Well since they increased Jude's medication he is of course.......not eating. That's not a huge shocker huh? We have been down this road before! I have also noticed that the medication fog has increased. I really believe the seizure increase was brought on by the teething, so I am wondering if we were premature in increasing the med level. It seems like there are constant "what if's" when it concerns Jude. "What if this is normal, what if it's not, what if it's teeth, what if it's not", etc.
Today is Wednesday so we had Jude's speech therapy session today. It was very hectic for Mike to get Jude to therapy today. I think any time Mike has to take Jude somewhere his entire day is thrown off, and it sends him into a tail spin. Mike did say that it really helps him that I tag along on Wednesdays, and I understand that because two hands are better than one. I am also very glad that I can help in somewhere because I feel isolated at work sometimes. We chatted with the therapist about Jude's refusal to eat, and we explained we had been down this road several times with him, and we just hope there isn't a hospital stay involved. She then suggested another suck swallow test to see if Jude is aspirating in anyway. Jude needs another EKG too, so maybe after the holidays we will check him in for a night at the hospital. The therapist worked with Jude's mouth again, and explained he has low tone. The good thing is that Jude will bite down if you put your finger in his mouth, and he opens his mouth when she places her vibrating wand on his chin.
She suggested that we try to let Jude place his hands in his food, and then bring them to his mouth. Since he is beginning to midline we are hoping he likes the food on his hands, but if he doesn't she said that could show a serious sensory issue. I also requested a side spoon to see if Jude will try to maneuver it to his mouth, like he does his pacifier. Jude's therapist is very kind, and patient, and she seems to want the best for him.
Once we left therapy Mike seemed very discouraged, and told me he feels defeated. He said that he expects Jude to improve, and when he doesn't it's a let down, because it seems we take one step forward, and thirty back. I explained to him that I look at the fact that Jude is disabled, and that I don't "expect" him to walk, but I know it's a possibility. Therefore, in my opinion we just have to get him the best therapy possible to help him possibly achieve miraculous goals, because there is always hope. He said he sees things more black and white, and I see more grey. I guess we are all different, but hopefully we can balance each other out.