Hebrews 10:23- "Let us hold unswervingly to the hope we profess, for he who promised is faithful."

Tuesday, June 30, 2015

Back to Philly....

Mom and I took all 4 kids back to Philly this week. 
Olivia had a 3 month check up and I had asked for a few days of physical therapy as well.  I love taking all the kids with us, it can be lonely (and boring) when it's just Olivia and I.
We both enjoy the company and noise of the other kids.
Anyway, Olivia had her check up and we got some good news....
She is to have the plates (that were put in in February) come out in 2-3 months.  Usually these are in for a year, but her knees are about as straight as they can be, so he said they can come out.....
This is awesome,
of course.
She went from not being able to straightening her legs to having them completely straight! Olivia is doing well, she is walking with her braces perfectly, so well that the physical therapist said she didn't need to see her anymore this week! 
Olivia is doing much better with her determination and will.....
maybe a little too much.....
We have gone from one extreme to another in more ways than one. 
Before her surgery she couldn't straighten her legs completely but could bend them. Now they're straight and she can't bend them.....Let me rephrase, she WON'T bend them. 
Our new motto is "Living in Fear". 
 This has been the past 3 months, fear. 
Originally, I was worried that she would fight having her braces on 23 hours a day and not want to sleep in them.
How wrong I was.....they are her security, she doesn't want them off, she doesn't want you to even talk about touching her feet, and if she thinks her knees might bend, she completely freaks out. 
She never wants to go swimming and she HATES the word "bath", actually she HATES the word "shower" more, "bath" she just starts crying. 
So what do we do?
Well, we can't just leave it like this, she has to bend her knees, and she has to get more comfortable with her body.  Initially I tried some stretches with her, laying her on her tummy and bending her knees, I'm pretty sure it sounded like I was stabbing her. 
I couldn't do that to her, so I then tried letting her sit on the side of the bed or in her car seat with out her braces and letting her legs hang and gravity bend them. 
 She would just sit there and cry, and cry, and cry.....
So yesterday at our appointment the doctor got to experience this, luckily. 
She cried from the second we took her braces off until after she was fitted for new ones, maybe an hour to an hour and a half......
again MISERY. 
 Now let me just say the dr and I, believe that most of this is not pain, but fear and anxiety.  I'm sure it's uncomfortable, like doing a split, when you have never been able to before.  The stretch can be quite uncomfortable, but I don't think it is to the extent that she makes it out to be.

 Once she has her mind set, that.is.it. 
There is no talking her down from the cliff, no reasoning what.so.ever.
Dr vanBosse said we have to do it, we have to get her knees bending more. He tried to talk to her, and explain but I'm not sure she heard anything over the crying.....
He's such an amazing man!
We met with the physical therapist and got some different ideas and stretches to work on at home, so we will start there. And hopefully after her surgery in 2-3 months, we won't have to start all over again..... 
Other than the not bending, she really is doing good.  She walks all the time, and is using her crutches a lot.  They help her to go faster and when she's outside on uneven ground she needs them. She's been able to keep up with "her kids" easier and has talked about how much she wants to play soccer one day. 
We're working hard to have that dream come true.

This is the picture I posted of before and after surgery...
And these are her legs now....

Sunday, March 29, 2015

S/P surgery and casts..,..

Where do I begin........ It has been a long 3 months but probably a longer 6 weeks.  I think we went into this surgery, as an obvious blessing, with excitement and anticipation, not thinking about what recovery would be like for her.  This surgery was the lesser of the two surgeries that can be done, so I truly was naive and blind at what to expect afterwards.  Olivia has always done so well with castings, carries on and doesn't let them slow her down a bit.  This recovery has completely thrown us for a loop and has left us ALL exhausted both mentally and physically. 
    I think she was having muscle spasms, for 5 weeks she was waking up 3-5 times a night crying from pain, being uncomfortable, or just needing help getting comfortable.  She also learned very quickly how to get attention and how to dramatize and manipulate the situation....... She's 5, she also spent the first 3 years of her life crying and no one really listening.  Well I guess, I don't know that for sure, but I have a pretty good idea...... Anyway, it's been hard, let me just say that.  Now don't get me wrong I can't imagine what it's like to have bent legs your entire life that you can easily move and then wake up one day with your legs straight, well straighter than they've ever been before, in casts, with a bar across the middle, leaving you completey immobile.....of course, you would whine and cry......I know I would. But after 6. long. weeks. of whining, crying, and little sleep......I may have done some crying with her.  Needless to say, we have all been more than ready to get these casts off.
     About 4 or 5 days before her appointment I noticed a smell coming from the top of one of her casts, only one.  The other smelt fine.  I was quite worried to find out what was causing the smell.  Well as you can imagine when they were removing the casts it was HORRIBLE! The cast was covered in drainage from a little area behind her knee that had opened.  No one (dr, nurse, resident) seemed too concerned about it because it wasn't draining puss.  I'm now thankful that she had been on antibiotics for strep the past week and a half!  (God always has a plan!). 
Did I mention how we (the family) had 5 weeks of sickness, about 2 weeks of no sickness and then another 2 weeks of Mike and Olivia sick,  Olivia getting strep for the SECOND time in two months........ Maybe another reason we are drained!  Anyway, after a crazy long day at the hospital, like 6 1/2 hours long, Olivia got her new braces that she has to wear all.the.time. 😁 We're not talking the cute short ones.....nope, the ones that come almost to her booty...... Luckily she's sleeping pretty well.  However, now we have new problems to deal with...... 
For a few days after surgery Olivia couldn't move her left foot because the nerves had been stretched too far.  Well the feeling came back but anytime ANYTHING touched her toes she would scream and cry.  Since she was in casts they were pretty well protected and didn't get hit too often, but now that she's out of casts......ugh!  I have to touch her feet to put her braces on, put her socks on, wash her feet, you get the picture.......she screams and cries, big tears!  The dr said it feels like when you hit your funny bone.....but you know it's not funny. 
The other problem I am realizing is that Olivia has lost a lot of her will and this has been the hardest on me this weekend.  She use to walk completely unassisted, just her braces, no walker, no one holding her hand and she LOVED it.  Now she walks with a walker and complains about how tired her arms are because she's basically JUST using her arms and not much of her legs.  I know that things are really sensitive after being in casts for 3 months, believe me I know.  But I just don't see the determination in her that she has always had.......and I pray it comes back.  She's constantly asking me if she can sit down or ride in her stroller.
So this is where I have to ask all of you that see us maybe every once in a while or every day....... 
PLEASE try to avoid helping her.  I know that sounds bad but she is very good at the puppy dog eyes and turning on the crocodile tears when she just doesn't want to do something.  She will even say something hurts, when it really doesn't because she just doesn't want to do what ever it is you want her to do.  For example, she'll say "my knee hurts and it won't let me eat."....... I know it's hard to want to do whatever it is she's asking you to do for her, (she is quite cute when she asks) or picking her up so she doesn't have to walk......but this will hurt her more than help her.  She's lost most of the muscle (which wasn't much to begin with) in her legs and the only way she is going to gain that strength back is by using those legs and getting mobile again.  
I refuse to let her give up!  
Today we had a PT appointment and she now has crutches to use when she walks.  The last time we tried crutches she pretty much carried them, didn't use them for any assistance.  Again, I know that the muscle is most likely gone and it's hard for her to walk, but I also know that if I (we) give in and don't let her do it on her own, she may never get the muscle and strength  back.  It's like working out, if you don't do it, you don't get bigger muscles! 
This little girl has been through so much, my heart breaks for her when she is in pain or when she's just over it, but I want her to be HER best! It's going to be a rough few months getting back to where she was, but I know she can do it.  Thank you for loving and supporting us through this!!

This picture shows before (top) and after (bottom) surgery.....
Walking in physical therapy....

Monday, January 19, 2015

Casts 19 and 20.....

We just finished our first trip to Philly for Olivia's third round of casts.  She has now had 20 casts...... I really wish I had kept up with all the trips and flights we have been on.  

#1 7flights, 9 trips
#2 2 flights, 4 trips
Brace pick up, week of pt, check up, new brace pick up
3 TTN, 1 DE
3 delta
2 SW direct
5 SW not direct

I think it is somewhere around 18 trips to Philly. 4 of those we drove, the other 14 we flew, mostly with a layover in Chicago, which means we have been on about 40 airplanes...... Wow! I've always wanted to count all the trips up.  Anyway,  I have not been dreading these trips like I normally do.  Yes, I'll admit I dread them.  Casts are not fun for Olivia.....or mommy.  And we miss "our kids" (she calls her siblings "her kids") and Daddy back home.  However, these casts are SO important because they are leading us up to her big knee surgery!  She will have metal plates put in on the growth plate to stop the front part of the bone from growing while the back will continue to grow.  This will help straighten her legs and get her walking even better!  Those of you that know her, know how independant and headstrong she is, and how she wants to do everything everyone else is doing, and doesn't care that she can't walk.  She'll find a way to make it happen.  I will do what ever I can to give her the ability to do what she wants to do, and enjoy her joy in it all! Her surgery has been changed, they have pushed it up a week, so it is now scheduled for February 11.   Olivia, Ella, Taylor, and I will go up early and she will have two castings before her surgery, then mike and chase will come up for her surgery. The kids are so excited to be going on an airplane for the first time.  I'm just glad they will be with us!
I am also wanting to express my thankfulness for all these trips.  Even though it's stressful and we get homesick, or stuck in an airport for 8 hours.  We have met and been loved by some amazing people through out all our travels.  Strangers on airplanes, new friends at the hospital, friends at the Ronald McDonald House, the Ronlad McDonald House org, the Miracle Flights Org, of course the most wonderful Doctor and staff, Shriner's amazing organization, and friends that love us enough to travel all the way to Philly to be with a girl on her birthday!  If you ever have money burning a hole in your pocket, RMDH, Miracle Flights, and Shriner's, are great places to spend it! 😉

The awesome counter in our room that makes it easy to give Olivia her sponge bath!
We visited the aquarium again with our friends.  We always have so much fun with these girls and their mom!