Demi’s doctors are working hard on finalizing a diagnosis for her. We are extremely close and believe we know exactly what caused her to have a visual impairment and some potential (because the neurological system isn’t cut and dry but more of a waiting game and I’m not speaking negative things about my child) abnormalities with her neurological system.
At this time I’m not willing to discuss the potentials because it’s not definite. Once we know for sure, I’ll be willing to share. It’s a protective measure for myself really. I don’t want to be vulnerable right now to “what if’s” so I’m sure you can understand my desire to remain private with that.
Demi will start a year long medication regimen tomorrow that can drop her immune system. So we will need to learn how to best protect her in this process. We will have labs drawn weekly at first then slowly back off to see how her body responds to the medication to be sure her immune system doesn’t dip too low.
Monday she will have a spinal tap without anesthesia…. that frightens me. Her pediatrician was kind enough to call and speak with me about this protocol and put me at ease. We have been so blessed with the best team of physicians thus far. I can’t brag enough about how personal everyone has been, from her pediatrician, to the St Jude team, to her eye doc, neurologist and some of our specialist. Everyone has been amazing.
We have a geneticist appointment next week!!! We were able to be bumped up! Demi’s symptoms aren’t appearing to be genetic but we want to be super sure we aren’t missing anything.
I’m still researching ophthalmologist and neurologist across the country for Demi. Once we have a certain diagnosis that will help steer my search a little more.
Demi has started Occupational therapy and has also been seen by a physical therapist! We are so excited about our therapy team and the achievements to come for Demi!
Please pray that Monday goes smoothly and her pain is minimal and her team is prepared for her needs, that her mommy and daddy make it through that pre op and post op time as the strong parents she needs. Pray that the eye surgeon can help improve her vision and that we get to a firm diagnosis for her. Pray for Gods will to be to give Demi vision and a healthy neurological system. Pray for Demi’s brother, Beau, through all of this.
We really are so faithful and believe Gods work will be done through us but are also human and have some very difficult moments. Today has been hard but tomorrow is a new day. Seeing this baby girl smile at me is all I need!