Wednesday, February 29, 2012

Fun Week

This week has been a fun one. We played at the mall, went to MOMS and ECFE class, had some playdates with a new friend and her 2 year old and played outside in the snow. Today was a snow day, we got about 6 inches overnight, so I took Dawson outside while Gabriel napped. I got the snow off our cars and switched carseats back to the van. Dan had used it the other day. Then since Dawson was still climbing piles of snow I started getting the snow off everyone else's car at our apartment. It was good exercise! I was pretty tired by the time I was done and Dawson was happy and tired too. It's interesting that 2 days ago Dawson was riding his bike around outside and today he played in snow hills. Hopefully we'll go back to our mild winter soon.

We still went skating tuesday night. We were the only people who came! After a while a couple of the manager's friends showed up, but it was interesting having the place to ourselves. Dawson loved playing with the girls too. They got a new Toy Story video game and Dawson handed me the controller so I was playing it. Was so funny, I haven't played video games in a while and never an x-box, so I was trying to remember what button did what and I had 4 toddlers shouting directions at me! Dawson was just going along with whatever the girls were saying. It was so funny, I was almost laughing too hard to concentrate at times.

Last night I had a dream about a tornado. Ironic since overnight there was a bad tornado in IL! Of course my dream turned into bad guys attacking us and I was trying to charge and throw balls at them. I guess that video game stuck with me! Dreams get so much more weird once you add your kid's stuff to the mix. I often wake up with the theme song to a cartoon in my head too. The other day it was Veggie Tales, and I'd only watched it once!

Gabriel is getting so big! He turned 11 months yesterday and he is now able to walk by just holding onto 1 hand. We were playing with some toys and he said "A" and "O". The other day he said "bubble" and "ba" for ball. He's saying "mum" more too now. It's so weird hearing him say and repeat things. I know we aren't supposed to compare kids, but he's saying as much as Dawson did at 2 1/2! He claps, waves, gives high fives sometimes. He climbs stairs, eats pretty much anything, he babbles at other kids too.

I have had a horrible headache for the last 2 days. It's just gradually getting worse, so I'm already dreading tomorrow. Nothing seems to be helping. Hopefully the boys will let me nap a bit. I'm really hoping there is school, because usually Gabriel naps in the afternoon and I can nap too.

Gabriel always sleeps in the corner of his crib, usually with his butt in the air.
 Books that are going to the hospital for parent resources. I was going through some unpacked boxes and realized I had a lot of cancer books!
 Dawson decided this would be a good place to have a snack. I've been cleaning out things and had this in the hallway for a bit for Gabriel to play with. He barely fit into the seat.
 Gabriel was helping me decide what's for supper. He was mostly just excited to see the door open, since there's locks on all the doors now.

 Sharing a snack. Dawson is getting so much better at sharing! He usually has to be reminded, but it's a big improvement.
 Yummy crackers
 Dawson was trying to get out of the seat. I'm surprised he was able to stand up. I didn't see how he managed to do that but he walked around for a little bit before he accepted he wasn't getting it off and let me help.
 Dawson wanted to watch some videos of Tyler. He loves watching them and is always smiling and giggling.
 He loves his brother so much. It's sad that all he has left is pictures and videos.
 He gets so excited that he can't sit still, so he gets up and sits back down many times.

 So excited. Tyler's videos are very funny. This is one of his favorites, the one he was watching. http://www.youtube.com/watch?v=sCLc8OxYAtk&feature=related

Sunday, February 26, 2012

32 Months of Tyler

Today was Tyler's 3rd birthday. All week it got harder to think about. As people have told me, I had a harder time during the whole week leading up to his birthday than I actually had today. All those memories came back, the good and bad. It's also very hard because many kids that I know are finishing up treatment or their transplants and are doing great. I love that they're doing great, but it's hard thinking of how quickly things turned bad for us, after all that he managed to pull through previously.

For his birthday I wanted to do something. I took the kids to my parent's house and just had a nice day together. My sister and her fiance came, and one of my aunts made a surprise visit as well. Dan decided to stay home, he felt like getting something done and wanted to keep busy. So he did laundry, dishes, vacuumed, cleaned out the playroom and a bunch of other stuff. 

In honor of Tyler's birthday I wanted to post some pictures of his life. So I decided to do a pic for each month he lived. 32 months.

The night I went to the hospital for induction. Tyler was induced the day after his due date since he was measuring big and he was stubborn. He hadn't even dropped yet. I was so huge! Everyone I saw asked me if I was having twins.
 At 4:17pm on Feb 26th, after 14 hours of labor and 17 minutes of pushing, Tyler Daniel was born. 10 pounds 2 ounces and 21 inches long. He went home in size 1 diapers and a 3 month sleeper.
 1 month old! He was the best baby! Never fussed unless he really needed something.
 2 months old! So adorable.
 3 months old! He started sleeping through the night at 3 months. I felt like the luckiest mom ever!
 4 months old. Tyler had been diagnosed 4 days previously and was recieving his very first dose of chemo here. My big tough guy suddenly seemed so very small.
 5 months old. We'd already almost lost him at 4 1/2 months, but he came out of it strong and with a great attitude. Even with the feeding tube that he hated so bad and all the tubes and lines, he was still ready to conquer anything.
 6 months! He had been knocked down a couple times, so he had to re-learn to sit a couple times, but he kept on going strong! His Drs and nurses were amazed at his determination.
 7 months. Still in the hospital and not letting that stop him from smiling. It was his home now and he was enjoying life.
 8 months, at the Ronald McDonald House
 9 months, we got to take him HOME for a bit!
 10 months. We were home for Christmas! So exciting.
 11 months old and at the clinic.
 Happy First Birthday! We were home for his birthday party, though his actual birthday was spent at Children's clinic the entire day getting transfusions and chemo. But we had fun with the cake and presents. :)
 13 months. More exciting news! He started Maintenance and got to have his hickman line removed. This was the last day he had the line.
 14 months. Finally eating real food! He had no appetite or desire to eat until this point.
 15 months. Having a blast at home. He woke up happy everyday and was just so fun to be around.
 16 months. Spending his days with Dawson was the best thing ever. They adored eachother. When they weren't fighting over toys. ;)
17 months. Tyler got to walk the Survivor Lap in Relay for Life. He was by far the youngest survivor there.
 18 months, more days at the clinic but we were mostly home.
 19 months. Loving the outdoors! We made a point to get to every park and cool outdoor place in town. We had the best summer and lived life to the fullest.
 20 months. He loved walking around in the crunchy leaves.
21 months. Giving me his cute look. This boy was so adorable!
 22 months, having a crazy fun time indoors. We set up the plastic cube slide and he'd been sliding and running around. Thus the crazy hair.
 23 months. A very common sight, Tyler with his sippy, riding on his car. He loved anything to do with cars! We also found out this month that Tyler might possibly be relapsing.
 2 years old! He's just too adorable for words.
 25 months old. Got a new brother! Gabriel was a perfect cord blood match for him too! A very hard thing to find.
 26 months old. A 2nd biopsy confirmed that Tyler had relapsed and we went back to the hospital to get him back into remission and head for a bone marrow transplant, using Gabriel's cord blood.
 27 months. We got out of the hospital for 1 day, so we went to the zoo! He was so very excited to see the outdoors again, and animals too!
 28 months. Still living at the hospital. Days are best spent watching Cars and being with Dawson.
 29 months. Still here. We are very bored, but we are tough and can do this!
 30 months. We got to go HOME for 2 weeks! So exciting. I miss seeing the 3 of them together.
 31 months. In just 1 month he went from a happy, healthy (as you can be with cancer) boy, to the transplant, then quickly took a turn for the worse and Tyler ended up in the ICU. Intubated, sedated and paralized so he couldn't rip his tubes out.
 32 months, 1 week. Tyler was not going to get better. He was declared brain dead this morning and we went ahead with our decision to remove all life support and say goodbye. I got to hold him for several hours as he passed.
 It's nice to think that he is no longer suffering. He's in a happy place and will never have to worry about relapse, meds or any troubles again. It's just so hard being without him. I miss his smile and his giggles. He brought a lot of life to our family and was such an amazing little guy. I'm sure he had a great birthday in Heaven.
Thank you everyone who has been so supportive to us. It has helped so much. I have so many new friends and am so grateful for everyone in our life. Thank you to everyone who has checked up on me via text and on facebook today. It was so good reading all the messages. In honor of his birthday we've gotten a few people signed up for the Bone Marrow Registry, one donated her hair, we have a heaping bin of toys waiting to be delivered to the hospital. We are waiting on some more things that are coming.

Yesterday I was a total emotional mess, but today I end this day with renewed hope of continuing on and being ok. Talking to other parents who are many years out from their loss, they say you never move on or get over the loss of a child, you just learn to live with the pain. "Ok" takes on a new meaning. It doesn't mean we are truly ok, because living without Tyler will never be ok. It just means we are not on verge of a breakdown and haven't been a crying mess all day. That is our new "ok".

Wednesday, February 22, 2012

Sick

I'm not sure if it was something I ate or the flu, but Tuesday I woke up feeling very crappy. I was sick the entire day. I even weighed myself the next morning and I had lost 6 pounds! I was a bit excited to see that because that put me right at my first small weight goal. My next small goal is 15 pounds away.

Thankfully the boys haven't showed any symptoms of anything so far. Gabriel wasn't super happy with me being on the couch all day Tuesday, but he did pretty good. He's been enjoying Dawson's newest theraputic toy. Bean bag!

Gabriel was happy to try out the chair and watch some cartoons.
 Apparently it was a bit too comfy, he quickly fell asleep!
 Dawson had put this toy under the faucet and ran water down it, then it stopped working. I took it apart after a few days to see if anything was going bad inside and Dan ended up needing to solder a wire back together and get the thing put back together. If anyone has ever taken apart a musical baby toy with moving parts, this is not easy and requires about 4 hands. He got it fixed though. Was one of Tyler's favorites, he got it for Christmas last year.
Hopefully the rest of the week will go a bit better! Another thing that was on my mind today was the date. I wonder how long I'll notice the 22nd. Today marked 2 years, 8 months since the day we first heard "Tyler" and "Cancer" in the same sentence. I really didn't notice the date last month, but I think it's because of his birthday coming up. The days are slowly crawling by. 3 more days.