As you know, M had a check up with her ped. She was weighed and I was told she gained, although they didn't tell me how much. She just showed me her chart and told me she has maintained her curve now since the last visit, so that's great news!
I also called the GI specialist again today and talked to his nurse and due to the fact M won't eat anything unless I give her medication, he is going to try and get us an appointment for Monday. So I'm really happy about that too! I feel like we're so close to getting things solved, that my patience is getting even thinner. Lets not wait weeks and months, lets just get these appointments done and get an answer.
Wednesday, February 29, 2012
Tuesday, February 21, 2012
Lung function is A OKAY!
Today after a hairy drive to WPG in our first snow storm of the year, we met with respirology. It's never fun to have the doctor walk in the room and the first thing she says is "Wow, she really is small, isn't she.?"...especially after having her weighed and she hasn't gained since last week. Just when I was very happy with her recent weight gain, my heart sinks a little again. The good news though, is that her lungs are looking good! No major concerns there! So that's great that we can scratch another specialist off our list of people to see! YAY!!!
This doctor was concerned about M though, and wanted to help me out as much as possible. So she went over EVERYTHING with me regarding M (even though she most certainly didn't have to) and gave me a few tips and ideas of what to pick the doctor's brains about next. She also wrote my pediatrician a letter stating what some of the next things they should be looking at. So that was really great of her!!
I feel like I get so much information from all these doctors and am asked so many questions about so many different things, that I most certainly can't remember it all and can't even begin to actually put it all down on this blog. There is still so much stuff they are watching, and we're watching, but it feels good to be starting to get down to just a few doctor's. Not 7 or 8 like we were seeing up until now. So slowly we're axing them off the list! :)
Tomorrow, I will call the GI and let him know that while the double dose of the reflux meds seem to have changed how she eats throughout the day, it hasn't increased her intake much at all. Maybe by an ounce or so in a day. But not much. She now can seem to eat more at once, but then doesn't eat for 7-8 hours after that. I will also let him know that her sleep seems to be increasing again, not going down.
So the next appointment is: next Wednesday. Follow up with the pediatrician on her weight and everything else.
Please continue to pray that we would get down to the bottom of this.
This doctor was concerned about M though, and wanted to help me out as much as possible. So she went over EVERYTHING with me regarding M (even though she most certainly didn't have to) and gave me a few tips and ideas of what to pick the doctor's brains about next. She also wrote my pediatrician a letter stating what some of the next things they should be looking at. So that was really great of her!!
I feel like I get so much information from all these doctors and am asked so many questions about so many different things, that I most certainly can't remember it all and can't even begin to actually put it all down on this blog. There is still so much stuff they are watching, and we're watching, but it feels good to be starting to get down to just a few doctor's. Not 7 or 8 like we were seeing up until now. So slowly we're axing them off the list! :)
Tomorrow, I will call the GI and let him know that while the double dose of the reflux meds seem to have changed how she eats throughout the day, it hasn't increased her intake much at all. Maybe by an ounce or so in a day. But not much. She now can seem to eat more at once, but then doesn't eat for 7-8 hours after that. I will also let him know that her sleep seems to be increasing again, not going down.
So the next appointment is: next Wednesday. Follow up with the pediatrician on her weight and everything else.
Please continue to pray that we would get down to the bottom of this.
Thursday, February 16, 2012
Some Thoughts
I have been very very happy with the weight gain M is having these days, but my mind is still going in circles.
My latest thoughts (and those of you who are from the medical profession that are reading this, please feel free to chime in) are I'm wondering if we should maybe be also looking at why this little girl still sleeps so much? Or is that something that I should just be thankful for? My questions around this are because she still doesn't eat very much...and I DO think that part of the reason she doesn't eat much is because she is always sleeping! For example, she went to bed last night at 5:00pm and now it's 7:30am and she's still sleeping! She did wake once to eat at 3:00am, but with such an early bed time, and the fact she naps a min 8 hours in a day, she only had 3 bottles yesterday. Now if those bottles would be 6 oz bottles, I would feel a little better, but they are all 3-4oz bottles. Sometimes only 2oz! So not enough! If I try to feed her when she doesn't want to eat, she just won't eat. You can't force this little girl to do anything. So offering her small meals often, doesn't work for her.
Now again, if this is just something I should be thankful for, then I can do that, but it just seems a little obvious to me that maybe she is sleeping too much? Maybe it would help if I could get 6 bottles into her, instead of 3? I don't know. Just some thoughts.
My latest thoughts (and those of you who are from the medical profession that are reading this, please feel free to chime in) are I'm wondering if we should maybe be also looking at why this little girl still sleeps so much? Or is that something that I should just be thankful for? My questions around this are because she still doesn't eat very much...and I DO think that part of the reason she doesn't eat much is because she is always sleeping! For example, she went to bed last night at 5:00pm and now it's 7:30am and she's still sleeping! She did wake once to eat at 3:00am, but with such an early bed time, and the fact she naps a min 8 hours in a day, she only had 3 bottles yesterday. Now if those bottles would be 6 oz bottles, I would feel a little better, but they are all 3-4oz bottles. Sometimes only 2oz! So not enough! If I try to feed her when she doesn't want to eat, she just won't eat. You can't force this little girl to do anything. So offering her small meals often, doesn't work for her.
Now again, if this is just something I should be thankful for, then I can do that, but it just seems a little obvious to me that maybe she is sleeping too much? Maybe it would help if I could get 6 bottles into her, instead of 3? I don't know. Just some thoughts.
Tuesday, February 14, 2012
Update from Allergist
So just like I thought, today's appointment wasn't much. I drove to Health Sciences to hear "We're fairly certain this isn't an allergy" I already knew that, but I guess it's good to have it confirmed. Now because B & E have allergies, they are going to continue to watch M for allergies that may show up, so we have another follow up in May to see what happens once she's eating more solids.
Now the frustrating part is that I was asked again today if we've seen Dr.Rempel who is the feeding doctor. I said No we haven't yet. There has been much talk about how she is the one to see and everyone tells me we need to see her, but yet we haven't seen her. So she asked me if I would like to see her. I told her of course I want to see her. She then said she would tell my doctor and get us referred. Oh boy...that means it will be another month at least before we get in there. Oh well, another thing I don't have much control over.
The good news is that while she's still not eating great, she is slowly gaining weight! So I'm very, very happy with that!!
Next Appointment: Follow up with the lung people next Tuesday
Now the frustrating part is that I was asked again today if we've seen Dr.Rempel who is the feeding doctor. I said No we haven't yet. There has been much talk about how she is the one to see and everyone tells me we need to see her, but yet we haven't seen her. So she asked me if I would like to see her. I told her of course I want to see her. She then said she would tell my doctor and get us referred. Oh boy...that means it will be another month at least before we get in there. Oh well, another thing I don't have much control over.
The good news is that while she's still not eating great, she is slowly gaining weight! So I'm very, very happy with that!!
Next Appointment: Follow up with the lung people next Tuesday
Follow Up
Today we have a follow up with the allergist. I'm not exactly what to expect from today's appointment, but maybe I'll be surprised. All of her blood work has come back showing negative for any milk allergies, and she doesn't really show any signs or symptoms towards it other then not eating a whole lot. So like I said, I'm not really sure what will come of today, but we'll see and I'll update later.
Thursday, February 9, 2012
GI Specialist
As you know, yesterday was the appointment with the GI specialist. I tend to have this problem with each specialist we go to, I get so hopeful for each appointment and latch on to every word they say and then nothing pans out from it and then I'm disappointed again. The good news is that, that didn't totally happen yesterday. We finally got some answers yesterday as to things we are NOT dealing with, and some possibilities of what we ARE dealing with.
We are more then likely NOT dealing with anything metabolic or malabsorbtion issues. Almost all her stool tests have come back negative. We are still waiting for one, but he said he'd be surprised if it was positive.
His thoughts are that this is could be some extremely severe acid reflux, or some kind of condition that has a really long name that I can't remember that has to do with the esophagus. He said it's normally prone in children that have allergies, and come from an allergic family. So he encouraged us to keep our appointments with the allergist and the other specialists, because they could all be connected.
Anyway, the next steps for this are upping her reflux meds. She's already on a very strong acid blocker, so we'll up it one more time and if that doesn't work, then he figures we should do a scope to have a look inside to see what her esophagus looks like. So for the next two weeks we'll see if her meds help her eat better, which hopefully will also help her gain better. If that works, then he's fairly certain this is reflux related.
So here's hoping it's really that simple. I'm very scared that it's not, but I am really, really hoping it is! Do you know how happy we would be to put this all behind us, and to really be able to start enjoying M in a way we haven't been able to yet??!! Without watching her every stinking move and every drop of formula that goes into her body, and watching her cheeks to see if I think they have grown, or if maybe, just maybe she has a new fat roll that I haven't seen yet, etc.
I realize this appointment doesn't answer all my questions, but at the moment I would be OVER THE MOON if she started to eat better and gain better. I can get over my child being small, but I just want her to eat something and at the very least continue to gain...even if it is slowly. So if you're praying for us, please pray that it really would be this simple. And if its not, that we would at least be on the right track to figuring it all out.
We are more then likely NOT dealing with anything metabolic or malabsorbtion issues. Almost all her stool tests have come back negative. We are still waiting for one, but he said he'd be surprised if it was positive.
His thoughts are that this is could be some extremely severe acid reflux, or some kind of condition that has a really long name that I can't remember that has to do with the esophagus. He said it's normally prone in children that have allergies, and come from an allergic family. So he encouraged us to keep our appointments with the allergist and the other specialists, because they could all be connected.
Anyway, the next steps for this are upping her reflux meds. She's already on a very strong acid blocker, so we'll up it one more time and if that doesn't work, then he figures we should do a scope to have a look inside to see what her esophagus looks like. So for the next two weeks we'll see if her meds help her eat better, which hopefully will also help her gain better. If that works, then he's fairly certain this is reflux related.
So here's hoping it's really that simple. I'm very scared that it's not, but I am really, really hoping it is! Do you know how happy we would be to put this all behind us, and to really be able to start enjoying M in a way we haven't been able to yet??!! Without watching her every stinking move and every drop of formula that goes into her body, and watching her cheeks to see if I think they have grown, or if maybe, just maybe she has a new fat roll that I haven't seen yet, etc.
I realize this appointment doesn't answer all my questions, but at the moment I would be OVER THE MOON if she started to eat better and gain better. I can get over my child being small, but I just want her to eat something and at the very least continue to gain...even if it is slowly. So if you're praying for us, please pray that it really would be this simple. And if its not, that we would at least be on the right track to figuring it all out.
Saturday, February 4, 2012
Update from Appointment
M put on a little bit more weight. Not much at all, but definitely some. Still not what we were hoping for, but I'm trying hard to look at it more positively.
Her doctor seemed quite surprised that she hadn't really gained all that much since she's done so well with her eating (except for the past few days which I'll talk about in a minute). She didn't really know what to say or do. I was quite frustrated. The results from the stool tests have not come back except for blood and parasites. Those were both negative. We sort of left it that we'll see what the GI has to say next week. It was also determined that we will for sure be revisiting the heart specialist, but not till she can sit on her own. So hopefully she does that sooner rather then later.
Now back to her eating. This is day #4 of really poor eating again. I talked to the nutritionist about that yesterday and she was concerned about her lack of eating again. I have to admit that I'm getting pretty tired of no one making a decision on what to do next. We've had quite a few things dangled in our faces for quite some time, but we're always told "Wait and see what she does". Well she's been doing the same thing for 5 months!! So I would really appreciate if we would just decide on a plan of action and actually go forward. I know some of these things are very invasive so they don't want to do anything unnecessarily. I get that. I'm just tired of "waiting and seeing". Maybe that's what's necessary? I don't know. All I know is that I'm a human and humans like to fix things. So I naturally want something done to fix this too!
Whoa, sorry for the vent session there. So what are we doing next? Seeing the GI specialist on Wednesday. And in the mean time the nutritionist suggested I try giving her cereal. I wasn't thrilled about that idea, but she said if her drinking slows down any more, then to stop. So I'll try it!
Her doctor seemed quite surprised that she hadn't really gained all that much since she's done so well with her eating (except for the past few days which I'll talk about in a minute). She didn't really know what to say or do. I was quite frustrated. The results from the stool tests have not come back except for blood and parasites. Those were both negative. We sort of left it that we'll see what the GI has to say next week. It was also determined that we will for sure be revisiting the heart specialist, but not till she can sit on her own. So hopefully she does that sooner rather then later.
Now back to her eating. This is day #4 of really poor eating again. I talked to the nutritionist about that yesterday and she was concerned about her lack of eating again. I have to admit that I'm getting pretty tired of no one making a decision on what to do next. We've had quite a few things dangled in our faces for quite some time, but we're always told "Wait and see what she does". Well she's been doing the same thing for 5 months!! So I would really appreciate if we would just decide on a plan of action and actually go forward. I know some of these things are very invasive so they don't want to do anything unnecessarily. I get that. I'm just tired of "waiting and seeing". Maybe that's what's necessary? I don't know. All I know is that I'm a human and humans like to fix things. So I naturally want something done to fix this too!
Whoa, sorry for the vent session there. So what are we doing next? Seeing the GI specialist on Wednesday. And in the mean time the nutritionist suggested I try giving her cereal. I wasn't thrilled about that idea, but she said if her drinking slows down any more, then to stop. So I'll try it!
Friday, February 3, 2012
Doctor's Appointment Day
Today is check up day! I will post an update later.
Things have gone fairly good with M in the past two weeks and I'll be surprised if her numbers aren't up on the scale!! :) Although now the past 2 days she has gone back to not eating much again, and wanting to sleep all.the.time. She is back to a newborn sleep schedule. She can't be up for more then half an hour to 45 minutes without wanting to sleep again. Even doing things like falling asleep while eating and such. She hasn't done that for a while already and at 5 months old, I would have thought she'd be getting past that. So that's something to mention today.
I'll post again later when I get home.
Things have gone fairly good with M in the past two weeks and I'll be surprised if her numbers aren't up on the scale!! :) Although now the past 2 days she has gone back to not eating much again, and wanting to sleep all.the.time. She is back to a newborn sleep schedule. She can't be up for more then half an hour to 45 minutes without wanting to sleep again. Even doing things like falling asleep while eating and such. She hasn't done that for a while already and at 5 months old, I would have thought she'd be getting past that. So that's something to mention today.
I'll post again later when I get home.
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