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
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