing what I should be doing! But this situation has caused me to change my aversion to blogs, at this for the moment! My plan is to give more of the backstory, as time allows, but for now will just give you a current update since many have been emailing and calling today! The ride up was intense yesterday...she has pretty much resisted all foods and fluids, so she was very weak. We stopped several times to hydrate her just to get her here. We got to the ER around 3:30 and went back around 4:30, not bad at all considering the hospital is above 100% capacity and there were 75 people waiting in the ER! She looked pathetic and that definitely helped to expediate the process. They almost immediately drew blood and pushed IV fluids. I had already faxed her records from the pediatrician and UVA and been on email with the GI/Celiac dtr for about 2 hrs Tuesday night, she they were expecting us...we just had to wait for a bed. We got up to the room around 10 and settled her in and filled in the resident on some details. I then went to the hotel to sleep and Mike stayed her. God has put sooooo many people in our lives to help, we can't even begin to express our gratitude. Mike's sister had already come to help us in C-ville and then decided to travel with us to Philly to help me with Ashley in the car and to help with the kids when we got here because my parents are still traveling up from Florida. She is a saint! (and we thank her husband James for lending her to us for soo long!) Also, a dear old friend from West Chester set us up in a hotel close to hospital for 3 nights. It was such a blessing while I was looking at the list of hotels, totally in tears and overwhelmed because I didn't know where to even being looking! These have been sweet reminders of why we need the body of Christ and of God's hand upon Ashley through each step. This morning we met with the team. The plan is to "clear her out" today and do an endoscopy and colonoscopy at the same time tomorrow so they only have to put her under once. So, no food today either. Please pray for her strength as she is soo weak and that all would go smoothly with the procedures tomorrow. Please also pray for some answers to her ongoing stomach pain and wisdom for the dtrs on how to proceed. She is definitely somewhat confused, scared and overwhelmed. We are continually speaking life and encouragement to her, but please continue to pray for her mind, that it will be filled with TRUTH and the Holy Spirit. She has endured feeling soo sick for soo long and has been through soo much medical trauma that she needs to continually be reminded that Christ is fighting this battle for her and that she WILL get well!
We will email more as we know more. I also will email more of the history because we firmly believe that God is not only going to bring healing to Ashley thru this but also to many who struggle with Celiac and other auto immune disorders. We have learned MUCH and desire to use it for the Glory of God to help those who are as confused and discouraged as we have been!!!
Thank you to our faithful prayer warriors...more to come,
Lori
We are BEYOND grateful for your prayers and support in the midst of this long trial! I promised that I would never blog because I feel it's easy to get sucked into reading blogs all day and spend hours away from doing what I should be doing! But this situation has caused me to change my aversion to blogs, at this for the moment! My plan is to give more of the backstory, as time allows, but for now will just give you a current update since many have been emailing and calling today! The ride up was intense yesterday...she has pretty much resisted all foods and fluids, so she was very weak. We stopped several times to hydrate her just to get her here. We got to the ER around 3:30 and went back around 4:30, not bad at all considering the hospital is above 100% capacity and there were 75 people waiting in the ER! She looked pathetic and that definitely helped to expediate the process. They almost immediately drew blood and pushed IV fluids. I had already faxed her records from the pediatrician and UVA and been on email with the GI/Celiac dtr for about 2 hrs Tuesday night, she they were expecting us...we just had to wait for a bed. We got up to the room around 10 and settled her in and filled in the resident on some details. I then went to the hotel to sleep and Mike stayed her. God has put sooooo many people in our lives to help, we can't even begin to express our gratitude. Mike's sister had already come to help us in C-ville and then decided to travel with us to Philly to help me with Ashley in the car and to help with the kids when we got here because my parents are still traveling up from Florida. She is a saint! (and we thank her husband James for lending her to us for soo long!) Also, a dear old friend from West Chester set us up in a hotel close to hospital for 3 nights. It was such a blessing while I was looking at the list of hotels, totally in tears and overwhelmed because I didn't know where to even being looking! These have been sweet reminders of why we need the body of Christ and of God's hand upon Ashley through each step. This morning we met with the team. The plan is to "clear her out" today and do an endoscopy and colonoscopy at the same time tomorrow so they only have to put her under once. So, no food today either. Please pray for her strength as she is soo weak and that all would go smoothly with the procedures tomorrow. Please also pray for some answers to her ongoing stomach pain and wisdom for the dtrs on how to proceed. She is definitely somewhat confused, scared and overwhelmed. We are continually speaking life and encouragement to her, but please continue to pray for her mind, that it will be filled with TRUTH and the Holy Spirit. She has endured feeling soo sick for soo long and has been through soo much medical trauma that she needs to continually be reminded that Christ is fighting this battle for her and that she WILL get well!
We will email more as we know more. I also will email more of the history because we firmly believe that God is not only going to bring healing to Ashley thru this but also to many who struggle with Celiac and other auto immune disorders. We have learned MUCH and desire to use it for the Glory of God to help those who are as confused and discouraged as we have been!!!
Thank you to our faithful prayer warriors...more to come,
Lori
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