Thursday, April 28, 2011

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

Monday, April 25, 2011

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.

Friday, April 22, 2011

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!

Wednesday, April 13, 2011

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!

Tuesday, April 12, 2011

Baby Faces and the Lake

Gabriel makes a lot of faces in his sleep. It's really cute to watch. He wasn't quite as active as usual, but I got all these within about 30 seconds.
I guess he was checking up on me.
 Back to relaxing
 Smiley faces
 Tyler has been so bored, sitting around on the couch or the floor. There's only so much a toddler can do while sitting down. Especially when he's used to being very active!
So we decided to head to Lake George and take a walk around the lake. Dawson was at Grandma's house since Tyler has a biopsy scheduled for the next day.
 Gabriel was all comfy and warm, he fell asleep right away
 Tyler was watching some ducks, he was very amused
 The pic is blurry because it was dark out, but I didn't like what my flash was doing to the pics. Will have to play with that more. About 12 hours after getting his cast on, Tyler decided to stand up with it. He wasn't putting weight on it, but he's been doing a little more as the day goes on. Earlier he was army crawling, dragging his legs around.
 The moon, just because.

Tyler's Cast & Gabriel's 2 week Checkup

Tyler's cast appointment went well. My sister came and helped out with Dawson so I could focus on Tyler. I wasn't sure how he'd do since it's a new thing. He did great though, sat perfectly still! The Dr was pretty rude, he wanted me to move my "house" aka stroller out of the room. I told him I'd have to take the baby out first and he hadn't realized I had a baby in there, so he told me in a huff to just keep it in the room then. He went on and on about how he's never seen such an "SUV of a stroller". I was amused. It is a big double stroller though, it has a lot of storage space, which I really wanted because of all our appointments and hospital trips. We use every inch of space in that thing! Having the infant carrier on the stroller really makes it look big though. His cast is orange, the color for Leukemia awareness. I think it looks really cute!

Gabriel's 2 week checkup went well. He weighed 9 pounds 9 ounces and was 20.5 inches long. So he's gained almost a pound and 1.5 inches in 2 weeks. The Dr was impressed with his head control and says everything looks good. His next appointment is for his 2 month checkup on May 26th.

He wasn't happy because he wanted off the bed

Once we got home, Tyler fell asleep on the couch and Gabriel was already sleeping in his carseat so I moved him to the couch by Tyler.
Dawson had to get in the pic too. He thought it was cute that they were sleeping together. He pet each of their heads and said "aww, Tywer" and "aww, Baby!"
Proud big brother
I thought I'd lay him there for a cute pic. Dawson wasn't sure of it at first, but then decided it was a good idea and he smiled just long enough for the pic. :)
Someone in my Mom's Club gave me an umbrella stroller. Since I'm still healing from the birth, I can't carry Tyler around without being very sore. This really helps when I need to bring him to his room, the table, etc. He likes it and has always cooperated when I bring his stroller over. He loves chasing his brother in the stroller. Dan will wheel him up and down the hallway so they can still do their chasing thing in the evenings. It's fun seeing him so excited.
Dawson got this idea right away. The stroller is short enough for Dawson to comfortably push it. Which is why I really don't like umbrella strollers, I'm too tall for it! It's small size is useful for going around the apartment though. Tyler loved being pushed by Dawson. I don't let him push the stroller much though, I didn't want Dawson running his leg into anything! So Dawson pushes the stroller around while it's empty.
Tyler also has a walking shoe, so the cast doesn't get worn down on the bottom and so he has some grip. It's a really cute little shoe!

Monday, April 11, 2011

Broken Leg

Things have been going well and we're all getting into new routines and settling in well. Apparently too well! Dan has been awesome about getting up and putting Dawson on the bus at noon so I don't have to. I'm usually nursing Gabriel or something anyway, so that really helps. The boys and I have been venturing out more. Today we played on the playground after getting Dawson off the bus. It went really well. Tyler has discovered the big swing and does great. He hasn't fallen off and he must've spent a good 15 minutes or more just swinging and smiling.

We went to class tonight, which went pretty good. Dawson wanted to play outside instead of coming inside, but he did finally come inside without me having to go get him. The parent time was nice, they had 4 ladies who used to be in the support group. Their kids are in their early teens now and they were talking about things and answering questions. It was nice to have some insight and get some questions answered. They brought the kids outside to play since it was nice out, so we joined the kids outside after our discussion was over. Tyler was being held by his favorite para, he looked very pale and tired. She said he just wanted to be held because he went down the slide a few times and then was suddenly crying and wanted to be held. He leaned toward me, so I took him from her and asked him if he wants to go play. Gabriel had woken up also, so I put Tyler down and he just dropped to the ground without trying to stand up. I was still holding onto him, I'm just used to making sure he has good footing before letting him go, since he's had weak leg issues in the past. I stood him back up and he cried and was shaking a bit. The teacher was standing there and I told her I'm gonna have to bring him in because something is wrong with his leg. I asked the para if his leg was caught or anything going down the slide and she said it was. The teacher wanted me to wait it out a bit and see if he'd walk on it, but I had a feeling it was broken. If it was just sore, he'd be walking on it. He always pushes through the pain if he can, so him not walking and acting like that is serious. I got the kids in the van and headed out. I was nervous since we didn't have much for entertainment. Usually we head to the ER from home, so I just grab the hospital bag on the way out the door, which already has bubbles, toys and other things for entertainment. Thankfully Dan had just refilled the animal crackers in the diaper bag, so I did have those.

We got there and Dawson was excited. We entered the parking ramp and Dawson said "2!", which is the level we park on. He happily went into the hospital and pushed the door opener buttons and then the elevator buttons. He's a very good helper when it comes to doors. The ER got us in right away, thanks to Tyler not being allowed in waiting rooms. They put us right in the x-ray room to make things easier. Tyler was flirting with all the nurses, he was all smiles and they seemed to think it must not be too bad if he's acting so happy! They acted like the Dr might not even do an x-ray. Thankfully they believed me when I told them that Tyler has always been hard to figure out pain with since he's always so darn smiley. He refused to walk for them at first and then put on a brave face and limped about 4 steps over to me. The Dr said he still couldn't tell where the problem was. He felt his hips, ankles and legs and finally applied pressure to the right spot, because Tyler started crying when he pushed about mid-way up the bottom part of his leg. The x-rays went really well. He looked at me with a panicked look on his face like he wanted to jump off the table. I told him it's ok and kept talking to him and he settled down. He still looked nervous, but kept an intense focus on me through the whole thing and he did great. He held perfectly still, though I still held his leg in position, he never even tried to fight me. He's such a brave little guy.

Gabriel hanging out with me in the evening
 Gabriel getting a spongebath
 Tyler with his temporary cast
 I asked Dawson to go get a train book. He got one and even read it to Tyler too! He gave Tyler a hug and said "it's ok". It was so sweet! He was lightly touching Tyler's leg and I told him that Tyler has an owie. He seemed pretty concerned. He's so attached to his little brother.
Dawson doesn't pay a lot of attention to Gabriel. He seems to like having him around though. Last night before bed I was playing with Gabriel and he was very awake. Dawson was on the floor, so I held Gabriel upright on the floor and Dawson got very excited and said "Walk!". He seemed to think the time had come for Gabriel to just up and start walking so he could play with him. Sorry Dawson, about a year to go for that! It was just so cute how excited he was, like he's just been patiently waiting for that these last couple weeks.

Tonight has been hard, Tyler got up twice tonight, and just carrying him to and from bed those couple times was really hard on me. I'm nervous about how tomorrow will go, with him needing to be carried and probably being frustrated about not being able to walk. I also have to figure out what he's going to wear for pants for the next month or so! That cast is not going to fit in any of his jeans.