Life just never slows down, does it? And the more I try to make it go slower the faster it gets!!!
Rachel continues to make progress at therapy. Things aren't as dramatic as they were in the beginning, but we are still working hard. We had to have her SMOs re-casted, as often happens with these devices, they were too wide for her skinny little foot :( and we just got the new ones yesterday. They are perfect and she should be able to switch to them full time very soon! I am very excited for her. I don't think she really cares. But that is ok.
And our little Rhett monster is full of himself lately! He lives in superhero world full time now!! The things his little imagination come up with astound me!! Sitting at lunch one day he decoded he was Iron Man. Everytime he wanted to say something or take a bit of food he would "push a button" on his helmet to open it, "whoosh", the. Would close it when he was done. This kid cracks me up!!!! He also keeps his other super friends on speed dial. I have got to get some video of this!!!
Little reward treat after school!!
Giving all the super friends a check up, you know, because battling evil villains can take a toll!!
We are huge Pete the Cat fans here! Rocking in our school shoes, rocking in our white shoes, and rocking our groovy buttons, you name it, we are gonna rock it! Why? Cause it's ALL GOOD!
Rachel has been totally rockin' some new braces lately!!! And I am so excited for her!!!
She has been wearing AFO's since she was about 2 1/2 yrs old. AFOs are a type of brace that fits over her feet and goes up her leg almost all the way to her knee.
They are made out of hard plastic and we always have to get her shoes that are 2 sizes too big for her feet so that the brace can fit in the shoe, and tennis shoes are really the only shoes they fit in properly. They really do help her maintain balance to stand and walk, but they can't be comfortable! :( I have never liked the fact that she needed to wear these. It breaks my heart. At this point in time, she really doesn't seem to care what kind of shoes she is wearing, but there may come a day when she does. And up until the SDR surgery, Rachel was looking at a lifetime of wearing AFOs.
But we are on a totally different path now! We have taken the first steps to shed these braces!
INTRODUCING... (drum roll please........)
THE SMO!
Still made of hard plastic, but way smaller and they are the stepping stone to slide-in arch supports.
I really thought there would be a long adjustment period for these. They don't give a lot of support and her poor little calf muscles have atrophied as a result of wearing the AFOs for so long. BUT once again I am stunned at how easy the transition was!! I envisioned her wobbling and falling over and over. HA! WRONG! She took off almost as if nothing had changed!
"I'm Standin' in My SMOs!"
"I'm Walkin' in My SMOs!"
"I'm Ziplinin' in my SMOs!"
Rachel's Rockin' in Her SMOs , Rockin' in Her SMOs, Rockin' in Her SMOs!! Does she worry? Goodness NO! Cause its's ALL GOOD!
Wow! I am really bad at updating my blog!! I have all these good ideas, pictures, and stories to share with you, but finding the time is so hard! For instance, just started uploading the videos to YouTube and writing this entry and as soon as my fingers touch the keyboard... "Mom!!! Can we read now?" "I am cold, where is my blanket?" " I need more 'nilk'!" *sigh* Love my job, but man, a girl could use a break! Lol! Ok, so hold on, I be back in a few!!!
.....
Yeah, started this 2 days ago! Oh well...
So today is Rachel's 7th birthday!! And I have a feeling this is going to be her year! This girl has been through so much and ther is still a very long up hill climb to go. But I know it will be much easier now.
Remember how I said this process is watching therapy on fast forward? The past few weeks (6 now, to be exact) have been like having a very young child at the beginning of a very long journey and being able to use a remote control and skip all of the hard up's and down's and get straight to the results. Rachel will start a new skill one day, struggle with it for a day or two, then, BAM! Be able to do the task no problem! Don't just take my word for it, watch for yourself!!!
December 16th:
December 19th:
December 23rd: no assistance
(and yes, they are wearing pj's at therapy, Polar Express Day! Rachel was just glad she didn't have to get dressed!! HA!)
As of Thursday January 2 she is standing independently for "88" seconds, Exactly! lol!
Walking is getting easier too! The biggest obstacle is muscle strength right now. Building it up does take time ;) But Rachel is making huge strides in this area too.
She is using her walker SO much better, and is able to steer around the corners of the track in the gym. Yes, she did this before, but she never seemed to have full control, where as now she takes the turns like a pro ;) and she is fast! Watch out students of Sara Collins Elementary!!!
As of January 1st, we are up to 10 minutes non-stop on the treadmill! She was able to do this before, but it required a lot of me to keep her upright and supported. I have very little to do now other than to cheer her on and find good songs on the iPod!
I have saved the BEST for last!!! As you know our ultimate goal for Rachel is to walk independently. Pre-op we were able to just hold her left hand and guide her. It was a slow process but she could make short distances using this method. After a few days of practice we are back to using this method!!! And it is a WHOLE NEW WORLD!!! I don't have to do much work to guide her and I have very little to do with keeping her upright! I can not tell you how excited this makes me!!! We walked out of Jazzercise the other day, I held her left hand and she was able to hold Rhett's hand with her right to keep him from bolting. She seemed very proud of herself that she could be a big sister and "take care" of Rhett! So Sweet!
Here she is December 30th:
Sorry for the bad camera angle, gotta capture this stuff as it happens and there is usually little time to prepare fully.
And again:
She was doing so well with one hand walking her therapist decided to try some independent steps...
Melanie is just holding on to her shirt! I need to look back and see if I can find some pre-op walking for comparison, but this is very different! She use to "launch" herself. I can already see more control! Poor Melanie couldn't move back fast enough!
I am so grateful for Dr. Park, St Louis Children's Hospital, our Therapists at home and the support from our family and friends!!! I have a good feeling about this year!!! Good things are coming this little girls way! And as we celebrate her 7th Birthday TODAY, I am filled with such a flood of emotion! So happy, excited, and full of hope for this Super Star-tastic Little Girl!!! Rachel, I hope that one day you look back on this and you are as amazed at yourself and full of pride as we all are for you! You are a ROCKSTAR!
Just wanted to post a few videos to share the progress Rachel is making. She is doing fantastic!! She walks in her walker at school again. And at therapy they are focusing on independent standing, pulling up, side stepping, stairs and of course walking.
I took these videos on Tuesday and Thursday of this week. She went from holding on while standing to arms up in the air for 20 seconds! I am amazed! Check them out!
There really is no other way to describe the events of last night. Time of her life!!
It was magic from the very beginning of the concert. (My accounts are mostly second hand because Rhett, my mom and I had different seats). She was in awe from the minute the Fresh Beats took the stage!
We could see her bouncing and dancing to the songs. She knows every word by heart. Twist (the guy in yellow and blue) stopped his speaking part to tell her hello when she yelled "Hi Twist". Her seats were front row right next to the stairs in the middle of the stage. During some parts of the performance the band comes into the crowd. Shout ( the boy in orange) came straight to her and gave her a hug!
Rhett was in shock I think. He sat with his jaw open and bug eyed for the first 15 minutes or so.
He warmed up though. And let me tell you, this boy has his mom's dancing genes ;) (again girls, you are welcome!)
Well.... Ok, maybe we need to hone these skills a bit, but at least he is willing to bust a move!
The played it loud like a rock star....
And we all reached for the sky!
Then for Rachel and Bruce the fun really began. We had gotten her VIP passes to go back stage and meet the band. Now by meet the usually mean you stand in line, sit in a chair in the middle of the band, smile and have your picture taken. Well, in true Rachel fashion, this was taken a few levels beyond a meet and greet! This girl now has 4 new best friend!
They requested that she be first in line!!!
And she got to spend some SERIOUS quality time with the band!!!
Best friends, I tell you!!
She even got a kiss on the cheek from Shout and a big hug!!
These actors did not have to do so much to make her day. Just a hand shake and a picture would have put her over the top. They completely when above and beyond to give this special little girl of ours the time of her young life!! I know the time they spent with her means the world to Rachel! She will always remember how wonderful they were to her!!!
Thank you Fresh Beat Band for making this an unforgettable experience for Rachel!!
And a big thank you to grandma for helping make this experience possible!!!
PS, Rhett, I am so sorry I didn't buy you the VIP tickets too!! Worst mother of the day award goes to me for that stellar decision!! I will make it up to you buddy!! Xoxoxoxox
A little progress here a little progress there. I will take it! Any progress is good progress. Rachel is doing very well recovering and getting back to pre-op activities. We have been very busy traveling to and from therapy and keeping up with all the at home therapy. We have gone from barely taking a step or two with the walker to walking several laps around the house in a very short period of time. I told our therapist it is like watching years worth of progress happen in just weeks. I though I would post several progressive clips of Rachel Walking. Here goes....
I am sorry for the awkward angle, I was afraid to get too far in front of her at this early stage. When ever she stopped walking she would collapse.
And this last one was taken on Friday at therapy. I hope you can see how much she has changed in just a week!!! Blows my mind!
And check out the bench Bruce made for us to do all our sit to stands and other fun workout therapy moves!!!
The best news as far as Rachel is concerned is she gets to start back to school tomorrow!!! She is so ready to see her friends and her teachers! We will start with half days and see how she does. And the cherry in her cupcake is getting to go to the Fresh Beat Band concert on Wednesday! She is more excited about this than anything ever!! Should be interesting!!!
I love holidays! And it was always my hope that my kids would love them just as much as I do. I want to craft, bake, see lots of lights, sing, dance, and come up with family traditions that will carry through to the next generation, maybe even further. I am talking full on Southern Living, Family Fun, magazine worthy holidays!!! My sister and I did a good bit of this as kids. We got to make ginger bread houses, we always had a big complicated puzzle to work on over the break, games to play, lights to see. My mom did a good job starting traditions with us.
The first few years after Rachel was born it was hard for me to get into the spirit, even though I really wanted to and I wanted to start big traditions early!! It was just difficult. And Rachel has just never been one to get really excited about Santa, presents, the Christmas season, or any holiday season really. Who knows why really, most likely do to overstimulation.
Then along came my little Rhett-ster!!!
I think this pic from our card last year says it ALL!!!! Oh, yeah! I finally have a partner in holiday crime! Watch out world, this is one holiday lovin' boy!
(To Rhett's future spouse: you're welcome! ;) )
His excitement was evident last year starting with Halloween. But this year it's on a whole other level! Every pumpkin, no matter how small, got recognition, every witch, ghost, monster and goblin was pointed out and deemed "spooooooooooky". Then it was on to thanksgiving, not as big of a fan, but was still excited. I'll work on that.
Now it is time for Christmas and this child of mine can hardly contain his excitement!!! Every bow on a lamp post, snowman, wreath, house with lights, and anything the least bit festive gets a nod from Rhett. He has to make sure you know he has seen it and that you see it too. He kinda reminds me of Buddy from the movie "Elf"
This is so Rhett!
We got out the boxes of decorations and I physically could not keep him from opening them and starting to decorate!!! He knows exactly where everything should go...
It all needs to be at Rhett level! So he can interact with it on a hourly basis.
Wreaths go on the inside of the door on the handle, right? Sure! Why not!
Everyone should have snowman buddy to carry around and help you make decorating decisions. It's essential!
A snowflake pillow for your chair...
Got to have a reindeer, too!
Now! To sit back on a snowman pillow and admire the handy work!
This year will be awesome! Can't wait to see how decorating the tree turns out!!
