Sunday, January 23, 2011

Dawson Switched to Top Bunk

My dad came over today and brought the bed rail and ladder he made for the bunk bed. The boys loved watching him put it on, they were intrigued by the power tools. Tyler kept saying "oooh, what that?" to everything and they kept climbing up and down the ladder. They are very good about getting on and off the bed. Tyler we have to watch carefully though, because he often misses the ladder, but once he finds it he's very careful. I got the rest of the bedding on the bed also.

Dan and I both did some cleaning, him on his side of the closet and I did some in the boy's room. There's a corner of the room with a lot of things with no home after the re-arranging, so I worked on that. I got a lot of things sorted, thrown away, put a button on a shirt and some other little things I've been meaning to do.

Tonight I moved Dawson to the top bunk. He didn't want to go to bed until I asked him if he wanted to sleep up there. He grinned and said "sleep up there", then was happy to get his pjs on and go to bed. He climbed right up there but didn't want to lay down. He seemed to realize he needed to sleep and then wasn't interested anymore. I put Tyler in his crib and had to tell Dawson a few times to stay in bed. I went back in there a bit later and put Dawson back in his bed again. Even while I was in there he tried coming down. It didn't seem out of fear, mostly just didn't want to stay in bed. I removed the ladder and showed him I was putting it across the room. He said "oh no, down!" and "stuck!". I told him he needs to stay in his bed and sleep. He fussed for a bit but didn't cry, then fell asleep shortly after.

With Tyler I've been putting him in his crib to start with, but if he wakes up in the middle of the night I'll move him to the bottom bunk. I've done that a couple times now and it's been working pretty good. He's conscious enough to know where he is, but tired enough to just fall asleep right away. It's nice that he's able to get up on his own in the morning too instead of relying on me to get him out of his crib.

Tomorrow Tyler has his IVIG infusion, so Dawson will go to school and then Tyler and I will head right to the clinic as soon as Dawson is on the bus. I'm hoping to talk to the Oncologist about some things also.

Saturday, January 22, 2011

Dawson's Bed and 50's Night

We got Dawson's mattress up on his bed and put him up there to see what he thinks of it. He really seemed to like it, he was smiling and exploring. He learned he can touch the ceiling! He also learned that if he stands up and jumps on the bed, his head hits the ceiling pretty hard since it's only about 2 inches away from the ceiling to begin with! I didn't think he'd do it again, but he did the 2nd time I put him up there too.
Tyler wanted to check it out too. He thought it was lots of fun and kept going up to the bed saying "what that?" everytime we were in his room. It doesn't sound much like "what that", but I can tell it's what he's saying.
I told Dawson he would be sleeping up here on this bed, so he layed down and said "sleeping!"
Yep, he really likes it. :)
Tonight was 50s night at the roller rink. I had my doubts about finding something to wear, but my poodle skirt did fit snug under my belly so I wore it. As I was looking for a shirt, Dawson kept coming in the room, looking at my skirt and saying "silly!". The purple shirt was the only thing that remotely matched that fit me! People were impressed I managed to dress up. It was fun, but skating a 2nd time in a week was very tiring, so I took a couple long breaks.

Friday, January 21, 2011

Tyler's Biopsy Results

Tyler's Oncologist called this afternoon with the results from the genetics test. Last time they only tested 400 cells and found no cancer. This time they tested 1,000 cells and found 3 cancer cells. He's not sure if this could be leftover cells that just haven't been killed yet, or if Tyler is relapsing. He wants to do another biopsy in 3 months, mid-April. Right after the baby is due! Nothing about this has been convenient, but this will be difficult to figure out.

After talking to some other infant Leukemia moms, I'm not sure I want to wait 3 months, this type of cancer is very aggressive and could spread quickly. I have a couple other infant Leukemia moms who are going to ask their Oncologists for opinions on waiting that long. I also don't know if my sanity can make it 3 months! Having everything up in the air is very stressful. The more I think about it, the more I wonder how it would even be possible for him to have cells left at all. His Oncologist seemed surprised also. He was already down to less than 5% cells in July 09, after only 1 month of chemo. So how could the next 17 months of chemo not easily knock those out? Hopefully I'm wrong, but logically it doesn't make much sense.

On Monday Tyler has his monthly IVIG infusion and the other Oncologist will be there. I plan to ask her what she thinks about waiting 3 months and we'll go from there. Tyler's main Oncologist said he'd update her on the situation since he knows we see her monthly.

Tyler is doing well otherwise though, he's very active and happy. His runny nose finally cleared up and he's doing fine with the higher chemo dose. Last time he started limping and having little energy. This time I saw that for a few days but it stopped and has been fine since. I guess we'll see how he does with it this week, he gets the strongest stuff on Monday evening.

Mattress and Cute Busy Boys

It was very cold today, with the windchill it got down to -23 for a high and -40 for a low. Dawson woke up easily this morning. He was happy to go to school, the bus in the morning has gotten much better since I started driving him out to the road. It's about a block's length from our apartment to the road and the cold and wind bothers him even if it's in the 30's, so I started driving him down there in December. His teacher said he had a good day at school but sometimes it took a while to get focused and follow their routine.

Tyler enjoyed his morning with just me. We played trains for a bit and then he decided he wanted to nurse. It's our usual routine that's often disrupted on school days. So he went and stood by my bed to ask to come up there and we both napped for a while. It was nice to get a little extra sleep and it's always fun cuddling up to my cute little guy. I had set my phone to wake up before my mom and grandma stopped by. Thankfully Tyler happily woke up and was fine with getting up. He often wants to stay longer. He's been saying "bye-bye" when he waves and even tells me "tank ooo" when I do something for him, it's so cute!

My mom came and dropped off a mattress for the top bunk. My brother got a new mattress and they gave us the old one. My dad is making us a railing and ladder for the bunk bed too. Hopefully the transition will go well. I had planned on getting Dawson up there by the beginning of the month since it takes him a while to settle into a new routine. Hopefully we'll be able to make the switch soon. Right now he rarely sleeps in his own bed, he always crawls into Tyler's crib. Last night he slept in his own bed, mostly because he was asleep when I put him to bed. Tonight Tyler had fallen asleep on the couch so I let Dawson go to bed alone, hoping he wouldn't be as tempted to crawl into the crib with no Tyler to play with. But when I went in there later to put Tyler to bed, I found Dawson sleeping in the crib. I really can't lift Dawson out of the crib these days, so I just decided to put Tyler in Dawson's bed, since that will be his bed eventually anyway. Tyler pretty much slept through his diaper change and chemo anyway, so was barely awake when I put him in the bed. He didn't protest at all, I turned on the crib turtle and he watched that and dosed off again. I got a big foam pillow to put at the edge of the bed incase he rolls. I do have a guard for when he's in the bed all the time, I just didn't want to wake him up messing with it. I guess we'll see what he thinks of the bed. I'm hoping if he wakes up in the bed, he'll see it as a place that he slept and realize it's ok. The last time I layed him down in there at night he freaked out and wanted back in his crib.

Here's my belly at 29 weeks
 Dawson was intrigued by my camera and liked the flash, so he kept saying ready-set-go and then smiling for a pic. Then we'd look and see how it turned out. It's fun when he gets interested, I rarely get any pics of him looking at the camera at all, let alone smiling.





The boys love playing with the ride on toy in the kitchen. They also love messing up the kitchen as you can see, many things keep getting put onto the table to get away from Tyler!
 He was waiting for me to give him a push

 Watching Dawson ride on the toy, waiting for him to come try to run into him
 Dawson was rolling it into me and thought it was very funny

 Tyler was getting into trouble while I was distracted with Dawson

Thursday, January 20, 2011

Still Waiting

I really hate waiting for test results, especially very important ones! They told me 1-2 days for the genetics test and today was day 2. I called the Children's clinic and they said they'd have someone call me today, but nobody did. Hopefully tomorrow I'll hear something.

Dawson didn't get to school today, I overslept but I do feel a lot more rested today. I think Dawson needed the extra day too, he seemed a bit off this morning but was doing better this evening. He even went to sleep in his own bed instead of Tyler's crib! He had a fun time in class tonight for the support group. He still just plays on his own, he was playing with trains and not doing so well with sharing. He must've had about 20 train cars on his track and wouldn't let the other boy who was interested have any. Doesn't matter how many cars or trains there are, there's never enough to share! Something they've been working on at school with him. He also ran off in the store again today. I've been trying to let him walk more, but he often just decides to run off. He never stays right by me, he usually goes up and down the aisle we're in but sometimes decides to venture further and take the entire length of the main store aisle instead. He did ok with OT today, he was a little uncooperative at first, but eventually focused more toward the end.

Tyler had a good day, he seemed a little sore at times but for the most part he was active and energetic. By evening he was getting more clingy and just wanted to cuddle. He's so cute when he cuddles, he'll lean towards me so I'll kiss his cheek, then he'll keep bobbing his head toward me until he's gotten enough kisses. He did great with OT today. She was impressed at how energetic and talkative he was. He was babbling constantly and very enthusiastic about the session.

The Occupational therapist's supervisor stopped in for a quick visit today, they're required to do that every so often. I asked her what's going on with Speech, since they put that on hold and never got back to me. She agreed that they really could use Speech and said she'd ask them what's going on. I did find out that our original Speech therapist isn't there anymore, so they probably have a much tighter schedule than before.

I'm also still waiting to hear from the BMT unit about the cord blood banking. They were going to see if our insurance would cover collection and processing and get back to me. I also need to figure out how we're going to get the cord blood to the UofM, so lots to think about with that too. Seems like I'm always waiting on something!

Tuesday, January 18, 2011

Back to Normal

Today went well, Tyler woke up happy and didn't seem sore at all so I was relieved about that. We're getting back into our normal routine again. The Occupational Therapist came and worked with the boys. Dawson had a hard time concentrating, I think having a weird couple of days threw him off. Hopefully he'll get back into routine quickly. He goes to school tomorrow and OT is coming again also. I kept Dawson home all last week so he didn't bring home any illness or anything, so it'll be nice to get back to our normal schedule.

I got a call from Neurology at Children's and made an appointment for Dawson on Feb 7th. My mom is going to take Tyler while we go. That will be good practice for when I have this baby too, Tyler hasn't been away from me very much.

I had a good day, I picked up all the toys and Dan vacuumed for me. Thankfully the boys went easy and didn't dump them all out again. I really need to go through and get rid of the toys they don't play with. There's so much that just gets dumped out and never played with. Of course a lot of it is baby toys so I can't get rid of those yet, but I at least want to get them put away until they're needed.

I went skating tonight and even got some errands ran. Those things go so much faster without the kids! Skating went well, I was pretty tired still from my long day yesterday but it was fun talking to friends and getting out of the house. When I got home Tyler decided to slide over the back of the couch to get to me. He was slow and careful about it but the short drop to the ground hurt his hips. He looked surprised and cried, so we cuddled and he nursed a while and fell asleep. Dawson fell asleep on the couch too, so it was nice not having to deal with bedtime, I just put them in their beds and they stayed asleep. :)

I usually try to put pics in all my blog posts, but lately we just haven't been doing as much since it's winter and we're cooped up inside, so I don't seem to get the camera out as much. Here's some pics from the last couple weeks.

Tyler was having a crazy hair day. His hair is so light and wispy, but if you look close you can see it sticking up.
 Tyler's newest food are bananas. He refused the last time I tried but now he suddenly loves them. We had just gotten home from his biopsy and he decided he wanted a snack before bed.
 He's always in such a good mood after procedures, I would be whiney and on the couch if someone drilled into my hip!
 After seeing Tyler do it on the webcam sunday night, Dawson had to put toys on their little table and knock them off himself. They were getting pretty goofy and giggly. :)

Monday, January 17, 2011

Bone Marrow Biopsy

I'm so glad we don't have to do this much anymore! Our morning actually went very smooth, it helps that we've pretty much perfected the process. We had gathered everything we need the night before so it was all ready to go. Camera, bag of toys, laptop, snacks, diaper bag, diaper bag. We got the cooler for Tyler's pediasure and our drinks in the morning and Dan loaded everything up. Once the van was running and parked right outside the door I got Tyler out of his crib, changed his diaper and put his jeans on. I had him sleep in his onsie shirt so I didn't have to distrub him too much. He stirred a bit, but slept through it pretty well. He's not used to getting up until 9am and Dan isn't used to getting up until about 1-2pm since he works 2nd shift, so it's always tough on all of us! I put his coat and shoes on right in his room and I already had my stuff on. I carried him out to his carseat and the cold air woke him up. I gave him his apple juice, one of the only allowed things he can have 2 hours before the procedure. He fell asleep after that and slept the whole way there. It was a really slow drive, we were cruising at 5mph for a while on the freeway, it was very icy and snowing. We saw about 4 cars in the ditch but thankfully made it there ok and even on time!

Tyler woke up once we got there, he was excited to be somewhere as usual. He loves the monkeys hanging from the ceiling of the skyway on the way in. They changed the hospital around when they renovated, they told us they're now using the Short Stay for procedures. I went to where Short Stay used to be but it wasn't there! So we followed the signs to the new one and found ourselves in the former PICU unit. They've changed the place around so much that I didn't even realize that was it until we were in there and suddenly realized where we were. It looked the exact same as they had it before, only with empty beds. That somehow didn't help much though, because I can still clearly picture everyone who was in there and the place still had a gloomy feel to me.

They gave us a room and we settled in. Tyler did ok for vitals but just wanted to go play. We found the little toy room and ended up giving him a ride in a cosy coupe car. We walked around the unit many times until they called us back in the room for labs. We couldn't get the dvd player in the room to work, so we had to access his port without his cartoons. They had some on regular tv, but since we don't have tv at home he didn't know what any of the shows were and wasn't that interested. It went ok though, it's harder to hold him totally still with my big belly in the way.

They told us they do biopsies last, but because of his age they'd look into that. Thankfully they did get to him very quickly, pretty much right after they put the port in. Dan and I walked around for 15 minutes and he was done but still sleeping when we got back. It went very smoothly and they said they were able to give him less propofol than usual. They just start with a little, just enough to get him to sleep. Then they start and if he moves to the feel of pain, they give him some more. When I watched his spinal taps he actually reached back and tried to grab the needle from them. I have a hard time with that, I'd prefer him not have to struggle at all, but there's such a risk with Propofol that too much would be a huge risk, so they have to do it that way.

He woke up very quickly but was quiet. He drank some juice and we were told 30 minutes to leave once he did. He layed still for a while, watching Blues Clues on his portable dvd player, then he decided he wanted out of there, so he sat up and was going to get off the bed. He was mad that I wouldn't let him walk around, so he nursed for a while and fell back asleep. He was quite excited once it was time to leave, he wanted to walk but I wouldn't let him yet, he rode in the stroller and was pointing to the door and saying "Go Go Go!"

We had some things to do in the cities too, so we got those done. We went to the junk yard for a part Dan needed for his truck. It was a quick 15 minute run in to get it. I was hoping he'd take longer, I wanted a nap! Then we went to a dealer for a part for my van, then to Motherhood Maternity for nursing bras. They're the only store that carry my size and we don't have one in town. We walked around the mall a bit after that, Tyler wanted to walk so I let him. I was hoping he'd take it easy, but instead he hit the ground running. He ran all over the place and never seemed sore at all. I did have him take a few breaks, he doesn't know to take it easy, he seems to ignore pain and keep pushing on. I've seen him limping around in the past and he'll still run some places. We stopped at Cinnabon in the mall for a big cinnamon roll. He loves those and I figured we all deserved a treat. :) 

Our last stop was Babies R Us. I haven't been there since 2007 when we bought Dawson's carseat/stroller combo and I thought it'd be fun to look around and see if they have anything interesting. They always have the biggest variety of stuff and things I've never heard of. My biggest amusement was the Nap Nanny. http://www.napnanny.com/  $129 for a colorful foam lounger thing seems a bit rediculous to me! I always just prop them up in the boppy or put them in the bouncy seat. I just had to share, I found it funny. Dawson was a colicky, hard to get to sleep baby and I still wouldn't have bothered with this thing! Sometimes babies just need their mommy and no amount of money can do much about that.

We stopped to eat on the way to get Dawson from my parent's house and got there around 8pm I think it was. Dawson was very happy to see me and seemed ready to come home. The boys really enjoyed chasing and playing once we got home and they went to bed very well after their long day. Dawson spent the day with my mom at my grandma's house, she's in the process of moving slowly. Sounds like he had a great day and was very well behaved. Hearing words like "perfect" in the grocery store makes me wonder if she really had MY child all day! The things my mom was describing like standing still at the register are things I've never experienced. It's really not fair!