Spring News

Dear Friends,

As usual, time keeps flying and we don’t get around to posting updates as often as we’d like – but we think of all or our friends/family often and thank you for keeping Nathan in your thoughts. For those of you that missed it, Jim did take some time last month to post a birthday update on Nathan, so check out his posting below.

Nathan has even bigger news this month. He started pre-school last week. It’s hard to believe that the day came for him to go off to school. We never imagined this when he was born and even as we’ve learned that Nathan’s life prognosis would be much longer than originally predicted, we still did not imagine him at school. So far, the school has exceeded our expectations, but our expectations were rock bottom, so don’t get too excited yet. They have a long way to go to meet Nathan’s and his classmate’s educational needs/goals, but it is a start. It is also a very bad time with the California (and thus education) budget crisis. The district faced with 3 pre-school aged children that are orthepedically impaired (OI), as well as medically fragile & cognitively delayed, realized (or were forced) to provide something more suitable than a “behaviorally” challenged special day class with kids that are walking, talking, and throwing chairs (yes, I did say throwing chairs). So, they created an OI class for the 3 boys. There are pros and cons of this and I won’t bore you with the details. But I will tell you that Nathan absolutely loves riding a bus to school – he smiles and coos and looks out the window while bumping along in the back of the bus.

He has participated in just about everything the curriculum has provided thus far including the computer (with an adaptive switch in place of a mouse), banging a big drum, and taking “appropriate” turns vocalizing with the speech therapist. They still don’t have an appropriate chair for him to sit in or other equipment that was promised. The teacher is still afraid of touching him and is openly dissatisfied with her first year teaching job in special ed with these OI kiddos. But the classroom aides and other therapists (vision, speech, occupational) all seem great with him thus far. Our hope is that the district will find a teacher with a passion & qualifications for this job & will continue growing this OI program in Folsom. I personally have really enjoyed my 4 days that I’ve spent in the classroom and think it would be great to go into this field myself. Maybe, someday. But back to Nathan - I look for a whole new world to open up to him now that he is not just isolated with the family, home therapists & his nurse. He seems to be thriving in his new environment (except for the cold that he has developed). Exciting times... Stay tuned.

Independent of school, Nathan has now said 3 real words. He said "Ma-Ma" to me the night I returned home from a 2 week business trip to Malaysia. He has continued to say "mama", although somewhat sparingly. He has also said "Anne" to his music therapist named Anne and "Hi" during a music therapy session when he was cued to say "hello". We keep working with him in hopes that he will continue using those words and pick up some new words along the way.

We are also happy to report that we have entered the spring season with only 2 winter pneomonias this year, requiring only one hospitalization. Progress!

Now for the bad news. Unfortunately, Nathan’s good news is usually watered down with some bad news. We are being told that he needs major orthopedic surgery to correct his hip joints which are subluxated. They have been progressing at a fast pace, so the docs think he needs this surgery asap to keep them from dislocating and causing significant pain. We will be going for second opinions and surgeon consults soon to help us make this heartwrenching decision. The surgery recovery alone is about 8-12 weeks in a spica (full body) cast. And the surgery is not a guarantee that his hips won’t go on to dislocate anyway.

Nathan’s seizures are still bad and inconsistent. We went thru a few months where his seizures were better than average. Which means he was having about 50-60 seizures per day versus 100 per day. For some unknown reason, he then took a downturn and the seizures got worse. Not only was he having more, but they were wiping him out more. Many times he’d just fall asleep right after one and need 30 minutes or so just to recover. His reflux worsened and he just didn’t seem happy much of the time. I can’t blame him. We made a few changes – added an allergy med & changed his reflux med at about the same time. We are seeing some improvement now in both the seizures and reflux, but can’t conclude that it is due to the meds. We have also decided to try a seizure med that is not FDA approved – clobazam. We just ordered our 1st 3 month’s supply from Canada. It is not cheap and, of course, insurance will not pay for a non-FDA approved drug. If it provides some seizure relief for him, we will stick with it and look for some alternative funding sources (clinical trials, manufacturer, etc..). If it does not work, we will chalk it up to another failed medicine and move on.

Other family side notes – Zachary had tubes put in his ears last month. It has already made a tremendous difference. No ear infection for the last month, sleeping better, and starting to talk more. Madison is growing up fast – asking how to text message, drive a car, and wondering when she will have her first boyfriend. She continues to be Nathan’s biggest cheerleader and best friend (or BFF). She reads to him and plays with him daily despite not getting much feedback from Nathan. It is so heartwarming to watch. She really has a special place in her heart for the “special” people in this world. If only her and Zach could get along as well.

I’m going on my sabbatical from Intel this summer which means I will be off from work for most of the summer. Lots of house & kid projects await. So does some restful sleep which has been rare lately. We are tentatively planning an excursion to Indiana to visit my family once we work thru the logistics of Nathan on an airplane (wheelchair, oxygen, equipment galore, etc.). We are also talking of a family roadtrip to southern CA again with our family friends. I should have more time to write this summer to share Nathan’s on-going adventures.

Birthday Boy!

This past weekend, we celebrated Nathan's third birthday. It's hard to believe that it has been three years since he joined us, but the journey has happened quickly. We celebrated quietly on Saturday (his actual birthday) with just the five of us at home and a few phone calls and gifts from out-of-town family. Then, Sunday, Jim's family came to the house for a celebration with food, drinks, cake, and presents.




Many thanks to everyone who was nice enough to celebrate Nathan's big day, whether it was by sending a card or gift, making a call, or even just thinking about or praying for him.




Now that he is 3, he will transition from Early Intervention to the school district for services (therapies, equipment, etc.). He is not actually scheduled to start going to school (he is set to attend a Special Ed class at Theodore Judah Elementary School in Folsom) until April 15 when the flu/RSV season is officially over. We don't know for sure how things will go, but we hope for the best. We had our Individual Education Plan (IEP) meeting with about 15-20 people crowded into a classroom on kid's chairs around a low classroom table to discuss how the school district would safely administer physical and educational/therapy services to Nathan. Aside from the district's inability to recognize the educational research supporting music therapy, the meeting went quite well and we left with some hope that the transition will be smooth.


Nathan continues to face his challenges and now has the aid of oxygen at night. It usually is set at a minimal rate, but enough to keep his oxygen saturation at an acceptable level. His seizures continue despite all of the medications and the ketogenic diet, but some days are better than others and we all soldier on with hopes that someday they will be managed.


He has been very chatty over the last month, cooing and babbling at length when he is feeling well. Nathan even says "Ma-ma" sometimes when prompted. It took a year of practice, but it was pretty clear. Now, I need to wait a year for ample time to teach him to say "Da-da."

In other family news (it's been 5 months since we posted anything on this blog), Zachary continues to grow his body and vocabulary. He is a handful with a bad habit of getting ear infections, but a joy to watch get bigger. Madison is enjoying the first grade and just celebrated her 7th birthday in February. She had a roller skating party with 11 girls (not recommended for adults hosting parties). The party was a hit, Madison had a great time, and Nathan even made the rounds at the roller skating rink in his wheelchair.

Right after Madison's birthday party, Tricia made a business trip to Malaysia for 10 days, leaving me home with the kids on my own (with lots of nursing help to keep me sane). All parties survived, but Tricia has been grounded, except for family trips until further notice.




All in all, it has been a very busy 5 months since our last posting: Jim's 20-year high school reunion; Halloween; Thanksgiving; Christmas; New Year's; and a 3-night stay at the hospital with Nathan's lone 2007-08 winter pneumonia (fingers crossed).


Thanks as always to everyone for your interest in Nathan and our family and for your support and thoughts as we move into Nathan's fourth year and next challenges.

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.

Summer Update

Summer has been hot in Sacramento, but full of travel and fun. We started the month with a relatively quiet 4th of July celebration at our friends, the Diffleys. Kids enjoyed water play while the adults enjoyed some BBQ, beer, and fireworks. Nathan and his buddy, Ian, were too sleepy to catch the pyrotechnics, but Madison soaked up all of the colorful and noisy show from a comfortable seat on the sidewalk.

The weekend after the Fourth, we made the trek down to San Diego with the Hockaday family. It was a lengthy van ride, but we somehow endured the hours and Zachary’s displeasure with being strapped into a car seat while we passed interesting sites such as the side of Interstate 5 and East Los Angeles. 10 hours after beginning our journey, we arrived at our condo on Mission Bay near Pacific Beach. The weather was perfect for most of the trip after a brief time with gray skies – low- to mid-80s and sunshine. Aside from enjoying the bay and the beach, we hit Sea World, Lego Land, and the World Famous San Diego Zoo (just a big zoo like most others, but it does have some Pandas). Everyone had a great time and Nathan and Zachary got their first dips in the Pacific Ocean. We were afraid that the cold ocean water would not be a favorite of Nathan’s, but he put up with Jim dipping his lower half into the waves on Mission Beach and in the bay. Zachary conquered the condo’s two stairs after a couple of days and was a challenge to corral in the condo and on the beach. The amusement parks were great fun for all of the kids and a nice return to childhood for the parents (although there was no such thing as Lego Land in the 70s or 80s when we were kids).

Just prior to our trip, we started Nathan on the ketogenic diet to take a shot at controlling his seizures some. The routine continues to change as the neurologist and nutritionist try to tweak the diet to find Nathan’s ketonic “sweet spot” for optimum seizure control. The tweaks continue and the ups and downs of seizure control can be very frustrating. Nathan also has had some bouts with vomiting (whether it is a virus or a reaction to the diet and other supplements is still a mystery) so our day-to-day stability remains constant chaos. But he keeps battling on and we hope to gain the upper hand on the seizure control at some point to give our little guy a break from all of his “activity.”

Madison has enjoyed more fun and travel than the rest of the family as she also took a trip to Disneyland with Uncle John, Aunt Kelley, and cousin Jennifer. They stayed at the Paradise Pier Hotel and hit Disneyland and California Adventure for three long days (Uncle John said that one day they were inside the Disneyland Park from 7:30 AM – 10 PM). Major props to John and Kelley for taking the girls and surviving with two 6-year-olds at the Happiest Place on Earth. Madison’s Sea World, Lego Land, SD Zoo, Disneyland, California Adventure funfest in a 3-week span rivals the amusement park travel many of us got in 3 years as kids. Who says today’s kids are spoiled?

To top it off, Madison will be going with Tricia and Zachary to Indiana at the start of August to wrap up the Summer travel agenda. The trio will spend time with Grandma and Granddad Axsom and Aunt Gloria and Uncle Kevin in the Hoosier State and Tricia will also attend her 20-year HS Reunion while she is back home. While the rest of the family is away, Jim and Nathan will be living the bachelor life back in Folsom. If you happen to participate in any poker game, BBQ, or swimming at the McCue home while Tricia is away, please keep it to yourself as Jim is attempting to make missing a trip to Indiana look like a sacrifice to redeem for later use (“I’m going to need only an hour or so for THIS fantasy football draft, honey. It really shouldn’t take that long.”).

Once the gang returns from Indiana, Madison starts up in the first grade at her new school (while Tricia gets to return to work). It seems like just yesterday we were trying to get words out of Madison and now she offers up plenty to point out anything and everything. Zach may not have a chance to get a word in with big sister around. Z-Mac has moved from cruising to walking in the last week. He usually gets about 3-6 steps before going down, so it is just a matter of time that he is running all over the house.

As Summer winds down, we will likely be back on watch to keep Nathan healthy (the warm weather makes things a little easier with fewer viruses that often develop into pneumonia in the colder months) and hope to get on top of the seizure control. Soon, we hope to have him moved to a bedroom downstairs – we are planning to convert the dining room into an office/den to open up our downstairs office/bedroom into Nathan’s bedroom/medical supply warehouse. Demolition is set to begin August 10, so we hope to have separate rooms for the boys in September.

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

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

June Update

Hello Friends!

These last 2 months have been fortunate in that Nathan has been healthy (and all of the kids for that matter). Of course, good health is a relative term in our household. Nathan has been free of upper respiratory infections and pneumonias for awhile. He was finally healthy enough to have his eye surgery today to unblock his tear ducts. It was a minor procedure. The only scary part was the anesthesia, but he came through like a champ (despite the 10 pokes for an IV). The doctor said this procedure is 90% successful, so we are hoping that Nathan will catch a break and be in the majority percentile for once. His blocked tear ducts have caused him numerous eye infections since birth and constant tearing, so we hope this will be a relief to him.

Now, on to the bad news. We have two pieces of bad news. The first – Nathan’s nurse & godsend, Sandy, fell 4 weeks ago and broke her ankle pretty severely. She underwent surgery last week and is still waiting to find out her recovery eta. We are assuming she will be out thru the summer, but you never know. She does come to visit occasionally which really perks up Nathan. She visited last week, and when I asked how she arrived, she said she drove herself. For those of you that know Sandy - picture this: Her broken, swollen, partially casted right foot was propped up on the console of her Lexus. The left foot maneuvered the pedals. All I can say is if you live between El Dorado Hills and Folsom, please watch out. Oh, and did I mention she broke a toe on her left foot while hobbling around? Besides an entertaining story, the impact of Sandy’s fall has left us with a daunting schedule. The first week, we had very limited help with our Friday nurse filling in where possible. Since then, it has been “nurse du jour”. Although we have liked all of them, except one, it has made life very hectic for us. Not only do the nurses need training every day, but they also want to chat and learn about Nathan and our family. Sounds sweet and endearing, right? I know this must sound ungrateful, but I have no more time to make “new friends” on a daily basis. I need “help” with no small talk. And I would prefer not to have to teach another nurse how to use a feeding tube / pump (each nurse requires training on this 3 times during an 8 hour shift). Don’t they teach this in nursing school? Most of the nurses have previously worked in hospitals. Don’t they teach this in a hospital? This should be one of the mandatory job qualifications. Unfortunately, we can’t live without the help and still juggle our jobs/other kids, so we take what we can get. It is better than nothing. And, the nurses really have been endearing.

Onto the 2nd bit of bad news. Nathan’s seizures have worsened. Just when you think it cannot get any worse, it does. He has multiple types of seizures daily. Hundreds of times each day. For the last few weeks, I have watched and held him while he has seized almost every minute for hours. How can this be? Why has it gotten so bad? We have so many questions that no one will ever be able to answer, although the neurologist explained that the seizures create pathways which enable more seizures. Nathan is missing his corpus callosum (the part of the brain that connects the right and left hemispheres), so it was quite a surprise when the neurologist suggested a corpus colostomy to remove this part of the brain. Apparently, pathways have developed between the hemispheres – enough to cause full brain seizures but not enough to give him the cognitive development we so desperately wish for him. Nathan is a trooper, but this is really taking a toll on him. He started a diet called the “ketogenic diet” last week which we hope will improve the seizures. It is a high fat, very low carb diet. It is also a very precise diet such that we have to measure the formula powder on a special scale to the prescribed # of grams. He cannot take many of the medications we give him including Tylenol, or any liquids since they are all sugar based. Our pharmacy is researching carb contents of all of his regular meds to find the right substitute. The goal of this diet is to have him in a state of ketosis. Doctors don’t really know why, but it has proven results of improving seizures in kids like Nathan. If you want to know more about it, feel free to google it – lots of info on the web. We are slowly transitioning Nathan to be sure his GI system can handle it so it will probably be another week before we know if this will give any improvement. We’ve been told of many success stories, but just like everything right now – we no longer want to hear about the statistics or the miracle success stories. As crazy as it sounds, the more success stories we hear, the more unattainable they seem for us. We just want to write Nathan’s success story. The neurologist has also mentioned procedures and medications that are in clinical trials now that may someday be able to help Nathan’s seizures. For now, we just hope that this diet gives him some relief.

For the fun stuff, Aunt Gloria & Uncle Kevin spent a week with us last month. As always, we had a great time with them. During their visit, we celebrated Madison’s kindergarten graduation. We are going to San Diego in 2 weeks for our first family vacation in a long time. We plan to go to the zoo, Lego Land, Sea World, etc.. Aside from some of the challenges (pushing a wheelchair thru sand and entertaining a baby on a 10+ hour car trip?), we are really looking forward to it. In August, I will be taking Madison and Zachary to Indiana for my 20 year high school reunion (where does the time go???). And in between, Madison will be going to Disneyland with Uncle John & Aunt Kelley. And then school will start up again. Whew!

Sorry no pictures this time. We have not gotten a chance to download any of our pics. Stay tuned…

April Update

Nathan has been busy this month. Although he has still not completely recovered from his chronic virus/infections, he has miraculously warded off another bout with pneumonia.

This month, Nathan finally got his wheelchair, van ramp, and easylock system. Don’t let the name fool you, though. Easy it is NOT! If we had chosen to spend $20K, we would have an easier solution, but we just can’t go there yet. Instead, we went the manual, low cost route. Our new “outing” process entails putting Nathan in his wheelchair, pulling the 5 ft / 25lb ramp out of the van, unfolding it, placing it carefully in the slider door, pushing Nathan & his 45lb wheelchair up (backwards) into the van, and jiggling him until the wheelchair locks into the floor mounted contraption. Then we still must pivot him around forward, fold up the 25lb ramp and slide it back in the van. The aluminum ramp then shakes, rattles, and rolls the entire time we drive. And when we get to our destination, we do the entire process in reverse, assuming we can find a van accessible handicap parking spot. The thing that makes it worthwhile (besides the obvious) is that Nathan usually smiles and coos when he is going up and down the ramp backwards - it's his own private roller coaster. And in the long run, it is easier than cramming him backwards into a baby car seat. I’ll personally be happier about it when the bruises and cuts on my legs fade away.

Nathan got a new neurologist and workup this month. This doc is a Hoosier who graduated from the IU School of Medicine, so he must be good, right? He specializes in epilepsy and is much more aggressive with treatment than his last neurologist. The timing was right as we are finally ready to try anything and everything before giving up on westernized medicine for his progressively worsening seizures. This new doc put Nathan in the hospital for a few days to run some tests and try some heavy duty meds. He referred to it as “shocking or resetting the brain”. Unfortunately, his great ideas did not work this time. Although Nathan’s brain wave patterns improved on the meds, it compromised his respiratory system so he could not continue. We left the hospital without a reset, but did get 36+ hours of EEG data showing what type and frequency of seizures he is having. Hundreds of seizures later (not to mention 30,000+ abnormal brain wave spikes), we have learned that he has outgrown infantile spasms. But, as the doc explained, infantile spasms often grow up to become Lennox Gastaut syndrome, the worst type of childhood epilepsy to have. We are not surprised as we were originally told that infantile spasms had the poorest prognosis of all seizure disorders. What does it all mean? Well, we will still never know until Nathan writes his own history. In the meantime, we stopped the seizure meds that Nathan has been on for some time - which are heavily sedating meds. We also started him on 2 new meds – 1 with serious enough side effects that I had to sign several waivers stating that I know this could have life threatening side effects and that we won’t sue. It is too soon to tell if either of these meds will make a difference. It is also too soon for me to come to any conclusions, but after having 3 really rotten, grumpy, non-interactive days, last Thursday Nathan had an amazing day. He was happy, coo’ed, sang, participated in speech therapy and played with a toy fire engine like he has never played with any toy before. We’ve learned not to expect too much, but it really gave us hope to see this side of Nathan again. Unfortunately, since Thursday, he has reverted back to his introspective self and is having a lot more seizures.

The rest of the family is hanging in. There is only one more month of school until Madison’s kindergarten graduation. Zach is trying to learn to crawl. He does not actually crawl or scoot yet, but somehow when you turn your back he gets from one side of the room to the other. He is fascinated with Nathan’s equipment & feeding tube, so we will soon have to fence one of them in so that we don’t have some type of major catastrophe. Everything else is going well. We are looking forward to the start of summer and swim season. Take care!

Spring Update

Spring has sprung! The weather here in CA has been warm and mild and we have been enjoying our time outdoors since the last update.

Of course, we have also had plenty of time indoors at appointments and in the hospital. As most of you know, Nathan spent a week in the hospital with pneumonia in February. Each pneumonia episode is scary for us and we thank all of you for your warm thoughts, prayers, and emails of inspiration. And of course for those of you that live nearby, we are so appreciative of the babysitting, meals, and helpful errands. After one week in the hospital, Nathan was sent home to finish recovering. It was a difficult road and we still can’t say he has fully recovered. Although I’m sure the pneumonia is gone, he has since had strep throat and other upper respiratory infections. He has “up” days and “down” days which we will never be able to put rhyme or reason with, but overall I would say he is reasonably healthy for him right now.

Madison celebrated her 6th birthday while Nathan was in the hospital. Somehow, we pulled off the girly princess party with no sleep, little planning, and single parent coverage (okay, we could not have done it without Karen preparing crafts the night before, Pam picking up balloons and cake that morning, and the other mom’s / Aunt Kelley’s help during the party). All in all the party was a success.

March brought an open house celebration for Nathan’s 2nd birthday. It seems incredible that two years have passed since Nathan came into our world. It’s been a long and interesting journey so far… Friends and family joined us to enjoy good company, good food, and good entertainment provided by Nathan’s music therapist, Anne. Although Nathan was suffering from strep throat at the time, he really rose to the occasion when Anne arrived to sing. He smiled, cooed, and sang along in all the right places. Nathan’s big birthday present this year was his wheelchair. We are a couple weeks away from getting the contraption to lock the wheelchair down in our van for transportation and a manual (~30lb) ramp to get him in and out of the van. It sounds challenging, but will be easier than what we have to do today to transport him.

Lately, Nathan’s seizures have increased (despite all the meds) and his good night’s sleep has been interrupted and shortened by his loud moaning (which sometimes stirs his roommate, Zachary). Not knowing what is going on and how it might be affecting Nathan is worrisome and may become more challenging. Nathan’s current neurologist at the UC Davis MIND institute will be leaving his practice, leaving Nathan and us on our own to find a new neurologist (from the shallow pool of local pediatric neurologists). He is set to see a neurologist who is relatively new to the Sacramento area and who also specializes in epilepsy, so we will keep our fingers crossed that the doctor’s fresh perspective might bring some new ideas and treatments.

Madison and Zachary continue to enjoy their school/day care arrangements, while Jim and Tricia try to get in a few hours of work here and there. We both have avoided big business trips so far in 2007, but Tricia has been carrying a full schedule of meetings with colleagues around the world that keeps her at work or on the phone during evening hours while Jim juggles the three kids at home (Zachary loves the TV remote, so the next step will be teaching him how to flip between multiple sporting events).
We hope everyone has an enjoyable Spring and we look forward to seeing and/or hearing from everyone in the coming months. Tricia is planning a trip to the Midwest in early August with Zachary and Madison, so keep your calendars open!

January Update

Hello Friends! Happy New Year! We hope Santa and Father Time were good to all of you this year! Christmas was nice and quiet for us, spent with family and friends.

January has been a bit of culture shock to us. I returned to work on Jan 2nd and am already feeling frazzled. I’m sure it will get easier once the routine really becomes routine. I’m happy to say that I am still gainfully employed at Intel and have been assigned to a pretty cool project. It will be a lot of work, but is much better than the alternative. Unfortunately, there will be some travel involved and I’ve already had to take a 3 day biz trip to Phoenix, which we somehow all survived. It is nice to have a break each week from the medical jargon, phone calls for services, and baby talk which had become my life for the last 6 months. I do miss the baby talk, though.

During my 1st month back to work, I’ve already had to take time off to take Nathan to the doctor multiple times. He continues to have re-occurring upper respiratory infections (ear, sinus, and eye infections) and in fact has never really recovered since his pneumonia in December. The pediatrician is desperately trying to find a reason for his continued sickness by running test after test to rule out possibilities. But, we pretty much know deep down that it is his medically fragile state that keeps him from shaking things off. The seizures have also gotten worse this month. He started having full body prolonged seizures on a regular basis in addition to the infantile spasms. It makes it harder to treat as the types of seizures respond to different medications. Of course, we still have not found anything to treat either type of seizure; it seems we just keep adding medications with no success. We’ve also added vitamin treatments and essential oils this month, but have not seen a difference yet. With the combination of the infections, seizures, and meds, Nathan continues to become weaker and floppier each day with little interest in interaction. The seizures have also caused more issues with his breathing. After a cluster of spasms, his breathing becomes very labored and stridorous, sometimes lasting for hours. I spend a lot of time thinking about his quality of life and just pray that he can start feeling better soon so that we can move forward. With my return to work, the holidays, and his illnesses, we have reduced some of his therapies. We dropped his weekly water therapy and he usually only has his physical therapy once per week. He still continues to have his speech, occupational, child development, and music therapy at home every week (if he does not sleep through them). Music continues to be his favorite activity.

Zachary is adjusting well to day care. He is rolling over, trying to sit up, and babbles constantly. We can’t believe how fast he is growing and learning. The excitement continues to be bittersweet in our lives. But it does prove how each new milestone is really a miracle and keeps us from taking anything for granted. Madison continues to love kindergarten and is doing very well. She still loves being “big sister” and is so thrilled that Zachary never tires of her entertainment (we are thrilled too as it occupies both of them). She recently told us that she thinks Nathan is “too serious”, I guess because he is not so easily entertained.

After 3 months of battling, our insurance has finally approved a real wheelchair for Nathan (don’t even get me started on why we had to spend 3 months justifying why he needs a wheelchair). We can’t wait to get it next month. I’m in the process of trying to get a ramp and a "power" wheelchair lock down system to put in the van which will make our outings so much easier. We have also begun talks with architects/contractors to turn our dining room into a downstairs bedroom/den. Our entire house is beginning to resemble a medical therapy unit.

Our family is excited for the Superbowl next week and the boys both have their full Colts gear to wear to cheer on Indy (compliments of Aunt Gloria). Next month starts birthday season for us. Maddie turns 6 in February and Nathan turns 2 on March 1st. It’s hard to believe. We hope everyone is doing well and we still love hearing from you. We enjoyed all the holiday cards and family pictures we received this year. It's so much fun to see all the kiddos grow up. Big hugs and kisses from all of us to all of you.

With love, the McCues

December Update

Hello Everyone and Happy Holidays. Again, so much time has passed and so much has happened since my last update. We were very busy with the new baby and visitors thru October. Then, November somehow came and went in a flash. And now, December seems to be doing the same.

We’ve had a lot of ups and downs with Nathan. We are on the 4th anti-convulsant medication for his seizures with no success as of yet. Unfortunately, each med has its own set of side effects and has worsened his personality and disposition. In fairness to the medical profession, the side effects could also be from the seizures themselves instead of just the medication. But, the seizures seemed to have increased since we’ve begun all the medication. We’ve also started trying a few more alternative approaches such as giving him vitamin B6 and doing cranial sacral therapy. The bottom line for Nathan though is that he has lost so much of the strength and development that he had gained over the last year to this crazy disorder. We hope that he can gain it back, but we must first get either his meds or seizures under better control. After Christmas, we will make the decision whether to do steroid therapy for the seizures which will be the worst from a side effect perspective, but has a much better chance of making a positive impact. There is another drug that is not FDA approved, but is widely used in Canada and Europe to control this type of seizure. The dilemma with taking this drug is that it has about a 25% chance of causing blindness or visual impairments. Since Nathan is already significantly visually impaired, we are scared to have him take a medication which has such a big chance of taking what little vision he has away. We pray for the right answer to hit us over the head so we can make the best decision for all of us.

This last week was a very scary week for us. Jim was on a business trip in Seattle. Nathan had (what we believe to be) some type of seizure that lasted 30 minutes. After about 10 minutes and a call to the neurologist, we took off for the ER. The seizure stopped by the time we arrived, but he developed a fever during the seizure, so the ER took it very seriously. The ER docs started running around doing multiple tests, including a spinal tap. There was a lot of talk of meningitis, pneumonia, and other types of bacterial infections. In the meantime, Nathan was completely listless. He did not even make a sound or flinch when they pricked him with the needle to numb him for the spinal tap or to start his IV – which seemed to concern everybody (including me). Hours later, the conclusion was double pneumonia with no evidence of meningitis. However, as of today we are still awaiting the results from the final cultures, just to be safe. He was admitted to the hospital, but was discharged the next evening after 24 hours of IV antibiotics, steroids, and observation. When all was said and done, it was not near as serious it seemed and the hospital staff was quick to treat what could have turned bad. However, I will never forget the feeling of helplessness stemming from the horrible prediction of Nathan’s life’s prognosis and the look of him so listless and frail. We had been so fortunate for a year that Nathan had not been seriously ill that I began taking it for granted. The harsh reality of juggling 3 kids, hospital ER’s, and news I was not sure I could handle hit me pretty hard – all while Jim was out of town trying to get on a plane to return.

Now for the good and fun news – we had very nice visits with my parents and my sister (2 separate visits) this fall. The kids had a great Halloween complete with costumes and trick-or-treating with Aunt Gloria. Nathan fell asleep after the 1st house, but Zachary and Madison could have continued all night. Zachary is hitting all of his developmental milestones, mostly early to my great relief. I’m not sure if I will ever completely relax without fear that Nathan’s issues are genetic and could somehow affect our other 2 children. Madison is loving kindergarten – she is reading and writing and has also joined the girl scouts. She is so excited for Christmas and Santa. Zachary laughs and smiles all the time. He is the most curious creature I have ever seen. His personality is really shining through. He especially enjoys watching Madison dance and be goofy for hours (well, maybe 45 minutes before getting bored). And, he FINALLY started sleeping for more than a 4 hour stretch at night a couple weeks ago – Whew!

I can’t believe it is time for me to return to work in 2 weeks. My to-do list is still a mile long, but I keep telling myself that the important thing is spending time with family and friends and enjoying life. We are back to the more normal events of our lives – going out to eat, going to the zoo, parks, playdates, friend’s homes, etc. I’ve even read a few novels. Today we took the kids to see Santa Claus (he was really a Shriners clown that moonlights as Santa during the holidays, so was great with Nathan) and we did a little bit of shopping. We are hosting Jim’s family and Nathan’s nurse & husband for Christmas Eve and plan to spend a nice quiet Christmas day savoring the true meaning and memories of Christmas.

We wish you all the best that the holiday season can bring you and will be thinking of all of you as we celebrate the holidays.

Love, Jim, Tricia, Madison, Nathan, & Zachary

October McCue Update

Hello Again!!!!

We are still here, although we’ve been in hiding lately. Things are very chaotic, yet exciting in the McCue household. I’m hoping all of you received our email baby announcement. Comcast (or Jim?) had some technical difficulties with merging our mail lists and the announcement did not reach everybody. In case you missed it, Baby Zachary William McCue was born on 8/14. He is now 2 months old – it’s hard to believe time goes so fast. He is smiling and cooing and just lights up our lives. It is amazing to have another chance at savoring every new milestone and the wonderment of learning that can so easily be taken for granted (he has already surpassed Nathan in several developmental areas). Zach enjoys interacting with Madison, but he and Nathan have not yet figured each other out.

Which brings us to Nathan. Right before Zach’s birth, Nathan began having seizures again. They really picked up after we came home from the hospital and now he is having about 25-50 seizures per day. They are a version of infantile spasms, which are not immediately medically threatening. However, we know that each seizure may cause a set-back in the brain. Since the seizures began again, Nathan’s sleep patterns have worsened and his daytime disposition is hit or miss. Some of the strength he had previously gained has gone away. We are going through trial and error with various meds to control the seizures and are on our 3rd medication with no improvement so far. There are a few more meds we will probably try before giving it a rest for awhile. There is no conclusive evidence on the damage these seizures can cause to someone that already has brain impairments versus the damage of the medication’s side effects (not to mention the quality of family life). So, we will just make our own decisions as we go. Aside from the seizures, Nathan had a very healthy summer and is just now on his first cold in many months.

Nathan has stopped eating again – also coinciding with the seizures. Given all of the stuff going on, it is almost a relief that we are feeding and dispensing medication via a feeding tube. He still has 8 weekly therapies and 2 additional monthly therapies. We’ve also been tacking on some extra specialist visits while I’m on leave from work to get them out of the way. Nathan still favors his music and water therapies and enjoys the great outdoors whenever he can be outside. Several of the therapies are now provided by Easter Seals where the therapist comes to our home (occupational therapy, speech therapy, and child development). It is such a relief not to drive him (and Zachary) around as much, but it is a double edged sword to always have someone new in your house everyday. I’ve finally gotten over the guilty feeling that I should tidy up the house before someone comes over.

Madison is in Kindergarten from 8:30 to 2:30, but it is amazing how fast that part of the day goes. I don’t know what we’d do without Nathan’s nurse helping us get to all of the appointments and relieving me when the whole house seems to be crying. Madison loves having a new baby and has become a great helper when she feels like it. She has even asked for baby #4 (not a chance, though!!!!). She goes through her own phases of acting out when the “Madison attention” factor is low. Understandable, yet challenging! If anyone has any secrets for raising 3 children and staying sane, please pass them along. We could sure use it. We’re also looking for a good night’s sleep, but fear that won’t happen for 18 years.

As far as I know, I am still employed despite the Intel lay-offs that have impacted many of my friends and colleagues. I plan to return to work part time in January, but it is still too difficult to envision how our household will operate when I go back. Jim is enjoying his (relatively) new job at EDAW, but will probably start traveling soon - all West Coast, but it will still be tricky for our schedules.

My folks visited for 2 weeks earlier this month and my sister and her husband will be coming for Halloween. It’s actually kinda nice to have the extra help and visitors in the midst of chaos. As always, we love hearing from and seeing all of you. It is friends and family that truly matter and make a difference in our lives and we are so blessed to know all of you.

With Love, Jim, Tricia, Madison, Nathan, & Zachary

PS – for those of you that sent baby gifts, but did not get a thank you yet, please know that we are enjoying those gifts and appreciate the thought. I’m averaging less than 1 thank you card per day in no particular order.

Zachary William McCue

Zachary William McCue

On Monday, August 14, 2006, at precisely 6:00 PM, Zachary William McCue was born at Mercy Hospital of Folsom. He checked in at 7 lbs., 8 oz. and 19.75 inches long. All of the McCues (Mom, Dad, big sister Madison, big brother Nathan, and extended family) and Axsoms are excited about the latest addition to the family.

Zachary spent his first night with Mom at the hospital and got some rest before his siblings were set to visit him on Tuesday. We are thankful for all of the support and positive thoughts and energy that our friends and family have provided for us during the last 9 months as well as the last couple of years.

It will be a challenge with three kids in the house (the parents are now outnumbered), but we look forward to the days and years ahead.

The McCue
Jim, Tricia, Madison, Nathan, and Zachary

Family Update

Dear Friends,

Hope you are adjusting to the heat of the summer and enjoying vacation season.

We are very busy these days preparing for the arrival of baby boy #2, due in less than 4 weeks. My pregnancy has gone well and now I’m just dealing with being big and uncomfortable (oh, and HOT!!!!!). I plan to start my maternity leave from work at the end of this week and hope to use the “extra” time to line up several more services and equipment needs for Nathan – not to mention cleaning, laundry, etc… I hope to even do a little bit of scrap-booking for Nathan’s memorabilia in between his 8 weekly therapies.

Nathan has had a good few months. Late spring was rough with several colds, ear infections, pneumonia, adjusting to a new formula, and new teeth. But, he has come thru it like a champ and is now well adjusted with 4 big teeth and more on the way. Along with feeling better, he has become much more active. His arms and legs are moving all the time. He can still only roll from his back to his sides, but he would like to do more if his body would cooperate. He enjoys being propped in a sitting position, and likes to bat at those really annoying musical toys that play the same song over and over (you know the ones that you swore you would never get for your own kids). So, lets just say that I spend a lot of time humming “this old man…”. He can now clap his hands together which is quite an accomplishment for him. He has started water therapy which he absolutely loves and we now spend quite a bit of time in our own swimming pool. He is eating less than ½ teaspoon of banana orally each day and absolutely loves it. We’ve got a long way to go to get off of a feeding tube (if ever), but it is great to be able to give him something else that he can enjoy. Cognitively – he is still about the same. He has several sounds in his repertoire, smiles and coos, and has started crying to let us know when he is bored or lonely.

We had a great trip to Indiana for Memorial Day. Nathan did wonderfully on the airplane and we even got bumped up to 1st class on one leg of the trip which made a world of difference in trying to juggle Nathan. We got to see lots of friends and family and Jim even got to go the Indy 500 with my brother-in-law (who, by the way, got the tickets from the winner of the race).

We are still challenged logistically by Nathan’s growing size and getting appropriate equipment to help get him (and us) around. We have postponed thoughts of several things until we get into a groove with the new baby, but I already know that pushing a stroller and a wheelchair at the same time is just not going to work J. I’m sure it is a matter of only one or two more years before we are forced to either move to a 1 story house or do some major remodeling, but we hate thinking about it now. Every day, I continue to fight with insurance companies, service providers, or medical equipment companies for something. I cannot believe how inefficient and ineffective these systems are. But, we just take it one day at a time, and eventually know that Nathan will make a difference in the system somehow.

Madison is starting kindergarten in a few more weeks and has been having a great summer. She talks non-stop about having a new baby, so hopefully the excitement will continue after he is actually here. Come to think of it, Nathan’s nurse, Sandy, is also very ecstatic about a new baby in the family J.

We look forward to hearing from everyone. Jim is insisting that I get more technologically hip and start our journal on a blog. So, after this update, I will attempt to change my archaic habits. Stay tuned J – our next update will probably be a baby announcement.




With Love, Tricia, Jim, Madison & Nathan

Indy 500

As part of our trip to Indiana, Jim went to the Indianapolis Motor Speedway to witness the Greatest Spectacle in Racing, the Indy 500. The tickets were arranged through the sister of Sam Hornish, Jr., who won the race in the second-closest finish in 90 runnings of the 500.

Brother-in-law Kevin and Jim settled into the seats near Turn 4 and caught all of the action along with a few beers (which you are allowed to bring in after you park for free!). The highlight of the day was Hornish's close victory, but the sights and sounds were amazing all day long. Especially enjoyed the friendly race fans who displayed Danica Patrick's first pole.

What is What's Up with the McCues?

Because we have not made time to create a website to post photos and to use as a forum to share news and information about our son, Nathan, we decided to give this a try. So, we now have a place to invite people to, so that they can see what's up with Nathan and the rest of the McCues.