Remember back in November when LittleK was inpatient at Children's Medical?
Remember back in January when we drove 2 hours to go to the ER to see a neurologist because LittleK was turning blue?
Since then, we have made multiple phone calls and a few more trips to Dallas for doctor's appointments with different specialists.
The last time that C and LittleK went to Dallas, they saw Dr. O. They got the results back from her genetic testing they had run back in November. What made my the most upset was that they had gotten the results from all of the testing done back in December, but we didn't get the results back until early April. From other doctor.
The verdict: a rare chromosomal mutation known as
The above link is probably the best one we've found. There are few others out there, but this one breaks it down the most. There really isn't a lot out there on this. We don't know what the future holds. All we know is that we will continue to love on LittleK and keep going with therapies. We can't change her genetics. We can't change her chromosomes. All we can do is learn as much as we can about this and advocate for her and get her the best help we can.
C and LittleK will be traveling this week to see a geneticist. We don't know how much more info we will get this week, but at least we are getting answers, which is better than nothing!
Like I said, as for now, we are continuing with her therapies and seizure medication. She is going twice a week for occupational and speech therapy. We hope to be adding physical back soon.
Please continue to pray for progress, safety for travels to and from doctor's appointments, peace for me as I'm not going to these appointments because of my work schedule, and for understanding for BigK as we are having to give her little sister more attention at times.
Also, if you can, please consider donating to our GoFundMe account to help with medical and travel bills. C and I are trying our best and cutting out as much extra as we can, but when we have to travel at minimum 2 hours one direction for doctor's appointments, it can get expensive quickly when we have other day to day bills to keep up with as well. Thank you!