Saturday, December 15, 2012

Slight set back

Ok so I have so many things on my list and mind that I wan to blog about but tonight is not the time.  For right now I'm just posting a quick snip-it.

You know the last post I wrote about here and went on about loving casting???  Well ever since that darn last cast has come off it has been a struggle.  I feel like Nya has been great with keeping the flexibility meaning she still is able to keep her heel on the ground really well.  And usually by the time our next Botox is scheduled she is really on her tippy toes and you can tell boy oh boy its time to get her in.  (oh by the way, botox is next Tuesday so yep like 3 days and we are actually canceling the appointment.  It's just not right at this time to do more injections...but we will again I'm sure of it)

So the problem this time isn't that she's on her toes so much the problem is how she is using her whole left leg.  It is just weird, odd, messed up, incorrect, and what ever other descriptions you want to throw in there.  I don't think I can even describe it but here's trying... So she turns her left foot out (completely opposite from pigeon toed) and then she slightly turns her leg out too from her hip.  Then it's almost like she tries to walk with her leg straight rather than bending her knee.  She also looks like she is doing some back kneeing where it appears she is nearly hyper-extending her knee.

As if this funky walk isn't enough.  It actually comes and goes.  Seriously what's up with that?  And why does it go so I can make it go more often.  There really doesn't seem to be any rhyme or reason.  If I remind her to walk with her toes forward it helps some.  (So if you are ever around and hear me say that you'll know why.)  Also it seems that if she runs it is better as well if we march.  So again if you see us and we (yes that means Nya and me usually) are marching it is my way of helping her to keep her little leg in line.

Oh and her night-time brace started giving her fits.  Really it just left a little mark on her foot that still (2-3 weeks later) has not gone away even though she hasn't worn her brace since it showed up?

Can I tell you all the information that I learn about this little girl just makes me more and more amazed at life and abilities in general.  It is truly a miracle to have healthy little children.  The body is amazing and can do so much and how it all works together is just mind blowing!

Okay one final note -totally NOT a set back here.  This girl can talk. It is so fun to hear all of the funny little comments that have been coming out of her mouth lately.  Now there are still times that it is hard to understand what she is saying more because she throws so darn many words together so fast.  I often have my Elle translator on hand.  I don't know how but really my little Elle can totally translate pretty much everything Nya says on the first go!  Way to go Elle.

Friday, November 2, 2012


Oh casting how I love thee!  I know a little disturbing that I'm all too happy to willingly put a cast on Nya's leg.  And of course it is her weak leg.  But man I'm telling you what I love it!  It makes such a difference for her so quickly.  We just finished our 3rd round of serial casting in less than a year, so it will be interesting to see how many more times we cast this up coming year.

Here's the process.  We do botox about every three months (another love that I have- I'll work on that story for later -remember HUGE catch up here).  It takes about 7-10 days to really have the botox take affect.  So within about a week of botox we schedule our first serial casting appointment.  We've been doing therapy with Primary Children's and have just in the last 3 months changed to Shriner's so this was our 1st experience with casting at Shriner's.  Their procedure is to leave her in the same cast for 2 weeks.  In the past it was only for a week.  I like not having to travel every week for 5 weeks to have it re-cast.  And the 1st two castings at Shriner's went well.  Even the 3rd (so now a total of 6 weeks in the cast) went well but I just wasn't as pleased with the end result as I had been with Primary Children's.  When we start the casting, her flexibilty (probably there is a technical word for this) is about -3 or -4.  With Primary's we've been able to get her to a flexibility of +8 to +10.  But with Shriner's we were only at a +4.  That just doesn't seem like enough but still the results are always so positive.  I don't see eliminating serial casing any time soon!  When she is in the cast she is just so much more stable and I love that!

The concern with her leg and the tightness is that her bones are going to start growing and her muscles are not going to keep up with them because they are too tight.  The way to fix this is to have a heel cord release.  It doesn't sound bad.  But what that means is that they do surgery on her achilles tendon by cutting little "V"s on the tendon so that it gives some room to stretch.  But if we have to do this, it means we will likely continue to have to do it every time she grows.  I DO NOT want to have to do this surgery.  So if it means that I cast her every 3 months along with botox, then yep I'm all over that!
Last night we got home from taking off her last cast again its been 6 weeks since she really had it off.  Her little skin is all dry and just looks a little red she definitely was a little more irritated.  I don't know that these pics really show very well what it looks like.
Her poor little toes curl in so much.  I don't know that this is something that will ever be fixed.  No Doctor, therapist, etc seem to be concerned about it.  But can you see a difference between the two?  The foot on the left the toes are straight and on the right they are all curved and turned in.

One of the best parts -at least for Nya- for getting the cast off is that she can now wear "zip ups"  oh boy was she excited about those "zip ups" never mind the fact they they really are too small. She was determined that she was going to wear them.
And this was the best smile I  got when I asked her to look at the camera.  I'm not sure why she thinks that when you smile she must now nearly close her eyes.  But whatever I think she's still pretty cute!

I'm sure there is so much more about casting but for now this will have to do!

Thursday, October 25, 2012


Last night as we were making our donuts with the kids I had Nya spell her name for Bryan.  I've heard her spell it before and I didn't know if he had heard her do it or not.  So I asked her how to spell her name and first she just carefully said her name "Nyah - A".  We often call her "Ny Ny" so she usually refers to herself as "Ny Ny".  With her speech problems, she usually leaves the ending off words so we've been trying to work on the endings and that's why she really enunciates her name as "Nyah - A".

Okay tangent back to spelling her name.  After she said her name instead of spelling it I asked her tell daddy the letters in her name.  She always throws out "N" but has to think about the other letters for a minute. In fact she always thinks that words with an "N" in them are her name.   Oops again back on track...So she got to "N-Y" and finally got the "A".  Then she just went on repeating it.  "N-Y-A, N-Y-A".  At that point Bry and I had a quick conversation about what a blessing it was that we named her Nya for no other reason than it is easy for her to spell it.  In fact, I told him, I don't even remember what other names we had for her? (Again sad to not have all of these memories) However her name was pretty set for the last few months of my pregnancy but I just wasn't really telling anyone, so that might be why I don't remember any other names.

Wednesday, October 24, 2012

First snow fall 2012

It snowed and then stopped and then tried again and then stopped and now it is again!  Its really looking kind of white outside!  Winter really isn't my favorite season.  Don't get me wrong I LOVE a white Christmas and I don't know that I would enjoy living somewhere that I don't get all four seasons. But I'm just not sure I was totally ready for the snow today. Didn't matter it came anyway!!  I had been wanting to do something for the kids that we can do every 1st snowfall of the year.  So I randomly decided to do some donuts and hot chocolate.  Of course like everything I do we got a late start.  So I joked with kids that our dinner would be donuts.  Fortunately Dad was home tonight and helped out so kids were fed real food and then the sugar.

 I've been thinking about traditions a lot lately and I don't think that we have many as a family so I want to try and create more.  So hopefully this one sticks.  The kids were pretty excited about the idea too.
They were all crowded around as I was making the dough.  I love that they want to help!  Even when I am getting flour all over the place! - oh well it cleans right?
Nya enjoyed just as much as the big kids. She had been saying she wanted to go to bed (but I think that was her way of trying to get out of dinner- stinker she's getting too smart). As soon as the hot chocolate was brought out she was right there ready for the goods!  And I'm telling you what this girl is spoiled.  The big kids never got away with no dinner and still getting the treats later...oh what are we in for?
Elle was having fun with the faces.  We often play with our food.  They didn't turn out great but she wanted the happy and sad face pictures.  I love how she's using her eyes with the happy and sad faces.
And then my Tanner! He made a "donut straw".  He was so proud of his new creation and needed a pic of it!

Well I don't have one of the baby tonight but she was also enjoying the donuts.  She was eating them up as I was making them all thus why I don't have any of her enjoying them- I was a little covered in dough!

Well heres hoping to creating more traditions! Oh and the best part about tonight was that Bry was actually in on it all.  I totally got kudos for working on a new tradition!

Saturday, October 20, 2012

Let it Begin!

Okay I've been really contemplating whether or not I start up this whole blog thing again.  Well as you can tell you can see what the winning vote was.  I'm posting right?  Okay so I really pretty much knew I was going to start this up again.  It's been a nagging thought for about a month that I needed to really get back on this.  For sooo many reasons but really probably one of the largest is of course my (ok my in this case means "my little family") journey with Nya and where she is right now with everything in her world where she's been and where she's going.  Because I'll be the first to tell you this girl is going!  With all the spit fire she has she's way too determined not to.

In addition to having the feelings that I needed to get going again, I ran across two blogs in a matter of a couple of days and it hit me that yep I have to get going on this now.  I'll share those blogs with you later but really they are totally awesome blogs that really make you think and then come back the next day to see what you get to think about again.

Okay well before I leave I'll leave with a fairly recent pic of all the kids.  And yes this is normal in our life

See none of the kids really looking at the camera.  All needing haircuts.  The baby is getting hugged a little too tightly.  Oh keep track of that Nya girl's hair...
 Oh look if we kind of smile mom will you please be done with the camera?
I've given up hope they are totally more interested in the parade (we were at the homecoming parade this day).  Oh but do you see Nya's cute pink brace?  Yep try getting shoes to fit over that and get one to fit the right foot.  Yep you just give in and buy two separate shoes...its a story all on its own for later!
Ok for a quick note on the hair- You will see more crazy hair outfits etc. Nya has only recently let me put any kind of pretty in her hair normally it's just down and in her face unless you get a special day like this where she decides that she is going to do her hair by herself but hey the necklace matches.  But really consider yourselves (if there are any readers out there) to be warned about hair and clothing.  One thing I'm pretty lax about is the hair and clothes unless we are doing a photo shoot or going somewhere that it matters more.  So yep my kids are often very "stylish" in their own way.  Maybe it will be cool someday? But in the mean time I'm all about keeping this real on what my world is really like!

So there are no promises on where I'm trying to go with this new little project- that's what I'm calling it for now. So I don't know how regular I'll be posting but it will be more than every few years.  Also I'm sure I will totally be jumping around as I have missed the last several years of our lives.  See doesn't it sound so sad when it's put that way.  I hope I have great memories stored somewhere and the pictures to prove it!