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)

A day In The Life - August

Jim and I both felt like writing updates this month, so please read below for Jim’s version of our summer and my version of life.

Where do I start? It’s easy to gloss over the feelings of the moment when we summarize our days, nights, weeks, etc. But in reality every day seems to throw a seemingly impossible mental or physical challenge our way. Here are the things I thought about and did yesterday. Just a typical day. This is very long… SORRY!

I wake up and watch Nathan have his morning seizures. His seizures (paired with his constant vomiting) still suck. We read and hear about all these different treatments, but with Nathan they have either been tried or seem too far fetched. I’ve been reading about stem cell treatments in places outside the US. Not only are they hundreds of thousands of dollars, but do they work? Could they work? And if they do work, for how long? Do they work to improve his seizures, regenerate parts of his missing brain, improve his eyesight, enable him to walk or talk, fix his GI system? I can find a success story for each scenario, but not one for all of Nathan’s challenges. Do we choose to pursue something like this and sacrifice the money and the time with our other children, our jobs? I’m obsessed with his seizures. I think if we could control them, he would start progressing on his development. Maybe yes and maybe no, but he can’t do anything when he is seizing all day. I know each one is a set-back. There are days that he still has hundreds, but we don’t see them all. How do you handle hundreds of brain set-backs daily?

I think about our friends and acquaintances that have children with other life threatening diseases who pursue any and every treatment constantly in pursuit of a cure. There is a direction, a vision, a purpose to every move they make. We read their blogs and cheer them on for their race for a cure, a better life for their child. I often wonder what the race is for Nathan, there is no prescribed roadmap or known possibility for a cure.

At 9am, I take Nathan to physical therapy where I engage in conversation with other families that have been relentlessly advocating to get their kids into the best school and best programs for their childrens’ physical and cognitive development. In case you are not aware, kids with special needs get to enter the public school system at age 3. As a matter of fact, you don’t really have a choice if you want to continue any early intervention services for your child. So, when Nathan turns 3 in six months, we must be prepared for all of the things we need to ask for, all of the services and educational/therapeutic opportunities that he needs. You may think that is 6 months away, but it takes that long to do anything in our wonderful (sarcasm) system. I’m already behind. These families also talk about taking their kids all over the world for hyperbaric oxygen treatments, intense therasuit therapies, and many others. Again, do they work? For some, yes. And you never know until you try. Should we be doing this? Are we giving him the best chance? Again, what race should we be running?

Nathan needs a medical bed, ramps to get into and out of our house so that we don’t end up with carpal tunnel popping wheelies into the house. I know there is other equipment, but I just haven't had the time to research or start the paperwork/prescription process and the clock is ticking.

Nathan’s eye surgery (for blocked tear ducts) did not work. We must repeat the surgery before pneumonia season starts again. The lady that does the surgery scheduling does not return my phone calls. We don’t have that much time.

At 11am, we see the dietician who tells us that Nathan has lost another pound. Not good news for him, but she is at least happy he did not lose more with all the vomiting. She tells us that he is 5 lbs shy of his recommended weight. I think – I’m glad he does not weigh 5lbs more than he does (as long as he stays healthy).

Nathan’s feeding pump is malfunctioning. Which means I must call Apria again. And they are really miserable to work with!

The receptionist at the endocrinology office berated me for being 2 months late on Nathan’s blood panel (to do a precautionary check for pituitary gland deficiencies). Not only that, but the office refused to cooperate with the neurology office who needs some of the same blood work done. So, after spending 2-3 hours trying to combine the tests, I gave in and decided to subject Nathan to giving twice as much blood just to make it work. The lab has their policies and procedures also. They decided poor little Nathan would have to come back for a 2nd time because they could not draw that much blood from him at one time. Why does Nathan have to suffer because the system is ineffective and each doctor really only cares about their piece of Nathan’s body?

The documents for Nathans’ services renewal were due. Of course, the mail must have lost them (because no one at the Government office could have made a mistake). If we don’t go down to the state welfare office today to re-submit, Nathan will lose his nursing care starting August 1st. Change of plans for the afternoon.

So, when Friday night rolls around and I go to the summer concert series in the park with the kids alone (Jim was playing softball), and some uninformed / insensitive person parks their car in the handicap zone (you know, the zone with cross-hatches that says no-parking) which “saves” the room for a wheelchair ramp, I decide to lose it. This means that I cannot get Nathan back into the van without pulling out into the street (which I do). Later, our friend, Avis, leaves a message on our answering machine that said, “we tracked down security and they gave that car a ticket”. I felt vindicated for one moment - it made me smile. KARMA! I hope it was not anyone reading our blog.

If you get this far, thanks for reading and thinking of Nathan and our family. You are all his cheerleaders on his race for quality of life and for that we thank you.