About 2 weeks ago we took Eli in to see a neurologist that was recommended to us by Dr. Shlafer. We were looking for a couple things. First, did we miss anything with the neurological workup Eli received at Seattle Children's and second, is there anything we can be doing right now to make sure Eli has the best chance to live a normal life as he grows up. There were two poignant moments for me during the visit with the neurologist. The first came when the neurologist was looking over Eli's records from Seattle Children's and noted that we had a very thorough workup and the doctor then mentioned how frustrating it must be to have such a pronounced case of hypotonia and no answers. In cases with pronounced hypotonia at birth there's usually a fairly significant underlying cause. For me, that just underlined the fact that Eli has some significant issues and challenges to overcome. The other moment was when Patricia asked the neurologist if he thought Eli would ever walk. I've never even considered the fact that Eli might not be able to walk but it's a possibility. We simply don't know what to expect at this point. We just have to keep praying and hoping that someday Eli outgrows whatever is wrong with him so he can live a fairly normal life.
Over the last couple weeks we've also had some issues with Eli's G-tube, specifically, the skin underneath and around where the tube comes out of his belly looks inflamed and possibly infected. Patricia has been cleaning it daily but it just doesn't look right. We took Eli in to the pediatrician and he said it looked ok so we're not sure. He told us to put some of the antibiotic rub on it daily but other than that it looked fairly normal. I still think it looks funny so we're going to ask at Eli's next clinic visit which is coming up in a week. In the meanwhile we're watching it close to make sure it doesn't start to look any worse.
On the positive side of things, Eli continues to get bigger and louder. He's making more baby sounds now and he isn't shy about letting us know when he needs food or if he isn't feeling well. He even started arching and trying to roll over when he's on the floor. I think he's really close to rolling over but I haven't seen him make the flop yet. Within the next week or two we expect he'll start doing it regularly so we're very encouraged by this progress. We also had some interaction with the Little Red Schoolhouse program sponsored by Washington State which provides physical therapy to children who are developmentally delayed.
Overall we're still watching and waiting. The boys love hanging out with Eli and Eli is especially responsive to Ian. Ian has such a gentle loving way about him and he really dotes on his littlest brother. Too bad that doesn't hold true for how he treats Obie... Ian loves to get down on the ground with Eli and he spends a lot of time talking to him and checking him out. Eli in turn stares at Ian and more recently Eli has started to babble and coo at him. It's been great to see the progress and the family coming together.
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