Caden’s swallowing ability still has room for improvement. He is still completely dependant on his g-tube for nutrition. While the picture below of Caden tasting a sucker during therapy and the birthday cake photos look like he is putting down the food, they do not show how it ends up coming out his nose a few minutes later.
We believe that we have two things that we need to work on with Caden’s swallowing. One is the skills required to swallow. This item is being addressed with therapy several times per week now and will be addressed more with a trip to St. Joseph’s Children’s Hospital, The Center for Pediatric Feeding & Swallowing Disorders located in Paterson, NJ sometime in the near future. Our recent visit to the Greenwood Genetic Center (GGC) confirmed that the Center for Pediatric Feeding and Swallowing Disorders is likely the best place for us to take Caden to get the latest information on how to move forward with Caden’s swallowing skills. The GGC has agreed to assist us with getting into the swallowing center in a timely manner. We have been gathering data for the swallowing center and will be sending that information this week. (i.e., copies of swallow studies, video of Caden eating, video of him playing, etc) The second big item we need to work on concerning Caden’s swallowing is his physical capacity for swallowing. His upper digestive track has worked better in the past after a botox injection to the upper sphincter of the esophagus (AES) and we have been shown no other suitable alternative to help his swallowing capacity.
Recently Caden has required more suctioning of secretions. His ability to pass food has not shown remarkable improvements recently either. These things prompted us to meet with Caden’s ENT (Ear, nose, and Throat) doctor. As a result we have scheduled Caden for another botox injection of the upper esophagus on Monday. This will be his third treatment in four months. The first treatment was done in August and resulted in Caden passing a swallow study for the first time ever. After recent discussions with the ENT we believe that this dose of botox will be the largest yet. The doctors say that they can not predict exactly how much will be used because they determine tat during the procedure. Please keep Caden in your prayers especially on Monday morning beginning at 7am. Even though this will be an outpatient procedure, he will receive anesthesia. We will be at the MUSC Rutledge Tower outpaitent area for this procedure.
Caden does something new every day or two that makes us laugh out loud. The picture below was taken a couple of nights ago at the dinner table. Caden scooted himself down while chewing on his strap. He then proceeded to reach up with his toes and play with his hair. He did not use his hands at all to pull his foot up to his head. Another recent funny action was when Caden used his chin to beep the horn on the steering wheel that is clamped to the swing. He would beep it and then wait until we looked and just start laughing at us and then do it again. God has definitely blessed this child with a sense of humor.
Big Brother Riley
You can see pictures and read about Riley’s fun day of flying by going to the Big Brother Riley blog.
Local News
The Lowcountry Christian Community School will be holding information meetings beginning this week. If you are looking for a school for your children in the Charleston area that is built on biblical values and strives to equip your children to serve God then you must check out the Lowcountry Christian Community School.
Our family and many friends know that we plan to home school our children. I can honestly say that the Lowcountry Christian Community School is the ONLY education option for our children in the Charleston area outside of home schooling. I encourage you to attend one of the upcoming information meetings to hear what Sherry and I have learned about this school. We are fortunate enough to know the organizers very well. All of the organizers have been very involved in our lives over the past couple of years and especially in this past year. They have been there for us in so many ways including prayer, unconditional love, and friendship.
Sherry has actually been able to witness some of their planning for this school over the past year. I can not stress how important it is that you go and hear for yourself what a blessing the Lowcountry Christian Community School is going to be to this area. The first meeting is Monday night November 14, 2005 and we hope to see you there. Click on the image below for more information including locations, dates, and times for the meetings.
Holiday
I hope you all had a great Veteran’s Day. Please don’t forget those who volunteer to risk their lives to make sure we have the freedom that we enjoy in this country. The biggest freedom that we have is to be able to worship God when, where and how we want without fear of being jailed by our government. Find a veteran or an active member of the military this weekend and just say thanks by giving them a big hug.