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

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!

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.

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 record...got 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!! 

 

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.

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.