FIRST SNOW DAY (MORE LIKE ICE)
This is a post copied from Serenity's Facebook page "Serenity's cause" on February 20, 2021:
Serenity is on her way back home now that this crazy weather is over. Mom and Dad are not in a relationship (other than parents) but decided together to stay in Houston until the weather passed. I think that was very responsible of the both of them and applaud their decision.
Last night Serenity gave us a scare. Mom called us to let us know that Serenity was having "micro seizures". She would roll her eyes into the back of her head and shake a little, then it would just stop just as quick as it started. I mentioned that maybe a visit to the ER would be in order and she called them to get their opinion. They asked her if she was crying, having labored breathing and or a few other medical issues to which mother replied no. They then told her that if she were to have another micro seizure, to bring her in immediately. From my understanding, there were no more instances of the micro seizures returning last night.
We were told not that long ago that the doctor who originally diagnosed Serenity, was supposed to be the doctor that the hospital in Houston was going to train to give Serenity her treatments locally in Plano Texas. Well over the weekend, that plan fell through. The doctor in Plano is refusing to go down to Houston and receive the training to be able to give serenity her treatments. While I do not know the doctors name, and even if I did I would not post it here, as I am still grateful to him for diagnosing serenity in the first place. We all have our limits. We do not know why this doctor’s limits fall just short of being able to give Serenity her treatments in Plano, but whatever his reason, it his own decision and we can not do anything about it. Our only hope now is that we may be able to find another doctor that can go down to Houston and receive the training to be able to give Serenity her treatments. This would certainly make it easier, and less costly for everyone involved to treat Serenity moving forward, but could also possibly be able to help others with Batten Disease who may find it harder to make it to Houston.
I posted a while back that this was going to be our new normal, but we’re still going through unknown territory. I do not think that there will be a “normal“ moving forward. I think that we will just have to do the best we can to care for Serenity and give her the best life we can. We ask for prayers that we will be able to find another doctor that can help Serenity locally, and that these treatments will stop the progression of the disease. Or at the least, slow it down to the point that it’s almost unrecognizable. We also ask that you pray that others that are going through life with this disease may be able to get the treatments that they need and be able to have more time with their family.
Thank you for your thoughts and prayers.