Wednesday, December 30, 2009

A Clinic Day

Tyler went to DTC today (Diagnostic Treatment Center) at the Children's Clinic. He goes there for all spinal taps and biopsies. We got there at 7:30am like scheduled. He couldn't eat past 4am so it was a long night and I didn't sleep a wink. He finally did though, he got about 2 hours between the car ride and the 30 minutes he slept at home before we left. They prepped him (took temp, blood pressure and put the heart monitor stickers and blood oxygen monitor on), then we waited 2 hours for them to come do his spinal tap. It's a crazy system, they have everyone come at 7:30am, then they get to people in the order that they came in. They told us that we were one of the first ones there! I'd hate to be a person who showed up late! Almost tempting to just show up at 9 instead, but then who knows how long we'd be waiting.

As usual, I stayed with him until he was asleep. They did it differently, which made him mad. Had to keep telling myself I'm not allowed to take over! They put the oxygen on before he was totally asleep. He needed more Propofol, after fighting the oxygen they listened and gave him more, then he was out. Poor baby.

He looks so little sleeping on that bed

They put a rolled up washcloth under his neck for good airflow

Poor baby had 2 bruises after the spinal tap this time. He doesn't always, they must've had issues. :( 

At least Dawson found something to do. He loves Tyler's toy bar on the carseat, so I just strapped him in there. Kept him happy for an extra hour, especially once I got out the snacks. He had crackers and a sucker. He was really having a hard time being patient, there was nothing to do! Some rooms have toys, but not that one. They had books and he lost interest after the first 30 minutes. The TV's sound wasn't working, so he wasn't interested in silent cartoons. He just wanted to run out of the room, so I had to strap him into the stroller. Hated to do it but Tyler was hooked to 2 machines and I couldn't run after Dawson anymore. They only have a bed in the room, so I have to hold Tyler or sit on the bed with him. The railings aren't good enough, he can slip right through the cracks.

Tyler got his steroid cheeks back. We're currently weaning the steroids, they'll be done on Sunday, so 5 more days left! Hopefully he'll be less fussy once they're gone. It's been a long 2 1/2 weeks with the steroids!

Hard to get a nice pic of him lately when he's fussing all the time, but look at that chin! Thankfully the double chin goes away after the steroids are done. Wish we could all say the same. ;)

  We all took a nap on the couch in the evening since we'd had a long day. Dawson didn't start out like this, but it's how I found him when I woke up! 

Here's Tyler in the outfit he got from Great Grandma. It looks so comfy! It was nice having a long sleeved onsie that fit him since his central line holder got dirty and we had to go without for a while. 

Monday, December 28, 2009

Christmas Day

On Christmas Day we went to my Grandma's house. My parents and siblings couldn't go because of the flu, but my aunt and uncle were there with their families. It was fun but weird not having my family there. Had a good time, got to know everyone a little better. Dawson got his own tableware set and a 5 piece wildlife set with deer, elk, a bear and a couple other animals. Tyler got an outfit and a toy keyring. Dan got some nuts, candy and the Star Trek movie. I got a frying pan, container and napkin holder.

The snow wasn't that bad, it was slushy but the roads were mostly just wet. It was nothing compared to what they were talking about. Can't imagine staying home because of it. It was pretty nice out too, hardly cold for MN. The snow was even melting! Thought that made it a bigger problem the next day, when that froze and it snowed over top of the ice. I went out Saturday evening with the kids, Dan wasn't feeling well. 3 out of my 4 car doors were froze shut. Thankfully I could get in the driver's side. I managed to get both kids in from my door by laying my seat back.

The boys, all dressed up. Tyler wasn't so happy to be put down for a minute though. He has a vest and tie, it's kinda hard to tell in the pic though. 

Dawson had lots of fun playing with Great Grandma before we left, while I nursed Tyler

Pretty tree! I miss having a fully decorated tree! Ours looked pretty sad this year, several ornaments, lights but no tinsle because Dawson eats it, no ornaments at the bottom either. We did solve this by buying some plastic ones at Target's after Christmas sale tonight! :)  And those are my parent's and sibling's presents, waiting for them to get better so they can get them!

Christmas Eve

On Christmas Eve we drove around a bit and looked at all the lights around town. It was nice and peaceful. Not a lot of people out and about since the stores were closed. We opened presents with the family that night. We had planned on going to my parent's house, but my brother Justin got sick. Dawson got a play telephone, Lego set and a Blue's Clues DVD. Tyler got a ball that rolls a little by itself, it has buttons and lights, connector things and a turtle drum.

Dawson loved opening presents, he was also concerned about keeping the paper picked up. If only he was this particular about his toys!

Dawson was so excited to get his phone, he wouldn't even stop playing to let me take it out of the package!

Tyler didn't understand the paper yet, so Dawson gladly helped him out with that

Then they decided to trade toys for a while. Tyler grabbed Dawson's phone seconds after this pic! Dawson still plays with those connector things more than Tyler does.

Dawson was excited to see his Blue's Clues movie

Tyler got a drum from the medical supplier. It's his favorite toy so far. It makes noise and lights up when you hit it. The head comes off and is a maraca and the tail is a kazoo.

They both think it's pretty neat

Dawson likes talking on his phone. He says "Hi", "Oh" (hello), "uh huh", (then giggles), (random babble), "buh" (bye), and hangs up and grins. It's pretty cute, I got it on video too! Click on Dawson's Video to watch!

He was excited to watch his new movie too

Wednesday, December 23, 2009

Early Intervention

It's been a crazy week of appointments and no sleep. Tyler got his chemo on Monday and has been really fussy. We go to sleep between 6-8am lately, then Dawson wakes up around 9-10 most days. Sometimes earlier if Tyler wakes him up. Tyler is doing ok with his treatment, he starts weaning from his steroids on Monday, which will make him even fussier, but hopefully things will be a lot better once he's all done with those. Tomorrow is Tyler's 4th day of his home IV chemo, that went fast! He'll get labs on Monday, to avoid being bothered on Christmas. With this harsh chemo, the Dr says he wouldn't be surprised if Tyler's counts to way down pretty soon. The steroids help them stay up, so hopefully we'll have no issues until after that's done.

Dawson started his Early Intervention Evaluations last week.They called and set up 5 appointments within 2 weeks. This could really be streamlined a lot better, I've done a lot of repeating myself and 3 of the appointments were filling out forms and answering the same questions! The first day she just asked me questions about him and had me fill out questionnaires and sign permission forms. The 2nd time she asked me more questions, more forms and played with him a bit. Then a speech guy came and actually worked with him, but I had a similar form to the first one I did to fill out. He looked at books and played with him. Mom stayed with him for the appointment while I took Tyler to get his chemo, so I only saw about 15 minutes of it.

Today we got his hearing checked, it's standard procedure. He was more interested in figuring out how the sounds and lights in the hearing booth worked. When he looked at one of the 3 boxes, he'd get rewarded by lights on that box and there was a character inside that glowed. He wouldn't sit still, he pushed a chair up to the middle one and looked inside it. Then he was turning his head towards the other 2 boxes, so that worked out well. The lady was very nice, she showed him her remote and he pushed the buttons until he was satisfied with figuring out how it all worked. She said she's never seen anyone so interested in how that works before, they usually just watch it!

On January 4th we find out results. Though they say he shouldn't have a problem qualifying. I wanted to get this done at a year, but the Dr said to wait, then again at 15 months. The Dr was determined that Dawson was fine and he'd start talking any day now. But he averages maybe 1 word per month and usually we don't ever hear the word after he says it once. He's also behind with his social development, he won't pretend play or respond to requests like "bring me the ball". He also has some "stims" as they call them. He shakes his head back and forth a lot and won't stop until he's done. He also runs back and forth across the room with a different laugh. He spins things a lot, it stopped for a while but he's back at it. That used to be the only thing he did, but the Dr said it was a baby thing and he'd grow out of it, but he hasn't. The other things are more recent that he's started doing, which is why I went above the Dr and called Early Intervention myself.

He'll get home visits at least once a week from the school, then once he turns 3 he'll go to the school through ECSE (Early Childhood Special Education). He seems to respond really well to other people working with him. Just in the short time that I observed him with the speech guy, he was already pointing to pictures in books and was interested in what was on the page. Before that he'd just flip the pages, I try all the time to get him interested in pictures and he doesn't cooperate. Hopefully he'll do well with the schooling and will start using words.

In January, once Dawson is done with the evaluations, they'll start on Tyler. The teacher said he'll qualify just because of his diagnosis. Kids on chemo often fall behind in their development, though Tyler has stayed ahead of the game in that area so far. They'll keep an eye on him, and work with him too, depending on what I decide. They said I can ask for as little or as much help as I want pretty much. They could just assess him every couple months, or come work with him regularly. He really thrives on that attention, so I'm leaning towards having him worked with. Wouldn't hurt, it'll keep him active and they always have new toys and new ideas for him to think about. The chemo often leaves kids with learning disabilities, it makes things harder to process and they have difficulty learning new things. Just one of the many side effects. Hopefully he'll continue to do well and this won't be a problem.

We had planned on going to my parent's house for Christmas Eve, my Grandma's for Christmas Day and meeting up with Dan's parents on Saturday. Well my brother just got the flu, so Eve is canceled. I also got a letter from Dan's mom saying we shouldn't come since it'll snow and wants to get together later, like maybe March. Seems like a long ways away, past Tyler's birthday even! It's a bummer that the kids don't see them enough to get to know their other Grandparents. I'm thankful to have gotten to know both sets of my Grandparents, I really can't imagine never knowing them. Hopefully nothing will change for Christmas Day and we'll still get to spend time at my Grandma's house. Dawson really likes it there.

I'm excited to open presents with the family tomorrow! We have some gifts from Walgreens OptionCare for the boys that are wrapped so I saved them for Christmas too. They deliver Tyler's chemo and other medical supplies. We also got $200 worth of gift cards from them! I was shocked! They are for Coborns, Holiday and Walgreens. So awesome!  I've loved getting cards in the mail this year, some have had gift cards so I'm looking forward to doing some more shopping after Christmas. We had one for Toys R Us so I thought maybe I could get something else to open on Christmas. I went there last night and drove right past it, they were packed! I guess when trying to avoid people and germs, you shouldn't think about going to Toys R Us 2 days before Christmas! Maybe they'll have some sales going on after Christmas. :)

Sunday, December 13, 2009

Carriers and Crawling

Dawson has had a lot of energy as usual lately. Everyday he empties his toy box, not sure why since he never plays with the toys, but it must be empty. He's quickly realizing that Tyler is becoming more of a threat. He tries to hide toys from him and often takes away what Tyler is playing with. He still doesn't like being next to him unless it's on his terms. Otherwise they do play side by side often.

Tyler is doing good. He took 3 crawling steps towards me last night. He was very determined and went all 3 without stopping! Usually he'll crawl a step, flop on the floor, then get up and try again. When Dawson saw him come towards me, he had this horrified look on his face as he realized that Tyler may be mobile one day! Should be interesting to see what happens once he is!

The last few nights Tyler has slept in his crib. 1 night I just got lucky transferring him into there. The other 2 night I let him cry a bit and he fell asleep. He knows his crib means sleep, he just prefers being up with me. Last night he cried for about 5 minutes. Tonight it was maybe 1-2. I put him in there, went to the bathroom, sat down at the computer and he stopped. Pretty good! Hopefully bedtime routine will continue to go well.

Tyler's central line has us questioning things again but we're holding off since there's no visible evidence of it and last time we went through quite a run around. I'm planning to bring it up on Monday, unless it gets worse. I'm a bit nervous about Monday now, Dan just saw the weather report, we're supposed to get a snowstorm just as I'll be driving into the cities. I'm debating just leaving the night before and get a room at the RM house. Maybe I'll call just call them tomorrow and see if there'd be a room available for the night.

I got my Mei Tai carrier in the mail. It's really comfortable and easy to put on. Another cancer mom made it and used it until her son was about 2 years old and wanted me to have it for Tyler. People are so nice!! We also got another ornament in the mail, this one is like a wooden block, with different things on each side. It says baby's first christmas, one side holds a little picture. It's really cute.

I've been getting stuff done lately. I decorated the tree a bit today, went through the bottles and figured out what I wanted to keep and give away. That made more room for the baby food. I also went through Tyler's dresser and a garbage bag full of clothes that he now fits. Lots of cute outfits to choose from for the holidays!

Tyler somehow got himself in under this thing. Not sure how, since you have to climb up a bit and crawl into it! He wasn't so happy about not being able to get out though!

This is the Moby Wrap I got in the mail earlier this week. He sure liked it!

This is the Mei Tai carrier I just talked about. He was trying to turn around and look at the tv

Dawson's nap was getting a bit late, so I let Tyler wake him up! He was thrilled to be able to really explore his brother without getting swatted away. He poked at him for a few minutes before Dawson even woke up!

Friday, December 11, 2009

Shopping and Packages in the Mail

The boys and I went shopping tonight. That was both fun and very cold! We went to Payless for some boots for Dawson. They only had 1 pair for toddler boys! It was too narrow. The lady working there was pretty rude, didn't think they could possibly be too narrow since they make boots wider to begin with. I couldn't find boots either, not a big surprise there.

We went to Walmart and looked at toys. Trying to figure out what to get the boys for Christmas! I have no clue! I look at things and just know they'll play with it for a few days and it'll just end up being kicked around after that! The boys loved looking at toys, they were both trying to reach and push all the buttons. They weren't too happy that I limited their button pushing, for fear that everyone else had touched them too and who knows what germs are on there! After the toys Dawson had a meltdown. I'd wondered at what age they start realizing that you can bring home things from the store, thus wanting whatever they see. Apparently that is now! Unfortunately for Dawson, the only thing that resulted from his tantrum was being moved to the seat of the cart and strapped in, since he was trying to fling himself out of the cart basket.

After the toys we went to the Christmas section. I went over to the singing, dancing stuffed animals and they loved that. Tyler got excited from the beginning. Dawson was trying his hardest not to smile but I could tell he was struggling by the 3rd one. We came to this rapping Christmas puppy who was breakdancing on his butt and he totally lost it. Both the boys were all giggles, it was so cute. We had a smaller tantrum on the way away from those, I think he realized it did him no good the last time either!

I found boots for Dawson, they were cool Transformer boots, the only ones I found that fit him. I put them on and the velcro didn't even go all the way over to the other side! So they fit, they just wouldn't close! I was so frustrated. Don't they try them on a person before putting them on the shelves? The velcro would work great if his legs were the size of his wrist!

We also went to the library and got a couple movies for Dan and I this weekend and some Blue's Clues for the boys. That kept them entertained while I cleaned up and put away the groceries.

I still haven't decorated the tree, it has 1 ornament on it, one I just got in the mail yesterday. She found it at Target, from the Childhood Cancer Research Foundation. It's pretty! She also included a Leap Frog Phonics alphabet toy, a Moby Wrap for carrying Tyler in so I can get things done around the house, and a gift card, as if the gifts weren't enough!! Some people are just so nice, it's overwhelming.

I got Dawson's potty chair in the mail today. I didn't find one in the stores that I liked, people had said the store ones don't work well for boys so I got the one they recommended. It looks like it should work a lot better. Not pushing the potty training yet, he's just now starting to acknowledge when he needs a diaper. I thought it'd be nice to have it though, for whenever he's more ready.

Tomorrow Tyler gets labs and the lady is going to call to schedule Dawson's development evaluation appointment, based on how the labs are. Hopefully we can get going with this next round so we can get to maintenance and get into somewhat of a normal routine again.

Wednesday, December 9, 2009

Beginning to look a lot like Christmas....

Today went pretty fast. Tyler nursed a lot this morning as usual, so we just layed around and didn't do much all morning. It was snowing and blowing so I really wasn't in the mood to do much anyway!

I finished the movie we watched last night. I had fallen asleep towards the end. Then I had to return it before 9pm. I was hoping the snow would stop, or at least the wind would die down but it didn't. I finally ventured out around 8pm, at least there was less traffic. Dawson slept through the entire trip and Tyler wasn't so happy about being in his carseat again. He is really against that thing! Thankfully there's a redbox in the entry of the McDonalds that's like 6 blocks away, so we just went there, didn't even have to drag the kids in. So we were there and back within 10 minutes. :)

The snow put me in the mood to get the tree up. I've been meaning to do it but either I'm unmotivated or the kids are being too needy for me to get enough done. Today they were playing pretty nicely by themselves for a while so I decided to go at it. Got the entire corner cleaned up before Tyler started crying. I brought him over to help with the tree. He thought the branches were really funny. Dawson helped too, he handed me branches out of the box. I got the lights on the tree but that's as far as I got before Dan got home and Tyler wouldn't settle down anymore. Apparently holding him while still working on the tree isn't adequate attention! At least it's up, that's the biggest part. Dawson was so nice and layed out all the ornaments for me while I nursed Tyler. How helpful. :)  I put them all away, much to his disappointment. It was his bedtime anyway so I figure he can help me decorate tomorrow.

That's about it for today, didn't seem like we did much. Tyler thought the snow was cool, the cold patio door was amusing to him. He's getting pretty close to crawling, he can move his knees but they slip on the carpet and he falls. He just needs to figure out the arms and we're in trouble!

Tyler exploring the tree

He liked hitting the branches

Dawson being helpful

The finished tree, Dawson had already started pulling ornaments out!

Monday, December 7, 2009

Home Care, Shopping and Crazy Boys

This morning started out with a visit from Tyler's Home Care nurse, Jenny. I like her a lot better than her substitute, that other lady annoys me to no end! Jenny is our case manager too. The only thing I didn't like was I smelled smoke on her when she arrived today. That really bothers me. Anyway, Tyler was perfect for her, sat still and smiled. He decided to do the syringe flush himself today, once the nurse got the syringe on his tube, Tyler grabbed it away from her and tried pushing on it. He's not quite strong enough though, I think he had a bad angle on it. Was pretty cute though, he defintely has the concept. How sad is that?!

I have Home Care call me as soon as they recieve his results. Jenny also said she put a rush order on the labs so they'll get done faster. They used to fax them to Children's Clinic and our clinic nurse Mary would call me. Well that takes half the day and I'd like to prepare if we need to go! I'm not taking Dawson with me this time because Tyler needs a bunch of things done and Dawson only lasts so long there. So Home Care called about an hour after Jenny left, saying the results are in. His counts were up but still far below normal. I asked for the ANC and she had no clue what I was talking about. Nobody does! I don't understand it, but I have to explain what ANC is to every person I call to get counts from, except the Children's nurses, they get it. An hour later she called back and said that she had recieved the ANC results. It was low, so we will be doing more labs on Friday.

I both like and dislike lab days. I like it because it drives me nuts not to know what his counts are, since I got used to that everyday in the hospital. I dislike lab days because I never know what time they are coming! It's not an appt, it's "we'll be there in the morning". To some nurses that means 8am, to others that means 10am! Being 2nd shift people, it's not easy getting up at 8, but I don't want to be scurrying to get dressed if they knock on my door at 8am either! So that's frustrating. I also don't like waiting around for results, I feel like half the morning is waiting and the other half is spent on the phone between Home Care and the Children's nurse! I consider myself lucky if we get everything figured out by 2pm!

Dawson slept through labs today, so Tyler and I got to go back to bed. For about an hour, which really means I didn't get any extra sleep! Tyler wants to nurse, then with waiting for the phone to ring, I really can't sleep anyway. Last night went well though, Dan put Dawson to bed and he didn't even cry at all! He was pretty tired. Tyler was awake and bouncing between Dan and I while we watched Pearl Harbor (Dan's idea, since today was the day it happened). He finally fell asleep and I tried putting him in his crib. It worked!! I don't know if it was the way I layed him down (boppy first, then him instead of all at once), or if he was just that tired. Who knows. Hopefully he'll sleep in there again tonight! He did wake up once and came in with me, so I think he slept in his crib about 4-5 hours.

Dawson had a bit of a rough day. He seemed to be trying to make a statement or something. For a while he was a 2 year old on a rampage! He knocked a couple speakers over, was hitting the tv, making a mess, taking Tyler's pacifier (hasn't happened in a while) and anything he could think of to get attention. Not sure what brought on this sudden bad behavior, nothing really changed in our schedule today. I actually had Tyler in my lap less today, so I don't get it. This was throughout the day. It ended with me finding that he'd chewed and spit out half his apple. I had him help me clean it up. Just what I need when I'm trying to keep the place clean for Tyler is tiny pieces of rotting apple all over!! He's especially sensitive to mold, so we had to make sure to clean it up really good.

Tyler was really good today for the most part. He played on the floor and scooted around backwards, sitting up when he found something he wanted to play with. It's cute how he can get around now. I'm sure I'll take that back later! He's been more curious lately. Last night he was trying to pick my moles off, which really hurts! Today he was sitting in my lap at the computer desk and was grabbing at things on my desk. I had been snacking, thankfully I was done. He threw my plate onto the floor, then grabbed my cup. Unfortunately I had just filled the cup with really cold water from the fridge. It spilled on both of us, getting our left legs wet. He didn't even cry! I was surprised, he looked more sheepish than surprised. I think he realized he did it to himself! 

We went out for a bit today. I wasn't planning on it, but I realized some of the diapers on Tyler's shelf were actually Dawson's. This left Tyler with about 5 diapers! So we went to Target for diapers and got a free Redbox since it's the first Monday of the month (they text a code to my phone). We also went to Cub because we were out of some things already. Tyler barely made it through Target, and that was a quick 5 minute trip. I put him in the Bjorn for Cub and he was so happy with that. Got all my stuff, Dawson was sleeping in the basket so I was putting things around him and in Tyler's carrier. Got up to the register and the lady was asking questions about Tyler, I get that all the time. Then there was a goof up with an item so we had to wait a while. The manager came and fixed it, then bagged my groceries for me. She noticed Dawson in the cart and called someone to bring me another cart. Not only that, she made the cart boy wheel the other cart out for me. I'm used to doing everything myself, so this was weird and a little embarassing! As if having a baby with a mask doesn't turn enough heads! I even told her I usually just put the bags below the cart, but she insisted. It was nice though, the guy even offered to put the stuff in my car but I declined. Nice to see people thinking of others though. Half the time I feel rushed to get my change and wallet put away before the person behind me runs me over in a huff!

Other than shopping I really didn't get anything done today. Labs and cleaning Dawson's messes really took up the majority of my day! I'm hoping to get a bit cleaned tonight before Dan gets home so I can at least feel like I got something accomplished! As for pics, I'm using my desktop now, and all the new pics are on my laptop. I do have lots of cute new pics, so I think I'll have those uploading while I clean. :)

Sunday, December 6, 2009

Settling In

It's been a really long week! It's been nice to be home but it was a big adjustment for Tyler. He's used to the bright florescents, the beeping IV machines, the nurses coming and going. Here it's darker, quieter and with less people to spoil him. I don't get meals delivered and they sure don't make themselves, so Tyler has to get used to playing on his own.

The first day he was really clingy, I hardly put him down for anything because he'd scream. When he screams, he gets really sweaty and his chest dressing comes off. Yesterday I put him in the ring sling and worked for about 90 minutes. I got a lot done but my shoulder hurt. A couple people are sending other types of carriers, they are supposed to be easier on the back and shoulders. I heard from the other cancer moms that their babies were clingy and often needed to be worn or held all day. Can't really blame them, they are sore and feel like crap. With Tyler's upcoming round of chemo, I'll be needing that. He'll be on steriods and chemo, which was the worst time emotionally for both of us. He was moody and clingy and it was hard seeing him that way. The other moms refer to it as "roid rage" and for a good reason!

It seems like every method I learned from Dawson just doesn't work in Tyler's case! It's like starting all over again. I worked so hard not to spoil Tyler, he was so content, he even learned how to coo himself to sleep in his crib at just a few months old. Now he refuses his crib. I'd love to say he sleeps in there, but he doesn't. I have no clue how, but it doesn't matter how deep of a sleep he's in, when I try to transfer him to his crib, he screams. Not just lowering him in, he knows when I stand up to move him and he stirs. So I stand there and shush him back to sleep. Then I walk slowly to his room, feels like this takes minutes to even get there. Never fails, as soon as I walk into the room he fusses. If he doesn't fuss then (rarely), I'll be lowering him into the crib and he'll wake up, scream, arch his back and flop off the boppy pillow onto the crib mattress. Then he gets to his hands and knees, backs up to sit, reaches for the crib railing and is standing up. In seconds!! I have no clue how he can go from sleeping to actively climbing up in his crib in a matter of seconds but he does. Then he's WIDE awake. So we sit down and do it all over again.

Sometimes he sleeps on the couch, which I really don't like because he can move. I cram couch pillows all around him and he really can't move when he's on his back, so he just squirms and screams when he wakes up and I run in there and get him. He usually wakes up in the middle of the night once, so I bring him to bed to nurse. A bad habit, but after a couple nights of getting no sleep, trying to get him to sleep in his crib, I gave in. I need sleep to keep up with these 2! With Dawson I let him cry to sleep at this age. He knew it was bedtime, and it got easier each night we did it. I can't with Tyler, he'll sweat too much. So I'm at a loss. This will only get worse once we start the chemo, so I'm really hoping to get a routine established before then and stick with it. The other big thing is that he shares a room with Dawson, so his crying wakes him up. I would put Tyler to bed first, but Dawson cries when put to bed also, which wakes up Tyler. So it's a lose-lose situation. We're debating moving Tyler's crib into our room or something. I'm hoping he'll miraculously start sleeping well before it comes to that!
Tyler still isn't eating baby food but he's closer to it than before. He's playing with the spoon and a few times if we took it slow enough, he'd grab onto the spoon, stare at it a while and then open his mouth. The nurses and everyone were more pushy which really turned him away from eating solids. I always thought it's best to go easy and make it an enjoyable experience. I did get some in there a couple time just so he knew what it tasted like. He didn't seem to mind too much, so hopefully he'll start eating soon.

Dawson has settled in well. He's back to his old routines and old toys. He loves being home. He even puts up with Tyler a little better than before. I think he realizes that this is as good as it gets! He seems very happy to be home. He's been saying "hot" more often now. I haven't heard the other new words again though. I haven't heard from the EI (early intervention) lady yet, I'm hoping she'll call Monday since Tuesday will be crazy (if Tyler makes counts). Tomorrow we get a visit from Home Care to do labs, so I'll know sometime tomorrow afternoon if we're going in on Tuesday or not. I'm not looking forward to getting up at 5am to get there by 7! Thankfully chemo days shouldn't be that early, it's only a biopsy thing.

I'm doing pretty good. I've been having some weird abdominal pain. Tyler was standing in my lap and stepped right above my hip and I think he bruised something. Sometimes I don't feel anything, sometimes it hurts when I'm carrying someone around. I have no more jaw pain but that section of jawline, part of my lip and chin are still numb. 3 of the holes are healing up well. The one that keeps getting food stuck in it isn't healing so well. It's red and a little sensitive. Hopefully that'll start healing soon. I need to use that mouthwash more often, I've been bad about that!

I've been getting more done in the last couple days. I finally unpacked! I got the bottles washed, they just use and rinse them at the hospital, then send them all home for me to wash. I got everything sorted, including the medical bags from the last few times. I have quite an impressive drawer of ointments. Mostly diaper ointments, but also eye treatments, bone marrow site cream, even some aromatherapy. I'm moving some supplies to next to the changing table. They are currently across the room, which works well because I can't have that high of a thing on the tall dresser. I also need a spot for all the chemo stuff that's coming that needs to be higher up than his basic supplies, so this should work well.

I got my summer clothes put away, and my maternity stuff that I kept putting off. I can actually start using my dresser again! My next projects are the kitchen and getting the tree up. I need to sort and find homes for a bunch of stuff before I'm able to do the tree but I'm really hoping to get it up this week. The boys will love the lights so I'm excited to get it up. Yet I'm not looking forward to dealing with them messing with it!

Here's a really cute pic of Dawson

Here's the central line pouch/holder that I got for Tyler

 It has a pouch in the front with velcro that we just tuck the end of the tubes in. Now they don't dangle in the way or get pulled on as easily.

Tuesday, December 1, 2009

We're Home!

Had a busy but good day. There's no place like home! I got the official word around 10am that we're going home. I got the Ronald McDonald house packed up and cleaned in an hour! New record I think! I was prepared too though, I had already gathered things into boxes so I didn't have a ton to do. Picked up Tyler's antibiotic at the pharmacy, went over meds and things about Tyler with the nurse and got him out of there. We were pulling out around 12:45.

The boys did great once we got home. Tyler played by himself for 2 hours! He was loving the new place and new toys. Especially with his new abilities! He can go from sitting to laying, roll over, get on hands and knees, and hands and feet. He can also get back into a sitting position from his hands and knees. A bit later he was standing up against something and let go for a couple seconds. He fell down but that didn't faze him, he was laughing, happy at the fact that he actually stood by himself!

Dawson is enjoying being at home. Not liking that Tyler is getting so much attention though. Any attention at all and Dawson is right there, trying to get some of it back. He played with toys he hasn't seen in a while, so that kept him pretty occupied. I put in Blue's Clues and he smiled and said "Blue". Haven't heard that one before. He didn't get the L sound, but a lot of kids this age don't either. He was running back and forth through the apartment. He was just so happy to have so much space to run in! The hospital room doesn't really have enough room for a 2 year old to play.

I have a lot to do this week. We need groceries, I have to clean, unpack, organize several areas. Some of it I have to do tomorrow, other stuff will take a while. Now that I'm home I'd like to get working on some areas that are bugging me around the apartment. I want to especially organize Tyler's stuff a bit better. Everytime we come home from the hospital, we get more supplies and stuff that's half used up. Then we get back and get more of it. I cringe to think about how many half used tubes of diaper rash ointment and other things I have in there! I really miss the hospital crib! You really get spoiled with those. Goes all the way down to the mattress, has a door on the end so you don't have to slide it down sometimes. And the biggest thing, Tyler is used to sleeping on an incline! I realized this as I layed him down and he screamed and tried sitting back up. So he's sleeping in his boppy in the crib for now. He was there too, so it helps to have something familiar to sleep with.

Bedtime was tough. Tyler fell asleep around 11pm and I put him in his crib with no issues. Then I put Dawson to bed around 12:30. He cried and screamed until he woke up Tyler. So I went and got Tyler out, put Dawson back to bed and left the room. Dawson was NOT happy that Tyler got out and he didn't! So he took a lot longer to go to sleep. Finally at 2am Dawson was sleeping and Tyler had fallen asleep on my lap, so I put him in there. The nurse says he sleeps though the night, so I'm hoping that's the case at home too!

Playing together

Playing just after we got home, they made this mess in about 5 minutes.

Dawson was running and jumping all over once he got home, he was pretty happy. :)
 Coincidence? Didn't seem like it. He picked through and collected some yellow blocks, then looked in the toybox and found his yellow ducks and threw them into the kitchen too.

Tyler is getting more active! He's getting very comfortable changing positions.

Playtime in Tyler's crib

Sunday, November 29, 2009

Thanksgiving and more Hospital time

We had a good Thanksgiving. We only got invited to my side of the family this year, so we went to my aunt's house. Hadn't seen her new house before, it's really nice! Dawson was very uneasy at first because he thought I was going to leave him there, but he warmed up eventually and by the end of the day he didn't want to leave!

Dawson said a new word the other day! He pulled me to the fridge, pointed for me to open the door and pointed at the crisper. Grabbed an apple and left the kitchen. I always talk through it, trying to get him to ask for it but he hasn't yet. So Dan and I headed back into the living room where he went with his apple and Dawson walked back up to us. Stood there a bit, then looked up, lifted his apple a bit and said "apple". We both clapped and made a big deal out of it, he clapped and then he said it again. :)  He had an apple again today but couldn't get him to say it.

Dawson has a developmental appointment tomorrow morning. Mostly for speech but I believe she'll do the full evaluation. If they think he needs it, someone will come to our place and work with him for a bit. I did the initial developmental evaluation tonight and it looks like he's just a bit behind on social/communication and speech. Otherwise he's right on track with everything else. The fact that he is picking up on new words is a good sign, he just isn't doing it very quickly and might need a nudge in the right direction. Sometimes having someone else working with them is just what they need. With parents, we know what they want even if they don't say it, and they know this, so what's the point in telling me he needs an apple when he can drag me to the fridge, open the drawer and grab one? Hopefully this will help. I'm sure someday I'll be wishing he didn't talk so much!

Tyler is doing great. His counts are up a bit. He missed Thanksgiving because he's not ready to go home yet. He's in a great mood though. He just learned how to go from hands and knees to hands and feet. He just isn't sure what to do from there! He hasn't figured out forward motion on his knees yet. He can walk backwards several steps and he'd done forward about 10 steps in his room. I never thought he'd go across a bigger room, but he's proven that with enough determination he can do it. His favorite nurse assistant was playing with another patient in the playroom and Tyler wanted to go over there. I put him on the floor and said if you want to see him, you can walk there...and he did! Holding onto my hands, he quickly walked towards him, grinning the whole way! It was cute. I wish we could take a few of those nurses home, we're gonna miss them!

I'm doing ok, my jaw still hurts and I still can't open my mouth very far. I was having is sues with food getting stuck in the holes where my teeth were (ew!). It was hard to get it all out. They are finally closing up though, some are closed and some are close. They are still very sensitive there though. Part of my jaw, bottom lip and chin is still numb. Not sure how long that's supposed to take, but it seems to be very slowly gaining the feeling back. It used to be almost half my face, not it's just about 2 inches along my jaw. It's a bit tingly now too, which is really bugging me, it's itchy! On top of that, I have an ear infection. It's not as bad as some I've had, but it's pretty painful. All the way down my neck pain and my ear throbs when I lay or bend down.

Dan is doing good. He has a lot to do before the snow flies and work is bugging people to work overtime on the weekend. Next Friday is the Brian Adams concert we're going to. I'm excited! He's been to several concerts before but I've never been to one. I just hope my ear infection goes away before then!

Tuesday, November 24, 2009

Crappy Week, New Breastpump

Yet another week inpatient. I'm very frustrated at Tyler's numbers not coming up. Also because Dawson is so bored and frustrated with being stuck in a tiny hospital room all day. It's been a bad day overall today. The boy next door to Tyler passed away. All the nurses were crying, so I stayed a bit longer than usual to let them deal with the situation. Overall I've been in a crappy mood. Just sick of being there. I thought we were going home 2 weeks ago, so every day past when I expected to be home is hard. You'd think I'd stop planning for things by now, but I'm a planner and this is driving me nuts! It's been 5 months since diagnosis, 19 months to go. Feels like a long time yet but I'm glad we've made it this far.

I got a new breastpump, mine wasn't working right and I need to pump so the Dr wrote up a prescription for it and got me a new one since it's mandatory because of "parent/child seperation". I can't believe those things are $427! That's crazy! Thank goodness they got it to go through the insurance!

Thank goodness for volunteers. They take Dawson to the playroom. Dawson got to go once today, he really thrives on being able to go. Everytime the door opens he runs over and looks hopefully at the person walking in. It's usually the nurse and unfortunately they visit often, so it's a lot of dissapointment. I can request volunteers but they aren't always available.

I wish I could take pictures. I can't post them anymore because my laptop stopped working. I can't even take any because I need to get my pictures developed so I can get them off the card. I should probably go through them again too and delete some that I don't really need printed. It's harder deleting pics since Tyler was diagnosed. You just never know how many more you'll get to take. Though I'm feeling a lot better about it now, you just never know. It's hard to know which ones to delete, every smile is cute, and the funny faces are cute because it's part of his personality too! I think it's safe to say I'm addicted. To the kids, the camera, or most likey all 3. :)

We got invited to Thanksgiving at my aunt Shelley's house this year, so Dan, Dawson and I are going there for the holiday. It'll be nice to get out and go somewhere.

Thursday, November 19, 2009

Back with Tyler

Feels so good to be back! We packed up and left before noon. Got to the Ronald McDonald house and set a new all our stuff hauled in on 1 trip. Thanks to a hotel luggage cart and a double stroller with an empty seat. We got put on the same floor as usual, only on the other end of the hall. So now we've been in 3 out of the 4 corners of our floor. Room looks the same, but this one has a microwave and for the first time, Dawson has his OWN tv in the loft! For the first time, he LOVES being up there and claiming the loft as his own. As much as I like cuddling him at night, it's best that he sleeps in his own bed. We both sleep better that way. He wakes up a lot when he's in with me and I wake up being elbowed or kicked!

I got a laptop at the hospital. The Geek Squad took over the laptop rental just this week. They provide free repair and diagnostic services now, you just pay for parts. They also have cell phone charging docks, since most parents forget the charger the first time. I didn't, but I did lose it once so it came in handy. They have 2 servers now. He said they're more tight on the general server for everyone since kids are using it. You can't see facebook, blogger or any other social networking sites. Being that I live on those places, I got the other server! Just required some signatures, thankfully.

Tyler looks great. He's pale and has some bruises but his attitude is great. He was in his highchair getting some food when I came in. He was smiling at the lady, but once he saw me he looked at her, cried, then looked at me and was grinning and trying to get out of the highchair. He looked like he wanted to fly out of there but his thoughts weren't doing the trick! I picked him up, he grabbed my hair and held onto me for a while. Then he wanted to nurse, so he nursed for a little while, stopping to grin at me every several seconds. The Occupational Therapist found it pretty funny. She was asking me questions on what I'd like her to be working on with him. It's nice, he has OT, PT, a massage lady, music therapy, volunteers that play with him, nurses that play with him.....he's pretty spoiled!! He was giggling at Dawson running around the room. He thinks highly of his big brother already, it's so cute!

Yesterday, even last night I had a horrible headache and my jaw was really hurting. My lips, jawline and cheek were still numb too. After I saw Tyler today, it all went away. I've had very little jaw pain. I've only taken meds twice today, and that was pretty far inbetween. It's only a dull pain now. I can chew without sharp pain too. My headache is completely gone. Just like that. I'm thinking it was the stress of everything, not being able to go back and be with Tyler, being sick, being worried, etc. Feels so good to be back, it's a huge relief. I'm still numb but a little less than before. The swelling is going down still. That's mostly what I'm taking the meds for, to keep the swelling down and get everything to heal. I'm hoping by Thanksgiving I'll be able to eat what I want!! Otherwise I guess I'll just have to hog the stuffing. ;)

Dawson did good today. He played with toys, layed on his tummy on the mat when Tyler was having some tummy time and then made a big mess of the room. Nothing new there. He likes throwing toys and clothes everywhere. His newest thing is sticking paper through cracks. Drawers, doors, both the side and bottom. Being that Tyler is in a pressurized, sealed room, there's rubber at the bottom of his door. Didn't stop Dawson from shoving something under it. He was quite upset when his fingers got stuck and he couldn't pull them back because the rubber only goes 1 way. I was changing Tyler's diaper but the nurse who was in the room went over to help but couldn't get his fingers out. I went over, lifted the rubber on both sides of his finger and he was out. Not the first time he's done that, but nurses say he's the only one to their knowledge who's managed to get anything under there!

Tomorrow should be fun. We're going to see Tyler for most of the day. I might be babysitting another 2 year old in the evening and Dan is coming to spend the night with us after that. It's exciting to have something planned. It'll be especially nice to see Dan again. Seems like I've seen him a lot but really we didn't get much time together. I wasn't feeling good after surgery, then he was sick so I stayed away from him as much as possible, then I left! It stinks. Hopefully Tyler's counts will start going up soon so we can be home and maybe even develop some sort of a normal routine again!

Long Week, Awesome Hubby

Had a busy and crappy week so far. Dan came home early Monday with the flu. It's been over 48 hours now, Dawson and I are still healthy, so we're going back to the cities tomorrow. Dan stayed home today because he was still wiped out from having the flu. He got more energy in the evening though, and ended up cleaning the bathroom, living room, doing dishes, laundry, taking all the garbages out, cleaning the tv, computer monitors and cleaned out the linen closet that Dawson had messed up. I love my hubby. :)

My jaw is still hurting, my face is still numb. It's driving me nuts! I have a horrible headache to top things off.  I'm currently 2 hours past due on my meds and I actually feel ok so hopefully I can start slowly backing off on those in the next few days. I hate being dependent on meds. Ironic, being a cancer mom, huh?  I do still have a dull pain, but it's nothing like the sharp pain I was having before. I've found that ice cream helps a lot, it naturally numbs the area a bit since it's so cold, and it tastes good too. I only have 1 bowl a day though, as my body wouldn't react so well to living on ice cream! So I save it for the evening for a treat since that's when I'm usually in the most pain, from talking, eating and all that during the day. It's amazing how much you use your jaw and don't realize it.

Dawson is doing good. He's been getting pushy lately, so trying to stop that. He'll run up to me and shove me with both arms to get my attention. This week he learned how to blow. He can now blow bubbles and he blows on food. Today he came up to me while I was eating my pot pie. He said "hot" and blew on it! New word AND in the right context! Yay! :)  Dawson also got a haircut! It was getting long in the back and kinda crazy up on top. I decided to take him to Kid's Hair, they have a movie for them to watch, bubbles, toys and suckers. It was a good experience, I think it went well. He fussed some but really couldn't complain much, as suckers are a rare treat. :)

Tyler's counts are still dropping. He's expected to spend at least another week in the hospital. Hopefully nothing else will stop us from going down there tomorrow so we can spend time with Tyler. Even Dawson seems to miss his little brother.

On to the pics....
Dawson before his haircut.

After haircut! It hadn't grown in much in the sides in the front, it was mostly the back and some off the top that they did. I'm pretty happy with it, it's really even and neat looking.  The lighting is bad in this pic, he wouldn't hold still so I had to chase him down, delete the first 5 blurry pics and this is what I ended up with!
Tyler on Sunday when we visited him. His face looked kinda rashy around his nose and chin, looks like a sweat rash. He's pretty sweaty and most people like to pile on the covers at night because he's a baby. He would smile so cute, then go crazy when he saw the camera flash!

Nurses shouldn't have long fingernails! grr  This doesn't look as bad in the pic, but it was a pretty big/deep scratch I found when changing his diaper. Makes me mad because we try so hard to avoid bug bites and anything that will break the skin and then I find a huge scrape on his leg! With his platelets so low, they should be extra careful!! 

Monday, November 16, 2009

Wisdom Teeth are Out!

Had them out on Thursday, it's now Monday and I'm still feeling like crap! I'll start from the beginning.

I went in, filled out a 3 page form and got sent to a little room to watch a short video about the surgery and what to expect. Then I got put in another little room on the dentist chair, staring at a tray of surgery tools. In avoiding looking at the tools, I talked to the assistant for a bit.

The anesthesiologist came and quickly jabbed the needle into my arm. Then he said "this is gonna make you woosy, then you'll fall asleep". Well, he put 3 syringes in. First one did nothing, 2nd one I got woosy, 3rd one I was still woosy but not any worse. I was just hoping (and expecting) to fall asleep quickly and get it all over with. Tyler falls asleep within seconds of injecting the meds. I didn't, but I suppose I have a bit more body mass than he does! He opened my mouth and I felt a really sharp pain. I was thinking "crap, I can FEEL that!" So I was starting to panic about not being asleep, though my eyes were shut. I was cringing, and wondering if he could tell or not. Thankfully I only felt it for a few seconds. After that I still wasn't "sleeping peacefully", it was like a bad dream or something. I felt restless and I was seeing lights flashing by me or something. I'm not even sure, it was a weird sensation. I still can see it though.

I woke up what felt like seconds after that. The restless sensation didn't go away but the weird things I was seeing stopped and I heard someone saying "Wake up! Open your eyes!" in a rather impatient tone. I tried but couldn't seem to open them and focus on anything. Then the assistant said "Come on, open your eyes, we're get up". They pulled my legs around to the side of the chair and each grabbed an arm, telling me to use my legs. I thought they were being really rude and rushing me way too much. Luckily my legs were strong enough, I walked to a chair and sat down, then they got Dan to sit with me. They gave him the directions and asked us where to send the prescription to. What felt like 5 minutes later, they came back and told me to get up because it was time to go. Dan helped me to the car, I still couldn't seem to get my eyes to open much. I slept through the pharmacy drive thru and woke up as we got home 10 minutes later. Dan helped me to bed and I slept off and on for 4 hours. After that my head felt a lot clearer and it was a relief.

I asked for a mirror and saw there was a ton of gauze in my mouth. I couldn't tell what it was and didn't want to touch anything until I had a mirror! So I took all that out, thankfully the bleeding had stopped. Later we read that the gauze should've come out after an hour. OOPS! They gave me Vicodin, Ibuprofin and an Antibiotic. I started with the Vicodin and alternated them every 6-8 hours. The Vicodin made me really drowsy, I had a hard time staying awake while on that, so I've been taking the Ibuprofin during the day, especially now that I'm alone with Dawson! I couldn't nurse for 24 hours, so I had to pump and throw it out because of the anesthesia meds.

It's been 4 days and I feel worse than the day I had them out! I have a horrible headache that has been there the whole time, my jaw is really sore and I can't eat anything that requires chewing. The last couple days my face has been half numb. I've heard that there can be damage to the nerve that runs along the jaw. Sometimes it goes to sleep for a while because of the trauma of surgery. I'm hoping that's the case. I've heard stories of people being numb from a few days, 6 weeks and one friend has permanent paralysis! It wasn't there right away, so I'm hopeful that it just fell asleep after a few days of pain. My left jawline is numb, along with my whole chin, halfway down my neck, almost whole bottom lip and half my nose. My cheek is numb too, and all the way up to just below and next to my eye. It's weird! I can't imagine spending another week like this, let alone 6 weeks or more! So hopefully this nerve will wake up soon! The ironic part is, the thing I was the most afraid of was my mouth being sensitive where the teeth were, and it being painful to eat or drink. I haven't had any sensitivity at all! Which is great, but I really wasn't expecting any of these other side effects!

I've taken to eating with baby/toddler spoons. They aren't as wide, thus easier on my jaw. I can't open my mouth far at all. I have a long line of stitches in my left cheek, not as much in my right but I saw some there too. Not sure why in the cheek, not thinking I want to know! I started working on the mouthwash they gave me. Before it hurt to drink, let alone swoosh anything in my mouth, but it's to prevent infection and bacteria growth, so I figure I'd better do it. So today I'm really sore from that too. At least it's the blue minty stuff, so it doesn't taste too bad. I was dreading to find out what was in the brown bottle. Do they enjoy making people worry? A clear bottle of blue stuff would've been much less intimidating!

On top of the pain, my energy is wiped out, I'm having hot flashes occasionally and some dizzy spells. Though most of the dizziness comes from the Vicodin. I was going to wait until I had less pain and felt better to go back and be with Tyler but I'm sick of waiting. It's not getting any better, some days it seems worse! So I'm just gonna go. If I'm not feeling well, I can always rest at the Ronald McDonald house. At least I'll be closer to Tyler and if I get lucky, maybe I can bring him out on a day pass so he can rest with Dawson and I at the RMH.

I have to say, after my experience I'm hoping to never need another tooth out again and I'm really hoping to never have to be put to sleep again! I really hope the experience is as peaceful for Tyler as he makes it look.

Thursday, November 12, 2009

We're Home!

Dawson and I came home today. I have my wisdom teeth removal in the morning, so Mom is gonna come watch Dawson for us while Dan and I go. I'm required to have an escort with me that stays there the entire time. I'm a bit nervous but I've been pretty distracted. I just got the news that Tyler will be Outpatient after he comes home on Friday! I'm very excited about that, we can be home a lot more, it'll be so nice. It was so weird cleaning up and leaving the Ronald McDonald House. Just the thought of never going back was a bit of a bummer. While I'd rather be at home, that place was so nice and Dawson loves it. It really is "the house that love built" as their slogan says. So much thought was put into making that place and the things they provide are so generous. They went way above and beyond what I had expected to find and I knew everyone loved the place.

It was nice getting to know that family. I have some pics of the 3 kids together, though Dawson wouldn't sit still, knowing I was taking a pic. It was nice having someone to talk to though. We exchanged Caringbridge sites tonight before I left so we can follow each other and stay in touch.