I’ll start with health. Nathan has had a fairly healthy summer with just three or four URI’s. The early summer fire season in California this year was rough on his respiratory system. The very smoky air caused him to spend more time on his home oxygen, but we’ve learned to keep him indoors when the wind blows. He started pre-school a few weeks ago and came home from his 3rd day with a 104.5 fever. Usually this is very bad news (read pneumonia). The doc diagnosed him with a sinus infection. I don’t know if I completely agree, but he was fighting some infection and his course of antibiotics seemed to take care of things. He stayed home for a few days and returned to school ready to learn. Aside from a runny nose and occasional fever since, he has been doing well.
Next – his seizures. This felt like a losing battle until about 2 weeks ago. All summer he had good days and bad days, but a lot more bad than good. He went back to greater than 50 seizures on a typical day, including adding a few new types of seizures to his repertoire, consistent with his syndrome’s prognosis. Nathan’s ketosis state has only returned in the last two weeks, so it is too soon to tell if it will stick yet. It took many months to get to ketosis when he first began the ketogenic diet, and then it took several more months to reap the seizure benefit. Bottom line – this is a never ending game of watching and waiting. He did have a great low-seizure week when we went to Huntington Beach and Disneyland. We’re not sure if it was the weather, the fun, or something unrelated, but we may have to move to Huntington Beach someday. About 2 weeks ago, his seizures did a major turnaround – perhaps related to his ketosis state. We are only seeing about 3-5 grand mal seizures each day along with a handful of absence seizures. I try not to jinx it by talking about it too much. And we really don’t know what has triggered the change or if it will last. It could be that he is in ketosis, better respiratory health (for him), the new mulit-vitamin he started (hooray for bugs bunny sugar free vitamins), stopping his allegra allergy med, or something else. What we do know is that we will definitely cherish every day and moment that he is seizure free (or anything less than 20 per day).
Now the bad news – his bones. Nathan was diagnosed with osteopenia after an x-ray of the lower GI system for an unrelated issue in June. The endocrinologist ordered a dexa scan even though they are not calibrated for children under 6. The dexa scan diagnosed osteoperosis which basically means he will easily break his bones. This is not what we want to hear, especially since Nathan has such a hard time expressing pain. As we learned when he broke his shoulder, he will not let us know specifically where the pain is, nor when it starts or stops. The treatment options consist of increasing his calcium & vitamin D intake as well as other meds or IV therapy. We will start the increased calcium/vitamin D this week after we receive the expensive “no sugar/carbs” version via mail order. We will wait to consider the other treatments. We have also now seen a few surgeons for his subluxed hips. The prevailing recommendation (1st, 2nd, and 3rd opinions) is to have a femur osteotomy which is the MAJOR surgery I mentioned a few blogs ago. It is such a tough decision, but we have temporarily decided to NOT put Nathan through such a rough surgery and 10+ week recovery in full body spica cast. One of the surgeons asked me if I could live with my decision if he did not make it through the surgery or recovery. That pretty much sealed the deal. She also said she was not sure she could live with herself if he did not make it through the surgery. Sorry, Doc – but your record and feelings are not my concern, although I get your point. We had new x-rays taken last week which showed that there has not been any worsening of the hips in the last 3 months. This is positive. Our overall goal for Nathan is pain avoidance and thus far, we don’t think has pain. We did spend 4 hours last Thursday getting x-rays and visiting doctors because we feared that he had broken another bone. He was (and still is) in pain from something that is intensified when he is “transferred” or lowered into his bathing chair. It is probably just a strained muscle as the x-rays showed nothing wrong, but something else to worry about.
The exciting updates - Nathan’s education / cognitive development. Nathan’s classroom got a new teacher this year that seems wonderful. She treats the children and parents with respect and has a curriculum geared towards the children’s cognitive and physical level. Wow! Nathan seems very energetic and engaged at school and still loves to ride the bus. He continues to say “ma-ma” and will occasionally grunt “yea” when you ask him if he wants something. Last week, his music therapist swears he said “arm” as she was engaging his arms in the music curriculum. This is all exciting stuff. When you walk away from him, he hollers out (he is showing a bit of his toddler side, now). And the other night during dinner, both Madison and Zachary were making funny noises and misbehaving. As Jim and I were trying to settle the other two, Nathan joined into the noise making session. I know all of this probably does not sound so exciting to many of you, but to Nathan and us – it is HUGE to see the cognitive side shine through the body that does not cooperate. The downside of his education is that the school wants to take away his home nursing. It is too hard to explain how/why in a couple sentences, but it is very possible that we could lose our home nursing if we continue to send him to school. So, unfortunately, if it comes down to school or nursing, we will have to pick nursing and keep him home. Wish us luck as we pursue what is likely to be a long battle…
And while we are on the topic of nurses, our Friday and occasional respite nurse took a new job somewhere else. She will still work occasionally, but we do not have any nursing on Fridays or on “predictable” evenings right now. Nathan is very attached to her and we miss her greatly, even though the new job is better for her. It has not impacted our lives yet since I have been off from work this summer, but it will be a big deal when I return to work next week. We did train a new nurse this past Friday, so we are crossing our fingers that she works out (we’ve trained some before only to have them never return).
Well, that is Nathan’s update in a nutshell. Hope this update finds you all well. Thank you for reading and caring/cheering for Nathan.
