Tuesday, January 29, 2013

Great News, No More Cast!!

Sara's appt was perfect!!!  Her hip x-rays looked amazing and we were able to remove her cast today!

Sara says her leg is sore, but that's not unexpected considering she hasn't used it in 6 weeks.  But despite her discomfort, she is a determined little girl and was up crawling tonight.  She is slower than water running up hill, and her balance is pretty bad considering she's on all fours, but its a start....and for only 4 hrs out of the cast, its great!!

Sara will be home from school one more day, tomorrow, so that she can get her bearings when it comes to her mobility.  I want her to have some time to figure out her limitations before being in a classroom with her peers, who can be less than graceful at times like all kids that age.

Sara's birthday wish this year was to get her cast off and get back to school.  Well, thanks to today she's halfway there.  And I think she'll return to school Thur, on her birthday, just in time to celebrate with her peers.  I know she's super excited to get back there!

Here is the picture of her x-rays before and after!  I don't think I need to tell you which is which.

One more chapter completed, and one more challenge surpassed!  On to the next mountain side....

Friday, January 11, 2013

Hurrying to the Hospital...Again!

Today started with an early trip to the hospital set up by Sara's pediatrician.  We saw him late last night about Sara's swollen foot and shin, and he was so concerned he called over to the hospital and they told us to come in first thing today.

Sara has continued to have swelling issues with her right foot and lower leg since we modified the cast last week, but since coming back from her dad's earlier in the week, I just wasn't able to get the swelling under control again.

So off we went to be squeezed in early this morning, and we ended up cutting the cast some more.  It was debated if it was better to cut it above the knee, or take off the entire right leg section.  It was decided that taking off the entire right leg was better because Sara's swelling is actually fluid retention because of her lack of a lymphatic system in that leg and foot.  Damn tumors!  It was believed if we cut just above the knee, in another few days we'd be back again because the fluid is just going to continue taking what room we give it.  

So out came the "evil" saw again, and Sara was less than thrilled! But she was a trooper, not even crying once.  She was super helpful, and was really happy when we were done.  Now Sara can move her right leg around and hopefully that movement will help get that fluid back to moving again.  And since we cut it all the way up to her hip, let's hope that will be the last time until we just take the entire thing off.

Here are some of the pics from our exciting morning!

Sara's huge foot that caused us another unplanned trip to the hospital.
Sara being brave while the cast tech started cutting.
More being brave, and when we were so close to her butt.
Trimming the edges so it won't poke or cut her.
Sara's new look!
Sara was really upset when we had to cut off Grandma's angel. , so the tech was kind enough to cut it out and tape it so she could keep it.
The discard pieces!
I think this is really going to work!  It was nice to be able to wash her leg when we got home too, but oh the dead skin!  Its flaking off EVERYWHERE!!!  Ewwww!!!

And Sara is really excited to have her leg and foot back!  She's already trying to figure out how to move around on her own now, and I doubt it will take very long.  I'm sure that's the next thing I'll be blogging about in regards to this whole part of Sara's NF adventure.

Tuesday, January 8, 2013

Week 3

Today marks the third week since Sara's surgery!

Sara is doing great!  She has no pain, and life in a half body cast is as good as you would expect it to be.  We've been able to get a good routine going for the simple things in life like, washing hair, brushing hair, brushing teeth, sleeping, and all the routine style things we all take for granted each day.

The hardest part for me is that Sara needs my undivided attention, more than I had assumed she would. Its not surprising at all since she can't walk to get anything herself, or even sit up or switch positions on her own.  Its been really hard to get even the simplest of things done, like laundry, even though I'm home all day.  You add that with no break for either of us because Sara couldn't travel for the last 2 weeks we've been home, and it makes for some really stressful (cry my eyes out) moments.  Don't get me wrong, I'm not complaining! I'd do it again if I had to and for however long my baby needed me to.  But its nice to be back to work and at the "beck and call" of someone else.  LOL!

Yesterday we headed over to Sara's school to meet with her care team.  We went over everything Sara will need through out the day, care and supply wise.  We needed to get a plan in place, and then, of course, it had to be written up and signed/approved by all parties.

Sara is very excited to get back to school!  I know she's missed it, and all her friends.  And I know they've all been worried about her because they've called and sent notes over the last couple weeks.

Of course, returning to school means my new found routine is now old hat and I have to start again.  Ah, worse things could happen!  Life is ever changing, and Sara's faster than most.  Its just part of the deal with you have a special needs child.  Things change often, and there is no such thing as status quo.

If Sara is able to get her cast off at her follow-up, and the docs believe its very possible, then we've made it halfway!  And I'm sure we've already survived the hard part...the pain, the swelling, the hospital, the adapting.  Now we just chug along until the 29th arrives and see what happens.  Cross your fingers!  Sara's birthday is just two days after that, and since she got a new hip for Christmas it would seem appropriate that she gets her cast off for her birthday.  Let's hope that's the case!  Probably be the best birthday present she could ask for this year!

Monday, January 7, 2013

The Rules of Staring

Finally this weekend I was able to get Sara out of the house!  We didn't go anywhere exciting by most people's standards, but for us it was awesome!  We went to the store and did some grocery shopping, and then drove through the bank drive-up.

Sara was so excited to be out in the sun.  It was pretty cold out, but she still rolled her window down a little and enjoyed the fresh air and breeze (until she got cold).  I was excited too.  Its hard being stuck at home all day every day, never able to leave.  I don't know how people do it!

Of course, there were rough moments since it was our first outing in the cast, but overall it went well and we had a good time.

And like all of us with children who's special needs show on the outside, there are the looks.  And it was particularly bad this time.  Maybe I'm more sensitive because I know she's different, and I'm still getting used to it to.  I don't know, but man, people LOVE to stare!

My niece was with us because she'd come for a sleepover the night before!  The girls had a great time, and it was a good distraction for Sara.  Since I needed to push the cart, my niece pushed Sara around in her chair, and did an excellent job.  But as we are standing in the checkout line, she says to me that this woman won't stop staring at her.  And in my casual, not at all trying to hide what I'm saying voice, I tell her that some people just have no manners and insist on staring at anyone who was different.  And that the woman was staring at Sara, not her.

Sara is used to being stared at, and handles it quite well for the most part.  But my niece, not so much.  Typically family get together time is done at somebody's home, so it isn't something she's used to.  She replied she didn't like it and didn't think it was very nice.  I know the woman heard all this because she gave me this nasty look like I was calling her something horrible.  I would have had choice words for her had my niece and daughter not been present.

There is subtle differences in the looks people have when they're staring, and when you've been stared at enough you can tell what they're thinking.  Some people stare with true curiosity about what's going on with Sara, others (most of them) just stare with pity assuming her life is awful, but this woman stared with that look of how dare I bring a "defective child" into the world.  And because I did, I'm obviously a horrible person.

What gives her the right to judge my daughter, and the value of her life?!?  She knows nothing about us, who we are, and what we've been through to get here.  And honestly, I feel pity for her.  It must be awful to live with a belief system that leads you to think that some people are better than others.  I'll be the first to admit that I don't agree or like the way some people on this planet choose to live, but that's not for me to judge.  If it makes them happy (and they aren't hurting anyone else to do it), then so be it.  Just don't tell me about it or try to engage me in it.

I know its hard not to stare at something you're not used to.  I still catch myself doing it from time to time.  Its human nature!  But if you're going to stare, than be prepared for what might happen next.  You can't expect to stare at someone and there be no consequences, good or bad.  Like everything else in life, there are consequences for the choices we make, and sometimes they aren't at all what we want.

Friday, January 4, 2013

Unexpected Hospital Visit

Well, yesterday Sara and I ended up at the hospital because of a complication she's been having with her cast.

Since surgery Sara's right foot (the side we didn't fix) has been swelling considerably, to the point Sara complains about pain.  We knew that this foot would have some swelling issues because with all the tumors she has on that side she has basically no lymphatic system.  And since she isn't up right and walking or moving around to get the muscles to do the work, it just swells.

The real problem was that it would begin to swell too much and cause pain after only 10 or 15 mins of sitting up.  So since we've come home from the hospital, Sara's pretty much only been able to lie down 24/7.

Yesterday I called the surgeon's office about something else, and the nurse asked about how the swelling was going.  I talked to her about it a while back a couple days after we'd been home.  I told her it continued to be a huge problem, and she said that it should have resolved itself by now and to bring her in right away.  So off we went to the hospital.

We saw the PA, and he was great!  We talked out the issue quickly, and came up with a solution.  We cut part of the cast out to make more room, and then placed the cut piece back in loosely and keep it all together with an ace bandage.  It works great!  I can loosen it when her foot is swelling if I need to, and now Sara can finally leave the house.  We can go to the store, for a walk, and now Sara can finally travel to her dad's.  She hasn't seen him since being discharged because he lives too far away for her to travel to since she has to sit up in the carseat.

We cut the cast from her foot to mid-shin to relieve the swelling issues.

Tuesday, January 1, 2013

Happy New Year!

Welcome to 2013!  Hopefully it is a year full of love, laughter, joy, and happiness!

Sara and I would like to wish you a very happy new year, and we hope that it only brings you all the best life has to offer!