day 2

Thought I'd post a little bit about Josh - he's a great kid, great sense of humor (OK, he likes the slapstick stuff most but, hey, he's a guy), loves to help out when he's in the mood to help, and, like most tweens, being in the mood is becoming rarer, and he is a real train fanatic.

Over the years, Josh has been diagnosed with verbal and oral apraxia, dysarthria, global dyspraxia, sensory integration dysfunction, hypotonia, cognitive delays, and last Fall was diagnosed with epilepsy. The last few years, docs have added the phrase "static encephalopathy" to his charts - although no one has been able to tell me what that really means. He also, because of some things that happened to him at school (I'm pretty sure this is the reason) and because he had 5 ER visits this past year (!) for various reasons, is now having psychogenic non-epileptic seizures. When Josh was born (during an F4 tornado!!!) he had sepsis - body temp went extremely low and wasn't taking his formula, etc. He was rushed to the hospital and we spent the first 8 days or so in the hospital. He came out of that just fine with docs saying there would be no long term effect (hhmm...), but stopped breathing while taking a bottle when he was about 6 weeks old. Another rush to the hospital, CPR training for everyone, and a sleep study showed sleep apnea. For the next 8 or 9 months, he was on a sleep monitor and caffeine. Again, docs said there would be no long term effect (again, hhhmm....). His first year, he came with me to the office pretty much every day since no daycare center would take a kid on a sleep monitor. He loved coming there, and secretaries at the office were incredible - if I had to take a call from a client or something like that, they would come get him and play with him. I spent a lot of time on the floor with him during that time - I would read my transcripts with one hand, and play with him with the other. Somehow, I managed to make my work quota, and he did OK.

By the time he turned 1, he was off the monitor and we put him in daycare. Colds and ear infections started immediately. We spent so much time at the ER with ear infections, we joked that they should name a room for him! We spent tons of money on amoxycillin and rosefen, too. When he was 16 months, he had an ear infection that somehow got into his blood and he had a febrile seizure - complex one that took almost 20 minutes to control at the ER. After medicos got it under control, doc was talking to us and, as he was leaving the room, said it sounded like there was another problem. Chest X-ray showed pneumonia and Josh was life-flighted to Peoria to rule out anything more serious. The worst 2 hours of my life was us driving to Peoria, watching the sky as the helicopter flew above us with our son. Fortunately, the MRI and EEG done in Peoria ruled out any other seizure disorder (at that time), the pneumonia cleared quickly, and things were back to "normal." Ear tubes followed a couple of months later.

During all this time, though, Josh was not meeting his milestones, just as he had not done during the first year of his life. During the first year, doc said the delays could have been from his size - to counter any effects of the caffeine, Josh had gone on rice cereal at a very early stage and he ballooned! If I recall correctly, he was upwards of 40 pounds at his first birthday - and not walking or crawling. He was starting to make sounds - he had most of the consonants, could say "mama" and "dada" but he lost all sounds with the febrile seizure. At 12 months, we told the doc we thought something was really wrong and took him to Easter Seals for evals - showed sensory integration dysfunction. The neuro doc in Peoria at 16 months added hypotonia to the mix. And, his speech therapist at about 2 years old suggested the possibility of apraxia - that was later confirmed at Shriner's Hospital in Chicago.

So, after working with him with PT, OT, SLP, and music therapy, he finally was able to sit unassisted at about 18 months. He learned to first roll all over the place (spatial abilities were amazing), then learned to army crawl. Interesting - he would army crawl all over my office except he would stop and refuse to go into the "alley" - a newer set of offices in the back where the carpet was the same texture but a different color. Man, those sensory issues are soooo weird!

When he was 3 1/2, on Christmas Day, he walked unassisted for the first time. He had been walking with assistance for about 6 months prior to that. The director of Easter Seals at that time, who had been a great friend and mentor during all this, would have Josh push the vacuum around and "clean" - great practice for walking and great therapy for him. For some reason, over the years, he has become oversensitized to the vacuum sound - he now wants the vacuum out, but rarely do I turn it on when he's home.

During all this, I was on the net, searching out info on sensory integration dysfunction, hypotonia (we even took a trip to Colorado where members of the hypotonia online group had an impromptu meeting and were able to meet with a neuromuscular doc from Oakland - she took a look at Josh and said he was going to be "just fine" - one the upswing of the average intelligence scales, but just fine). Then I found Lisa Geng and the childrens apraxia group. They were talking a lot about fish oils to help with speech. With Josh using only a "ba" syllable for everything, and after talking to his doc about it ("these are essential fatty acids - there's a reason they are essential!"), Josh went on fish oils on July 27, 2002. Within three weeks he was saying words! They were hard to understand, but he was communicating and trying to say more and more. He hasn't stopped talking since. He's still hard to understand, his articulation is not great, but he understands (and always has) pretty much everything and has a pretty large vocabulary.

Josh is 12 now - turned 12 on May 19. He has been in Special Olympics (divisional golds in basketball skills, track and field, bowling, and soccer; silver in gymnastics, track and field; State gold in basketball skills, silver in track and field, bronze in soccer - not bad for the kid the "evil doc" years ago who diagnosed him after 10 minutes as having mental retardation and said would never walk unassisted!). He loves school, has friends in his class, is starting to read sight words, does well in math (for his level), watches train movies, the AirBud movies, just started watching the Chipmunk movies, still likes Blue's Clues, loves his Gramma Bev and Boompah. He's been through a divorce with me, and a move from Ottawa, IL, to Hanover Park, and now to Crystal Lake where we have a beautiful house with a garden that surprises us everyday. We have two cats (Casey Jones and Burlington - do we see a train theme here??) who love to be out on our sunroom where they can watch the birds and chase real chipmunks around the perimeter.

Josh has had all sorts of therapies over the years - the usual PT, OT, SLT, music therapy, but also rock climbing therapy, aquatherapy, Sensory Learning, The Listening Therapy, and now will have some more private speech (I hope insurance will cover that!!), and this summer will attend, for one week, a camp at Bravehearts for therapeutic riding (along with a couple of other fun camps). If he takes to the therapeutic riding, it would be nice for him to continue with that - the stories that come out of that type of therapy are amazing and inspirational. The epilepsy appears to be controlled with Keppra - which, I hope, will be reduced and/or eliminated with the Nutriiveda (as in other cases that we have been told about via www.pursuitofresearch.org and www.childrensapraxianet.com) - we'll see. Josh is also seeing a psychologist for the non-epileptic seizures which, I hope, will better with the Nutriiveda. I'm more hopeful about him just having more energy and perhaps a speech surge - I'd love to see his articulation improve.

So that's my Josh, my guy. Right now, he's upstairs, contemplating coming downstairs for the day. Gramma and Boompah are coming today and I've got to mow the lawn (another noise he's not totally crazy about!). Day 2 on the low dose of NV is to begin - if he continues to not have a reaction to it, I'll up the dose tomorrow to 1 full scoop a.m. and 1 full scoop p.m., working up to the 2 scoops a.m. and p.m.