Solving the Sleep Issues

Dawson's therapist came today, bright and early at 9am. Dawson has been getting out of bed by then usually, but today he had a harder time. Thankfully once he saw his therapist, he smiled, gave her a hug and proceeded to lead her to the playroom. He had a great session, his longest yet, from 9-noon.
At 12:15, Dawson's teacher came for a home visit to discuss how he's been doing. She said he's enjoying school and does well. She brought up Kindergarten and said sending him in the Fall is a good option for him. We'll be having a meeting with the Special Ed department of the Elementary school sometime after the New Year. It's so weird to think about starting real school! He's had a teacher since 2.5 and has been going to school on the bus since 3, but Kindergarten sounds so official!

I mentioned wanting to do a velcro board schedule for him at home and she thought that was a great idea and even offered to make it for us. The school often provides that stuff at home, and she said she already has an extra one sitting around that she's not using that's just like the one he uses at school, so that should be easy. We went over the different things we do and she made a list. She'll be sending it home with him this week. I'm excited!

After his teacher left we left and met up with a friend at McDonalds to play. I hadn't been in there since the day Tyler was diagnosed. It was where I recieved the call about the bad lab results. Tyler was sleeping in his infant carseat while Dawson played. I remember the day like it was yesterday, I'm sure I always will. It was nice creating some happy memories. Dawson chased the girls around saying "I'm gonna get you!". It was so great hearing him interact with other kids. They are older too, 7 and 10. He usually doesn't pay much attention to the older kids.

I also got to meet someone who followed Tyler's story at the end and realized she's in the same town. She did a Scentsy fundraiser for us and even gave us some wax to burn in our warmer that I got from another friend.  There's just a lightbulb in there, so no flame to worry about and the wax really doesn't get that hot, I can touch it and it's warm, but not going to burn you. I turn mine on for about an hour and turn it back off again since the aroma stays around for a while. The warmer holds a picture, so I used a wallet of Tyler's 2 year picture and when the warmer is on, the picture glows and it's so neat. It's so hard to be without him and I'm grateful for all the amazing people I've gotten to know because of him.

 We can see it glowing even in the daytime, it's really neat

 All the bars she gave us! They're $5 each and last a very long time. Each one has about 8 little cubes in them and I'm still using the first little cube! It re-hardens when I turn it off for a while, but I've been using it for a while and haven't noticed the level going down at all. When I'm done I can pour it back and try a different scent. It's nice freshening the place up a bit, especially with the boy's room right off the living room and I sometimes notice that slight diaper pail smell.

 Here's the lady I met up with. She didn't ask me to advertise or anything, but she was super nice and I thought my local friends might be interested. You can order online too though. I never thought I'd be into anything like this, but it's nice to have. I'm looking forward to the "cookie" and "baked apple pie" smells. Right now I have Black Rasberry Vanilla going.

Since we got back home, I got these 3 necklaces. I love them! This first one was engraved and we have 5 necklaces and a keychain of this picture. Dan wears his everyday.

This one was hard to get a picture of, but it has the 3 boys' names around it

 I wore this one to the funeral, it arrived at 8:30 that same morning, just as I was wondering what necklace to wear. The one I'd planned on ended up being too short. The big circle says "always our wild thing", it's from his online group, we were all due the same month and have gotten to know each other well. The group is called Wild Things. The gem is his birthstone.

Dawson got a haircut! He was looking pretty shaggy before. He did great and only needed verbal reminders to sit still. A couple times I had to ask if he needed me to hold his arms, but he quickly said No and held still. He's getting so big! Here he is playing with his playdough. The therapist had made lots of balls that he's been taking in and out of the containers, so I gave him an egg carton and he loves putting all the balls in that.

The teacher and I talked about Dawson's schedule and his sleep issues a lot during our visit. I've been struggling with his bedtime for a long time. As a baby he was colicky, around a year he started getting out of his crib and hasn't really stopped. He goes to bed ok, he knows it's bedtime and doesn't put up much of a fuss, but he stays awake for 2-3 hours after I put him to bed. He'd crawl in bed with Tyler, who just wanted to sleep. Now he crawls in with Gabriel, or goes over to his crib and it annoys Gabriel too. He just wants to sleep. His teacher recommended a Melatonin suppliment. Naturally, your body makes Melatonin. It's what triggers your body to be tired and fall asleep. Autistic children often don't produce their own, so they have bedtime issues. So I went to the store and found it in the vitamin aisle. Gave him 1/2 pill about 30 minutes before bed. It was weird cutting and dissolving pills again. It was Tyler's bedtime routine, 1/2 chemo pill.

We made other changes to his routine also. She said no tv/computer/electronics an hour before bed. Those things stimulate the brain too much. So to occupy him we did playdough, coloring and books. We usually do those earlier in the day and relax with computer in the evening, so I wasn't sure how he'd deal with the change, but he did great. He's been playing with more toys lately anyway, so it's nice seeing him get comfortable. He even got out the trains, which is the first thing he's played with since we got home that Tyler used to do. She also said nothing with lights or animation while going to sleep either. He had a Baby Einstein fish crib toy in his bed, he watched the fish swim by and listened to the music. So I removed that and put on a baby lullabye cd instead.

At bedtime he went to bed ok, but when the lights went out and I turned on the quiet music, he wasn't happy. He screamed "music off!". I decided to let it go a bit and see what he'd do. After a couple minutes he was sounding tired, but still protesting a bit. He went to bed at 10:15 and fell asleep at 11pm! That's the earliest he's been to sleep since we got home over 6 weeks ago. Usually it's midnight-1am. Hopefully it will go well tomorrow also! I'm going to bump the bedtime back more and see how it goes.

Discharged from Children's

Today was a crazy, busy day! Tyler was scheduled to be discharged from the hospital. My van broke on Sunday, so I was stuck with the car. I managed to get 3 carseats in the back and the stroller in the trunk, so I really didn't have room to move Tyler's stuff out of his room! Especially Gabriel's big stuff. Thankfully another cancer mom who I met on Facebook offered to bring her van over and get our stuff back to RMH. Was such a relief to find out I had help and it was nice to meet her too. It's hard meeting up with other cancer families. We keep missing eachother's clinic visits or hospital stays, or one of the kids has a fever and we don't want to risk the other patient catching something.

Tyler needed 2 transfusions today, blood and platelets, so those weren't done until 3. Dawson had Speech at 3 and I didn't want to inconvenience my help by making her get stuck in rush hour on the way home, so she came early and we made a special trip to RMH to get our stuff there. Dawson was very confused! We got to the hospital, he played in Sibling Play for a while, just to turn around and go back to RMH, turn around and head back to the hospital again. He did very well with the change of routine though. He had some moments where I needed to slow down and re-explain what we were doing and give him some hugs, but he did pretty good. His concept of "first we're doing this, then we'll do that" is really getting better and that helps immensely.

We got back to the hospital and went straight to Speech. We were cutting it close and ended up being a bit late. The old guy we followed who was doing 15mph across town didn't help either. I dropped him off at speech and went up to be with Tyler. Got the last few things gathered and went over discharge papers. We then walked the halls one more time and said goodbye to all our nurses. Picked up Dawson from Speech and headed back to RMH. Tyler was excited to be out of there, but quiet as usual. He seems to forget what life is like outside the hospital. This time though he didn't cry and seemed to enjoy his time at RMH. He ate lasagna for supper and happily played in the playroom.

The therapy dog was there tonight, both the boys loved petting the dog. Dawson especially seems to be really into animals. He pet the neighbor's gerbil that was on the lawn when we were home and he saw the RMH house dog, Jerry sitting by a window when we got there and he just had to go pet him.

It's always fun hearing stories about Tyler from other people. A mom came up to me at RMH tonight and said "is that THE Tyler from 7th floor?". She went on and on about how cute he is and how he always peeks in their room and says Hi when the door is open. He really is a social kid! He has everyone wrapped around his finger. We settled down soon after supper and just played in our room. He's having a tough time going to sleep tonight though. He was quiet for quite a while, then he started crying. I rocked him a while and he settled down, but now he's fussing again. They really do spoil him at the hospital! He always gets rocked to sleep. He also doesn't have the distraction of Dawson at bedtime at the hospital either! Dawson is still fighting sleep everynight. He was up until 2am last night! I woke him up a bit earlier today, had to about pry him out of bed, but I'm hoping he won't stay up that late tonight. It's almost midnight though and he's still bouncing around the room. Thankfully Gabriel has been sleeping through it all, he went to sleep 2 hours ago and is sound asleep. He's been sleeping through the night still, so I'm pretty happy about that. It's hard getting everyone to sleep in 1 room without waking eachother up as they fight going to sleep.

New Camera!

I got a call from Best Buy this morning. They got notice that the cost of fixing my camera would be more than just giving me a new one. I was just walking out the door anyway, so I went there first. They said they'd give me the most comparable camera. I told them I wanted to stick with Canon and they said there's actually one almost identical to the one I had, it's just the upgraded model!

So I went from 12.1 to 14.1 megapixels. 20x zoom to 35x zoom. The body is a tiny bit bigger, it barely fits in my camera case. Otherwise it's pretty similar. All the same features and a few new ones. This one has a setting where it will identify a smile. So I can hold it facing me and as soon as I smile, it'll automatically take the picture! Who thinks up this stuff?! It's a pretty neat feature though. Here's a pic of it....

I had a really long day. After Best Buy I went to the hospital. My 2 week parking pass ran out, so I had to go get a new one. I dropped Dawson off at Sibling Play, talked to the financial office and gave them our new insurance number and went up to see Tyler. I only had 45 minutes before I had to go get Dawson and bring him to speech, so I nurse Tyler and Gabriel together. I got a volunteer to play with Tyler more while I took Gabriel and got Dawson. I told him we're going to speech and he ran out of the room in a flash. By the time I got my stroller out the door and around the corner, he was gone. I went across the lobby, across the skyway and into the speech room, where Dawson was sitting there playing at the table with the other kids in the waiting room. He casually looked up at me, to acknowledge I had finally arrived, huffing and puffing! I wish I had half his energy! He'd been staying close to me all day too. The other moms looked amused. The speech lady was working with him on sticking by her. She said he did great on the way to the room, but on the way out he took off on her. Otherwise he did great. She's using picture schedules, and when he's done with an activity, he gets to take it off the board and look to see what's next. He really did well with that.

The rest of the day seemed to drag on. All 3 wanted my lap for most of the day. I was lacking in energy and motivation today. I had a lot of volunteers helping, which was a relief. I haven't been sleeping as well lately. Gabriel is teething and he's been fussier lately. Dawson has been fighting sleep until past midnight still. He just got quiet and it's almost 12:30! The other night it was just past 1am!

I faxed those papers in to the Autism Center last night and emailed her this morning to see if she got them. She did, and we set up a time to come in and get an eval and intake stuff all finished up. We go in August 5th. I'm really hoping he'll start soon after that, so I'll have one less person to deal with through all of Tyler's testing and stuff before transplant. I did notice something new when I was looking over his paperwork from the Psychologist. Not only was he diagnosed Autism Spectrum, but a secondary diagnosis of Attention Deficit was on there also! I was thinking they had to wait until the rambunctious toddler years had passed to put that on there. I also found out that the Autism Center does in-home therapy and they can come to us once we're home! I didn't think there was any way they'd go that far, it's 90 minutes away! I'm glad that they can do that though, because it's supposed to be a long term program, lasting 2-3 years. I'm not really sure how that will work with regular school, I guess we'll figure that out once we get there.

Struggles

Today was rough. I dropped Dawson off at Sibling Play when I got to the hospital and headed up to Tyler's room. Speech therapy was in there with him, so we went to the playroom for a while. Gabriel was really fussy, he wasn't sure if he wanted to nurse or what. He's been sucking on 2 fingers lately, he has 2 bottom teeth coming in. My calm, content baby has been replaced by a fussy one. He doesn't want to be put down for very long at all, so things are getting more difficult. Tyler was happy for a while, but then the nurse gave him a bath and changed his dressing, which wasn't fun at all and put him in a bad mood. Tyler, Gabriel and I cuddled a while after that while Dawson played starfall.com on my laptop.

When I got Dawson from Sibling Play, he had a dirty diaper. I noticed it wasn't much and a weird consitancy. Sure enough, not long after that he was grabbing his butt and saying "owie". He got more and more insistant, Gabriel was screaming and Tyler started crying because of it all. So I decided to leave early. I got suppositories for Dawson on the way out and we had a relaxing evening at RMH. Gabriel settled down and took a nap, Dawson had another diaper that didn't seem like much, but it was a start. I'll have him on Miralax the rest of the week to make sure things keep going. Constipation is a pretty common issue with Autisic kids. When we first discovered it, the x-ray showed that he was completely backed up. I'm kicking myself for not just starting Miralax the other day when I was thinking he hadn't gone as much lately. That does explain why he's been more short tempered and has been having more behavior issues lately.

I put Gabriel in the exersaucer for the first time this evening. He seemed to like it, he was excited to be up and have new things to look at, but then he got fussy again. He also rolled over on the bed after a diaper change, which is impressive since it's a tempurpedic bed and you tend to sink into the foam a bit. Though I don't think he's heavy enough to make much of a imprint.

I've been really fighting Dawson with bedtime lately. With just having 2 queen beds, he just doesn't stay put. He has bunk beds at home and he's on the top, so he stays up there. There are rooms here at RMH with bunk beds, so I've asked for one of those if they open up. She said it could be a while, but I think it would make him feel more at home. When we go home he goes to bed with no issue, but here he won't sleep until after midnight and it's getting very old. I'm hoping once he starts going to the Autism Center all day, he'll be on a tighter routine and will be a bit more tired at night.

No wonder I don't get much done....

It's been a long, busy week! Seems like we're always doing something, people coming over or we're going somewhere. When we are home, I just want to relax and either be online or play with the kids!

On Sunday I bought a toybox off Craigslist. It's a lot bigger than the old one and fits the bigger toys. We did get a few things done that day. Dawson's teacher came over on Monday. That went well. Dawson recognized her right away and grinned. He then ran over and sat down where they sat last week. He sorted shapes perfectly, matched colors and did some puzzles pretty easily too. He really enjoyed the hour. I went through his toys a bit. I'm trying to get the sets of things together and in separate containers so I can bring them out when he wants them and get them put away again, instead of them just laying all over the place.

Here's the new toybox compared to the old one!

Tyler had an appointment at the Children's Clinic on Tuesday. My mom came and picked up Dawson at 8am. He happily ran outside and stood by the sliding door of her van, patiently waiting to be let in. He sure loves Grandma's house. Then Tyler and I headed to the cities. It was an uneventful drive there. Funny how driving to the cities used to be a big deal, now it seems as common as finding my way to the grocery store. It had been a few weeks since we'd been there, since Tyler's counts were low. The security person looked sheepish and apologized for forgetting my name. They often have my sheet half filled out by the time I get to the desk when they see me coming! Tyler loved seeing his nurses. He showed off his new crawling and supported walking skills to them, as they cooed at him and told him how cute and big he is and how much they missed him in these 3 long weeks!

His chemo didn't take long at all, they also checked under his dressing at my request. I thought it looked funny. Sure enough, he has a yeast infection at the site. After chemo we went up to the 8th floor and saw his old nurses, who apparently were just talking about Tyler, wondering how "their baby" doing. Afterward we dropped some cloth diapers off with Jen in Princeton and then headed to my parent's house for the evening.

Tyler's infected site. I'd taken a pic to maybe email the Dr but it wasn't clear enough to really see all the yeasty spots. But wanted to post it since the tube will be taken out soon and it'll be interesting to look back on. I only have pics of the dressing, not of it uncovered. The black stitch used to be almost level with the skin, it's pulled out that much and the cuff that's underneath the skin is pushing up on the skin, which is what's causing the biggest red spot right above the hole. Hope it doesn't gross anyone out!

Wednesday I had some shopping to do. I got a cart/highchair cover for Tyler at Once Upon a Child. Now once he outgrows his infant carrier, he can sit in the shopping cart seat without worry of germs. I bought a mini trampoline for Dawson. He loves bouncing and uses the couch. I've tried keeping him off it and it's just not happening. I can be sitting right on the couch and he'll still go back up and bounce after I've told him no! The boys were good in the stores, Dawson slept while Tyler played with a toy I brought. I was thinking about going through the Taco Bell drive through, so I checked my window to make sure it wasn't froze shut. It went down a bit, but wouldn't go back up! So it was stuck down about 2 inches, that got cold in no time, even with the heater on full blast.

Wednesday's meds. The horizontal stuff is oral, vertical is all for his 1 IV chemo. 3 are flushes and the red capped syringe is the chemo. His meds top to bottom are liquid vitamins in the bottle, Bactrum to help keep his organs safe, antibiotic for his yeast infection, 6-MP chemo and Zofran for nausea.

Before we went shopping, they were playing with the slide. Tyler would push the truck down the slide, bursting into a fit of giggles. Dawson would giggle too and chase the truck.

Thursday I had to go back out because I missed the customer service desk being open and I needed stamps. So I we went and got stamps and hurried home again. Brr! I set up the trampoline after I got home. Dawson loved it and I haven't seen him bounce on the couch since! Yay! I spent most of the day playing with the boys.

Dawson loves his new trampoline!

 So does Tyler, he thought it was cool to sit on!

 Then he discovered that bouncing a heavy ball toy on it was way funner!

 There's no springs, it's just these fabric stretchy straps. So you really can't get fingers pinched. I was very happy to see that! I touched it while Dawson was bouncing and the fabric doesn't even have big enough grooves to feel a pinch either. :)

Dan is home on Fridays and wanted to eat out for a change. We also wanted to get my remote start key fob that's been broken over a year now. Would've come in handy for the winter, but we've been too busy and they close at 5:30. So we got that finally, now we just have to get Charlie, a mechanic friend of ours, to program it for us. He's trained in that and does them all day long, so it shouldn't take long at all. We went to Arby's and ate in for a change. This reminded us why we don't eat out much! Dawson was making loud noises, Tyler wanted to throw napkins and things on the floor constantly. Dawson escaped over the back of the booth 3 times. We were watching him too, he's just that quick! This is why we make sure not to sit right by people! They only had 1 highchair, which Tyler got. This makes it more tricky. Usually if Dawson can't sit still in a booster, he goes into a highchair and then he's usually better. There really wasn't many people there, thankfully. Maybe 2 or 3 tables. 1 had a toddler, so they were just looking sympathetic! After we got home, Dan took my car to get gas. He also figured out the window problem. The window switch has some bad contacts. He got the window to go up, so that's a relief. He'll be taking that apart and fixing it soon. Hopefully the weather will warm up for him!

Dan's sister visited us that evening also. Dan had a good time visiting with her while playing with the kids. I actually got some dishes done without being bothered (shocking) and a couple other small things. Unfortunately, having late company had Dawson riled up and he wasn't able to settle down for bedtime. He's big on routine. We drink chocolate milk and he watches a short cartoon movie before bed. He usually runs right into his bed after I get his pajamas on. Instead he wasn't settled enough, I even waited until 2am, an hour past his bedtime, hoping he'd settle down. He banged on the door and threw a big tantrum. I tried talking to him a bit, he did settle down and gave a big tired sigh, but as soon as I left the room he was back banging at the door again. She left at 2:40 and he took until 4:30am to settle down and go to sleep. Tyler was up until 7am.

This morning Dawson woke up around 9am, so I'd gotten barely 2 hours of sleep. He ate his breakfast and I put his morning Blues Clues on for him. I fell asleep and he decided to make a huge mess. All the papers from my computer desk (I have 3 cubbyholes in my hutch) and the entire diaper box of CD's and papers next to the computer desk were all over the floor. A lot of the CD cases were cracked, batteries were out of the remotes, etc. Half the living room floor was covered with stuff. He's always tougher to deal with when his sleep routine is off, so hopefully everything will be back on schedule soon. Tonight I put him to bed at 2am, since it was 4am last night. He fought it until about 2:30 that I heard, though sometimes he just wanders around in his room for a while before going to sleep. Tyler is still up though, we're thinking of doing some Wii Sports to kill the time. Should be fun!

Me? Make a mess? Never!

The boys like sharing my lap sometimes when I'm at the computer. I don't get much computer stuff done while holding them both though!

Dawson was suddenly very interested in poking at Tyler. It wasn't very amusing to Tyler though!

When I plugged in my camera to upload pics, I was expecting to have about 10 new ones. Instead there were 56! I said yes to upload anyway and saw many interesting things. Apparently Dawson got at the camera again. I saw lots of floor, some of my computer desk and many unknown colorful blurs. These few were really cute though, so I had to share.

He learned how to back up and take pics! I thought this one was pretty darn good!! He had a few of these.

You gotta wonder what he's thinking sometimes, is he taunting me?