Brotherly Love

The boys had a webcam chat with my mom the other day. It was fun, I let Dawson be in Tyler's crib. They both love being in there together. Here's some pics from their chat.

This was from earlier in the day. He looks so sweet and peaceful when he's sleeping.

 Tyler loved getting a hug from Dawson!

 And a kiss too!

 Dawson is so cute!

 So is Tyler. I could look at his smiles all day. :)

 Dawson always has lots of fun chatting with Grandma! He likes to make faces and watch himself on the screen.

 He was being goofy and making faces at me

 Listening to Grandma

 Being silly with the camera

 Dawson watching tv

Beginning of May update!

I never seem to have time to blog anymore! Either I'm at the hospital where this site is blocked, or I'm at RMH, where I'm either busy or the internet is down. They seem to shut down the internet at night or something. They claim they don't know, but it's been this way since I was here last time!

Tyler has had a rough go of things, he's been in and out of the PICU and Dawson has been with us as well. Dan went home for a couple days and then brought my cousin Becky back to be with us. She's been such a relief!! She cares for Dawson from the time he wakes up until he goes to bed. I do get him breakfast if I'm up, but if I'm caring for Gabriel, she does it. She stayed with Dawson at RMH for the first week. We all ended up getting Rotovirus. First Gabriel and I, then Dawson, then Becky. Thankfully we're all better this week and we were able to go back to see Tyler.

Dawson missed Tyler so much. He had some crying episodes while I was away at the hospital, even though he has lots of toys here to entertain him. He talks about Tyler all the time, cries when I leave and says he wants to go see Tyler. I'm hearing more complex sentences from him lately. His speech has not regressed at all, but it seems that his behavior has some. He's been licking his hand when he's frustrated. He puts his hand in his diaper when he's poopy and other things like that.

Since we couldn't see Tyler anyway, we went home over the weekend and I helped Dan move some. That was hard work! I mostly unpacked and arranged things, but I did help move some big things, like the chest freezer and the Tempurpedic mattress. So heavy! I also did a lot of little things, like the whole kitchen, our bedroom closet and some misc things. The most that has to be moved still is the living room, some of our bedroom, kitchen table and some other things. Plus the garage, which will be a lot of work too! Dan is hoping to get the moving done this week so he can get back to work. I think he'll be cutting it close! I'm thinking of going home this weekend again to help out.

Dawson was a bit confused, but not too concerned when he came home to find his entire bedroom missing! We showed him right away when we got to the new place and he grinned and went up into his bed. I layed Gabriel on Tyler's bed for someplace to lay while I arranged. Dawson freaked out, saying it was Tyler's bed. He seemed upset, like I was trying to replace Tyler or something. The whole weekend he kep mentioning Tyler, like he wanted to go back and bring him home too. I wish!!

This is when I had the boys by myself. Dawson just wanted to play in the sink. I figured, why not, so I gave him a bath toy to play with in the sink. :)  Gabriel was pretty content in the swing.

 Tyler was feeling pretty miserable. This was shortly before going to the PICU.

 Just back from the PICU! He rode up in Gabriel's bassinet. I figured since it had to come back up anyway, Gabriel was in the stroller, so it would save space to put Tyler in there so we didn't have to wheel the crib up. There was one in his room already anyway.

 Cheese balls! He ate 2 bowls. Unfortunately this was the last time he was allowed to have them. He's been having diahrrea from the C-Diff, so they stopped giving him food since his diaper rash was becoming bad and he wasn't holding in any food anyway. He did get some today though, which made him super happy. Dawson got them out of the cupboard and gave him a few. Tyler was very grateful.

 Feeling a little better than he was the day before, but still not so great. He was pretty tired, this was about as perky as he got.

 Tyler getting his EEG. He was having weird seizure-like behavior. His pupils were dilating funny and he was shaking and having some moments of blank stares. Turned out it was all just from the huge amount of pain he was in from the chemo, steroids and everything. Poor baby. :(  They put him on constant morphine and that eventually stopped his shaking. He has now been weaned off the morphine and the steroids too, no shaking has started but he still feels cold. He seems to be having poor circulation, his body and head are very warm but his limbs are cold.

 Gabriel sleeping in his carseat at the hospital.

 Tyler cuddling with Daddy. He was so happy to see Daddy come back, he loves to cuddle!

 Tyler not feeling well. He has a few bruises from low platelets and he's pretty pale too.

You can tell by his face that he was in pain, but he was determined to stand.

All that wispy extra hair is now gone. He mostly just has a layer of short baby hair now

 Tyler's legs were kinda purple and mottled when his legs were cold. He also had a few lines to keep from stepping on!

 Gabriel sleeping on my lap

 Yay! I'm so excited. :)

 Tyler not feeling good. He was very tired and he's just been quiet and solomn for quite a while now.

 Finally! He's off the steroids, they weaned him off the morphine and he's back to feeling a little better. He was strong enough to stand up in his crib and even kneel on his own. Last week he couldn't hardly sit up by himself.

 A smile!!!

 This is still his usual face, concentrated on the tv

 But he had some smiles for his Mommy. :)

 Gabriel was laying on my lap, being content

 He was making some faces at me

 which is always amusing and very cute! It helps to have a cute baby to cuddle and coo at. :)

Dawson is here

Dawson is now with us at the hospital. Dan met my mom in Rogers and brought him back to the hospital. The timing was pretty bad, Tyler was in the middle of another meltdown and was just inconsolable. Dawson wasn't sure what to do, it went on for so long that Dawson got overwhelmed and teared up. A volunteer happened to stop by, so I sent Dawson out of the room with her. They went to the little playroom for a while. The day was very crazy, Dawson did ok, he was mostly just very busy going around the room and playing with things. Getting in and out of the crib a dozen times, opening the door and refusing to close it, which is an issue because it's a special air-circulated room and the door isn't allowed to be open for that long. I'm sure we'll have many door alarms going off from it being open too long. He loved going to eat, it's a long walk to get there and it's refreshing to get out of the room. I took him to Sibling Play for 40 minutes. He did good there and they have a lot more toys and things than the playroom on the Oncology floor does.

We moved out of the Days Inn on Wednesday and into the Sheraton. Then Thursday we got a call from Ronald McDonald House saying a room opened up, so we moved into there on Thursday evening. It's nice to be here again, much more child friendly! Dawson got to play outside and get some fresh air. He loved the playroom here too. Dawson is being much more social these days. He's been going over and saying "hi!" to everyone.

I'm a bit nervous about having Dawson there a full day, but hopefully between meals, volunteers and Sibling Play, he'll get out of the room enough and get some variety.

Tyler pulled the needle out of his port and the IV fluids infused into his skin tissues instead. He had a big squishy bump on his chest. Thankfully it went down fairly quickly.

 Gabriel got some tummy time on the mat today. He's been getting interested in looking at things lately, so Dan found a little train for him to focus on for a while. I brought his toy bar along, so I set that up when we got to RMH and I'm bringing it with to the hospital tomorrow too. Hopefully we can keep him awake a little bit more during the day so he and I can get some sleep at night.

 Dawson, after settling in and finding some toys to play with.

 Tyler was watching tv. He had a very rough day, so when we wasn't screaming and crying, we were pretty happy.

 This is his stroller from the hospital. They ordered it up so the nurses can wheel him around while I'm gone with my stroller. I actually prefer this one, it's much easier to handle a single stroller with the IV pump. He really likes being in there too, it seems to be his comfy place. He watches tv, eats, naps and plays in that thing!

 Gabriel in the bassinet

First Day in the Hospital

Today went well, I'm very glad I had Dan there though! Gabriel is such an awesome baby, he's been so content and that really helped. There were definitely times where I needed the 2nd person to hold him though. The nurses were awesome and brought me a little bassinet and a swing for Gabriel. They had a bed in there for Tyler, but switched to a crib since he won't stay in bed at night and we are leaving overnight. Tyler had settled down a bit when we left, so hopefully he'll sleep ok. They still don't allow the blog at the hospital, but they do at the hotel thankfully. My new blog header was made by one of my online friends. I keep getting credit for it, but it wasn't me! It's so nice and refreshing to have something so colorful and cute, especially since the other one still said I was expecting and needed to be updated anyway. :)

Tyler fell asleep in his chair sunday evening. He's been more tired and clingy, though his counts were actually pretty good.

 Tyler slept with Daddy at the hotel. He woke up a couple times, but fell back asleep after nursing. Thankfully he didn't wake up after his restrictions started.

 Gabriel napping next to me on some pillows.

 Daddy and Tyler checking out the cars going by on the road. Tyler was very impressed and could've stood there and watched them all night I think!

 Our hotel room, it's a Days Inn

 Tyler in his crib at the hospital. He was watching Thomas the Train

 The trains were crashing, he loves that part. I was very glad that he had moments of being very content just watching tv in his crib

 I got this cup/snack holder thing for the stroller, but I figured it would work well on the crib too. It's nice to have it there where he can't just knock it over. They have covers too, so I can just cover and open it up later for him.

 Gabriel's cute little hospital bassinet. I never knew they made them this small! It's so nice to have that there, it's a great height for changing him and it's nice to have a place to quick put him down or have him nap while I'm dealing with Tyler.

Tyler is Relapsing

On Friday, April 15th I got a call from an Oncologist about Tyler's biopsy results. The cancer is coming back, despite the chemo. Since I have his Caringbridge site, I'll spare the medical details on the blog. Since finding out, we made a plan to start treatment on Monday, April 25th. I did all the laundry, packed our bags and was ready to go before he even called with the official plans. I had prepared to head in the same day if needed. So since then we've been living out of the suitcases. We're going to Easter at my Grandma's house, handing Dawson over to my parents and heading to the cities to check into the hotel from there. They couldn't get us into the Ronald McDonald house, so we have to stay at a hotel 3 1/2 miles away until it opens up. Hopefully either that or the Sheraton by the hospital will open up quickly.

Kids pick up on stress so easily. Tyler has been very clingy and cuddly. Dawson has been getting into things and throwing more tantrums. Thankfully things were much better today, so I hope things continue to be better for him. I'm sure he'll love being at Grandma's house too, so he'll have that nice distraction from things.

On Thursday we're supposed to be picking up Dawson and bringing him to the hospital to be with us. We're hoping to get all the major meetings with Drs and the transplant team over with before then, since we both have to be there and it would be very hard to focus with him there. We are looking at having my cousin come stay with us to help out with the kids, mostly Dawson. I think it would be good for him to get out of the room more than he did last time.

Tyler has been doing great with his cast, he's putting a little more weight on it now. He takes a few steps while holding onto furniture and he'll stand without holding onto anything. He's been completely off pain meds all week and it doesn't seem to be bothering him at all.

Dawson ate carrots! Only once, the next time he just smooshed them into a million little pieces, but at least I got him to eat them once. He does better when he doesn't feel obligated to eat something, so I just set the bowl out in the living room and he dove right in!

 I can't help but wonder if he'll lose his hair. Last time he hardly had any to begin with, so it wasn't that noticable, until I looked back at pics and realized that he did look pretty bald. He's starting with spinal chemo, which often affects hair loss faster than the regular chemo does.

 Gabriel sleeping peacefully. He's still such a nice content little guy. I still can't believe he was a 100% match for Tyler. We really couldn't have had better timing with having him either!

Tyler has been more tired lately, taking naps and just being calmer. I'm wondering if it's starting to show up in his blood now. The other day he got a little cut and took longer than normal to stop bleeding. His whole hand was covered in blood before it stopped. His color looks good though, so it's kind of puzzling. Some days he's more active and other days he isn't, so maybe it's just a fluke thing. I haven't seen anything worth getting seen for yet though.

He brought Dawson's monkey harness to me, wanting to wear it. He crawled around with that thing on his back all afternoon and eventually fell asleep with it. Maybe he was just feeling down and needed a buddy?

We're all very anxious to start down this road again. We were so happy to only have 2 months left of treatment, so starting over just seems so overwhelming. It was hard enough the first time, but this time he'll be a toddler, wanting to be active and having to be hooked to an IV pole the whole time, possibly a bladder catheter too, making him even more stuck. Thank goodness he likes movies and Children's has a whole closet of them. I also bought him a new toy, which the boys have been all over, but I haven't taken it out of the box yet. I got a couple new things for the hospital for them to play with. Hopefully it will help pass some time.

I'm not sure how often I'll be able to blog, Children's doesn't allow the website to be accessed at the hospital, but the hotel and Ronald McDonald house probably does, so I'll see what I can do. I do want to keep you up with Dawson and Gabriel's life during all this too!

Bone Marrow Biopsy

Was a typical biopsy day. Tyler threw off our morning routine though. I usually get everything packed in and drive up to the patio before even waking him up. Then I just take him from his bed and put him right in the car, hoping he'll stay asleep. He's not allowed to eat or drink, so the less time he has to think about it, the better. Thankfully he was ok with Thomas the Train for a substitute. We left at 5:30am, went through the drive thru at McDonalds for breakfast and got to Children's just before 7:30 as planned. Thank goodness for breakfast, it's hard staying awake after only getting an hour of sleep. The boys kept me awake and then getting up early didn't help either. Of course the radio is all talk shows at that hour, which is very annoying.

We got there and got in right away. Tyler was so good about everything. Gabriel had woken up, so I was holding him. So Tyler just sat there and let all his vitals be taken by himself. He's getting so big! He had gained 1 pound because of the cast. I had to ask the anesthesiologist to count his weight as a pound lighter, which is what he was before. She was about to round his weight up and was glad I brought it up. I'm always so nervous about things getting messed up or forgotten. It really doesn't help my nerves when I find that these people actually do need reminders for some of this stuff. It just makes me feel like I have to really be on my toes with everything. It went very smooth though, Dan cuddled Gabriel in the rocking chair while I held Tyler to get accessed and be put under. The biopsy only takes about 10 minutes. I ordered a tray of food for him before they started, so that arrived just as he was waking up, about 20 minutes later. Once he was awake he decided he was starving and started eating it all up. He ate more that morning than he had in 2 days! Of course I got all his favorite stuff, so that helped. We were told we can leave around 11am. He finished eating while we talked to his main nurse and then we headed upstairs to see his hospital nurses. They were excited to see him again and see the new baby too.

I drove about 30 minutes and then we switched off. I was just so tired and was having a hard time staying awake. So I sat in the backseat since the front is scrunched and Dawson's carseat wasn't in the van. We had switched the seats around, so now Tyler is in the captain's seat and Dawson is behind him. He was fine in the back when he could crawl in by himself, but now that we have to carry him and put him in his seat, it was just too hard to have him back there. The switch has worked out nicely, Dawson and Tyler like it because they're facing eachother. I often hear giggles between the 2, it's very cute! It was fun being able to watch them sleep.

We got to my parent's house and stayed a while before bringing Dawson home. He sure loves Grandma's house. He asks for Grandma's house for days afterward!