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