It's been a while, once again, since I've blogged. It has been a time of so many thoughts and experiences that it's hard to find the words. I'll try to accurately write what's been going on.
First off, Jacob's EEG results have come back with somewhat negative results. His seizures are occurring in a part of his brain which have never seized before. According to our paediatrician, this makes sense for his condition, but it's not a positive one. We are once again faced with signs of regression. Where we go from here is an unknown. We are to meet with the neurologist soon to discuss our options. One difficult point regarding Jacob's seizure activity is that a typical EEG won't pick up any seizure activity from the brain stem. So, many of Jacob's abnormalities could be seizures but we have no way of concretely knowing. It takes a surgery to place a prod by the brain stem to read brain stem seizures. Considering surgery is basically not in Jacob's dictionary, this is not an avenue we are willing to travel. Once again we are called to live a life of uncertainty, from a medical stand point. It's a good thing we know that God has all things in His control and that nothing is hid from Him. What He wants us to know, we will know.
Jacob's had an increase in apnea (not breathing) spells. Yesterday alone he had 6. This comes as an enormous concern. They last for up to a minute, with his oxygen saturation levels plummeting to an extreme low! These spells also make sense considering the part of his brain which is so compromised, regulates breathing. If only there was something we could do about it.
His concentration of feeds have been greatly reduced to alleviate constant vomiting and retching. So far so good, but...his body needs more calories than we're currently giving him, so it feels like we are truly between a rock and a hard place. The plan is to slowly increase his feeds to find out when the intolerance kicks in. This step comes as a painful one because his smiles have returned. We believe he feels much better with a lower calorie intake. Time will only tell.
Yesterday marked Jacob's one year mark since his last pneumonia. Last year we had said our good-byes to him, we were watching him slip away from our grip, yet, one year later we are still able to love and care for him. What a blessing! What a gracious and merciful God, to supply us far beyond what we ever thought possible.
It's also been a tough winter with so many night nurses cancelling due to weather. This makes for long tiring nights and exhausting days. We just get our feet under us and then we get a call that the nurse isn't coming. Some nights we've been thankful she didn't come because driving was truly treacherous. It's sure been a long, cold, snowy winter!