Happy 4 Months Gabriel!

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.

 Playroom

 Gabriel in the hospital stroller. It's easier rolling him around in the single stroller if Tyler is walking.

 Huge O-Ball!

 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.

Doing the Best I Can

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.

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.