It was supposed to be a quiet day, but became quite busy as the day proceeded.
A couple of doctors from the genetics team came in this morning. They had a handful of questions and left with what seemed to be a couple of leads to explore.
We went down to get an X-ray of her tummy to see if any reason for suspicion.
Ms. Lou came to torture her and get more blood. Actually she is wonderful and knows exactly who Maggie is when her name comes up for more blood draws. She mentioned the possibility of having to do a picc line if we have to continue to get blood form here. I've said over and over I'd rather them take blood(something she can make more of) than have to put meds into her.
She has lost some weight. Dietician was by and suggested we put her on formula for a bit to see I the vomiting stops. I'm not a big fan of that and am still going to check them out, but it is an option we may be looking out. In the meantime, I have decided to do an elimination diet to see. No gluten still (been a couple of weeks already), no sugar, no soy, no dairy/whey. Once I am off all and it helps calm her tummy then gradually I can introduce one and watch for reactions.
I still think her systems are compromised and food consumption as a role in this whole issue.
OT worked with her for a while.
Speech just checked to see feeding a bit again. No issues.
There was not bleeding in the eyes. They concurred about delayed visual development and recommended to follow up with the local eye doctor at 6 mo as already planned.
We played BINGO through the hospital and got some prizes.
to go outside and get some fresh air and sunshine for a bit.
And...we had a sweet friend visit tonight. Ms. Tammy was the perfect one to sit and chat with. Her line of thinking with holistic care and medical practices is very similar to mine. She was able to empathize with my frustration that we are missing the middle ground here. There are definitive things that I know are true about Maggie that these medical professionals dismiss as a non-component. Just because they are not familiar with something does not mean it is wrong or not plausible. Tammy is very passionate about diets and. reassured my thinking of diet in the picture and is going to pick me up some good food. (Disclaimer: when I say diet, I'm just referring to the general idea of consumption). Interestingly enough, what I would consider my home church in Iowa is going through the spiritual act of fasting. The more I become educated, the more God reveals how our eating is related to spiritual. As my friend Pam said this weekend, "we've taken something God designed for nourishment and made a recreation out of it." And, there is big money driving lots of regulations and the overall corruption of the food industry. I encourage everyone to do their own research on GMO's and gluten. Blissful ignorance is great, except is killing us. Type gluten and ________ (anything-ADHD, autism, cancer, Alzheimer's, ALS, seizures, thyroid, diabetes). I would be shocked if you don't find much and not just forums, but actually medical journals. It can manifest itself in all kinds of crazy ways and is often times the culprit when nothing else provides answers. And people tend to get a little more sick coming off it. I hold fast to the fact that these things play a role. Maybe not the end all be all, but something. Still know that her back is an issue too and even though no one here care, how can the spine not play a role. I think she has some compromised systems on top of potential genetic mutations (why wouldn't unknown" genetic mutations be caused by all the toxins we put into our bodies.
Ok...off the soap box. I just got going and think it all is a component in this whole Maggie puzzle and is all being overlooked.
CT scan with contrast to look at vessels. We tried today, but she wouldn't be still enough, so tomorrow morning she has to go under anesthesia again. Boo.…
Thank you all for the prayers and encouraging words. Though I don't respond to everyone, I really enjoy reading them. And I can definitely feel God's comfort and that many of the petitions to The Lord on our behalff have been answered. Emotionally today was great day! For no real reason.
Ok...sleep is needed. Not proof reading tonight. That put me to sleep yesterday.