Happy Thanksgiving

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!

 

Thankful for sloppy puppy dog kisses!

Thankful for all of this and much much more!!!

Love, Jennifer

The Adventure Home

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!!!

~Jennifer

More Therapy Adventures

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!!

Good night all!

~Jennifer 

PS: Go Tigers!!!  

Adventures of a Rock Star

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!

~Jennifer 

Hospital Bed Day 2....

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!! 

~Jennifer 

Adventures From the Hospital Bed

Well,  we survived day 1!  

Silver linings... 

*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!!

Now, on to surviving day 2!!!

~Jennifer 

Adventure to St Louis Part 3...

Just a quick update:

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 :) 

I will update more later!

~Jennifer

Adventure to St Louis Part 2...

Day 2 

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 😜

Ready to get in the bed now!  

Thank you all again for the many prayers!!!

~Jennifer

Adventure to St Louis Part 1...

We have made it to St Louis safe and sound!!  Started out from Greenville at 10:25 this morning.  Everything to Atlanta was smooth sailing!

We had some good music to listen to on the flight.  Even though we didn't listen to a whole song before she would change it 😕

Some new books and tiny friends too also helped to pass the time!  Lots and lots of waiting!

Finally! After siting almost an hour on the plane for something mechanical to be changed we departed from Atlanta for St. Louis!

Beautiful view from our seats!!

Our decent into St Louis was bumpy to say the least.  It was super windy and the plane tossed like a roller coaster.  The only person on the whole plane that didn't seem to be effected by all the turbulence was Rachel.  The girl didn't flinch once!!

Here are some pics of the Mighty Mississippi River.  If you look closely you can see the Arch.  You can see the shadow in the river better than the Arch itself.  Sorry,  didn't realize there were finger print smudges on my phone camera!!  Oops!

It was really cool to see the river and the Arch.  Hopefully we can go get a closer look tomorrow.  

Everything so far has been good,  well,  with the exception of the delay.  But it could have been worse, so I am thankful it wasn't that bad.  

And I wanted to thank all our friends and family for your support!!  Your prayers and thoughtful words really mean a lot to us!!!  Also,  I want to think the person in the Atlanta airport who bought our lunch!  We have no idea who you are, but that was an amazing gift!!!  Thank you, thank you, thank you! 

And...  Back on the farm...

Rhett is had a great day with his aunt Mimi, uncle Dave and Granddaddy.  They wore him out!  Feeding the ducks at Furman, Falls park, and eating okra at Mutts!  

Nice job, guys!!!!!

Pre-op is in the morning.  I will try to update again tomorrow night 😉

With love and thanks,

~Jennifer

A Bit About The Little r

I thought since I shared so much about Rachel, Big R's story,  I needed to keep things even and introduce Little r, The Rhett Monster.  He came into the world a bit too early too,  but nowhere near as early as Rachel.  He was 3lbs 2oz at birth and did 4 weeks in the NICU.  But you would never know it today!  He is all boy!!  Running, jumping, and getting dirty while making plenty of noise are his specialities.   Oh,  and I cannot forget to mention his obsession with superheroes! Who knows how he learned all of their names,  but he knows them all!!!  He loves to pretend he is a superhero saving the day.

This year he has started preschool and loves every second of it!  I love to see the excitement in his face when he bolts for his classroom as soon as we arrive.  I hope he always has that zest for school.

He is a very sweet boy!  Rhett's compassion for Rachel is amazing!  He loves her and takes care of her.  He will usually share what ever he has with her,  I think that is very unusual for a 3 yr old.  

The kid also has a passion for running!  I hope we can do some fun runs with him soon!!  

We truly are blessed to have this boy as part of our family!

The Adventures Begin

I should have started this blog a long time ago.  It has been on my to-do list forever.  Now we are getting ready to embark on one of the biggest adventures of our lives and I figured this would be a great time to start and so I can keep everyone that is truly interested updated.

I guess I should start with a little back story.  As those of you who know us know Rachel was a micro-preemie.  At the time of her birth she weighed only 1lb 11.5 oz.  Some time shortly after her birth she suffered a severe brain bleed.  The doctors at the time were not real optimistic about her prognosis.  We heard things like severe mental retardation and severe cerebral palsy, never sit up, never talk,  never eat on her own.  Well... We all know none of that is true about our little fighter!  She is very smart, never stops talking, is in a regular 1st grade class and walks with a walker.  Oh,  and VERY strong willed!!!!  Yes,  She does have mild cerebral palsy,  but it is no where near the severity the doctors said it would be.  

And this leads me to why I am starting this family blog now.  We have worked for years to help Rachel walk on her own.  She has made tremendous strides in this endeavor.  We are always looking for ways to improve her mobility.  Our physical therapist had mentioned a few years ago about a surgery that would reduce the spasticity in Rachel's muscles.  Spasticity is the term used for muscles that are tight.  Her muscles stay contracted in her legs and her left hand.  You would think as soon as I heard about the surgery I would have jumped all over it, right?  And maybe I should have.  But when she explained that they would be cutting part of the roots of Rachel's spinal cord my brain shut off and I said no. I could not imagine anyone touching my child's spine.  And at the same time we had an orthopedist telling is she needed to have her adductor muscles ( inner thigh muscles) lengthened ASAP so she didn't cross her legs when she stood and pull her hips out of socket. Way too much to take in at once.  So we opted to go with the adductor surgery, and I put the nerve surgery in a little box and filed it away in the back of my mind.

Fast forward to this summer.  My dad stops by our house to see the kids for a bit and mentions a coaching friend of his has a daughter with CP who had this surgery in St Louis to help reduce her spasticity and it was LIFE CHANGING for her and her family.  My light bulb went on and all the thoughts of the nerve surgery came flooding back in.  No way this was the same surgery we had learned about.  He told me to call his friend's wife and talk to her.  In fact, he dialed the number and handed me the phone.  I talked to this mom for a long time and sure enough it was the same doctor and the same surgery we were recommended for.  I listened with tears in my eyes as she told me how tight her daughter was pre- surgery and how much her life has changed post-op.  She told me that this surgery was the difference between her daughter being dependent and independent.  That statement went straight to my heart!  This is my ultimate goal for Rachel,  her being as independent as possible.  

And so it starts...  I researched and researched this surgery.  The procedure is called a selective dorsal rhizotomy.  And in simple terms they will tweeze out the roots at the base of the spinal cord, check each one to determine which ones are over firing and they will clip only the nerves that are causing the spasticity.  Why go all the way to St Louis?  Well,  besides the fact this procedure is not performed in South Carolina, Dr. Parks is the BEST!!  And we want the best for this type of surgery!!!  Post-op Rachel will start a strict schedule of physical therapy to build up her muscle strength.  This will be a long road for her and our family.  She will need all the love and support she can get.  So that is where I am hoping this blog will come in handy.  I hope to be able to keep our supporters updated and keep Rachel's spirits uplifted with comments left here and on FB.  

She is scheduled to have the surgery next Tuesday, November 19th.  We will fly out to St Louis on Sunday the 17th and return home Sunday the 24th.  Please keep her in your thoughts and prayers!  We will need all of them!!

Thank you for sticking with this long first post!

Love~Jennifer

*If you would like to learn more about SDR you can visit the St. Louis Children's Hospital Website:
SDR: St Louis Children's Hospital