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.