Potty Training: Kayli has had consistent bowel movements (pooping) and voids (peeing) in her toilet for a week now! At least once a day, she is put on her toilet and within 2 minutes she goes on the big girl potty! This is a HUGE accomplishment, we never thought Kayli would be capable of doing! The most amazing thing about it, is that Kayli is the one who decided she wanted to potty train. I simply put her on her toilet when she started holding her urine and stools all day! Since Kayli is effectively and consistantely using the toilet every day, I have decided to increase the amount of times I put her on the toilet. My goal is to put her on the potty every 4-6 hours now, to see if she is ready/wants to be completely potty trained. I do not expect to ever take her out of diapers, but our miracle girl never ceases to amaze me! <3
Ketogenic Diet: Kayli has been doing very well on the diet. Her seizures have already decreased in frequency, duration, and heart rate and oxygen saturation drops. She has gone days without a seizure while on the diet! Her Ketones are being checked daily now that she has maintained Ketosis. Her numbers are between 80 and 160 every time we check her Ketones. Her blood sugar levels range anywhere from 59 to 100. Those are great numbers, as we do not want her dropping below 45.
She has not been constipated (a common side effect of the Keto diet) and has been stooling on her toilet daily! Kayli appears to have lost some weight, as her thighs appear to be thinning out some. We have not weighed her recently, but we expect some loss with the diet. Kayli is currently getting 288 calories a day, down from 376 calories a day when she was on the Elecare formula. She has her Mommy's genes, where her metabolism is so slow that if she smells food she gains weight! lol Kidding aside, I hope to adjust her caloric intake to a higher amount once she is ready to adjust and stay in Ketosis. Eventually, we will try weaning her off her seizure medications, thereby eliminating the awful side affects of the medications.
We are keeping Kayli on her feeds all day today, because she is not to eat solid foods past midnight tonight, in prep for her upcoming surgery in the morning. Pre-operation instructions allow her to be on clear liquids (apple juice, water, etc) until 4 am but Kayli is not able to have any juice (sugar/carbs) while on the Ketogenic diet so she will have water. We will be bringing her Keto Cal (formula/food) so she can eat on the way home from the hospital.
Sugery: Kayli is going in for a bilateral Percantoneous Tenotomy tomorrow morning. This means both her heel cords will be released/cut in order for her to be able to move her feet into a 90 degree position. The new position will allow her the flexibility to stand in her stander, which will promote bone growth and strength. Standing will also promote good digestive mobility and provide a different perspective of life! Kayli loves spending time standing tall in her stander, a pastime she greatly misses. Along with the flexibility to stand after the surgery, Kayli will also gain the flexibility to wear many more shoes her size. Since she currently does not have the ideal foot range, she is not able to wear many shoe styles. While the general population takes for granted the ability to wear shoes in the winter, Kayli has not had the same abilities to wear proper footwear for the weather conditions. This surgery will allow her to fit in most shoes her size! She will be in casts (each leg) for 3 weeks. While under anesthesia, the dr will cast her for AFO's (braces) that she will wear daily, to maintain the correct foot positions.
Kayli needs this surgery because she was born with Club feet. She was born with her feet positioned in a prayer formation and her heels were not at a 90 degree angle. When she was younger, she had club foot surgery and the Ponsetti bracing, but she did not tolerate the serial casting and her treatment was not ideal. We are giving her another opportunity to correct her club feet while providing bracing support daily, which she tolerates better than casting.
Surgery: After the Tenotomy surgery, and while still under Anesthesia and in the Operating room, Kayli will undergo hearing testing. She will have an ABR (auditory brain response) test. This test will tell us more about her hearing capabilities. She currently has a hearing aid for her right ear, and we were told she has profound hearing loss in her left ear (so much loss that it is not worthy of a hearing aid). Kayli has had difficulty with her hearing and ear infections because she has very narrow ear canals (typical with a Trisomy diagnosis). As Kayli has grown and gotten older, we are hoping her ear canals have also grown a little larger/wider. We are re-evaluating her hearing process to determine her aided needs. Kayli is using an FM system at her school now and we are working on getting her the same equipment for home/life use. We do not feel it is appropriate to limit her hearing opportunities for limited school hours only. Once we have the test results, Kayli will be fit for new hearing aids, and a home FM system to use for her everyday life (not just during school hours). Since she only has hearing in one ear, she has lost the ability to differentiate background noise from someone's voice when speaking to/near her. The FM system will help, as it makes the voice talking to her louder and clearer than the background noises.
Please say a prayer for guidance of the surgeons' hands, for comfort when recovering from surgery, and for peace in our Lord's Will for Kayli. Thank you, and God Bless! <3