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.