Gabriel is officially 4 months old today! His legs have been getting purplish every now and then, but only when he's pushing his foot against something. I think it's just cutting off circulation and he just has a weak circulatory system, like the Dr said. I haven't seen any episodes of purple that I haven't found a cause to lately.
I wanted to get to the hospital earlier today because I knew his counts were going to be low and I wanted to talk to them about transfusions. In my rush to get out the door, I totally forgot that Gabriel was out of diapers at the hospital! The dumb thing is, I remembered when I was in the bathroom and was going to go straight to the bedroom and get them before I forgot. I was intercepted by Dawson wanting things and it just slipped my mind after that. We got there, I layed Gabriel in his crib and saw the empty spot where his diapers sit. Thankfully I had 6 diapers in the diaper bag, but since Gabriel is picky about his diapers, he demands to be changed the moment he pees. So they went quickly, but I was actually surprised that they lasted until 4:30!
We had a pretty good day, my only gripe was that Sibling Play didn't open until 3pm today, which interrupted Dawson's usual routine. Thankfully Tyler was playing in the hallway when we got upstairs, so Dawson excitedly followed him around. He says "Hi Tyler!" and tells everyone "Look, it's Tyler!". On the way back to his room there was a lady who had just set up her harp and was playing calm music in the hallway. The boys are used to Music Therapy, the lady lets them play her guitar. So of course they went right over to it and wanted to play. I asked her if that's ok and she said it was fine. I don't think she realized how rambuncious these little boys are! The pretty harp music turned pretty intense with 2 toddlers strumming away on it.
We played more in the playroom, thankfully there were several toys sitting out today. There usually isn't very many toys out to play with, so they get bored quickly. They were getting bored in Tyler's room before the playroom. Here's some good signs of boredom:
Toilet Paper! This stuff is strong too, it'll go around the corner and almost to the other side of the room before breaking off.
Gabriel in the hospital stroller. It's easier rolling him around in the single stroller if Tyler is walking.
Brought the Exersaucer for Gabriel today. He loves it, for short periods of time. He likes the mirror he's looking at in this pic.
He also is figuring out the spinny thing.
Had to do some 4 month pics today. He might've gotten cuter this past month, if that was possible. ;)
We left the hospital at 5pm since I was out of diapers. Plus it was Bingo Night at RMH! We missed last week's. They have tons of stuff, so everyone always comes away with toys and things. Here's our goodies this week. Tyler is gonna be excited to get new cars! We recently had to throw some because he dipped them in his chocolate pudding and they just weren't coming clean. The banana is a game has some plastic pieces that look like scrabble pieces.
We are currently in the game room. Dawson is going between Pac-Man and the screens on the wall in the right, which have many kid games and stuff on them.
Today went pretty well, other than a traumatizing dressing change. They have a cookout at RMH every Wednesday, so we stayed for that and then headed over. It seems to help Dawson to have some time to himself before heading over to see Tyler. He was doing Speech Therapy when we got there. Seeing me was the end of that. I guess I should've waited to go in! Dawson played in Sibling Play while Tyler played with a volunteer and I got some more paperwork sorted out and ready to mail. I think that's the last of it, for now. Gabriel was pretty fussy this afternoon. He loved the attention of volunteers while Tyler nursed. Tyler didn't seem to want to go in the hallways much at all after I got there. He was being pretty clingy. Most likely because of low counts and the chemo he got this morning.
I was pretty happy to have a camera again! So I got a bunch of pics. :)
Dawson in the playroom
He was working on writing numbers. I didn't help him at all with this.
We got a Cars poster for Tyler's room. He loves having something on the wall
Upside down! Dawson's most recent favorite thing to do
Getting blood pressure taken
Dawson rolling the blood pressure machine around the room
Gabriel is so cute! It's so easy to make him smile too. :)
I was trying to get them both in a pic, but they were too busy. So I told Dawson to give Tyler a hug.
The Code Blue button that they keep going for! There's 3 buttons on that thing, the blue one is at the bottom, with tape over it. They keep ripping up the tape though. It gives us just enough extra time to get to them though. Such a dumb idea putting an important button at their eye level!
Gabriel loves his seat.
Tyler likes petting his head when he's in the seat. If you click on the pic, you can see all the bruises across Tyler's forehead.
Gabriel's weird hairstyle. He shed all his hair except for that bit at the bottom.
Gabriel loves all the attention he gets when he's sitting there
Dawson likes spinning the toys on the seat
After seeing me play with Gabriel, clapping his hands together and making him giggle, Dawson decided to try it.
Tyler playing with his toys, settling down for the evening. Even though he just had a long nap! Poor thing was so tired from all that chemo today. Hopefully it'll wear off soon.
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.
What a great day! We are back home for the weekend. I was greeted by a huge pile of mail. I think I have everything that I need now, just have to fill out some more forms. Lots of steps to get Dawson into the Autism Center, but we're very close! Dawson also got a packet from SuperSibs! It's a program for siblings of cancer patients, ages 4 and up. He got a rubber awareness bracelet, coloring pages and there were some pages with tips for parents on how to handle certain things and how to explain things. It's a great program. They even have an online message board, but I haven't had time to go on there yet.
When Dawson wakes up he yells "HELP!" from his top bunk. I tell him I'm coming and he waits, greeting me with a big smile. Got him changed and then Gabriel was crying, so I went in there to see what he wanted. Dawson came in, saw I was paying attention to someone else and yelled "CHEERIOS, MOMMY, CHEERIOOOOS!" at the top of his lungs. I looked at him and said "nice indoor voice please" and he calmed right down and said "I want cheerios please mommy". Much better! :) He doesn't always calm down that much, so it was great that he listened. I really think being less constipated now has helped his anxiety and is helping him be calmer. He had 2 dirty diapers this morning and even from yesterday to today there was a big difference in his behavior.
We went shopping today. Dawson was excited to hear we were going to Walmart and the O store (Target). As we get closer, he yells "Mal-Mart!". He did great, even pushed the cart for a bit. We didn't get much, so we did self checkout. He loves putting the money in and they always love hearing his contagious giggles as the machine takes the money. We went to Barnes and Noble for a birthday gift for my Grandma and he was great in there too! He looked at the toys and some books, but he put everything back as he looked at it. I found a couple nice books on the clearance shelf. Board books, one with vehicles and one with people/animals. He was looking at them and naming all the things he saw all the way to Target. We got to Target and he was all smiles. He wanted a snack, so I let him have a bag of Cheetos and some chocolate milk. He gave me the cutest smile and said "Thank you Mommy!". I love that he calls me Mommy now. His first word was "mom", very clearly. He called me "mum" or "mom" for a while. I was feeling like I missed out on the cute mommy/mama stage!
He followed when I asked him to, even when he was looking at a toy. I only had to physically get him twice, which is pretty good. He stayed pretty close too. He wanted to go to the toys, so he kept saying "this way" and pointing me to where he wanted to go. So we looked at what he wanted for a while, then it was mommy's turn. He's been playing with his voice today too. He came to me this evening and said "crackers" in a silly growly voice, so I said "ok Dawson" in the same silly voice and he thought that was pretty funny.
I was so relieved that Dawson was doing good, because Gabriel decided he didn't want anything to do with the stroller, so I was carrying him and pushing the stroller. My bjorn carrier is still at the hospital. That boy is a heavy chunk! He started out with chicken legs and now he has some good chunky thighs and that baby belly. He's also teething, so he's been really fussy lately. He was having trouble going to sleep tonight. Between the teeth and rolling over, it just wasn't happening. He prefers sleeping on his belly, but he kept rolling onto his back and then crying because he was uncomfortable. So I'd roll him back over, which I know he can do, but he was too upset to be thinking of fixing his issue. I left the room and a couple minutes later he was crying again, on his back. I finally put him in his swing, where he sucked on his fingers for a bit and fell asleep. He's been sleeping in his swing a lot. I'm trying to get him out of the habit. Some nights he's fine without, other nights it's just not worth the battle. I think sleeping at an incline helps his belly. He spit up in his crib a couple times. He's been making a lot of saliva with this teething and he seems to be spitting up more because of it. Should be interesting to see what his weight is on Monday, I think he's gained another pound in the last couple weeks!
Every mother remembers that first moment when her baby was placed in her arms. We look at that sweet baby and strive to do the best we can, learning as we go. We all have to make decisions, big and small. Some moms have to make decisions they never imagined, and are thrown into a world of medical decisions and therapists. I never imagined I would approve a treatment plan that might cause heart failure or becoming a "vegetable". I thought children getting cancer was a rare thing and it certainly wasn't something I had to worry about. Yet 46 children get diagnosed every day. There are so many worries. Most of the day is consumed by thoughts of food, diapers, meds and germs. How much he's slept today, if that's too much or too little, because either way could be bad news. I watch how he walks, to make sure he's using both legs equally and isn't limping. When in stores I have to make sure his mask is on and that the cart that I scrubbed down before putting him in it isn't parked close enough for him to be touching the germy shelves. When checking out I look at each register person, to see if any have red noses/cheeks like they have a cold before touching my stuff. I miss the days of just going to a store and not thinking about all this stuff, but we're in survival mode now and I'm determined to do everything I can to keep him safe. Today marks 25 months past diagnosis and it's emotional looking back and thinking of all the things we've been through. It's been quite a long, emotional journey so far, but as I talk to other parents and hear of other stories, I feel very fortunate to still have him with us.
I never thought I'd have to deal with Autism either, outside my chosen profession. It's another one of those scary things that nobody really knows why it happens and there's no easy medical test for it either. People hear Autism and they think of "Rain Man". They don't realize that the spectrum is very broad and that high functioning Autism is often hard to recognize for those unfamiliar with it. It's hard to have people stare at your misbehaving child in the store. I try to ignore them. I've had people say I should just get a sitter to go shopping, or to just strap him into a stroller. That would be convenient for me, but that isn't teaching him anything. Every day I'm amazed at how far Dawson has come with things. We've worked hard and it's good looking back and seeing the progress.
We've seen more professionals than I'd imagined. Neurologist, Psychologist, Psychiatrist, Speech therapist, Occupational Therapist, social workers, teachers, evaluators and more to come. I'm always looking for things that will benefit him. Which is why I googled and emailed every Autism orginization in the twin cities, which was quite a few! I was happy to find out that a full time spot just opened up and is being held for him. We will finally be able to complete his diagnosis process and get him some more therapy to help him deal with transitions, difficult times and social situations better.
People often say they have no idea how I do it all. I just do the best I can. I tend to the child with the most immediate need first. I multi-task, making phone calls, answering emails and doing things online while I nurse. I often cuddle Dawson while I'm nursing Gabriel. Or when I put Gabriel down, Dawson will run over with a big smile and say "cuddle mommy?" because he knows it's his turn. I use the hospital volunteers to help out. So Gabriel doesn't have to sit in a swing or crib all day. So Dawson can take a break and go to the playroom for a while. So Tyler has someone in the room so he can continue to be out of his crib while I'm getting something to eat. It took me quite a while to ask for help in the beginning, but things are so much better with the volunteers around. It's crazy, there really isn't too much down time, especially with Tyler on an IV pole, so I have to follow his every move. Dawson always wants to go play somewhere. If we go out in the hallway, it's often hard to keep them together. Dawson wants to play and Tyelr wants to run the halls and play with nurses. Once the day is over, the kids finally settled into their beds, I get "me" time, to update blogs, watch tv or just go right to bed. It's nice to be able to reflect on the day and think about what worked and what didn't. Mentally making a list of things to do or ask about the next day.
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.
I had planned on going back to the hospital last night, but instead I decided to go back in the morning. Looked like some storms were heading our way and I didn't want to be driving through a flash flood or anything. Turned out to be a good thing I didn't go, because Dan charged up my A/C and took it for a short drive and the altenator died! I was feeling pretty fortunate not to be stranded on the freeway in the heat and possibly a storm with the boys. So today he got the part and fixed it. There was a heat advisory out, so he waited until the hottest part of the day passed to do it. Even then he was soaked from the humidity.
While he was working on the car, I got a lot done today! I thinned out the pile of unpacked boxes in the living room. Then sorted through 6 totes of toys in the playroom and put them away. I have a box of stuff going to the free shelf at RMH also. I'll have to wash all the toys before Tyler comes home, but we have a while for that yet. The dishwasher knob is still broken, so I can't do that yet. The hospital uses a dishwasher to wash toys, so I thought I'd do the same with as many as possible.
Gabriel had a tough time today. He was fussy and spitting up more. I always ge nervous when he starts doing things like spitting up more, being more fussy or sleepy. All symptoms of Tyler's diagnosis. Especially since Gabriel is the same age Tyler was when those symptoms were getting worse. We decided it was just from teething though. He was swallowing a lot of saliva. For a while he was very fussy, he didn't want to nurse, be cuddled, swing or nap. I can feel the sharp teeth through his gums, so they are very close. I gave him some Tylenol for the pain and he eventually settled down and took a nice long nap. He was fine the rest of the day thankfully. He woke up a very happy calm baby.
Yesterday we went and saw a B17 bomber plane at the small airport in town. I wasn't sure how interested Dawson would be, but I'm glad we went. He loved it! He walked all around and under it. Then climbed the ladder to go inside. They were letting people go in and walk around. It was very cramped in there, he got around much faster than I did. He sat in the seats and even said "cheese!" so I could take his picture.