Waiting for this scope is so hard! I am trying to be patient, but I just cant get a read on whether or not we are on the up or not. I am relying on this scope to tell me things are alright. Lucy still seems to feel just "Blah" most of the time. We've been staying low key around here since Lucy just hasn't felt up to too much excitement. Shes still dealing with some nasty diapers which makes her very uncomfortable. She also still has a hard time taking full feedings so I don't think we are making up for all the weight loss of last month.
The kids are super excited for Halloween on Saturday. They usually trick or treat just a little bit, then run back home to hand out candy to the other kids and open their own presents. Yes, "presents" is right. Last year we started buying the kids each one gift that they get once they have trick or treated. Neither kid can eat candy like all the others, so for them a neat little toy helps soften the disappointment of not being able to gorge on candy.
I will be sure to post up pictures of our Halloween fun!
Thursday, October 29, 2009
Monday, October 26, 2009
Its a date!
We are still operating under a Code Brown around here(see post below if you don't get that reference). No changes there.
The good news is that after leaving a slightly irate message to the GI this morning we got a call from the hospital to set up her scope. Our date is for next Friday the 6th! Finally!
To be honest, I am thinking that the issue all along has been the lollipops and at this point Lucy's body is just trying to get back to normal digestion after the inflammation disappears. I could be wrong, I could be right, and the scope will determine which it is. But at this point, my gut feeling is that we will not get lollipops back and that at any day now Lu will start to normalize. At least, this is my hope!
The good news is that after leaving a slightly irate message to the GI this morning we got a call from the hospital to set up her scope. Our date is for next Friday the 6th! Finally!
To be honest, I am thinking that the issue all along has been the lollipops and at this point Lucy's body is just trying to get back to normal digestion after the inflammation disappears. I could be wrong, I could be right, and the scope will determine which it is. But at this point, my gut feeling is that we will not get lollipops back and that at any day now Lu will start to normalize. At least, this is my hope!
Sunday, October 25, 2009
Code Brown
We are still riding this roller coaster around here. Things look good for a day or two and then get worse, then get a little better, then get way worse, and so on and so on.
Lucy got super constipated last week and for the last two days shes had pure water diarrhea that leaks all over the place. Ugh, yeah that would be a Code Brown. Her butt hurts so bad she winces every time she has to sit down.
Fortunately by this evening she had stopped going so frequently and really perked up in the energy department, so that is leaving me optimistic tomorrow will be better.
I STILL have not gotten a single call about scheduling her scope. Our allergist gave me license to be a huge b**** until the hospital gets it on schedule and quite frankly with all the stress going on in my life right now I am inclined to do so just for the sake of letting my frustrations out! lol
Thats about all I can update on for now! Thanks for checking on Lu!
Lucy got super constipated last week and for the last two days shes had pure water diarrhea that leaks all over the place. Ugh, yeah that would be a Code Brown. Her butt hurts so bad she winces every time she has to sit down.
Fortunately by this evening she had stopped going so frequently and really perked up in the energy department, so that is leaving me optimistic tomorrow will be better.
I STILL have not gotten a single call about scheduling her scope. Our allergist gave me license to be a huge b**** until the hospital gets it on schedule and quite frankly with all the stress going on in my life right now I am inclined to do so just for the sake of letting my frustrations out! lol
Thats about all I can update on for now! Thanks for checking on Lu!
Wednesday, October 21, 2009
Crazy
Last night Zachary was watching TV on our bed while Big Zach was in the shower. When Zach came out Zachary was watching Catholic mass. Zach said "Whatcha watching? Why are you watching that?" Zachary's answer was simple- "Its the word of GOD, dad. Because this is the word of God!" And he was adamant that he finish watching it too!
Lucy is hanging in there alright. After my last post I went to bed and Lucy slept through the whole night! Yay! And then did it again last night too! Double yay!
I started trying to increase Lucy's feedings to test the waters since the lollipops have been out for a week now. So far no diarrhea after eating, like before, but she doesn't seem to be feeling well even still. She just lays around most of the day. Her lips continue to flare and bleed, but not as badly as Sunday's mess.
We took the kids shopping for Halloween costumes today. Zachary picked himself out a "scary" skeleton and Lucy spent the entire time asking if we could go home. Eventually I picked up a fairy princess costume that I am sure if she were feeling right, she would love.
I am hopeful that the fact shes not having "the Big D" after each of her larger feedings today is a sign that the culprit behind this entire fiasco has all along been the lollipops. Its heartbreaking to permanently lose them, they were her first and only food she's had for more than a few days. However, losing lollipops pales in comparison to losing her formula.
At this point I cant really tell if we are on the up and up or not. I stare at her all day long waiting for something to happen, scrutinizing over every ounce of formula and over every wince or whine she makes. I feel like I am losing my mind. I don't even remember what normal was like to compare all this to anymore. Its so confusing and frustrating.
I spoke with both the allergist and GI doc. We expect to hear from the hospital today or tomorrow about a scope. Both doctors remain in agreement that we need a scope since its been 2 years since our last one, regardless of the lollipop situation.
Lucy is hanging in there alright. After my last post I went to bed and Lucy slept through the whole night! Yay! And then did it again last night too! Double yay!
I started trying to increase Lucy's feedings to test the waters since the lollipops have been out for a week now. So far no diarrhea after eating, like before, but she doesn't seem to be feeling well even still. She just lays around most of the day. Her lips continue to flare and bleed, but not as badly as Sunday's mess.
We took the kids shopping for Halloween costumes today. Zachary picked himself out a "scary" skeleton and Lucy spent the entire time asking if we could go home. Eventually I picked up a fairy princess costume that I am sure if she were feeling right, she would love.
I am hopeful that the fact shes not having "the Big D" after each of her larger feedings today is a sign that the culprit behind this entire fiasco has all along been the lollipops. Its heartbreaking to permanently lose them, they were her first and only food she's had for more than a few days. However, losing lollipops pales in comparison to losing her formula.
At this point I cant really tell if we are on the up and up or not. I stare at her all day long waiting for something to happen, scrutinizing over every ounce of formula and over every wince or whine she makes. I feel like I am losing my mind. I don't even remember what normal was like to compare all this to anymore. Its so confusing and frustrating.
I spoke with both the allergist and GI doc. We expect to hear from the hospital today or tomorrow about a scope. Both doctors remain in agreement that we need a scope since its been 2 years since our last one, regardless of the lollipop situation.
Monday, October 19, 2009
Bah!
That's about all I can say when asked "How's things with Lucy?"
Its frustrating. Shes becoming an absolute rail and just doesn't even act like her usual spunky self these days. I want to help her but I don't even know which way is up anymore. Should I push her to eat more so that she doesn't waste away, or will that only put her in further pain and make her condition worse?
Her lips reached an all-time AWFUL yesterday when she woke up from her nap . Her cheeks, mouth and hands were covered in blood, and her pillow case had soaked a 3 inch spot straight through to the pillow. She has deep dark circles around her eyes and little red spots on her cheeks. Lucy also hasn't slept through the night in so long I cant remember. Some nights shes up once, others its 4 or more times. Friday night she had a diaper blowout around 11pm, and is now constipated- which is probably not good.
AND, the hospital STILL hasn't called to set up her scope!!! This is only going to further delay treatment for her!!! Ahhhhh! Sitting back and doing nothing while my daughter is clearly not doing well is just not something I am comfortable with. Lucy hasn't been in a boat this bad since she was a newborn, and I felt helpless back then too.
I am going to see if I can get in touch with at least ONE of our specialists tomorrow just to update the situation and hopefully get some reassurance that things are being done to improve her situation.
Thanks for checking in!
Its frustrating. Shes becoming an absolute rail and just doesn't even act like her usual spunky self these days. I want to help her but I don't even know which way is up anymore. Should I push her to eat more so that she doesn't waste away, or will that only put her in further pain and make her condition worse?
Her lips reached an all-time AWFUL yesterday when she woke up from her nap . Her cheeks, mouth and hands were covered in blood, and her pillow case had soaked a 3 inch spot straight through to the pillow. She has deep dark circles around her eyes and little red spots on her cheeks. Lucy also hasn't slept through the night in so long I cant remember. Some nights shes up once, others its 4 or more times. Friday night she had a diaper blowout around 11pm, and is now constipated- which is probably not good.
AND, the hospital STILL hasn't called to set up her scope!!! This is only going to further delay treatment for her!!! Ahhhhh! Sitting back and doing nothing while my daughter is clearly not doing well is just not something I am comfortable with. Lucy hasn't been in a boat this bad since she was a newborn, and I felt helpless back then too.
I am going to see if I can get in touch with at least ONE of our specialists tomorrow just to update the situation and hopefully get some reassurance that things are being done to improve her situation.
Thanks for checking in!
Wednesday, October 14, 2009
mmmm....hair?
We've got Lucy totally off of the lollipops now. Shes not even asking for them. However, now shes trying to find other things to eat. Today I caught her eating old used coffee grounds, hair, and her toenails. Gross. Of course, SHE doesn't know its gross because comparing it to her formula I am sure it all tastes good.
The bad news is that despite not having any lollipops at all her face still has a rash and her mouth is still bleeding. Shes also still complaining of occasional belly aches.
I took photos of Lucy eating her snow and I will put those up later.
Thanks for checking in on Lu!
The bad news is that despite not having any lollipops at all her face still has a rash and her mouth is still bleeding. Shes also still complaining of occasional belly aches.
I took photos of Lucy eating her snow and I will put those up later.
Thanks for checking in on Lu!
Monday, October 12, 2009
We are working on it
We are still weaning Lucy off of these lollipops. Shes not giving them up without a fight. When no one is looking Lucy builds various towers out of furniture and toys to climb up in the kitchen. I moved them to the top of the refridgerator early today and later Zach caught her walking into the living room hiding one behind her back. She had moved a chair up to the counter and climbed up to the fridge. Shes a sneaky little bugger.
I may end up having to throw these things in the trash before she gives up!
I may end up having to throw these things in the trash before she gives up!
Sunday, October 11, 2009
Day 1
Yesterday was Day 1 of lollipop removal. It was not easy, as I expected. I took the kids up to Target and we got a Magic Bullet to make Lucy some "snow" out of ice. She absolutely loves her snow, but shes no fool, its not a lollipop. If you know Lucy, you know she NEVER gives up so I listened to a continuous mantra of "Can I have a lolly now? Can I have a lolly now, PUHLEEESE?" all day long. I felt like the meanest mom in the world and I started to wonder what memory will she have of this, will she think I was cruel and harsh?
This experience is making me rethink the idea of trialing foods ever again. How on earth can I put her through this again later on down the road whenever we get back to trialing foods? She doesn't understand this. This experience is like giving your kids everything they ask for on Christmas, letting them play with it for 15 minutes and then telling them that they need to pack them up and give the toys away to someone else. This is all way beyond a 2 year old's comprehension. Clearly we wont be trialing foods at all this year, but I think I may turn trials down until Lucy is old enough to understand she may not get to keep the foods we trial. From a psychological standpoint this sounds reasonable.
My second concern right now is that the lollipops equated a lot of calories for Lu with her limited formula intake. Each ounce of formula is 30 calories and each lollipop is 20 calories. So cutting out the lollipops now further reduces Lucy's daily caloric intake. The process to comb through her stomach issues can take months. Scheduling for her tests could happen as far as 4 weeks away, much less finding a cure for whatever is found on those tests. How thin will she be by then? Its a scary thought.
This experience is making me rethink the idea of trialing foods ever again. How on earth can I put her through this again later on down the road whenever we get back to trialing foods? She doesn't understand this. This experience is like giving your kids everything they ask for on Christmas, letting them play with it for 15 minutes and then telling them that they need to pack them up and give the toys away to someone else. This is all way beyond a 2 year old's comprehension. Clearly we wont be trialing foods at all this year, but I think I may turn trials down until Lucy is old enough to understand she may not get to keep the foods we trial. From a psychological standpoint this sounds reasonable.
My second concern right now is that the lollipops equated a lot of calories for Lu with her limited formula intake. Each ounce of formula is 30 calories and each lollipop is 20 calories. So cutting out the lollipops now further reduces Lucy's daily caloric intake. The process to comb through her stomach issues can take months. Scheduling for her tests could happen as far as 4 weeks away, much less finding a cure for whatever is found on those tests. How thin will she be by then? Its a scary thought.
Friday, October 9, 2009
GI Appointment
First, you HAVE to congratulate this country girl for driving all the way down into the city all by herself in rush hour traffic! Yay me! LOL
Now about the appointment:
We really liked our new GI, Dr G. He was very nice, straightforward, knowledgeable about autoimmune gut diseases, and quick. He is quite familiar with our allergist, Dr S, and is more than ready to work with him as a team to coordinate Lucy's care. Dr. G made attempts to make friends with Lu, but was rejected as usual. I appreciate his efforts though!
Lucy weighed in at less than 25 lbs, which is over a 1.5 lb weight loss- which is pretty significant for a two year old. This says shes not getting enough calories during the day to maintain growth. I was pretty shocked she had dropped so much, I was expecting more like a 1/2 lb or so.
Dr. G said that given all of her issues right now- the Raynauds, rash around her mouth, busted lip sores, weight loss, and failure to tolerate large feedings- indicates that her stomach is inflamed and not functioning properly. He suspects this inflammation is from Lucy not tolerating her formula anymore.
In order to be sure Lucy will need scopes done to check the condition of her GI tract and confirm that it is indeed inflamed. If it is inflamed Lucy will no longer be able to drink her Neocate 1+. She will have to go onto what is called "modular formula". Modulars are individual building blocks of carbohydrates, fats, and proteins. We basically will have to build Lucy a formula by hand. It is highly unlikely insurance will pay for this type of nutrition and it has a STEEP STEEP cost. It will cost FAR more than the current elemental formula she is on now, which was around $1000 a month before we had insurance coverage.
On top of that there is no guarantee changing to modular formula will enable us to avoid a tube. The modular formula isn't tasty and there is a chance she will have to be G-tube fed to force it in her. So for now, the prospect of a G-tube is still looming overhead, but is not a reality in the next month or so.
And to add insult to injury, Dr G wants us to take Lucy off of the lollipops. We need to go into this scope knowing that if her gut is inflamed the sole culprit can only be the formula. Removing the lollipops is horrible. I mean, seriously, these things are Lucy's joy. The one thing in this world that she can have that is tasty. How on earth can I take them from her?? I don't know how to do it. For now I am thinking the best method will be to slowly wean her down and then cut them out. I feel like if we go cold turkey, she would flip out. Taking out her lollipops is torture.
That's pretty much our appointment in a nutshell. It wasn't easy information to swallow. Things are going to be complicated for a while in order to sort out this mess. I am not even certain what I am hoping for out of this. If Lucy's stomach isn't inflamed, it means her digestive tract simply isn't functioning - which opens up a whole other can of worms and also reopens the possibility of a G-tube in the very near future.
Now about the appointment:
We really liked our new GI, Dr G. He was very nice, straightforward, knowledgeable about autoimmune gut diseases, and quick. He is quite familiar with our allergist, Dr S, and is more than ready to work with him as a team to coordinate Lucy's care. Dr. G made attempts to make friends with Lu, but was rejected as usual. I appreciate his efforts though!
Lucy weighed in at less than 25 lbs, which is over a 1.5 lb weight loss- which is pretty significant for a two year old. This says shes not getting enough calories during the day to maintain growth. I was pretty shocked she had dropped so much, I was expecting more like a 1/2 lb or so.
Dr. G said that given all of her issues right now- the Raynauds, rash around her mouth, busted lip sores, weight loss, and failure to tolerate large feedings- indicates that her stomach is inflamed and not functioning properly. He suspects this inflammation is from Lucy not tolerating her formula anymore.
In order to be sure Lucy will need scopes done to check the condition of her GI tract and confirm that it is indeed inflamed. If it is inflamed Lucy will no longer be able to drink her Neocate 1+. She will have to go onto what is called "modular formula". Modulars are individual building blocks of carbohydrates, fats, and proteins. We basically will have to build Lucy a formula by hand. It is highly unlikely insurance will pay for this type of nutrition and it has a STEEP STEEP cost. It will cost FAR more than the current elemental formula she is on now, which was around $1000 a month before we had insurance coverage.
On top of that there is no guarantee changing to modular formula will enable us to avoid a tube. The modular formula isn't tasty and there is a chance she will have to be G-tube fed to force it in her. So for now, the prospect of a G-tube is still looming overhead, but is not a reality in the next month or so.
And to add insult to injury, Dr G wants us to take Lucy off of the lollipops. We need to go into this scope knowing that if her gut is inflamed the sole culprit can only be the formula. Removing the lollipops is horrible. I mean, seriously, these things are Lucy's joy. The one thing in this world that she can have that is tasty. How on earth can I take them from her?? I don't know how to do it. For now I am thinking the best method will be to slowly wean her down and then cut them out. I feel like if we go cold turkey, she would flip out. Taking out her lollipops is torture.
That's pretty much our appointment in a nutshell. It wasn't easy information to swallow. Things are going to be complicated for a while in order to sort out this mess. I am not even certain what I am hoping for out of this. If Lucy's stomach isn't inflamed, it means her digestive tract simply isn't functioning - which opens up a whole other can of worms and also reopens the possibility of a G-tube in the very near future.
Wednesday, October 7, 2009
Nervous, excited, worried...
Yeah, I know, I have completely stopped posting here lately. We have so many things going on right now I have no idea what I should be most stressed about at the moment. I have no idea how to post about one worry and yet not another, so instead I just haven't said anything while we sort through things here.
But, here's the lowdown on Lucy here lately:
Lucy has made no progress on the health front. Shes not sleeping well at all and her mouth sores are still wreaking havoc on her poor lips. Her Raynaud's remains in full effect, but fortunately is not causing her any agony (maybe some discomfort but certainly not agony). And I cant tell whether its me being paranoid with worry at this point but I think she may have lost a bit of weight.
Our big appointment with our brand new top of the line GI specialist is on Friday and I am excited/worried/nervous/scared/eager to hear what he has to say. I don't know what it is I WANT to hear from this man, but I do know that I DON'T WANT to hear him say something to the effect of "I don't know what is wrong and unfortunately due to her condition I cannot offer any solutions."
I'll post again once we get back from our visit! Thanks for checking in!
But, here's the lowdown on Lucy here lately:
Lucy has made no progress on the health front. Shes not sleeping well at all and her mouth sores are still wreaking havoc on her poor lips. Her Raynaud's remains in full effect, but fortunately is not causing her any agony (maybe some discomfort but certainly not agony). And I cant tell whether its me being paranoid with worry at this point but I think she may have lost a bit of weight.
Our big appointment with our brand new top of the line GI specialist is on Friday and I am excited/worried/nervous/scared/eager to hear what he has to say. I don't know what it is I WANT to hear from this man, but I do know that I DON'T WANT to hear him say something to the effect of "I don't know what is wrong and unfortunately due to her condition I cannot offer any solutions."
I'll post again once we get back from our visit! Thanks for checking in!
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