Thursday, June 14, 2012

Fun Week and Good News!

What a week! We had a fun weekend, I took the boy's to Tasha's house. I met her in the ICU during Tyler's last week. Someone she knew saw us on the news and told her about it and she looked us up, and realized we were just 2 doors down! So she posted on Tyler's Caringbridge, inviting me to stop by her room and say hi. It's crazy how we meet people! So very random and unexpected. She's been so supportive to us though, she walked us out of the hospital the night Tyler died. Not sure how we would've gotten out the door without her. It was exactly what we needed. One of several people who popped up at the perfect time that day. :)

She is a single mom of 2 boys. Tyler is 6 and Rilee is 13 months. Rilee was a preemie and needed a liver transplant before 6 months old, so he had a very rough start! He's still on a feeding tube, has a trach and needs monitors when he leaves the house. So I told her I would help her go somewhere. We went to Olive Garden with our 4 kids and it went pretty well! Dawson had an allergic reaction to the salad dressing on the 1 crouton he ate, but that was resolved quickly and the rest of the meal went very well. Anyone who has taken 4 kids out to eat knows that it going well just means nobody ended up soaked, lost, no dishes broken, etc. It was a fairly hectic and noisy meal, but we were happy that they were able to get out and about for once! Next month we are going to the zoo! We're all excited.

It's a bummer that people don't follow through with what they say. She, like I have, had many people say they would visit or do something, but nothing came of it. There are several people that I have decided to make plans with once a month. Would be more, but they live further away and that's an improvement from what we were seeing of eachother!! It's nice to have those people to look forward to seeing. I'm trying to see other friends more often too. Please contact me if anyone wants to do anything! There have been some I've been trying to call but got no answer.

Dawson and Tasha's son Tyler
 Rilee and Gabriel

 Rilee, I love his faces! He's so adorable. As you can see behind him, he has quite the setup! The bins are all medical supplies and the IV pole is full of monitors and other things he needs.
 Love this pic! That smile is so contagious.
 Checking eachother out. They are only a month apart, Rilee has really caught up with his size! At 6 months when I first saw him after his transplant he was such a tiny thing compared to Gabriel. It's great to see him looking so good!
 Dawson came up and gave me this cheesy smile! So cute!
 Me and Rilee
 Gabriel found a neat musical toy he was jigging to. :)
 I got Tyler's Memory Quilt in the mail the other day. I knew it was coming sometime but didn't know when. It caught me off guard a bit. A friend out of state offered to make this for us, she had done another one previously as well. I sent her the shirts I wanted her to use, the ones that meant the most and had the most memories.
 She picked out the material for the back. I love it, reminds me a bit of his bassinet bedding he had as a baby.
 She embroidered this on the back. "Forever Our Hero"
Tyler was limited to Onsie shirts, which were hard to find in 24 month size! He wore this one a lot.
 He wore this one during his transplant
 This was one of my favorites
 He wore this to his 1 year past diagnosis appointment at 1 1/2 yrs old, and on many other days.
 Material she picked out to add to the blanket. :)
 He wore this to his first day back to the hospital after relapse, and many other times. It was one of my favorites.
 This one still makes me smile at the irony. He was wearing it the day he broke his leg. He just had to prove it!
 This shirt was his newest one, so he didn't get to wear it a lot, but it is a favorite! He loved the giraffe in the door of the hospital and he was sure a Super Hero!
 Thomas! His PJs, he loved trains.
 Another frequently worn shirt
 He wore this one a lot toward last because it's a slightly bigger size and he was getting puffy from the meds.
 This one is funny because he roared at everything! The giraffe in the door, lion toys, the cow on the back of the milk carton...if it was an animal, it roared. :)
 Gabriel and the quilt, for a size comparrison. :)
 I filled Dawson's dispenser this week. We're using them for therapy rewards. They are quite motivating!
 We had a few extra kids over the other day. For having an extra 8 week old, 1 year old and 2 year old here, it was actually very calm.
 I got these wall plaques at Walmart for $3! We need some motivational things around, it seems to help. The weird shadow is just me, it's not really all blotchy.
 I finally got some frames filled up. These are on Tyler's memorial shelf with his urn. It is hard doing these projects. My chest physically hurts and it's hard to breathe, like something is sitting on my chest. Another friend who lost a child said that is very common, and is usually considered an anxiety attack. I never thought of it that way, but last week there was a day where I was shakey and just off for about 4 hours!
 I found this 3 sided picture frame at a garage sale! Perfect shape and just what I had in mind for his shelf. Finally got the pics cut today and in there. Before I only had 1 big picture on his shelf.

 Got this curtain at Big Lots, it will help keep the main part of the apartment cooler so the AC doesn't have to work so hard. The boys love it!! They went right to playing with it like they did with the curtain in the hospital. Only I realized Gabriel never did, that was Tyler playing with Dawson before. The shrieks and giggles almost sound the same.
 Ball pit! I found a kiddie pool on sale at Target, so I thought it would make a good ball pit. We haven't had one in almost 2 years because our actual ball pit popped. I also got the area rug at Big Lots because the carpet in that area gets horrible from heavy traffic.
 Dawson prefers falling asleep on the couch everynight. I'm not even sure if this is a battle I want to fight. I'd prefer him to fall asleep in his bed, but he screams and cries so hard, like he's scared of something. Not sure why but it disrupts Gabriel who also screams and cries and then nobody gets to sleep anywhere near on time! So I'm chosing my battles for now.
 He loves the ball pit! He dove right in when I set it up this morning. He was so excited! So was Dawson.
 I occassionally put Gabriel up on the deep freeze, he likes looking at Tyler's picture. He doesn't hit it like he does with other things on the wall, he gently put his hand on Tyler's chest and rubbed his face. It was so sweet. There is sure a resemblence between them too!
 Trying to remember this, as we have therapy everyday from 9am-5pm, and everything on this list! Dawson has made such a huge improvement! I try to think of that as he's having a tantrum or a tough day during therapy. Those tough times are getting shorter and further apart these days and I am thankful! It's tough having people in our home for the majority of the day. It's hard finding time to get groceries or see friends, unless they're willing to come to our place. But they have made a big difference in our life, so we must make a big sacrifice to continue the good changes!
Today Dawson had an eye appointment. He's been doing long squinty blinks when he's watching tv, which can be a sensory/Autism thing, but I wanted to rule out a sight problem first, since Dan has glasses. He did great at the eye Dr, they called us in and he jumped up and said "come on mommy, lets go!" He followed all the directions and did great. They dilated his eyes, which stung and he cried. We had to fight to get the 2nd eye done, but that was the only problem we had. At the end the Dr said he has perfect eyes! Such a relief.

We also got to play in our friend's pool this week. Dawson was nervous at first, but eventually he was walking all over, even in the middle! He is tall enough to just be able to walk and have his head and neck above water comfortably. Gabriel was not a fan of the water, it was still a bit cold, but he eventually got used to it and was smiling and splashing along with Dawson.

I'm looking forward to next week, which includes some new, exciting things!

1 comment:

annie said...

What beautiful pictures Stephanie! I love the one of Gabriel next to Tyler's picture.