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!!
A day late :/. I worked on this post, but yet again didn't get to finish it.
I am thankful for so many things I my life! The obvious: family, friends, food, clothing, shelter, my health and my new job/hobby.
And it is obvious I am extra thankful this year for all the wonderful changes happening with Rachel! Especially for the prayers being said on our behalf for her continued progress and well being. I have been overwhelmed with the out pouring of support we have gotten lately! I know there is something extra about her that warms your heart. But you all will never know how much your support means to our family!!
On a lighter note, I am thankful that I live in the south! St Louis was missing several of my southern staples! For starters they don't have sweet tea!! *gasp!* What?? It is true! I went an entire week without this wonderful beverage!! The horror! This is their idea of sweet tea!
We southerners know you can't properly sweeten already made tea with sugar and expect it to taste right. It just loses something. And I am sure not going to make fake tea ( my term for tea made with artificial sweetener, bleck!). So I am thankful to live in a state that when I order tea, it is already sweetened!!
Also, I am thankful I live close to a Starbucks! I haven't always been a coffee drinker, infact I never drank it until college, and even then it was sporadic. But slowly I have weaned myself off soft drinks only to realize I have replaced it with coffee. Still not a huge coffee drinker, I have one maybe two cups a week. But in emotionally draining situations and times when I need the caffeine to keep me going the only thing that will do is Starbucks. Yes, I am an emotional latte drinker, I guess it could be worse. There was 1 Starbucks in the hospital complex, hidden in a bookstore, and I didn't see ANY in our exploration of St Louis. The one SB the hospital had was not easy to find! I even got lost on my journey through the super labyrinth of "links" that connected each building, see exhibit 1
But that pumpkin spice latte was worth the mile I had to walk to get it!
Mostly this week I am very thankful to be home with all of my family!
And for silly moments like this Rhett monster foot photobomb!
I started this post before we left St. Louis and it got lost some how. Then I started it again and things kept getting in the way! Love life!!
Ok, so here is a recap of our last day in SL. She had one therapy session that consisted of a lot of standing, some walking and some strength exercises. All of which Rachel was ready to do. Here is a short video of her trying out her walker for the first time post-op. I am still amazed!
I will have to get more video soon because she has made more progress since this!
Our plane ride home was good. We had the best pilot for our trip from Atlanta to Greenville! He saw us waiting with Rachel and arranged for us to board well before anyone else, helped us with our carry-ons, walked us to our seat and took care of stowing Rachel's stroller! Then got her candy!! After the flight he was waiting with her stroller to help us up from the plane!! You couldn't have asked for more! Thank you, thank you, thank you, Captain Russ!!!!
We got home around 10:30 Sunday night. Bruce went first thing and picked up the Rhett monster and the kids and I headed to our first therapy session! Our therapist were over the moon with the amount of progress Rachel had already made and how well the Dorsal Rhizotomy elevated the spasticity in Rachel's legs and hips!!! It is like having a brand new kiddo! And the rate she is going at picking up new skills is mind boggling! I told her therapist it was like we started at square one but on a warp speed path! Things that took months to master before are taking days. And she is in love with her new ORANGE walker and the stander we have borrowed to rebuild her booty muscles.
Here she is in the stander...
I
I wanted to give out a BIG THANK YOU to Rachel's teachers and classmates!! They sent her get well letters! She has read each and everyone of them! And she always has the nicest things to say about each friend!
She can't wait to get back to school, she misses it so much! I think that will be the hardest part of this journey for her.
And I can't forget to mention sweet Rhett!!! He was well taken care of by my in-laws and my sister and her husband! I couldn't wai to get my arms around him and give his squishy cheeks lots of kisses! He has been so good to Rachel. He will bring her drinks, make sure she has the toys she wants and is comfortable, he also peppers her with kisses and hugs!! Hard to remember sometimes he is just 3!!
I will try not to let so much time lag before the next post!! Sorry about the delay!
Your prayers are greatly appreciated!!!
As I a typing this, Rachel is sitting in the bed behaving as if she ate an entire bowl of candy!! A one word description would be: wired!! Is this a child who just had major surgery earlier in the week? She has been cutting up with the nurses and techs and pretty much anyone that will stop and talk to her!
I, for one, am totally in awe of how well she is doing. This is so not how I saw things playing out in my head. I sure am grateful for this alternate story line! I was prepared for days and days of a cranky girl who would in a great amount of pain and not ready to do things, especially when it came to trying anything independently. We did have a little bit of a rough start at our first therapy session this morning. She got a little nauseous and woozy. But thanks to the efforts of Bruce and the PT they did a great job of distracting her and getting her to regroup!!! It was smooth sailing from then on out! She went through all her stretches and some muscle strengthening exercises. Then we worked on sitting, crawling and tried a little more walking. The first attempt at walking was awkward, but she tried her best! And her knees!! All I can say is wow!! It was like she was marching!
(I will try to get video tomorrow, I had no space left on my phone :/)
Second session went really well right off the bat! We started with riding the bike. She did really well pushing off, how ever she did get several speeding tickets and pulled over for driving like a mad woman! Next was more sitting to relearn balance, then did some standing. Lastly we tried walking again. It was slow to start but she did about a 1/4 of their track and didn't drag either foot at all!! I can't wait to see how she does tomorrow with her walker!!
One thing I find amazing is her drive to go go go now! She starts to initiate rolling over and sitting up and doesn't wait on help! We were told that for several weeks we had to move her certain ways to help her sit up and roll over, but she has beaten us to the punch and already trying to do those things by herself.
I am sorry there are no pictures today! I will work on making room on my phone for pics for tomorrow!!
This girl! What can I say? She never ceases to amaze me!!! Everything I have read about the time after and SDR talks about how tired patients are, how they feel bad and start to hurt. If these things are true for Rachel you would never know it!!
She was ready to bolt out of the bed as soon as the PT came in the room. But was surprisingly patient as we moved her slowly to sitting then to her stroller chair. Then she didn't want to get out! So we rolled and rolled and rolled. Only stopping because a tiny bout of nausea caught up with her. After a very short rest she was ready to go again.
(Oh, and we looked like the worst parents in the world when she found out she would be riding in her stroller and not an actual wheelchair! If looks could kill we would have been in serious trouble!)
Her first session of real therapy went really well. She is so much more flexible that she was a pre-op!! It is amazing! I hope she can tell how different she feels. She hasn't said much about it.
Here are her first steps post-op!
It's not much but it is a good start! And the big thing I noticed were her knees. Pre-op she wouldn't bend them very much causing her to drag her feet on the floor, but they are bending so much more and no feet dragging! Whoop whoop!
An extra little perk of the surgery is the effects it is having on her left hand and arm! They did no work on the nerves that feed to the arms, but a great side-effect of this surgery is the possibility of improving the range of motion of upper limbs effected by spasticity. I started noticing that her left hand was staying open every time I saw it. I have been testing it out to see what all is going on with her hand. It use to be difficult to open it, no prob now! There was a lot of resistance when you would attempt to rotate it, very little resistance now. And her range of motion as she raises her hand over head has improved!! Amazing!!!
Check it out!
Reaching for the stars!!
The afternoon went by quickly. She finally got a much needed bath ;). Then I got beaten badly by a 6yr old at scrabble!! Sad, right?
Tomorrow should be a busy day as well! We promised her a trip to the roof top garden and to the play room to use the musical instrument! Fun!!
More to come!! Thanks again for all the prayers!!!!! They are working!
This laying flat on our back is for the birds!! It is not going over well at all. Poor girl! I know it was hard for me during my bed rest and I fully understood what was going on. But for a 6yr old that doesn't full understand this is possibly the worst form of torture ever invented! She is very limited in the things she can do and I know she has to be uncomfortable. But it has gotten better as the day has gone by. And as I am typing this we are T-minus 13hrs until she can get out of bed for the first time!!
We have been able to keep her some what occupied thanks to our good buddy Steve Jobs and who ever invented the TV.
We also got a very sweet treat today! Check out these yummy cookies!!! Lord help us all try not to eat every single one! I have to come up with a creative way to share. Simply telling people to take one isn't working. And they are calling my name LOUDLY!!!
I really wish I could say that they just look pretty and really have no flavor, but unfortunately that is not the case :(.
The BIG silver lining and saving grace of the day is the promise of what tomorrow brings!! For the adults it is to see what other fantastic results of this surgery we are going to be able to see. But for Rachel tomorrow is going to be the best day ever! Wanna know why? Can you guess? If you know Rachel you can probably guess correctly. Check it out in her own words...
Girl is ready to get out of this bed!!!!!
Well, it is getting late, so I am going to snuggle with this little girl the best I can in this tiny bed!! I will let you all know how tomorrow goes!!
*Rachel doesn't seem to be in any pain! Whooo hoooo!
*No vomiting or apparent nausea!! This one is HUGE!!
*She has an appetite and has been eating, very slowly. I am only giving her tiny bites over time. I really don't want to see this food again!
*When I went to adjust her blankets this morning I noticed how far apart her legs were!! They are usually glued together!
I don't know if you can really tell from this pic but her legs are on either side of the wedge!!
This is Rachel's view at the moment. I am thinking I need one of these at home!!
Really the only struggle we are dealing with is keeping her occupied and still!! She has until Friday morning to lay down. I know how hard this is for an adult, but I can't imagine how awful this is for a 6yr old!!
Surgery went well Dr Park was pleased. We didn't get a whole lot of detail.
She came out of anesthesia in rare form! Feisty feisty feisty! Kept trying to sit up. They had to give something to calm her down. Then she was hungry, and enjoyed an orange popsicle.
She is now eating some chips and drinking sprite. The hope is now to keep her from getting sick to her stomach. So far so good!!
For right now we have the room to ourselves. Crossing my fingers it stays that way! Who knows though.
She has wiggled her toes and moved her legs, so we know she is all good :)
We spent the morning going from pre-op appointment to Pre-op appointment. Not too bad. They were quick to move us from place to place without a lot of down time. Way more efficient than some other places we have been that shall remain nameless 😉.
During the appointment with Dr Park we heard the words we have been dying to hear for almost 7 years...
After this surgery Rachel "Will achieve independent walking with in a year." !!!!!! It was all I could do to keep my composure and not totally break down I to a puddle of tears on the floor! Other activities like bike riding and swimming are going to be in her future as well!
Yes, without a doubt this is the scariest thing we have EVER considered, but it will be the most worth while procedure. Dr Park is amazing and has performed this surgery over 2,600 times. He was very optimistic about the results for Rachel. I know he had to wonder if we were excited at all, I am pretty sure both of us were stone face trying not to cry. He also told us she will have better range of motion in her left arm, the likelihood of future orthopedic surgeries will be slim to none, and this will prevent premature aging of her body that many individuals with CP experience.
We are very excited to see how she progresses post-op. I know we have a long road in front of us but it will be well worth the journey!!
Surgery is scheduled for 7:30 am, she is up first. It will last 2 1/2- 3 hours but she will be in the OR for 4 hrs.
Thank you all for the prayers already said and the ones that will come later!!!! They mean so much to us!!
Well, on a lighter note, we spent the afternoon seeing a few of the sights around St Louis. We went to the zoo, saw the Gateway Arch and the Mississippi River.
First we grabbed some lunch at a favorite local Pizza place called Pi. Very interesting! We ordered what we thought was a normal pizza, here is what we got...
At first look it was hard to tell if we got what we ordered, beef and pepperoni. But sure enough it was. We dubbed it the inside out pizza, the cheese was on the crust, then the toppings, then the sauce ( which was über chunky, and those of you who know me know I don't do chunky! ). After a little modification we enjoyed our inside out pizza. Not sure if this is unique to this place or if this is how all pizzas are in St. Louis.
Then it was off to the zoo.
Huge zoo, very very nice and FREE!!!! It was a little on the windy side and cool, but we had a good time! Rachel got to visit their indoor Butterfly Atrium, she loves butterflies! And we rode the train around the park.
Caught a glimpse of some huge Hippos
Then made the trek across town to check out the Arch. It is impressive for sure. None of us were brave enough to ride the elevator to the top. So we just took lots of pictures.
Passed by the Cardinals Stadium...
Saw where they make beer...
Ending the day introducing Rachel to a classic... Goonies!!! She wasn't too impressed 😕. Sometimes I wonder how she is my child 😜
