Happy New Year, Friends! Nathan’s blog has somehow turned into an annual update - our last update was right after Nathan’s 4th birthday and he will be turning 5 in just another month. Wow! The good news is that we have not had much bad news to write about it. So, what better way to start the New Year than to reflect on the blessings we have had through 2009.
Nathan had an entirely hospital-stay free year. Yippee. Nathan has remained stable in most every medical facet this year. He has also grown a lot. At 40 inches and 35 pounds, our everyday life keeps getting more challenging as he still does not help with any weight bearing or shifting. Nathan probably had a few mild & undiagnosed pneumonias in the past year, but nothing that made the radar screen. He was suspected of having the H1N1 virus, but he came thru it like a champ. And since the diagnosis was unconfirmed, we even took him to wait in line with the rest of Sacramento at a county clinic for the H1N1 vaccine (which is another story that I won’t even delve into). Despite a significant worsening of his bone density and a severe osteoporosis label, Nathan has not fractured any bones this year. And although we still carry an oxygen tank with us everywhere we go, he has rarely had to use it except when ill and while sleeping. I’m afraid to unbolt the tank from his wheelchair in case that jinxes us into needing it. His apnea has worsened, and the docs are considering removing his tonsils and adenoids to help his breathing. We will be doing some more tests to determine if this would be beneficial. Nathan’s hip dislocation progression has slowed down which means we are still holding off on any major hip operation. We will continue to re-assess every 6 months, however he is already sitting sideways crooked and one leg is longer now due to the amount of subluxation of his left hip.
Despite all the good health karma we have had this year, the one constant that hangs like a dark cloud over us is Nathan’s ever worsening seizure disorder. Nathan will experience a few good weeks on the seizure front (which means <20 seizures per day), but then he will have multiple bad weeks of up to 100 seizures per day. This seizure disorder (Lennox Gastaut) has a nasty reputation and seems to live up to its name in Nathan. All the functional gains Nathan makes seem to get wiped out when the seizures escalate. Our lives often feel like the movie “Groundhog Day” – the same thing over and over. Or one step forward and two steps back which is worse than Groundhog Day.On the cognitive front, Nathan has been using an access switch placed next to his forehead for about 6 months now. This has been really cool to see progress. He uses this to activate adapted toys so that he can finally control (or play with) toys on his own. Unfortunately the selection of adapted toys for his functional level is not very diverse or exciting and is incredibly expensive.. He had initially started using his hands to push a hand switch, but he no longer has the strength to lift his hand, push a button, and release the button which are all crucial steps required to use a hand switch. Nathan also recently started using a communication device called the “Cheaptalk” for his school. I wish I could say this was working well, but it really
is not yet. The device itself is not the most intuitive and every time you want to change what you are doing, it requires re-setting the mode and messages. We are trying to use it to help Nathan learn to make choices between two things or activities, but he still has a long way to go. We know that Nathan understands a lot more than his body allows him to convey so we just keep trekking along giving him the benefit of the doubt. For awhile Nathan was regularly responding to the phrase “I Love You” with a 3 syllable response that sounds like “I OOO UUU”. Unfortunately, this response is not as forthcoming now as either he is becoming an independent almost 5 year old or his vocalization skills are deteriorating from the seizures. I know it is the latter which breaks my heart every day. Nathan continues to absolutely love being read to, talked to, snuggled, and listening to all sorts 
of music (and especially his music therapist, Anne). He also enjoys walking around in his gait trainer even though he still needs a lot of support and assistance to make much traction. We have finally made two gut wrenching decisions for Nathan’s course of seizure treatments. We plan to put him on a medication (Vigabatrin) that causes peripheral blindness. It has been offered to us for 3 years as a medication that holds the most hope for seizure improvement. But for 3 years we have declined it because Nathan’s limited vision is his peripheral vision. We have finally reached that desperation stage. Nathan will start this medication tomorrow when it arrives in the mail thru the FDA controlled pharmacy. The 2nd decision is that he will be going through surgery in a couple weeks to implant a Vagus Nerve Stimulator (VNS). This is a device that is implanted under the skin which delivers electrical stimulation bursts to the brain via the vagus
nerve every few minutes – similar to a pacemaker for the brain. We have delayed on this option for a few years also as the neurologists can only predict a best case seizure improvement of 20-30% and it requires a surgery with all the standard surgery / anesthesia risks. Again – I can only say that we have reached that point where we feel that any upside is better than where we are at, even weighing the heavy costs. The other good news for the year is that we are no longer battling with the school district (that is at least until next school year). We finally hired a professional advocate after fighting an uphill battle on our own for a year and a half. I think a combination of our advocate, the districts’ past blatant disregard for upholding the special education laws for Nathan, and a turnover in administration/staff enabled us to create an improved IEP (Individual Education Plan). There are many other options that we would
like for Nathan, but for now we are pleased that the district finally provided assessments whose results semi-accurately reflect his abilities. Based on these results, we now have him on a “Home Hospital” program where his teacher, speech, occupational, and physical therapist all come to our home to work with him. Although it is sad that he no longer gets the benefit of the social interaction at school, he is much more alert during his education sessions and is getting so much more out of it. It is personally tough having so many people parade through our home every day of the week, but the benefits for Nathan are worth it. Throughout everything, Nathan maintains the most easy going and sweet disposition. He is so accepting of new people in his lives – therapists, teachers, doctors, nurses, etc. and rarely complains except when he is ill. I wish I could say the same about myself (LOL). Madison and Zachary are both adjusting well too. Zachary has finally transitioned into a “big” brother role with Nathan where he is becoming protective and helpful. He loves to run wild with Nathan's wheelchair and we always have to keep an eye on what danger sport Zachary may enlist Nathan in when he is on wheels. Perhaps one day Zachary will run marathons with Nathan in tow. Madison is still extremely nurturing and supportive of Nathan. She is always cheering him on and will hang out with him for hours trying to entertain, make him smile, or help him play with a toy. She is convinced that she wants to grow up to become a "special needs teacher".
Our lives continue to be an amazing journey with Nathan for all the challenges and all the rewards. Thank you all for being part of that journey and for your thoughts, prayers, and cheers along the way. We will try to update after Nathan's surgery.
