Just like the title we had another rough night with Logan. I have no idea why he has suddenly stopped sleeping again. It is now a fight for him to take a nap. He has started to whine, especially during the afternoon and night. Nothing stops him 😦 It breaks my heart that I can’t figure out what is going through his little mind so I can help fix it. We reached out to other SMA families who have had wonderful suggestions of extra bath times, massage, and Tylenol in case his muscles are hurting him. We tried a bath this afternoon and he was loving it! Until he wasn’t and went back to fussing. He just laid down for nap and went down incredibly easy. Fingers crossed he sleeps longer than his normal 30 min power naps.
I have been trying not to think about the surgery on Thursday. Although I just reminded myself I need to start packing…need to make a note about that. Anyways, I had the line of thought earlier of “this is the last Saturday Logan’s tummy will be perfect; the way he was made”. I had to shut that down quickly. I can’t think that way. This has been by far the hardest decision, but I know in my heart it is the right one. Logan has had a bit more trouble lately swallowing, especially if he gets upset. Giving him Tylenol is darn near impossible so the tube will assist in giving meds. However, knowing that this is the right thing to do does not remove my fear. When Logan went in for hernia surgery at 8 weeks, I was scared. Now at 7 months knowing he has SMA, I am down right terrified. Brett gets onto me for being pessimistic, but it is hard for me. I try to see the good, but at times like this it is difficult.
While things with Logan last night and this morning were rough, we had a great time with Ms Melissa and Ms Patty yesterday evening. Love them! They help Logan and read stories to him while we ate. Logan was fussy for a bit but settled down once his favorite touchy feely books were being read to him.The food was absolutely delicious! And it was nice have to have adult company to talk to since I don’t get out anymore. A huge huge thank you to all the ladies at the Women Center for being super awesome and so generous and loving! Love you all!!!
This morning brought an unexpected surprise. I have vented the past couple of days about the news interview gone wrong. Well, I received a phone call from the director apologizing for how yesterday’s phone call went and for the broadcast being wrong. He seemed very sincere and explained where everything got confused. I am so excited to say after much work, they corrected the video to show at the dinner tonight! They are also sending us a copy on dvd that should arrive next week. I am so excited to see it! If anyone is going to the dinner, please let me know what you thought of the video 🙂