Today we met with our GI and Dietitian. We entered this appointment with a different mindset than from when I first asked to be scheduled. At that time, Annabelle was still fighting the persistent cough that wasn't getting better, her appetite was depleting and we had recently gotten back from traveling where another doctor scared the begezus out of us that Annabelle was terribly malnourished. Today, we walked they the doors needing much less from this team except just guidance for the path we've chosen to walk on.
You see, as a parent of a child with an undiagnosed and mystery illness, the part I find myself playing most heavily is the loudest, decision making advocate for my child and sometimes that involves going against doctors orders and leading with only my gut. It sucks, no it doesn't take nerve or guts to defy a doctor, it's scary as hell. What if my gut is wrong? I'll be held responsible for my negligence in her care. If something happens, there is a good chance I will loose my medical support system! It's hard.
Today was the day I had to have that conversation with Annabelle's two doctors. I had to tell them that I left the state to seek a second opinion because I wasn't comfortable with the care I was receiving from them. I had to tell them that the other doctor including my local doctor here, all agreed the treatment plan we were on (that they decided) was dangerous and needed to be changed. I also had to tell two, highly respected, extremely knowledgeable doctors that I have completely changed Annabelle's medications with the support of our Ped and also added multiple foods that we not permitted within our care plan.
The conversation was difficult, undoubtedly, my voice was shaky but my head remained high as I validated my reasoning for all those decisions during the past three weeks. Thankfully, once again, my gut was right. The changes we've made were a lot less reckless than I feared and Annabelle is in fact so much better on our current treatment plan than she was before.
The only concern they both shared was my introduction of wheat into Belles diet. This, in retrospect was probably not very smart. But I really wanted her to have bread! We discussed around our plans for quite a while and all agreed that we will keep the wheat, but we must biopsy within 6wks.
Annabelle's weight looks great. She's growing very well (she's actually lost a little over a pound, but I expect that from coming off the prednisone). We have quite the strategic plan and instructions for her daily caloric intake. I really wish I were a dietitian for this part... Bc I understand absolutely nothing about calories and balancing meals!
We must continue our tube feedings of Elecare Jr. made to 30cal/oz and delivered at a feeding rate of 120ml/hr so that it is delivered over the course of 1hr. Feedings will continue to follow our schedule at 9A, 12N, 3P, 6P. Night feeding will run from 10P - 6A at a rate of 30ml/hr,
Additionally, she needs 150 calories per meal x3 and another 150 calories as total snacks each day. Specifically, 8 servings of grains x day (2 x meal, plus 1 for each snack). 3 servings of vegatables x day. 2 servings of fruits x day. 3 teaspoons of fat x day.
Can I stress once again, I really wish I knew more about nutrition. I find Chipotle and a Coke, a nutritionally complete meal and somehow survive..... Before the end of all this learning and adapting, we are going to be one of the best fed families in the county!
:drumroll:
We must continue our tube feedings of Elecare Jr. made to 30cal/oz and delivered at a feeding rate of 120ml/hr so that it is delivered over the course of 1hr. Feedings will continue to follow our schedule at 9A, 12N, 3P, 6P. Night feeding will run from 10P - 6A at a rate of 30ml/hr,
Additionally, she needs 150 calories per meal x3 and another 150 calories as total snacks each day. Specifically, 8 servings of grains x day (2 x meal, plus 1 for each snack). 3 servings of vegatables x day. 2 servings of fruits x day. 3 teaspoons of fat x day.
Can I stress once again, I really wish I knew more about nutrition. I find Chipotle and a Coke, a nutritionally complete meal and somehow survive..... Before the end of all this learning and adapting, we are going to be one of the best fed families in the county!
:drumroll:
The best news ever though... Are you ready for it? We were able to score a new food today! And not just any food, CHICKEN!!! Yes, that's right. For the child that wishes for nothing more in this entire world, she finally gets a chicken nugget. I am fairly certain by the tears that fell from my face this evening, I may have more excited than she was for this rare new treat.
After I left the doctors office, I spent the drive into work, on the phone with multiple people from another hospital that are eager to have Annabelle in their clinic to study all her adorable, difficult little cells ;)
When we got home, I made Madelynne dinner at her specific request (bc she's scored perfectly every day at school this week and I just couldn't be more proud of her), and I also quickly whipped together a new meal for Annabelle too. ;) Watch and enjoy!
Annabelle loved her chicken nuggets. Shortly after she was finished, she came to me and said, "Mommy, something is wrong. My tummy is saying 'grabble scrumble' ...... it's talking so loud because of the chicken nuggets!" I asked her, 'well, what should we do about that?'. Annabelle quickly piped up, "We need to make some more chicken nuggets, that's what we need to do!" :)
I did make her some more, but before they were finished, she was complaining more and more about her tummy making noises and then she appeared to be in pain. We quickly concluded that this grabble grumble sound wasn't a good thing, and so we've been spending the rest of our night in the bathroom and changing lots and lots of clothes. It's a new food and will take some time. Annabelle's little body has never, ever had any meat before. Not even when she was a baby, she's never had a meat. This will take some adjustment. The evening isn't going well but the small amount of time we spent enjoying chicken nuggets was worth it in her eyes I am sure. She will be just fine :) I just hope this upset tummy ends soon for her.
After I left the doctors office, I spent the drive into work, on the phone with multiple people from another hospital that are eager to have Annabelle in their clinic to study all her adorable, difficult little cells ;)
When we got home, I made Madelynne dinner at her specific request (bc she's scored perfectly every day at school this week and I just couldn't be more proud of her), and I also quickly whipped together a new meal for Annabelle too. ;) Watch and enjoy!
Annabelle loved her chicken nuggets. Shortly after she was finished, she came to me and said, "Mommy, something is wrong. My tummy is saying 'grabble scrumble' ...... it's talking so loud because of the chicken nuggets!" I asked her, 'well, what should we do about that?'. Annabelle quickly piped up, "We need to make some more chicken nuggets, that's what we need to do!" :)
I did make her some more, but before they were finished, she was complaining more and more about her tummy making noises and then she appeared to be in pain. We quickly concluded that this grabble grumble sound wasn't a good thing, and so we've been spending the rest of our night in the bathroom and changing lots and lots of clothes. It's a new food and will take some time. Annabelle's little body has never, ever had any meat before. Not even when she was a baby, she's never had a meat. This will take some adjustment. The evening isn't going well but the small amount of time we spent enjoying chicken nuggets was worth it in her eyes I am sure. She will be just fine :) I just hope this upset tummy ends soon for her.
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