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Well, it’s been a while since my last post. Luckily, Nathaniel has managed to remain “seizure free” since January 29th. I think the Ketogenic Diet has made a huge differance. Unfortunately, we just spent nearly 2 weeks in the hospital. On the 3rd, Nathaniel was admitted in the hospital for respiratory distress. Turns out, he tested positive for Rhino, Metapneumo, one other viral infection, and Pneumonia/Bronchiolitis…..which triggered his Asthma. We started out on one of the regular floors but had to be moved to PICU, where we spent the majority of the time. He was given steriods, IV antibiotics, along with albuterol & hypertonic saline treatments, followed by CPT, and deep suctioning every 4-6 hours around the clock. He definitely was traumatized. I felt so bad because he fought EVERY time and had to be held down EVERY time, but he really needed it. Now, any time I say “no” he just pouts and cries, cries, cries as if I’ve just spanked him. He has gotten a little less emotional, but he sure is a different baby. Luckily, he was released on the 15th. So, we can add another “holiday” to our hospital stay 🙂 It wasn’t bad though.
As far as accomplishments, he has improved in some areas. When I sit him criss-cross-applesauce, he can sit straight up if I hold his inner thigh. He babbles more….sometimes more than others. He just started saying “Ma-ma” and knows that it’s me. He can anticipate things better. Like when I sing “Ring around the rosie,” he knows he will fall back when I say, “Ashes! Ashes!” and just cracks up; or when I sing “Patty cake” he laughs before I say “Roll’em up! Roll’em up!” His little face scrunches up, his slightly flattened nose from the cleft-flattens a little more, and he smiles this big smile and it’s so cute. Since starting the ketogenic diet, his oral intake was decreased by the dietician and he had forgotten how to eat. He would just chomp, but forgot that he had to swallow, so I pretty much stopped feeding him by mouth 🙁 Which was sad for me because he LOVED food and to eat. But I recently started feeding him again-without asking BTW-and he’s done so much better. He watches and waits for the food….all protein, no carbs of course and he LOVES IT! He is now 2yrs & will be 5mths on the 8th and is approximately 22lbs, but he feels so much heavier. He still has PT 2/week, OT 2/week, Speech therapy 2/week, SST once a week, and Craniosacrial Therapy once a week….busy, busy, busy. Don’t know how we do it, but we do……don’t know how I always manage to have gas!!! I’m glad to say that even though we had this last hospital stay and there were moments that were pretty scary, things have been pretty good. He has done so well, and I don’t expect anything else. I know he will continue to thrive and surprise me more and more, but I still and always will wonder what will happen next.