What we need is a King sized bed!

This morning Sadie was an angel. She woke up happy (no sensory freakouts), she ate breakfast in her mouth (as opposed to in her tube), and we were off to therapy with Miss Tami. Sadie is a beautiful car rider these days and we listened to Christmas carols on the radio and I talked to Grandpa on the phone. We even stopped for gas before we got to therapy! No screaming.

I swear Sadie LOVES physical therapy. She always gets so happy when we walk into the trailer. I think that she knows that she's going to get to do things she likes (ie. sitting, standing, etc) even though she has to work hard to do them. Therapy went pretty well, she got in the stander and even though she liked it, her mouth hurt, so she yelled a lot. We tried to make her happy, but finally Tami said to her, "fine, do you just want to get out of the stander?" Sadie immediately got quiet, looked in Tami's direction and smiled really big.

This girl knows what she wants!

When we left, we had to run a couple of errands...which is always a lot of work and a little unpredictable. We went to the Apothecary shop to pick up Sadie's prescription. It didn't take long, Sadie smiled the whole time. It was like she was just happy to be doing stuff with Mama. Then we went to the post office, which took a little longer. Not a peep. Sadie was so good. No yelling, no whining, even getting in and out of the car multiple times went smoothly! She was amazing.

Then we got home and it all went down hill. There was whining and puking, which turned into yelling. Then we had a poop-splosion, which got EVERYWHERE... only to find that we had exactly 2 wipes in the whole house! (Mama had to be a very strategic wiper!) Then there was sort of a nap, which didn't last long. Then more puking and more yelling. Sadie's mouth hurts so bad and she is so uncomfortable that I am shocked that she was as good as long as she was this morning. But it's seriously like I have 2 different children.

Tonight will probably be like every night for the last week...sleeping between Mommy and Daddy. Each night we try to put her to sleep in her bed, and some nights it works. But we get to a point where we have to decide if we want to sleep with her in her really uncomfortable cheapo twin-size bed, or if we want her to sleep with us in our really nice, really comfortable tempurpedic bed. Last night we only had to go in there twice before we finally just brought her to bed with us at 1:00am.

If I knew it was going to be like this, I would have insisted on a King sized bed!!

Better Days

This was my Facebook status just now: "we just completed our 10th car ride in a row with NO SCREAMING! WHAT?! we're also on our 4th day without a meltdown!! Who is this big girl? ...and can we keep her?"

Last Wednesday seems to have been our last bout of car screaming. I don't know what has changed...the baclofen (more on this in a minute)? Her vision? Growing up? Does it really matter?! The fact is that I'm really enjoying quiet car rides.

A week ago we started weaning Sadie off the baclofen. Baclofen is a muscle relaxer that is often given to people with CP. She started it when she was 6 months old because the concern was that she was so tight in her legs all the time that it was stunting her hip development. And it really helped for a while, but she seems to have grown out of her high tone (tightness), and I'm not sure there is much concern anymore about her hip. Sadie's PT noticed recently (after our last go-round of movement therapy) that Sadie didn't have a lot of control over her body and suggested we ask Dr. Wendy about weaning her off the baclofen. The idea is that without the medicine causing her to be relaxed, she might gain control of her body and be abe to use it more effectively. This is exactly what we are seeing happen.

The last 3 nights Sadie has woken up around 5:00 or 6:00, I know this because I can hear her in the monitor. Not crying, just laying there clicking her tongue or "talking." She has even been able to put herself back to sleep in these situations. I am having a hard time sleeping during this time because I am waiting for the crying to start any minute. But it doesn't. I end up going to get her when it's time to wake up and she's usually just laying there all happy and smiley!

Sadie has not had a meltdown for the last 4 days. She has been happy with no crying for 4 days straight!! She has eaten everything I've put in her mouth without crying. She has laid on the floor and played by herself...even on her tummy. She has sat in Brian's office while he works and I sew and not said a peep. Who is this girl?!

But for the Grand Finale...Sadie took a nap in her bed for over an hour today!! I knew she was tired after therapy today, so I decided to experiment and put her in her bed with the pacifier. Suck suck sleep. I was literally there for less than 3 minutes. I didn't know what to do with myself. I didn't want to start anything because I was SURE she was going to wake up any minute...but she didn't. She slept for 70 minutes! What in the world?!

My only thought on all of this is...FINALLY!! I finally have the baby I was supposed to have, one that I don't have to hold all day and argue with to eat her meals. It gives me hope that we have turned a corner and I can't wait for Grammy to come next week and love on this new baby!

Blessings in Bunches

First of all, I'd like to announce that Sadie slept in her own bed in her own room last night for the first time ever all by herself!! 12 hours she spent in there without a peep...we were worried she was dead. Nope, just being a big girl!

It was a little weird at first and I had a hard time falling asleep knowing that she was on the complete other side of the house. But I have a cold and eventually I stopped listening as hard as I could to the baby monitor and just fell asleep.

I was thinking about it and I think the last time Brian and I slept without her in the room was the night we decided to unplug her and let her go. That was over a year ago!! It feels good to wake up after a night of not being concerned about tossing and turning and having a baby glued to the side of me. I'm a whole new me!

Second, Sadie had her first feeding therapy yesterday afternoon. Her goal is to just make Sadie more aware of her lips by stimulating them and causing her to realize they exist. This will hopefully lead to more babbling, sucking food off the spoon better, and eventually biting and chewing bigger pieces of food. So, she gave us this little rubber nubby thing that we're supposed to stick in Sadie's mouth and rub around her gums before she eats, as well as rub along her lips. Then she had this tiny little vibrator that she put on the outside of Sadie's mouth to stimulate awareness. As soon as our therapist left, I fed Sadie and I was amazed at how well she ate! Maybe she was starving. Or maybe all that stimulation made her want to eat. I don't know, but I did it again this morning and I had the same results.

She is also doing really well with little toddler food meltaway bites. The ones we have now are freeze-dried strawberry yogurt bites and Sadie just ate like 10 or 12 of them in one sitting, which is a lot for her! We need to get some more calories in her, so hopefully this new skill will open up the possibilities for us to do that.

Finally, we went to see the pediatrician today for Sadie's 12 month well baby checkup (I'll blog about that separately) and we had a nice quiet car trip both ways!! Plus she was a happy baby while we were there!! I'm really enjoying this big girl!

therapy update

Sadie hasn't really been to PT since the first day of movement therapy, mostly because of scheduling conflicts, so yesterday was our first time in 3 weeks! I had forgotten how much I love Tami. If nothing else, going to PT is therapy for me! Anyway, she really noticed a difference in Sadie.

First of all, we had been in the car for almost an hour because we were coming from Mesa where we saw the chiropractor, but not the acupuncurist, because he was running late and we had to go. So we get to make a separate trip back to see him (sarcastic yay). We pretty much drove the entire 101 loop yesterday. For those of you who don't know what that means, I have a graphic demonstration for you below:

27.3 miles, but there was an accident in the tunnel, so it took longer. Screams the whole way.

38 miles, but we stopped at Jamba Juice and took a sanity break, so it took almost an hour.

20.1 miles of pure car screaming!

Total of 85.5 miles, and pretty much the ENTIRE 101 loop!!!

That's a LOOOOONG car ride...but that's not the point of my post. The point of telling you how far we drove was to show how amazing it was that Sadie calmed down and actually did really well in PT...after she took a short little power nurse-nap. Even Tami was amazed at her ability to keep it all in check. We started out on her tummy, then rolled over. Soon, it was apparent that Sadie gets bored laying on her back, she wants a new view of the world, a sitting up view. So for the rest of the time they worked on sitting. Sadie did some really great things responding to Tami moving her and "disorganizing" her, forcing her brain to reorganize and stabilize. Then when we left I bonked her head getting into the car and it was all downhill from there.

Then this morning we had OT with Jessica, who I also really like. But the nice thing is that Jessica comes to our house, so we don't have to endure any car screaming at all!! In fact, we haven't gone anywhere today...which means our schedule is slowing down again for a bit, and that's nice because I started this new job and it's a little overwhelming right now!

Anyway, Jessica said a lot of the same things Tami had. It helped that Sadie took a 30 minute snooze right before Jessica got here, but still, she made it the ENTIRE hour with no screaming! And we did a lot of work on her tummy this morning, as well as a lot of sitting. Sadie is really getting much better at sitting. I am really proud of her. I think the biggest thing is that she WANTS to sit, so she tries really hard. But, too, it's hard for her to get her body to do what she wants and I can see her get frustrated. It's sad. I can tell, though, that she's determined, and where there's a will, there's a way. I am confident that someday she'll get it and she'll get it all!