Tuesday, January 31, 2012


Monday was overwhelming. I was shaken up from a nightmare I had that night, which wasn't a great start to my day. When Tyler was sedated, it would sometimes wear off a bit and he'd wake up and start fighting his tubes and thrashing around. In my dream he had died and was at the funeral home, but he woke up and tried getting out but they wouldn't let him. I know this is partially just that experience of the sedation and also that grief of wanting him to come back. Wondering if he could've healed had we given him longer. Of course that answer is no, there's no medical possibility for it, everyone agreed without a doubt that he was far too gone to bring him back. Yet it's still a thought we sometimes think, and then have to reassure myself that it was the right thing to do. It's not even as much doubting myself and the decision as it is just wishing things were different, which is beyond our control.

We did have some happy potty news, Dawson was dry all night for the 2nd night in a row! He also took off his diaper and went potty right away on his own! I was daring Monday night and sent him to bed in underwear. He stayed dry all night and went right away in the morning! Tonight he's in a diaper though, since I'm not sure what his new laxitive will do.

We headed out for a mom's club playdate at 10am and Dawson did great! He requested bringing his LeapFrog handheld toy which he played with in the car and asked for about 15 minutes into our playdate. When he gets overwhelmed he does well going to that familiar thing to let him escape for a bit and have some time to himself. We also did some 2-piece puzzles. They had a letter on one half and a picture with the word on the other half and he had to match them up. He did great! Even when a girl his age decided to come join the fun he didn't try to push her away like he often does. He actually looked at her and was goofing around a little. It was really great to see. He lasted the entire 2 hours of the playdate this time. The first time he only stayed about 45 minutes before getting very overwhelmed. I saw him give a little boy a truck, but then he took it back away from him. He shoved a child but then gave him a hug and kiss without me asking him to. He saw the child looking sad and realized what he'd done. That's such progress!

After the playdate we put the benefit checks in the bank and since we were over there we stopped at the Short Stay clinic where we took Tyler for many appts. Everytime we could do something in town we went there, they worked with Children's. I gave them back our special VIP parking pass and saw the Child Life lady, but everyone else was very busy today. I was so bummed, they asked me to come sometime and it was tough going in there, but I'm glad we stopped by and that was just another little thing I'd been meaning to do. I brought Dawson to school afterward and had a chat with his teacher. It's great having someone who knows so much about the suppliments and gluten-free diet. She told me where to go for certain things so I decided to head to Cashwise afterward.

The Natural Foods section is part of the grocery store that I never thought I'd be walking through. I always called it "the expensive section". It sure is! Looking at all the foods there was just overwhelming. Some were gluten free but not everything. Thankfully they were nicely marked by the store and often on the boxes. The prices were just crazy, I'm used to shopping thrifty and suddenly I'm looking at a tiny $4 loaf of bread, or a $3.69 box of only 6 waffles. I'm just trying to remind myself we'll have that disability help for his expensive diet! Not only the price though, but just realizing how many things have gluten and how limited we are is tough. Only he will be on the diet, so things that Gabriel eats, like animal crackers, Dawson can't have but he asks for them. So it should be interesting.
Tuesday started out great. We made it to MOPS on time and had a nice discussion. The kids did great in the childcare rooms and I left emotionally refreshed and ready to tackle the day. We got home, got the kids some food and then I got really tired. Gabriel had woken up last night, first time in a very long time so I really can't complain. He seems to be teething again and just miserable. He spent the rest of the night in our bed, so I didn't get great sleep. He tossed and turned, didn't want to go back to bed, but wanted to sleep. He'd sleep for a while but I wouldn't because it was an uncomfortable position. When I moved, he'd wake up. It was just one of those nights. We were both tired and ended up falling asleep on the couch after he nursed. Dawson was watching his cartoons and all was peaceful. I woke up at 12:44. Crap! Dawson's bus comes at 12:42. Gabriel was sound asleep too and needed his nap so bad. I layed him in his crib and had Dan come in to be with him so he could sleep while I took Dawson to school. I was really kicking myself!

I seem to be jinxing myself a lot lately! Yesterday I told a friend that Gabriel hadn't woke up in the middle of the night for many months. This morning I told people that my day was off to a great start. Perhaps I need to stop bragging! ;)
A couple examples of gluten-free foods. Waffles.
 He likes baked goods, so I thought I'd try some cheese muffins.
 He wanted more pictures so we did that for a while. They love playing with this house!
 Gabriel is just the right size for the house.
 Cube slide!
 Gabriel loved being on the cube slide.
 This boy is too cute!

 Dawson wanted a picture with his Toy Story characters. He's just starting to watch some full feature movies now. Other than Cars he really hasn't, but he likes Toy Story and then he realized we happened to have some of the toys already.
 One of his favorite toys.
 He was trying to frown at me, but it's hard to frown and look serious when you're trying not to smile. ;)
Well I guess we aren't done with meds anymore. Here I thought we'd left that life behind, but it found us again. Hopefully Dawson's suppliments will help get and keep him healthier . The bottle on the left is Gabriel's vitamin, he had low hemoglobin so he needs an iron suppliment. The next one is Herb-Lax, recommended by Dawson's teacher. It's supposed to more naturally regulate the digestive system, clean out the gluten and keep things going. It smells nasty though, I'm going to have to get creative with getting him to take that. It smells like alfalfa and sure enough, it was one of the ingredients! The blue bottle is the Omega3 Fish Oil. Purple bottle is a multi-vitamin. Yellow is Melatonin to help with sleep. Green box is the probiotic powder packets. I was giving it all at bedtime but I'm going to start spacing them throughout the day to make it less overwhelming at night. I don't want him to really hate taking things! I'm afraid he might already start fighting me now because giving him the Herb-lax in just water tonight was a bad reaction. Before that he was always willing to take his stuff.
We got to go skating tonight, was nice to get out and chat with friends. I've been slacking on the exercise lately, but have noticed just from eating better I lost another 2 pounds, totaling 9 pounds lost in almost 3 months.

I can't believe these were taken a year ago. Seems like just yesterday! In reality, we had the new year, his birthday, new baby, then back to the hospital for the next 7 months. So most of the year was taken by the hospital. I hate that he suffered so much time inpatient. This is the time period in which I like to remember him. That year of fun, happy times during maintenance chemo when he was able to be at home. I love this mischievious little boy!
 I also miss this contagious smiley face! I can't believe tomorrow is February already. About 40 minutes and I get to flip the calendar to that dreaded month that is Tyler's birthday. The big milestone that everyone says is so hard to get past once losing a child. I wish we didn't have to be facing this so soon.

No comments: