Baby and Therapies

Hi everyone. Things are still going here - no baby yet. Can't believe it. Never thought I would go this long, really. But not really surprised that I will get to experience the whole spectrum of different pregnancies. One 5 weeks early and water broke, one I was afraid for the pregnancy to end knowing she was safer in the womb than in the world, and this one - the never-ending, completely normal, uneventful, I'll be pregnant forever one. They do say that every pregnancy is different...

I saw my OB doc yesterday and she wants to induce me on Sunday if I don't go before then. I really didn't want it to come to that, but I want to do what's best for the baby and the thought that we could finally meet the little one in just 5 days makes me happy. Plus, with our nursing situation, planning has HUGE advantages. We are going to pretty much need 24-hour nursing care (for Harlie, I mean) while I'm in the hospital and I only get so much per week. But, now that I'm thinking about it, I do have some respite care that I haven't used yet, so that will be fine. It's just that each nurse can only work so many hours. Brandy would definitely do more than 40 hours in a week, but they won't allow it. And one of my other nurses (Dawn) works during the day elsewhere, and the third (my friend, Jennifer) has 2 kids and their schedules to worry about. So, planning really would be very helpful for us all.

Well, Harlie is doing great with her walking. I can't believe how much it has changed her! She is so much more confident in everything else. She is really starting to behave like a typical toddler! You know, she wants up, then she wants down, etc. Whereas she used to be completely content being held forever. She walks every chance she gets now and when she falls, she doesn't cry (that used to set us back days and weeks!) she just gets right back up and keeps going. It has been so amazing and wonderful to watch.

We had physical therapy yesterday and Traci is working on getting her feet closer together when she walks. Right now her base is still far apart and she walks with her hands up high in a protective way. Traci said that in time her hands will come down and within a few months her hands will be swinging by her sides. Brings a smile to my face. Anyway, Traci had Harlie walk on a board that was about 6 inches wide or so to try to get her legs and feet to stay closer together. She did pretty well with assistance. But on her own she just put one foot on the board and the other off, which is still good for her balance practice. The cool thing is how cooperative she was to do it over and over again. She thought it was pretty funny.

We also talked about her foot braces. She definitely walks better with her braces on, versus off. So, we are going to have her continue to wear them all the time (when she's awake, I mean) through the winter and spring and re-evaluate how she's doing at the beginning of summer. Traci said that it's not just a strength issue, it has something to do with ligaments and we just aren't sure what they are going to do at this point. Hopefully wearing them another 8 months or so will get things good enough that she could sport some sandals in the summer on occasion with no braces. She has grown a lot this summer and she got the braces that she has now back in May so it looks like she'll be needing a new set pretty soon.

We also had speech therapy. That was a little more challenging. Beth tried to get a baseline of how her mouth and face are now as far as stretching and mobility goes. That way she can see exactly what we need to work on. There are some facial/mouth reflexes that we have that can be measured - and, well, Harlie didn't have some of those reflexes. But, that just tells her what we need to work on. And the good thing is that we will be able to really tell what our progress is down the road. And that's always good.

But, Harlie wasn't too happy about all the face work. I need to call Dr. Magee's office today. There is a bone in the right side of her jaw that is really sharp and I have a feeling that it will start to come through her skin soon. We found it a while ago and now her skin is bruised and it definitely feels sharper than it did before. When I talked to his office about it after we found it she asked me if it had come through yet and I said no. She said that he won't do anything unless it comes through. I guess he shaves it smooth. ugh. But we see him October 14th for our follow up so we'll see what he says then.

Anyway, my point is that I think the facial exercises, which makes her skin move around, hurts her because of the sharp bone. So, I guess I will continue to do what she allows me to and not force the ones that she really doesn't like at this point (which are the exercises that stretch the bottom of her face).

Well, I've written enough for right now. And I'm hungry. Again.

Take care,
Christy

Harlie is now a WALKER!!

Well, I can officially say that Harlie is walking. Every day she walks more and more. Another huge milestone achieved. And right before her 2nd birthday! I can't tell you how thrilled we are. And what a difference a little confidence has done for her! She is playing like a typical toddler and it is wonderful to watch! We don't even bring the walker in the house anymore. Although I still use it for distances, as she can only do short ones now. But, I know that will change quickly!

Here is a video (shocker) of her walking at the mall this past weekend. Another thing she's learned is how to give a kiss (something the jaw surgery has helped). I know it is hard to hear (the water fountain is right behind me so the camera picked up the sound), but Tom asked her to give him a kiss. She is just the sweetest thing ever!

Oh, and the other day she wanted her sunglasses, but they were just out of her reach. So, she made up her own sign! I couldn't believe it. She pointed at the sunglasses and then tapped her fingers to her temples. That's not the sign, but it is close enough and it really doesn't matter as long as I know what she's saying anyway. And I clearly understood her. She just amazes me!

Today we had feeding therapy with Beth. Harlie did great! Beth said that she swallowed a couple of times. But most important is how she's letting us do more and more and how she's biting down on her chew "toys" and moving her tongue all around. So, now I can see that what felt like not making progress, is actually, well... making progress. What a difference that makes to my spirit and my new enthusiasm for working with her feeding!

I can't believe how great everything is going. Oh! And she has been wearing her PMV (speaking valve) a lot the last few days. In fact, she wore it practically the whole time during her feeding session today (1 hour). And there is a little plastic hook that wraps around the trach so if she takes off the PMV it hangs there instead of falling on the floor. So, I put that on and for a couple of hours she kept on putting it on herself and clapping. Clearly, we're big clappers in this house - you know, all that positive reinforcement stuff. Anyway, I was trying to get her to make sounds (other than the sound you've heard before) and she actually said "mama!" Now, she wasn't looking at me, or calling me and I don't think she realized that she even said it. But, the fact that she did is all that matters. And I'm not exaggerating or making that up. My Mom and Dad were there and they heard her, too.

Beth said that she will start to learn the same way a baby learns they can make sound. So, it will be a learning process, but one that we are REALLY looking forward to. And I think I can relax a little. I think she's made it perfectly clear that she will accomplish her goals when she's good and ready and somehow it seems to all work out. And that she can do that in one instant. Meaning that one day she wouldn't walk if her life depended on it, and the next day, she took off.

I will have to get Tom to take a new photo of my belly. It is very big and I think I can officially say that I am ready to have this baby! Well, that's it for now.

Take care,

Christy

Harlie Walked!!!

Today was so busy. I just have to share...

Took Murphy to school at 8:30, went to Harlie's pediatrician for her pre-op physical, dropped Harlie and Brandy off at home, went and picked up Murphy from school, took him to his dentist appointment, went to the grocery store, came home, got to be there for the end of physical therapy (which went GREAT), speech therapy was canceled, had lunch, put Harlie down for her nap, Murphy was settled down for quiet time (which ended up being a nap), left to go run errands to... our bank, Benjamin Moore paints to return something, Harlie's bank, back to the pediatrician's office for a form that I have to have for her procedure tomorrow in DC, then to the pharmacy to pick up her prescription, to the library, came home, realized I forgot some items from the grocery store that we needed for dinner, so had to go back to the grocery store for a second time and then came home and got to stay. Whew!

Well, I really need to go but I just wanted to tell you how great physical therapy was today. She walked 17 steps totally by herself. I don't know why she did it for Traci and won't do it for us. Other than she just wants to torture us even more than she usually does. Anyway, here is Brandy and I trying to get her to walk after Traci left. The sign she does is the sign for "change diaper." She really cracks me up.

Here is her walking:

I am still learning my new camera so I missed a bunch of good walking. Ugh. And Tom just told me that I had my setting at compact, so the video is really small. He changed it for me, so hopefully the next ones will be better.

Now I need to go and pack for our trip to DC tomorrow. We have to leave at 5am. I really hope I get a decent maternity leave so I can get some rest. haha At 4pm today they called to tell us the time to be there. Then they told us that she would have to stay for 24 hours. I about had a cow. I did NOT want to stay up there overnight. So, I e-mailed her doc and hoped that he had his e-mail go to his blackberry so he would get it in time. He did and e-mailed me right back that he would release her the same day, so not to worry. Whew! I was very glad to hear that. So, hopefully all will go well and we can hear some of her voice tomorrow!

I'll let you know how it goes...

Take care,

Christy