***January, 2015 - ONE YEAR***
Happy New Year!
First, I need to step back into last year, and give a summary (update) from the past 5 months.
The kid's LPs have been going well, no problems. They have stayed at 200mg, and have not experienced any additional hearing loss.
Cody now drinks all liquids through a straw or a sport's bottle. Kayla was fitted for leg braces (FAO). She walks a lot better with them. The braces prevent her from tripping, and falling. We are still getting adjusted to them, and extending the wearing time.
One night in August, Kayla had a series of seizures. She had to be taken to the hospital by ambulance. She stayed in the hospital for 3 days. Her seizure medicines were changed. She has been doing better.
Every day we learn, and adjust the kid's life style, if needed. Both Cody and Kayla have had some falls, that resulted in minor injuries. They both require more assistance during meals, and grooming (shaving, brushing teeth, brushing hair). Let me make this statement: Scott and I step up to assist most of the time prematurely. Cody and Kayla continue to do all they can without asking for assistance, they define the word PERSEVERE. But as parents, we never like to see them struggle, and jump in to help.
Cody and Kayla have also had some fun experiences the past months. One trip to the NIH, scored Kayla tickets to see the band One Direction. Tickets were donated to the Children's Inn. They performed at The National's Statium in DC.
Cody has hooked up with one of the bands he likes, and sells their merchandise. He goes to the venues, where the band is performing, sets up a table, and sells the band's cds, stickers, ect. It is defiantly the perfect job for him.
We all had a wonderful Christmas. We looks forward to what 2015 brings to our family. Our family has hardships and struggles, but we continue to receive so many blessings from family, friends and mostly our Savior.
Here we are, January 2015. Sunday, the 11th, we will take our 13th trip to the NIH for the kid's Cyclodextrin LP infusion. This is Cody and Kayla's one year visit. Wow, we have made a one year mark. Does it seem like a year has past? Yes! Some visits went more smoothly, and quicker than others. Scott and I are so (so, so!) proud of Cody and Kayla. They are very well cared for at the NIH. All the staff is wonderful, and very gentle. But, the kids still have to be stuck with needles, go to appts for tests, be away from home, hang out in airports and airplanes to travel. I can honestly say, they do very little complaining.
The Trial: I do not want to put any incorrect information regarding the trial. I will give the facts I know about Cody and Kayla and any of the trial that effects them.
The trial has been going rather smoothly. Scott and I do get updates from Dr. Porter when ever they run across issues in the trial. They are saying they would like to see all the kids in the trial get up to 1200mg of Cyclodextrin. Currently, the other kids in the trial are starting to increase their dose on their one year visit. These kids had already increased to a higher dose than Cody and Kayla. Our kids had some hearing loss at the higher dose, so backed down to 200mg.
At this point, we are not sure how much this low dose (200mg) has helped Cody and Kayla. 200mg is a long way from 1200mg. When a higher dose (1200mg) was given to the lab animals, there were significant results seen.
Cody and Kayla will have their dose increased on this visit. They will go from 200mg to 300mg. One year ago, 300mg caused Cody and Kayla some hearing loss. We are hoping maybe they have built a little tolerance to the drug, and it will not affect their hearing.
Scott and I are given the question, do you increase our kid's dose in an effort to extend their lives, knowing that it could seriously impact their hearing, even cause total hearing loss? We can only pray for guidance, that we are making the right decisions for our children.
On Tuesday, January 13th, Cody and Kayla will be given an initial increase. Please say a special prayer on Tuesday for Cody and Kayla. Pray that the medicine will slow down the deterioration of their body caused by NPC, without an impact on their hearing.
They will have their hearing tested the next day (Wednesday). I will update this page as soon as we get the results.
We hope this increase goes well so Cody and Kayla can continue to increase towards 1200mg.
We continue on the road to a cure. We continue to persevere. We continue to keep our Faith and Trust in our God.