Two nights ago, Ty woke up vomiting about 10 - 15 times. It was terrible. We were on top of all his medication and nothing had changed in his regimen. There really is no other explanation other than the unpredictable nature of his neurological disease. Last night, for example, he slept beautifully and didn't throw up once. I felt so well rested today for the first time in a very long time. I'm sure I'll ruin that by staying up until three or four tonight, only to be woken up by Ty soon after. I hope not, but that would be par for the course. I have insomnia so that certainly doesn't help.
Tonight? So far, so good. I heard something earlier in the night and ran in to check on him, but it was just hiccups! Phew! We'll see how it goes for the rest of the night. This is what caring for Ty has been like for almost the entire duration of his journey. We don't do anything different from one day to the next, yet we can never explain why one day might be so pleasant for him while others are so miserable.
One thing we all know for sure is, Ty Campbell is a fighter. And he is a love. And he is a goofball who loves to laugh. Ty loves life and there is so much fun that he wants to have.
I have spent a lot of time tonight trying to catch up on the hundreds of birthday wishes, muddy puddle photos, gifts and donations we received for Ty's birthday. Thank you! I am trying to write back to everyone, so I hope if you haven't heard from us you know that we are so grateful and you will hear from us soon. In the meantime, I will keep tonight's update very short so I can get back to your thoughtful comments. I truly enjoy reading each and every one. So much so. Everyone has been so kind and so supportive and it helps us get through these most difficult days more than you can imagine.
Ty had such a peaceful day today. Lou and I enjoyed his company and kept him comfortable. We suspect, however, that he can't really see the TV anymore because he insisted on keeping it off the entire day. Which is a blessing and a curse when trying to keep a now five-year-old entertained all day when communication is an issue. It's a blessing because we were able to read books, browse through toy catalogs, look at all of his presents and peruse his abundant candy collection. A curse because Ty gets so sad when we can't understand him and sometimes we are desperate for a distraction.
That really is one of the saddest things that happens to Ty. There are days (now, of course, but there have been other terrible periods during his long and courageous fight) where we just can't understand his speech. He just gets so weak and he is so neurologically compromised that he can't get the words out. It is so sad when he wants to tell us something but we just can't understand. We have gotten so good at translating his garbled whispers, but even Lou and I fail him sometimes.
Today was a good day regardless. It was quiet in the house, which helps in communicating with Ty. It also helps us to enjoy the peace that Ty brings us when we hold his hand or kiss his cheek. He took a nap in the afternoon which he never does, and I think that is why he was so calm throughout the day. He had little nausea, little congestion, very little head pain... nothing to complain about, really. We are so happy that he is comfortable and doing okay.
Today our smile of the day is brought to you all the way from Germany!! Judy! Urlricke! Thank you. As soon as we saw the International postage we knew it was from you. What a thoughtful and special care package. This reaction is priceless. Made my entire day to see how his face lit up.
Short and sweet tonight. Thank you for loving Ty and continuing to share his story.