I didn't have any appointments for myself or for Jude today so I had a ton of errands to run at lunch. Jude was almost out of topamax so I had to replace that, and his Klonnopin. Last night Jude, and I went to sleep together around 10. When Mike came to bed he said he moved Jude to his bassinet, but I didn't hear anything. I guess I was exhausted after working, and the blood draw. Jude woke up like clockwork at 4am, and we could tell his movements were mimicking a normal seizure.....yet different. It's a bit hard to explain, but it was as if his body was going through the motions slower, and not as severe. He only let out one tiny yelp, and then the seizure seemed to subside all together. It was encouraging to see that yet again his seizures seem more controlled. Mike did go ahead and administer the Klonnopin just to make sure that there wasn't another episode. Mike called his mom today, and asked her if she could come over to help watch Jude while he got some work done around the house. I was very proud of him for doing this because he has been a bit withdrawn into the house. I guess it's true that men retreat into their caves until they emotionally feel better. We even discussed taking a small camping trip in April to get away from everything if possible. With everything hitting us we cannot go on the trip we planned this year so therefore we looked into an inexpensive camping trip. It will be nice to get away from it all, and just rest in nature somewhere. So the point is I think Mike is feeling more confident about everything. He still hurts when Jude seizes, and he still wishes this wasn't happening just like I do, but he is getting better. I did notice that the extra topamax dosage yesterday pretty much ruled out Jude keeping the paci in his mouth which he was not happy about. He was still a good baby overall, but he would just get aggravated every time his favorite possession fell out of his mouth.
So my friend Sarah at work had a good friend of hers fall ill a few weeks ago. I am afraid it doesn't look good, and they took her off life support. I feel for her, and I know she is emotionally exhausted. All I can do is quietly pray a miracle pulls through. I think the frustrating part is they just cannot find a final answer as to why this happened to her friend. It was sudden, in the middle of the night, and without explanation. So Sarah, and friends you are in our prayers.
I plan on continuing my blog about Jude for as long as I can so other parents that are new to this issue will be able to see the process. Since we are just going into the therapy phase, and follow up doctor visits we are entering a new chapter. I hope it helps others at some point!