Where Does the Time Go?

I started writing a blog update 6 months ago but never finished it. I will try to resume where I left off. Happy Birthday to Nathan. Nathan celebrated his 6th birthday on March 1st. It’s so hard to believe that 6 1/2 years have passed since he came into this world. I figured I should write something before many more months or years pass and I forget the details.

Nathan’s seizure saga continues. We can never get or keep control. We started him on another seizure med three months ago. I still have visions of reducing his anti-convulsant meds which could mean reducing side effects, lethargy, etc. But, we added on another one because we so desperately want to find some relief and each different drug holds an elusive promise of a better life for Nathan. So, he is now back to 4 anti-convulsants and is following the same path that he's been down so many times before. We get a honeymoon period after starting a med, but after a few weeks we go back to status quo. Sigh!

Nathan is getting bigger and heavier. His nutritionist and GI doc are very proud of him as he is finally at a good weight for height. He is starting “early puberty” (another side effect of cerebral palsy and possibly the anti-convulsants), so he is going thru an early growth spurt. With our bathroom remodel behind us, we are now dreaming of a converted mini-van and an in-home lift system , which of course continues to push out the kitchen remodel we wanted to do 6 years ago. Some of Nathan’s nurses will not lift him or push his wheelchair up the clunky steep metal ramp to get into our non-converted van. It is starting to be our warning flag to think about assistive lifting devices and changing our lifestyle overall. I also now have a bulging disc in my neck, which may or may not have been triggered by lifting Nathan, but definitely worries me as Nathan continues to grow.

Nathan had 4 baby teeth pulled a few months ago to prevent possible aspiration should they fall out on their own. He went thru it like the trooper that he always is, with only local anesthesia. He recovered great, and now we are anxiously awaiting his permanent teeth while we enjoy his sweet toothless grin. On the downside, his left hip has now completely dislocated. For those of you that have been followers of Nathan's blog for a few years, you may remember that we painstakingly decided not to put Nathan through a massive surgery that could have prevented dislocation. The decision was made when doctors warned us that he might not make it through the procedure or recovery. Fast forward to now - we do not regret our choice and so far Nathan is not in pain from the hip. Like all other things, we will deal with it when/if it happens. The dislocation is not causing any other problems at this time other than awkward sitting positions.

We have just spent our summer trying to live the typical family lifestyle. Kind of hard when you are not a typical family - LOL. For the most part, we have been successful despite all of the extra planning and preparation that is required for Nathan's medical needs on the go. We kicked off the summer with a long visit with my sister and her husband, where we spent most of our days playing in the pool. The pool remodel (aka - Nathan's Cabo Shelf) is working out great for him as he now has a safe place to hang out where he can enjoy the water with all of us. After that, we went on our annual Beach/Disneyland vacation with our dear friends. This year, we stayed in a house right on the beach in Sunset Beach. It was a fabulous location that gave us so much more flexibility with Nathan, without compromising Madison and Zachary's beach fun. As usual, we enjoyed Disneyland for a couple days. Nathan especially enjoyed his repeat rides on “It’s A Small World” offered by the fabulous staff from the Happiest Place on Earth. The ocean and sand is calming for all of us, so we spent days and hours just enjoying the simple things in life. After we returned from SoCal, we decided to try our luck with our 2nd annual trip to Lake Tahoe with Jim’s family. This trip, while shorter in distance and duration, is a little tougher for Nathan as accessibility and oxygen are both challenges. We were more prepared this year with plenty of oxygen, monitors, and a borrowed jogger stroller. It all worked out perfectly, although Nathan seemed a little sad to miss out on swimming in the lake with the other kids. The water in Lake Tahoe is much too cold for Nathan. The gap in activities that the kids enjoy is getting greater and we find ourselves making more compromises so that each one of them can experience the childhood that we wish for them. It was exceptionally hard earlier this year when we left Nathan behind for the first time ever to take a day trip with the other kids to go sledding in the snow – something we know that Nathan would have hated, but so sad to experience without him.

Nathan is starting his new school year next week, along with the other kids. I’m not really sure what grade Nathan is in, but for the sake of “labels”, we could say that Nathan is starting 1st grade. He will continue on his Medical Independent Study program where his teachers and therapists come to our home. It is always a bit hectic and sometimes overwhelming to have so many people parade through our home, but when I think about the alternative of Nathan attending school with all of the germs, I am thankful we have this option. Nathan is making slow yet steady progress with his communication devices and other school activities. It is fun to watch him so engaged with school and making progress in areas that no one believed he could just a few years ago. Nathan is out to prove all the "experts" wrong.

Madison and Nathan are beginning to ask more questions about Nathan as they get older. Madison wants to know if Nathan will ever get married. Zach wants to know if he will be “like” Nathan when he is Nathan’s age. He also wants to know how long Nathan will live. The doctors told us that Nathan wouldn’t live to see his 1st birthday and he is 6 now. So, what do you tell a 4 year old when you don't even know what to tell yourself. How does one explain the unexplainable? We believe that God has a path for Nathan, and for all of us on this journey. I’ve been at peace with Nathan’s health, diagnosis, prognosis, and the fact that he is growing, learning, and surviving despite all odds for six years now. There are moments, however, that take me back to the dark place of uncertainty and fear – Nathan lost a dear friend this year to pneumonia. He was the same age as Nathan. There are other moments when I take in the stares, the questions, the judgment, and the people that illegally park in the only “van accessible” parking spots and just pray for a more accepting world (or sometimes I just scream). Then there are moments that make me smile - like when the 7 year old girl who met Nathan last weekend said “I think he wants to dance”, not “what’s wrong with him?” as Nathan was moving his hands and feet to the music. Sometimes I drive myself crazy trying to figure out Nathan’s path, but I just come back to the mantra that we must take one day at a time. We are thankful for every day and every moment we have. We are thankful that Nathan enjoys “It’s a Small World” year after year. We are thankful for all of you – some of you whom have been part of our lives for many years, and others that we know because of Nathan. Thank you for reading this and for cheering Nathan on for another year.

Happy New Year

Dear Friends and Fam,

Happy New Year! I did not mean to leave you all hanging for so many months wondering how Nathan’s major medication changes played out. Time just keeps going so fast and every day brings new challenges or hurdles to climb for Nathan and the rest of us.

When I last left off, Nathan’s seizures had improved but his behavior had become worrisome. He was not sleeping (ever – it seemed), and was hollering out non-stop. Then, things improved dramatically for a couple months. We were at a very good seizure place, for Nathan. I never in a million years would have thought that 10 seizures per day was a good place to be. But, everything is relative in our world. Nathan calmed down and seemed to be genuinely happy. He began sleeping through the night (thanks to our friend, Melatonin) and staying awake/alert through the days. He was doing amazing in school - using 2 switches, smiling, playing, walking backwards in his gait trainer, using his hands for exploration, etc…

But then, gradually the honeymoon period of this new drug wore off. His seizures came back. Not quite as bad as before, but enough to begin making him more lethargic and less interested in the world. We chased the dosage of this medication, as we have done so many times in the past. But as history continues to repeat itself, chasing a dosage does not help.

During this period, his torticollis became worse and he began losing the ability to hit his head switch as frequently because his neck was so tight. This is critical to Nathan’s quality of life as the head switch is his access to the world – toys, communication, etc.. We decided to have botox injections in his neck to loosen this muscle and hopefully give him more head range. Now, many of you are thinking “cool – botox injections”. I was thinking about the risk of botox injections in the neck of a 5 year old. As always, Nathan was a trooper and did amazing. The injections did loosen up his neck which is great, but it caused him to lose a lot of artificial strength in his head. He is back to dropping his head all the time, and especially worrisome is the head dropping in his wheelchair when I’m driving him to appointments without someone else in the car to help. I’m back to pulling over on the highway to fix his head so we can continue our journey. We are going to wait another month to determine if we do repeat injections as the botox wears off about every 3 months.

Next on the ever growing list of medical challenges is that his adult teeth are ahead of schedule. Really? We are preparing for extraction of 6 of his baby teeth to make way for his over-sized adult teeth that are beginning to cut into the roots of other teeth. The dentist and his doctors think we can do this under local anesthesia in the dentist office, so we hope all goes well with that.

Probably the most worrisome news right now is that he, at 5 years old, is already starting puberty. This may be the cause of the worsening seizures, but we don’t know for sure. We still have to have him evaluated by a pediatric endocrinologist (another hurdle). But a few of the tell-tale signs are there which is pretty undeniable. We know that many children with CP enter puberty early, but 5 years old seems really unfair to Nathan.

For the good news. He has remained healthy over the holidays and the winter season to date. We finally completed our bathroom remodel for roll-in shower accessibility. This was so exciting for us as we never liked the downstairs tiny bathroom to begin with. It was hideously designed with tile, linoleum, fixtures, and wallpaper from the 80s, even though our house was built in the 90s. So, we got to design from scratch, knock out a closet next to the bathroom to give us more space, and build a roll-in sloped tile floor with an extra large shower giving Nathan, his caregivers, and the rest of the family the flexibility and functionality of a 'luxury' bathroom. Now, if only we could remodel the rest of the house…

This is the new year, and as I write about all of our challenges, I am reminded that we do continue to count our blessings and look forward to a wonderful 2011. We are blessed with 3 unique children, and wonderful family and friends that have helped us through everything on this unplanned journey. We are blessed to have kept our jobs (and health care insurance) this year thru the economic downturn. We know of so many tragic events that have impacted family, friends, and strangers alike this year and we try not to take a single day for granted. Nathan keeps showing us how to weather each storm with a sweet smile and so much unconditional love. He has brought amazing people into our lives and has helped us to understand that every day is a gift.

We wish all of you a joyous, peaceful, and prosperous year.

Love, the McCues