If you know much about me whether personally or from reading my blog, you will know I am extremely thorough. I’m certain to the point of annoyance too. I asked my mom the other day if I was hard to raise because I knew I was a sassy little thing! She said, “No. People would comment often on your sass and I just believed you had something to say and deserved to be heard.” So likely, I am the way I am because I’m confident in my voice! So moms of sassy little girls… you keep on encouraging her to speak up, respectfully of course! You never know what she made need her voice for!
Now, when it comes to my needs or in this case, my daughters needs, I make no apologies for my need to be thorough. It is what it is. I have found that I can’t count on anyone else to get Demi what she needs like I can. We have an AMAZING medical team and a wonderful doctor leading the way but that doesn’t mean I just follow along without question. I gather my own information, do my own research and I make sure that I’m giving Demi everything she could ever need.
Because of my persistence, I was able to speak with that doctor from Chicago!! She has been incredible. Actually a better word is monumental! She gave me information on Demi’s medications and how they should be compounded and how I need to be on top of that to make sure it’s done right and that not one ingredient is substituted without knowing about it. She has a great understanding of Demi’s labs dropping and likely can pin point the issue so it doesn’t recur. I’m so grateful for that. We do not want to stop medication again or her to be so immunocompromised again.
With the new information from this doctor I have had to communicate more with our doctor, the two pharmacies we will be using moving forward and the one we have been using. I also had to make some calls to my insurance about the denial of coverage of these meds as well as some other things they denied. It’s just been so much back and forth. I’m sure so many can relate.
Demi’s labs are coming up but still severe. We will draw her labs tomorrow and Monday and hopefully restart her medication one at a time next week!! Im loving this doctors suggestions and her knowledge is spot on!!
Being so thorough takes a lot of my time and attention. I definitely feel overwhelmed with everything I involve myself in daily, but there is no other option. At the end of every day, I feel accomplished as her advocate too!
We are praying for Demi’s labs to continue to improve and for her to be able to restart medications very soon!!