Dips in the road

We had a few dips in the road this week, but thankfully they seem to have been just that. Dips. M has come down with a cold and is teething like crazy, so her eating wasn't stellar for a few days, but we seem to be out of that dip and are eating like a champ (a champ for her anyway) again! So very happy and thankful! I realized this morning how well she is doing, when a friend of mine who hasn't seen her for a little while saw her and honestly didn't know who I was holding. She really had no idea that the baby I was holding was M. That puts a huge smile on my face.

What also puts a smile on my face is that she has chubby legs, a double chin, she's almost rolling totally over, and is finally rolling side to side all the time, not just once in a blue moon, and she is working on sitting. She seems to just be doing normal baby things. Now that REALLY puts a smile on my face.....and a few tears too. :)

1 week

It's exactly a week today since we made the switch over to Nutramigen. Things are still going very, very well. She's eating more then she has and considering what's in her bottle, I hope that this really helps her continue to catch up on the weight gain.

My only concern now is that her bottles are so heavy, that getting her to eat solids and drink bottles is a little tough. Those bottles fill her up good and proper, so I have to be a little creative with when I give her, her solids too. But that's something we can deal with. That is a very minor issue in my opinion.

Good Things

There are some good things going on with M. We are on day 4 of the formula switch and have noticed some big changes.

A few changes I've seen:

1) Drinks more
2) It isn't a fight to get her to drink
3) She is happier
4) More energy, not nearly as sleepy
5) Urine isn't concentrated

Those are the biggest. I've noticed more, but they wouldn't mean anything to anyone else, so I won't go into all of them.

The other good thing that has happened is that M has finally doubled her birth weight. She is now 15lbs!! Wow, my doctor and I were surprised to see that! So I'm happy that she is finally gaining like they would expect her to, given the amount of calories she is taking in. So that's fantastic news!!

Formula Change

We're switching to Nutramigen today.  We're really hoping that with adding some bananas and sugar, she'll actually drink it.  Of course we're mostly hoping that she'll start to chub up and start drinking more then what she does.

The nutritionist called this morning to see how things were going, so I'm thankful that she is only a phone call away if things don't go well.

Updates

I apologize that this is a little late. It's been a week since M had her scope. But it's been close to the craziest last two weeks of my life and has been quite stressful, so writing about it wasn't really what I wanted to do.

Anyway, M had her scope on Friday of last week. She did great. They didn't find a whole lot of stellar results but some findings that may or may not explain things. (Again, this little girl is a total mystery)  Her passage ways are quite small. Smaller then they would be for someone her age, as well she has some minor irritation and swelling that could possibly point to an allergy or sensitivity. So we left with the instructions to switch formula to a hypoallergenic one. We haven't done that yet, but will be shortly. He also took some samples of her tissue to check for other things like Celiac, infection, Cancer, etc. This is a standard part of the procedure, so he isn't thinking we'll get anything positive from those results. Those come back in a month.

So we got through the weekend somewhat okay, but by Sunday I was concerned about her breathing. It was very labored and very loud. We waited until Monday morning to hear from Day Surgery and when they called and heard her breathing, they told me to get her into emerg. So we did. We spent all day in emerg giving her mask treatments, steroids and nothing seemed to improve her breathing. They did a few x-rays and found some narrowing in her upper airway. So by the end of the day she had improved enough to avoid another stay in the hospital (thank goodness) but we were told we needed to go see Ear, Nose and Throat this week. So we did just that as well. Wednesday we went to ENT, and was told that she was fine and there was nothing to worry about. But was also told that she just can't handle these things as well. When I asked why, and a few other questions, he didn't really have any answers. Again. So I was frustrated to say the least. We're always told "because of her issues" blah blah blah....well what exactly are her issues? Nobody seems to be able to tell us that yet. Just that she has some.

So here we are, her breathing is improving, but still not sounding great. She is doing a lot of breath holding and it's driving me crazy. My doctor has been calling her often to check on us due to Benny also having some health concerns, so I've told her about her breath holding and so we'll talk about that at her appointment on Thursday.

That is a coles notes version of the past two weeks.

Update from GI

Our appointment went really well today. He not only thought a scope would be a good idea, but also ordered up some new blood work and told me the scope would be happening on FRIDAY!!!! YAY!!

Anyway, the blood work has found some possible concerns, so we are repeating the blood work tomorrow and if it comes back positive again M will be admitted for further testing.  This is separate and apart from the scope. The scope will still happen regardless, but this blood work could have opened the can of worms that we have been waiting for! It will involve quite a bit more testing...which they have been humming and haughing over doing, so I'm happy that it will possibly now get done.

So tomorrow we go for a full work over to make sure M can handle the scope and that there won't be any surprises. They are being a little more careful with her then they would normally, just because she has so many different concerns that haven't been resolved that they wouldn't want to be unprepared for any of these things to show their ugly face in the middle of surgery. Make sense?

We will also get that blood work repeated tomorrow, so considering the doctor had called us about an hour and a half after we got the blood work done to let us know there were concerning results, I'm sure that means I will hear something tomorrow if tomorrows results are equally concerning.

Then Friday, we go in for the scope and hopefully get more results. I feel like we're very, very close. Very close. It's amazing how God has opened doors this week. We have found out more today then we have in months!!!

I will update when I can. Please continue to pray for us in the next few days.

Appointment

Praise Jesus! We got an appointment tomorrow with the GI at noon! I will update once we're home!

Prayer Please

I am feeling like I'm getting to the end of my rope, so here are some specific things you can pray for if you are praying for us:

1. That the GI specialist would get us in this week. If we don't get in this week, we're waiting for another month

2. That I would get all my thoughts and questions together, and speak them clearly to the GI specialist.  There is so much to talk about and remember, that I just can't keep it all straight anymore, and I feel like I just end up leaving these appointments disappointed because I didn't get anything out that I wanted to talk about and question

3. That the GI specialist would listen to my concerns and would do the scope like he's thinking about doing and that it would be done soon

4. That we would leave it all in God's hands (I feel kind of silly asking for specific prayer requests and yet asking for prayer to leave it all in his hands at the same time, but alas, that is what I'm doing)

5. That we would get some kind of answer soon so that we can move on with our lives

Thank you again for all your prayers and words of encouragement.

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.

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.

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.

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

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.

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.

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!

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.

Knock on Wood

Knock on wood, but so far the illnesses that have passed through our house this week have so far stayed clear of M. I'm REALLY hoping it stays that way.

Her eating has gone down a bit to just bellow her daily mins, but I'm still happy with how she's doing. We don't have an appointment till Friday with her, so I will update then, unless something else changes throughout the week!

Trying to stay healthy

Keeping this house illness free seems to be a bit of a challenge of as late. I'm feeling quite frustrated by it, but alas I have to trust that even if we ("we" mostly meaning M) all get sick, that things will still be okay.

She was quite upset last night and seem to be uncomfortable, but so far this morning she handled her bottle okay. So here's hoping it was just an off night and not anything else.

Please continue to pray that we can all stay as healthy as possible, and that even if and when we don't, that I would remember that it's okay and we'll make it through that too.

Still eating well

The good eating continues except for today. Today is down again, but not as low as she was before. So I'm really happy with that.

I talked to the nutritionist today and she agreed with my doctor that we could wait and see what she does now for two weeks before we way her again. Which I've decided I'm okay with as well. She also told me that if something changes in the mean time and her eating really drops off again, that I should just call in and they would get her seen. So that made me feel better.

I am also happy that we now have our appointment booked with the GI Specialist. It's in 2 weeks, so I'm happy we again don't really have to wait all that long.

So we're back in a time of "waiting and seeing", but I feel better about how things are going, so hopefully that will make the next two weeks go quickly!

Gain!!

M gained weight!!!! Still not what they would like to see, but probably the closest to that, that she's been yet. So she did really, really good.

On the agenda next is to call the nutritionist on Monday and update her with the latest numbers and then see what she wants to do. My doctor is okay with seeing her again only in 2 weeks. I'm not okay with that, so I'm going to tell the nutritionist that is what the doc requested and I HOPE she suggests I go in sooner then that. 

While I'm VERY happy she gained weight this week and is eating really, really well, I just want to make sure that we're actually on the up and up here before we get too excited.  She hasn't been able to maintain her weight for more then a week yet, hence my hesitation to wait two weeks till we go back.

Anyway, as I posted on FB today, I'm not in control. And I'm happy I'm not. I just have to remember to leave this all in the hands of the one who loves us most!

Eating Well

M has really, really picked up with her eating. She made her requirements yesterday and I think she'll be pretty darn close today too! Since Saturday she's really done well. I have such mixed feelings about this all, that I just don't know what to say. I'm VERY happy she's eating better, but I am SO scared that Friday's scale results won't be what I'm hoping. I can't even tell you how scared I am. I'm sure she'll have gained weight, but will it be enough? So if you think of it and are praying for us, that is another prayer request. Pray that on Friday her weight will REALLY show the story. That if she has decided to start progressing forward, that the weight gain would be a lot. Or if there really, really is something else going on here, that her weight gain would be low enough that they would hospitalize us again so that we really can get down to business and figure this out. Silly that I would want her weight to be low, but at this point, I feel like we've been riding the pine long enough and I just want ANSWERS!!!!

I also went and dropped off her stool at the lab today to be tested for the fat content. I also REALLY want those results back too. Again, I just really, really want answers.  I'm becoming more and more weary as the days go on and my patience for the whole situation is really suffering. So if you are praying for us, please continue to pray for perseverance for Mark and I as well as ANSWERS that would be clear and wouldn't leave us questioning anything! Very clear as day answers.  Thank you again so much for all your continued support in all the ways you have show us.

Update #2 for January 17th

I talked to the nutritionist today, and while she is happy that M has improved with her feeding, she's still not taking in enough to gain any weight. She said she isn't expecting to see any rise in numbers on Friday.  So we're holding off on the feeding tube until at least Friday. She wants to see what she does with eating for the rest of the week. If she doesn't pick it up a little more yet, we may very well be looking at a hospital visit next week, which will involve a feeding tube.

Day 4

I don't know what changed, but this little girl of mine is on day 4 of eating like a champ. Pretty much at her daily min. I'm so proud of her!!!

This however has me down on my knees begging that with all this good eating, her number on the scale on Friday will be a big difference. Not just a little one. I'm so scared for Friday. I'm trying really really hard not to get my hopes up.

Eating Well

This little turkey of mine seems to know when she needs to shine! She has eaten like a champ this weekend! More then what she has in a very long time. Like we're talking almost meeting her daily requirements!!! Only 1 or 2 oz away from meeting her daily mins. While I'm very, very happy for this, I'm trying not to be TOO optimistic. My biggest fear is that she'll eat this well all week, and then on Friday we'll get to weigh in and she still won't have gained weight. Oh well, I'll deal with that on Friday, if that's what happens.

M is also really good at making us all think she has decided to take a turn for the good, and then something changes and she plummets again. So here's hoping that this good eating will continue, and that on Friday we will see a BIG weight gain. Not just a few grams. 

With this improved eating, I'm quite curious to see what the nutritionist will have to say on Tuesday. I think I may also break my own rule and go and get her weighed a bit earlier then Friday, just so I can prepare myself for the weigh in on Friday a little bit. My heart breaks each time I don't see what I'm expecting to see on that scale, so having an idea of what I may see ahead of time, may not be a horrible thing.

4 mth appt.

Today was M's 4 month appointment. She lost weight. Not a huge amount, but anything is more then what we want from her.

Anyway, so we are just continuing to wait to get into see the next round of specialists. Those involve an allergist, a "feeding doctor" as they call her, a GI specialist, a metabolic specialist, the respiratory specialist, and I know there are more, but I can't remember them all at the moment. My doctor also mentioned that it is possible that if things don't improve soon for her, they are considering putting us back into the hospital to try and figure it out all from there. I told them I was fine with that, as long as that is what they do. Not like last time where they just throw their hands up in the air after a few tests and send us home.

What might get us into the hospital now sooner then that though is that M is really not eating a whole lot these days and after a discussion with the nutritionist, she is going to be recommending to my doctor that they put a feeding tube in. If my doctor agrees with her, that will require a hospital stay in the near future. So the plan for now is to see how she does throughout the weekend and report back on Monday or Tuesday, unless I hear from my doctor before then.

So the roller coaster ride continues. Next appointment (Weigh in): Friday, Jan.20

Still puking

M is now in a puke once a day kind of cycle. I'm starting to think this is not the flu anymore. She doesn't seem uncomfortable when she pukes like she did last week. I'm thinking it's either her reflux coming to a head, or it could be some of the new medication or formula additives that I am giving her. So another phone call to the nutritionist and doctor. 

On the plus side, she drank 3.5 oz for me during the night!  She's almost already passed what she drank the whole day yesterday!!! So here's hoping we're on the up and up today!!

Throw my hands up

Today all I can do is throw my hands up in the air and say "Okay God I give up"!! This little girl of mine drank 9oz yesterday. 9!! Today she has drank 4 so far. That is a very far way from where she's suppose to be. M, how are you going to gain weight and get these doctor's off your back if you don't eat anything??!! I give up. Okay, maybe I don't, but I sure want to.

Minor Update

I talked to M's doctor this morning, and it was just a very minor update. So we are really going down the allergy trail here (which I REALLY hope is the answer), and she was just letting me know we'd see a different doctor then originally anticipated, because the other one is on holidays and she doesn't want to wait that long. So not a big update at all.

As for M.  She was still throwing up through the weekend, but hasn't yet today, so that's good. She's still quite uncomfortable.  Mark is back to work today and I was quite nervous, but it's gone better then I thought.  Getting out the door is a bit interesting, because I have quite a few new things to be giving her and they all have to be timed properly, but other then that, I think I can make this work.

Still puking

M puked again this morning. So I guess we're not out of the woods yet. Hopefully she turns around soon!

Why don't doctor's listen?

Today was a nasty, nasty day. It's a very long story that I don't feel like getting into on here, but what was suppose to be a visit with the nutritionist and then some blood work, ended up with a 6.5 hour visit to the ER all because the doctor who saw us (in the ER) didn't really listen to what I had to say.  SO FRUSTRATING!!! No harm done, other then we spent the whole day at Children's when it should have just been an hour or two.

The good news is that M seems to be slowly recovering from the flu. She has started to pee again, not a whole lot, but something at least. And she has kept down the bottles she has drank. Still runny stools, but I'm sure that will improve shortly.

The other good news is that we had a good visit with the nutritionist this morning. So since she is at the highest caloric intake she can be on with her formula, we are now adding some glucose to her formula that will also bump up her calorie intake. Adding this will sort of give us answers like the feeding tube would have. So this is sort of replacing that. If M continues to not gain weight on this stuff, then we will know that she isn't absorbing the nutrients she should be. So I look forward to seeing what happens here with this.

I also picked up her new antacid medication today. Good thing we have coverage, because if we didn't, this stuff would be $100/month. I realize that may not seem like a lot, but with everything else that she is on, it's starting to add up. But another thing to be thankful for, Health insurance!

When we got home today, there was also message from our doctor to call her on Monday, because she has a slight change of plans she said. Nothing serious, but a change. So I'm very curious as to what that will be. I'm wondering if she will change her formula. Anyway, I'll update on Monday when I talk to her.

Mark and I are starting to become quite weary, so please pray for us that we would continue to have whatever it is that we need to keep taking that next step forward.

Second Opinion and the Flu

Well the very bad and discouraging news is that M has lost weight. Yes, we did take into consideration that she has the flu, but even without that, there still would have been a loss.  Anyway, she is now back down to the bottom of the growth chart again. :( Very discouraging for me, and makes it a little more real to me each time I see that, that something really isn't right with her. Each time I take her to be weighed, I always think this time it will be better...and then it's not. Reality strikes again. 

We are not in the clear with her flu yet either. I'm watching her very closely for dehydration, and may very well be making a trip to Children's tonight yet if she doesn't start peeing soon.

Anyway, the very good part of today's meeting was that I met with the new doctor. Fantastic. I spent over 2 hours with her, and we went over EVERYTHING from day 1! We talked about a lot of stuff, so I can't put it all on here, because there was just so much. The just of it is, we are starting over with all the testing. Everything she's been tested for, she's being tested for again, and then we are also moving on to a few new tests.

So tomorrow after we meet with the nutritionist, I am taking her for some blood work to test her thyroid, then we are also having her poop tested for fat content as well as for something to do with her having the flu now.

She is also doing a metabolic screening, scope down her wind pipe, CT of her chest, changing her reflux meds to a acid blocker, testing again for milk protein allergy, chest x-ray (looking for any abnormalities of her heart they couldn't pick up on the echo), plus we are being referred to the "feeding" doctor as she called her, and she's trying to get us in to respirology quicker then the appointment we have now at the end of Feb.

Her thoughts were more along the lines of something metabolic or allergy then heart or anything like that, but she's going over everything again.

I know I have forgotten a lot, because there was so much discussed and so many tests she mentioned. The ones I've mentioned here, are all being arranged as we speak, so that's why I remember those ones. The rest are also being arranged, but may take a little longer, depending on the results of some of these first ones.

We are SOOOOOO thankful that she is doing all of these. I don't think anyone can know how thankful we are.  We are also both very scared. Scared of the results, or lack of results. I'm not sure which is more scary at this point.

Thank you again for all your kind words and support. Please continue to pray for all of us (especially sweet little M) as we continue with all these tests. Some of them won't be very comfortable for her, and some will involve sedating her, so please pray for those especially. Thank you,
Lisa

Still sick

M is still puking this morning. Diapers are wet, but not that wet. So I'm watching her very closely. Her mood however is still great! She's miserable, pukes, and then has smiles for everyone! I'm very thankful for such a happy, sick child!

Sick

Well M has the flu. She is puking up everything we give her. Now she is asleep again. Thank goodness we have a doctor's appointment tomorrow.

I'm starting to feel like this is all a cruel joke.  One small step forward, 5 steps backward!!

January 3rd

So M's volume intake has again gone down to what it was when we were hospitalized. She should at minimum just to stay hydrated, be drinking 19oz in a 24 hour period. She is now at 12-16 oz. So I called the nutrionist and we're going in to see her on Friday.

Sickness

Sickness is spreading in our household. E has had a fever all day, and a cough that is starting to sound like it could be croup, and B has just started puking.  Please pray that this would all stay far, far away from Maddy, and that if Mark and I both get it, that it wouldn't be at the same time.