Does it get any cuter than this?

Nope, it doesn't!

P.S. That shirt was David's when he was a little boy!!  Isn't that cool?!?!?!?

Little Miss

Little Miss is two.  I know, I know, she's been two for quite some time now.  What I mean is, Little miss is two.  She knows (most of the time) exactly what she wants, how she wants it, where she wants it, and, occasionally, why she wants it.  She is still nursing, though it is not very often any more, which makes me a bit sad (not because I think I'll miss it, but because I know how much good it does for her and I worry about constipation and the such once she stops).  She is developing such a little personality and it is really awesome to watch.  She tells jokes, then makes sure to tell you "I funny", just in case you missed it.  We are working on asking, not demanding, and she is getting pretty good at saying "please".  She is also great at "thank you" and has an "I love you" that will melt your heart.  So, without further ado, here are some updated pictures, as well as some updates, on little miss:
 

Madi, Cousin Micah, and Conner

Madi being her silly self

Messy play at it's finest

A trip to the Science Center with Hope Kids

Here dad, this peach is healthy, you eat it.  I want the donut.

Such a little helper

Working hard and playing a little too

Madi's HKFO adjustment.  I had the back cut wayyyyy down because it gets in the way.  She is doing great without that portion of her HKFOs, but at our next adjustment, I want Ron to lob off the top sides too.  She needs the support around her lower torso, but not up her back.  Ideally I'd like her to be able to sit in her car seat with her HKFOs on so that we are not always doing the in and out thing, and also to encourage her to stay in them and use them while we are out.  If we cut off the top sides, this should be totally doable.  Right now I cannot get her positioned in a way I feel is safe because the top part sticks out.  Oh, and they look loose because I haven't been using the top Velcro to get her used to not having it, but also so that she can sit in them better.

We love the learning tower!

Making gluten-free, dairy free bagels and "cream cheese"

Bean time.... dad's favorite time ;)

Poor little guy got an abscessed molar that had to come out.  He spent a few hours sleeping on my like this afterwards as the dentist didn't want him laying down flat, and Conner just needed mommy.  He's such a lovey 4 year old!  I have to keep myself strong for Madi (and hopefully Manasa ;)) so this is good practice.

We are rushing to get everything in line for our home study.  We got fingerprinted on Monday and, of course, Conner had to get "fingerprinted" too.  The lady that did our prints was such a good sport and did Conner's prints for him too.  He is very excited for our upcoming adoption (fingers crossed!!) and has promised to be helpful and a good big brother.



Putting out a wanted list :)

After talking with Tami, Madi's physical therapist, we decided Madi would really benefit from a mobile stander.  It would allow her to be upright and at the same height as other children her age, but would still give her great mobility.  Her HKFO's are wonderful for weight-bearing and walking, and the mobile stander would not replace what the HKFO does.  We  would still want her to use her HKFOs as much as she can/wants to, but a mobile stander would be good for her when she's not in her HKFO's (she is currently in them a few hours every day).  Right now she crawls, goes in her HKFO's, and uses her wheelchair throughout the day.  The mobile stander would probably be more something we use at home, then her wheelchair when we go out.  It is like a wheelchair but it helps hold the child upright so that they still get good circulation and their muscles stay nice and stretched.  Being upright does wonders for the bowels and bladder too!  The bad news, though, is that insurance will not cover HKFO's and a mobile stander.  I am going to contact the local Spina Bifida association and see if they have one in Madi's size that we can borrow, but I figured I'd throw it out here too.  If anyone has a mobile stander their child has outgrown in Madi's size (she is two and needs a mini or a small) and they are wanting to sell it, please let me know!  We are officially on the lookout!

Here is what a mobile stander looks like:

Here is a link to a mobile stander that Tami recommends:

http://www.rifton.com/products/mobility/dynamicstanders/index.html

And here is what they say about the standers:

Stronger bonds. Stronger bodies.

Eye to eye, smile to smile – engaging with peers is so much more rewarding for children with special needs when they can interact in an upright and mobile position. And the Dynamic Rifton Stander makes it easy – even for kids with no weight-bearing ability.
The Dynamic Stander gives children who would otherwise be wheelchair-bound greater independence and mobility. Even more important, this mobile wheeled stander helps strengthen critical motor skills so a child can progress toward independent standing.


Freedom to explore


With the Dynamic Stander’s removable large wheels in place, children can self-propel in a standing position – free to explore their surroundings alongside their playmates.


Freedom to participate
Pop off its removable large wheels, and the Dynamic Pediatric Stander easily rolls right up to a table or a counter for participation in crafts and other stationary activities

 
If anyone knows of a place that loans out mobile standers, other than the spina bifida association, please let me know! 

Have I Mentioned How Much We LOVE Ron at Hanger??? Running, Here We Come!

Today I called Hanger, where Ron works, to check up on Madi's HKFO's (yup, I'm THAT mom!). I was told they were not ready yet, and additionally Ron was going out of town and was already booked up Friday, so even if they were ready, the earliest we could get them would be September 10th. I was incredibly disappointed that we were going to have to wait that long to get them. Madi has been trying so hard to make her legs work and stand up. She has been getting very frustrated with herself, and it's heatbreaking to watch. She does not want other little girls her size around her walking and gets mad at them, because of course, she wants so badly to be doing the same. At about 4, though, I got an amazing call. Ron's assistant, Mita, was calling to tell us that not only were they done, but that Ron wants us in at 10:30 THIS Friday to come and get them! WOW! Yes, the appointment they did not have because they were booked, we got! I have to say, God is really looking out for us! He just makes things happen (with a little help from Ron, who is amazing) and I could not be more excited! I told Madi about it and she is very excited too. I will update with pictures as soon as I have them. I need to clear out the video camera too so I can film her with them on. In the meantime, here is a cute short video of Madi dancing today. She really loves music and it is adorable to watch her dance. It was taken with my cell phone, so the quality is terrible, but you get the idea....

What's Up In Our World....

(Madi and grammy at my b-day party... Madi loves her grammy very much!)

Tomorrow Madi goes in for a urodinamics test to see how she's functioning with the new cathing routine.  I'll have to wake her up from her nap to make it, so that will be interesting!  The doctors was great, though, and approved a later time to allow her to sleep a little longer.  I think I'll bring some mini chocolate chips, aka, baby bribery, to help pass the time while she's laying on her back for the test.  Next week on Thursday, we take Madi to get fitted for her first wheelchair!!  How exciting!  Madi will be zooming around in no time!  I think Conner's going to have a little wheelchair envy going on too ;).  Tami, Madi's physical therapist, said that we will get to pick lots of fun options and colors for her chair, which is very cool.  We will also get a bath chair for her.  I always get in the bath with her, but sometimes holding her while washing her and Conner is a bit of a challenge!  This should allow me to be "hands free" when I need to be.  Madi will get a new walker too, which I'm excited about.  She is currently borrowing one from Tami, but will get to have one of her own.  The one we are ordering swivels, too, so it will make it easier for her to get around.  On November 11th, Madi's 2nd birthday, she will get a prescrption for either HKFO's (leg braces that go up through her hips) or RGO's (braces that include a cable to help her "pop" up her leg) so she can be even more mobile.  There are lots of exciting things headed our way, and we couldn't be happier!