Fall Update

It’s been a while since we have posted any news, but not for lack of news, just a lack of time. The tail end of summer was filled with travel, celebrations, construction, new beginnings, and daily challenges for Nathan.

First, the fun stuff. August was full of family celebrations – 7 family birthdays and an anniversary – so the social calendar was full (at least relative to what we normally get out and do). Tricia, Madison, and Zachary took a trip to Indiana for a visit with Tricia’s family and her 20th high school reunion. It was hot and humid and Tricia discovered Zach’s displeasure with travel and staying in new places. He is apparently a California boy and was not much for the sticky heat, but all survived and even had some fun adventures with tractors, museums, and rummaging through Grandma and Granddad’s cupboards. He and Madison both had a great time playing with Aunt Gloria, who is a kid at heart. Jim and Nathan had a great time bonding and enjoying the quiet home while they were away.

After they returned home, Jim had to readjust his sleep patterns from peaceful bliss to night-time disturbances courtesy of Zach. Zach enjoyed his 1st birthday celebration with swimming, BBQ, and lots of toys and clothes for the big 1-year-old. Tricia and Jim also celebrated their birthdays and 11th wedding anniversary with a rare dinner out without kids.


The middle of August marked Madison’s start of first grade at the neighborhood elementary school. She loves school and her teacher, Mrs. Reddington. She seems to be doing well and enjoys walking to school in the morning with Mom to start the day. Madison also got her first taste of cheerleading as part of a fundraiser for the Folsom High School cheerleaders. She and a bunch of other elementary girls got to perform at halftime of the freshmen football game. She loved cheering and was convinced that the girls’ routine was responsible for the team’s victory that evening.

Zachary recently graduated from the baby room to the toddler room at his day care. He loves playing “ball” with the big kids and is enjoying going outside in the sandbox and on slides (a perk of being a toddler). Zachary is also enjoying his own room these days as we had our dining room converted into den, so that we could turn our downstairs office into Nathan’s bedroom – a complicated way of saying that he does not bunk in with Zachary anymore. His new location is more convenient for him, the family, and the nurses who constantly carry him up and down the stairs. It also allows for storage of his many pieces of “big” equipment without consuming our entire family room. We are now in the process of redecorating his room with a jungle theme (out with the Sports memorabilia) and we will soon have a new medical bed for him to complete the comfort/convenience makeover. We are quite happy to be done with 2 months of intrusions of contractors, painters, etc. in our home. The new office/den is still a work in progress, but it has already provided a quality meeting getaway for Tricia to take her many teleconferences at home.

Now on to the serious stuff. Nathan’s seizures continue despite the ketogenic diet and new meds. Somehow, despite everything we do, they seem to get a magnitude worse each month or so. The mornings have gotten so bad that we have had to stop physical therapy, music therapy, and child development in the mornings. Luckily we have been able to reschedule some of these to afternoon appointments when he is not having as many seizures. He had his repeat eye surgery (for the blocked tear ducts). We are unsure of its success. We thought it worked after the 1st week, but during the 2nd week, his eyes got really bad again. Now they are back to being somewhat better. We see the ophthalmologist next week for the official test. The next procedure, if required, involves putting tubes into his tear ducts to help the drainage. We don’t want to go there, but alas... The worst news of all right now is that due to his vomiting and ketogenic diet, he has continued to lose weight. We are now at a crossroads for changing the type of feeding tube he has. The new type of tube puts the food directly into the small intestine versus the stomach (called a J-tube). There are so many serious “cons” of doing this, but none of them are as bad as him not receiving the necessary nutrition. We decided to wean him off of one of the seizure meds which we believe has contributed to his vomiting before doing this procedure. This has successfully stopped about 75% of the vomiting, but has not helped us put weight back on him. We are going to give it a few more weeks to see if we can make a change. It will be very difficult for him to go through pneumonia season without proper nutrition and some fat stores.

Despite the low points, we do think the change in meds and ketogenic diet have improved his overall alertness and strength. We have not seen a major change yet, but enough to feel optimistic that he might get some of the pre-seizure “Nathan” back.

We hope this update finds all of you healthy and well. Thanks as always for your support, thoughts, and prayers.

Love, The McCues (Jim, Tricia, Madison, Nathan, and Zachary)