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.
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.
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.
