Just another Christian Mommy

 I just finished a Bible Study based on the book The Story with my grandma and her church which is also the church I attended before I was hired at Grace First. I wasn't planning on being apart of the study or reading the book but I was over at her house recovering for my first gtube placement and joined her that week on zoom and before I knew it I was sent the book and study guide and invited to join. In the study we spoke alot about the upper Story and the lower story. And it really hit home this past week.  My port was acting funny and my nurse couldn't access it. So I went to the newly opened Community Er and they couldn't access it either... They did however send me home with an IV so I could give myself my meds and fluids over the weekend. On Monday the IV site was failing and I wasn't feeling well. My primary was worried about Infection and sent me to UCI. They wanted a CT with contrast to check placement before accessing it since so many nurses were having troub

  Hello my lovely readers, I thank each and everyone of you for following my epic health journey and supporting me! The last month has been so brutal I finally got my G/j tube and am on tube feeds however I have not made my goal rate yet. I am currently getting about 60% of the calories I need daily from the tube. I am trying a new Kate Farms Formula called Peptide 1.0 in hopes I can get more in that way. My blood levels dropped several times the past two weeks which resulted in hospitalizations, blood transfusions, and iron transfusions. My iron levels are so low I can't make more blood and I am slowly leaking blood somewhere they just can't find it. I will go for more Iron next week.  Mother's Day was the last time it dropped and I began to swell so bad I gained about 15 pounds overnight and it majorly stressed out my heart. I'm starting to swell slowly again this week which greatly increases my all over pain.  These photos were only taken 24 hours apart, all the swel

Need some bling? Check out my Origami Owl Jewelry  Here is a quick video update on what's going on with my health. It's been an emotional week and I am happy to report I got some good news and things are moving in the correct direction! Thank you everyone for your support!

 Sometimes it is so easy to become overwhelmed by how much I have lost these last few years, first with Noah's health decline and then with my own. I miss teaching more than I could possibly express! I miss my students and often think about them and wonder how they are doing, not just musically but in life in general. My studio students I used to see daily and now I haven't seen most of them in over a year. I miss being able to take a shower by myself, driving and being well enough to do errands or going out without having to plan meds and what not.  The past month has been hard on me healthwise. I've been just hanging on the really sick but not sick enough to be hospitalized in a pandemic. My primary said if our hospitals were not over run at the moment he would send me as a direct admit for 4 or 5 days to get the tests I need to get me on the road to recovery sooner. all December I called and left messages for my GI and for one full month I did not receive a call back. In

  So I won't try to sugar coat it, this past week was awful! It started with Miss marvel, Noah's beloved pet hamster which we have only had for a month dying suddenly. This was my child's first experience with loss and it was so hard to see him in so much pain! My amazing Husband was able to help him work through some of the pain by putting it in comic book terms and relating it to Thanos and the Avenger's movies. ( Thank God) Noah also had a rough appointment at the Nephrologist where we found out despite high doses of Vitamin D, his levels are still insanely low and the reason he has such low energy and all over bone pain. He had to get another blood draw and completely melted down and it became an extremely stressful situation. He is suspected to be on the spectrum but the testing keeps getting cancelled or delayed due to covid. He has had 5 different hospitalists from 3 different hospitals think he is on the spectrum but getting it official will help get him more su

 Lets start with the wins! I was able to maintain a calorie count and body weight for 10 days with feeds turned off so a few days ago I was able to have my NJ tube out!!! This has helped me so much!!! I was having mild swelling on and off the last 3 weeks in my throat as a reaction to the tube itself (thank you MCAS) and had to use my EPI PEN 2 times the day before because the swelling was affecting my ability to breathe. I was so relived when it ended up being just a few hours in the ER for that one! I was given fluids, iv steroids', and iv benedryl and thankfully sent home because they didn't want to mess with my tube without my GI approving and thankfully the next day I was given the okay to remove it. I started losing my vocal range about 2 weeks into having the tube due to swelling and tension so I am so excited to get my voice back into shape and singing as much as possible now. Now as much as it caused issues I was able to be out of the hospital and it saved me from pass