FIVE YEARS!

I cannot believe it has been FIVE years since Danielle had her life changing scoliosis correction surgery.  It has been a while since I have posted on this blog and a lot has happened since 2015.  She had a two year follow-up appointment in January 2016.  When it was about time to go back to St. Louis, we got a call from Dr. Lenke's office.  We were informed that Dr. Lenke had moved to practice medicine at The Daniel and Jane Och Spine Hospital at New York - Presbyterian/Allen, where he is the Surgeon-In-Chief. We were given the option to follow him there or schedule with the doctor at Washington University Hospital. Although a trip to New York sounded like an adventure to Danielle (she begged her dad to take her on a little trip to NY) it was really not necessary in our situation. Danielle still likes to tease us that she needs to see Dr. Lenke and wants to go visit him.  We had one appointment and are happy with the follow-up doctor appointed to Danielle's case, Dr. Munish C. Gupta, MD.

Danielle and her college roommates. Fall 2016

Our family at a family wedding. 
She and her oldest brother were in the wedding. 
Sept. 2018

As I mentioned in my last post, Danielle attended the University of Missouri in Columbia starting in the fall of 2014.  She led a normal, fun college life.  Her freshman year she rushed a sorority, but she decided after sophomore year that sorority life was not for her.  She moved into an apartment her junior year with some amazing young women!  They always looked out for her.  She really led a normal college life, from attending football games and tailgates, standing on her feet all day, to the long walks to class across MU campus with a heavy backpack.

Family vacation in Mexico.  Summer 2016

Another vacation to Colorado. Summer 2015

As you can see from the picture above our family went on a vacation where a flight was required.  During our 6 month follow-up appointment, Danielle asked Dr. Lenke if she would need a doctors note to get through airport security.  He informed us that the security would not even accept a doctor's note but there was no need to worry since her rods are made out of titanium and not metal.

Danielle and her dad at a KC Chiefs game

Danielle and I at a Tim McGraw concert (my favorite!)

Danielle graduated Cume Laude in May of 2018 from the University of Missouri Columbia with a Bachelor's degree in Business Finance with an emphasis in Insurance and Banking.  She is now an insurance agent and is doing great.  She works out, is active and is leading a very normal, productive life.  She still gets achy when going on all day shopping trips or on long car rides (but who doesn't LOL)  I can't be more proud or grateful!

Danielle and her boyfriend.

Danielle and her brothers at an MU football game. 

Danielle is in a relationship with a young man she has known her entire life.  They have been friends forever and began dating while in college.  They did not attend the same college and have had to make a long-distance relationship work.  Her boyfriend knows her history. He's seen her in pain both before and directly after back surgery.  He is loving and kind and I know he will always have her back! ...Pun intended ;)

Occasionally she experiences back pain.....mostly at high stress times.  Finals week always caused back pain and stress. Other times I notice are  when she's had to stay in the same position for long periods of time, or when she is working on a big project of some sort. She mostly experiences upper back and shoulder pain. The doctor informed her in her 2 year post op that is probably where she will carry her stress.  Like most scars, Danielle does not have feeling in her scar when you touch it.  To much of her dismay, her scar is fading.  She is very proud of it and would love to show it off but with the natural indention of her spine the scar is extremely unnoticeable.

Things have not changed over the last 5 years, and we couldn't be more thankful for the results we have gotten with her life changing surgery. The journey has been difficult at times, there have been battles, and tears.  There isn't a day that goes by that I don't think about those 2 rods and 22 screws.  I wish so many times I could take it all away and live it myself.  God has surly blessed me with a wonderful daughter, husband, sons and people who care for us and have helped us through it all.  I still believe with all my heart that it was a true miracle from God that Naomi called and had an opening so soon.  Dr. Lenke is a top notch doctor and God truly blessed us with that phone call. On the anniversary of Danielle's surgery, my oldest son sent us a recording of the phone call from Danielle right after surgery.  She was in recovery and still pretty medicated.  It made me laugh, cry and also very proud to hear both sons' care and concern for their sister.   

College Graduation.  Spring 2018

January 7, 2015 ONE YEAR POST-OP

One year ago today we were in St. Louis.  After a grueling 6 hour surgery the news that all went well and we could see Danielle in the recovery room was a relief. It has been a year full of progress and great recovery.  Danielle is doing so well!  In the spring she went to prom and had graduation.  Prom dress shopping was very difficult.  She didn't want to order anything and wanted something to show off her scar that she is so proud of.  We went in late February due to our son's basketball schedule.  We drove 1 1/2  hrs to the city.  Trying on dresses tired her out. She was determined and found a beautiful dress.  The back wasn't as open as she wanted but it showed a good portion of her beautiful straight back and scar.

In May Danielle went to Lake of the Ozarks with her class for senior trip and graduated.  The class invited me as one of the adult sponsors.  It was a fun trip with a great bunch of young adults!  Danielle could not get in lake water but could swim in the pool.  It was unseasonably cold but she and her classmates swam anyway.  Danielle couldn't jet ski and tried the go carts but they were just too rough..  She was stiff and sore after the bus ride but as usual, didn't complain.  Graduation was a wonderful beautiful day!  I had many mixed emotions.  She has such a wonderful class and great friends it was hard to see them graduate!

Typically Danielle works at the swimming pool for summer employment.  She decided that if she couldn't lift the children it probably wouldn't be a good idea to lifeguard.  She was doing more and more each day, sometimes more than I would like.

On July 1 we had her 6 month checkup.  The doctor pretty much gave her the green light to do what she wanted!  He asked if there was anything that she wasn't doing that she would like to be doing and her first answer was playing softball.  He said that he didn't see why she couldn't play and that she should ease into it.  Well.....he doesn't know how Danielle plays softball.  She gives it her all on third base!  Her travel team is so wonderful.  They welcomed her back on the roster!  However,  it was difficult on both of us.  She had to play outfield instead of her normal 3rd base position because she wasn't playing up to her full potential. I didn't want her on third and she definitely wasn't ready for that.  It was scary for me to watch and it was frustrating to her because she couldn't move as quickly or hit as hard as before.  She had to be reminded that the doctor said she could ease into her game.  It was so hard not to be able to do everything right off the bat!

 In August we packed her up and took her to the University of Missouri Columbia.  She went a week early to participate in sorority rush. She pledged Sigma Kappa and absolutely LOVES her roommate, and college life at MU.  I was so worried about her sleeping on those dorm mattresses and purchased a foam mattress topper.  (Still not even close to her mattress at home!)  After about 3 weeks she told me "Mom you are not going to want to hear this but my back is really hurting and I am so sore."  My response was, "I am surprised I didn't hear that sooner from you."  She lives on the 6th floor and she and her roommate choose to take the stirs for everything and she has several long walks to class with her backpack.  Getting ready for Homecoming was also hard on her back.  She spent many hours pomping the float and house decoration.  Usually by Thursday she was pretty sore and tired and didn't go to the rec center on Fridays due to a tired achy back.

Danielle and her older
brother, Tyler at MU

Our family.  Homecoming at MU.  October 2014.

Danielle and her roommate.

There have been times throughout the past 6 months that her back has hurt.  She said about a week ago on a Saturday evening that her back really hurt and she had no idea why because she hadn't done much that day.  She still gets sore and tired. Once in a while she feels a hard bump in areas of her back.  If you run your hand across the area she is talking about you can also feel the bump on the surface of her back.  Her dad teases her that her screws are coming loose.  In July we did ask the doctor about these hard bumps.  He said that yes the hard bumps are the screws and no they won't come loose.  She doesn't feel them daily but every now and then you can see or feel a screw on her back.  She is still stiff. She picks up things "correctly"  by squatting and keeping her back straight.  She leads a normal life with friends and family, exercises and does pretty much whatever she wants.  I have asked her several times throughout the last year if it was all worth it.  Her response is always the same "YES!"  She says that she has had times of tiredness, and soreness but can't even imagine how much pain she would be in DAILY if she would not have had the surgery.  So once again we thank Dr. Lenke, and all of his fellows and the nurses at St. Louis Children's  for their kindness and expertise! 

I love this picture from prom in April.
Kind of shows Danielle's personality.

Danielle and her 2 brothers before Christmas Eve mass 12/24/.
She is the shrimp in the family LOL.  Alex is 17 years old and Tyler is 21.

6 month Post-Op (July 1st, 2014)

It has been a very busy spring. Danielle is doing fantastic! I was invited to go with her class to Lake of the Ozarks in May right before graduation. What a great class! The go carts were a little too rough for her and she still wasn't allowed to swim in a lake or pond so the jet skis were off limit as well, but she had a wonderful time!

Graduation Day 5-18-14

Last day of High School

Danielle's Senior Prom

Graduation day was a wonderful and exciting day for her. I am so happy for her and can hardly believe this day has come so soon. She is very excited to see what the future holds for her as she has decided to begin the next step in her life at the University of Missouri, Columbia. Danielle usually works at the public swimming pool in town but has decided not to this summer. She is missing travel softball so much! She still goes to every single game and is even the new first base coach! We had her 6 month post-op visit in St. Louis on July 1st and we got wonderful news for the doctor was very pleased. Danielle is doing amazing. Below is what Danielle posed on Facebook after our visit.......

I had my 6 month post-op appointment in St. Louis this morning and heard GREAT news! Due to Dr. Lenke being such a busy, demanding man, my appointment was with his fellow (his surgical assistant). He told me my x-ray looked perfect but my bone would continue to fuse for another 6-10 months, which is normal. He told me the stiffness that I get will probably never go away but to me is definitely tolerable. He said the soreness I have in my right shoulder is very common and will last for the longest period of time. He said eventually I should be PAIN FREE! Two days ago I woke up with a sharp pain on the right side of my spine. There was a pretty good knot on my spine. I told mom and dad that it was a screw sticking out and they didn't believe me. The fellow told me I was right. Since I am so thin there isn't much between the rods/screws and my skin but there is enough tissue surrounding it that there will be no problem! The best news of all..... He then asked me what the one thing I was not doing that I want to be able to do. My automatic response was "to play softball again". (Dr. Lenke originally told me no contact sports for a year!). He said he remembered softball was so important to me and said there is no reason for me not to be able to play now. He said I would have to ease into it knowing what my body can do but no sliding. There isn't a very good chance that I can mess anything up now! So I pretty much have ZERO restrictions! I am so excited and I never thought it would happen. Hard work and dedication truly pays off! I love my new scar and back and am SO happy with my decision. I am so thankful for Dr. Lenke and everyone who has helped me get to this point!

X-ray on 7-1-14

4th of July

Danielle's first time batting since before surgery!

Perfect

We had our first follow-up appointment with Dr. Lenke today!  Danielle had x-rays at 8:30 am and an appointment with the doctor following the x-rays.  It has been 11 weeks since the surgery that will forever change things for her!  Dr. Lenke's "fellow" saw her first and he examined Danielle and looked at the x-rays and said "This looks fantastic!"  Music to my ears!  Dr. Lenke examined Danielle and his first words after looking at the x-rays were "Perfect, the alignment is fantastic!"  We had a few questions for the doctor.  The tingling in her bottom and hips is normal as long as it does not shoot all the way down her leg.  The nerves are still waking up after such a big surgery.  Her swollen lower back is normal and will probably disappear once she begins to exercise more.  She is to begin bending carefully and can lift objects within reason.  When lifting she needs to remember to lift properly and keep the objects close to her body.  She can continue to walk more and can jog!   We visited the 10th floor, a place where we called home for 5 days and then went down to the PICU.  We were hoping to see some familiar faces but only a couple of nurses that were there during our stay were working today.

We feel so fortunate to have found such a fabulous caring doctor and staff.  We just can't say enough kind words about everyone at St. Louis Children's.  Danielle has made a wonderful recovery and will continue to work toward a full recovery.

Dr. Lenke and Danielle

x-rays 11 weeks post op  3-26-14

March Madness

It has been so long since I have posted.  I apologize.  No news is good news the saying goes........
Danielle has been back to school for six weeks now.  We have had so much going on.  For the first couple of weeks Danielle went back to school part time.  She carried a pillow everywhere.  She is very good at listening to her body and knowing her limits.  After about 2 weeks back to school she tried to go to a full day and then would "pay" for it.  She would be sore and tired and would have to stay home to rest in the morning  or leave school early.  She always lays down to rest after school.  She is usually very sore and her body is tired after being at school all day.  Evenings consist of rest, dinner, rest, homework, and more rest.  At the end of February our basketball team played in the district tournament in a town 50 miles away.  She could not miss cheering on her brother and friends.  That was a little hard on her. After winning the district tournament  we went on to win quarterfinals, sectionals, and went to Columbia for the State Basketball tournament.  Columbia is a 3 1/2 hour drive away.  Danielle did very well.  Our first game in Columbia was at 3:45 on Thursday March 13.  We drove down and went to the noon game and then our game.  Danielle was VERY tired after.  She stood and cheered for our boys the entire game.  On Friday morning she was VERY sore.  She said the motel bed was hard and she did not sleep well.   Our boys brought home the 3rd place trophy!  It was a fun and exciting time.  When we first visited Dr. Lenke our first option for surgery was February13.  We are so fortunate that we got an earlier date in January.  Danielle would have never been able to endure the district, and quarterfinal games nor the trip to Columbia.

 We have had some nice weather and Danielle enjoys walking.  Before surgery any type of running or walking caused her a tremendous amount of pain.  She told me on one of our walks that one thing she is looking forward to is being able to go on walks or even jog later with her friends. She always avoided that before because of her pain.  She says she is sore but not in pain.

On February 22 we tackled prom dress shopping.  I wanted to just order something on-line.  She wanted to be able to try on dresses.   Prom isn't until late April, but she knows after a full week of school that she needs a full day at home to rest before the next school week.  We chose that date because there were no ball games that evening and she would have Sunday to rest.We went with an open mind and decided if we came home empty handed we would still have time to order.We drove to north Kansas City (1 1/2 hrs away).  We arrived at the store around 10:30.  She really wanted something with an open back to "show off" her scar.  After 2 hours of trying on dresses she was tired, sore and frustrated.  She didn't like the fronts of the open back dresses.  We went to lunch and ate in the Yukon, where she leaned back and rested.  I was ready to go home but it was entirely up to her. We went back to same store after lunch and "started over."  After trying on about 3 dresses she found one she LOVED!!!!  The back is not entirely open but over half of her scar shows and she looks beautiful in it!

On Wednesday Danielle will have a new set of x-rays and we will see Dr. Lenke.  This is our first visit since  we left the hospital and we are all anxious to see the doctor.  Danielle's scar looks great.  She still has some tingling in her leg and bottom.  Her lower back (the love handle area) is still swollen also.  Danielle is so excited for this visit to see how she is actually doing and what Dr. Lenke says!

I am really proud of her and must say that I think she is doing really well.  She still has restrictions..no bending, lifting (more than 10 lbs) or twisting. Her movements are still somewhat stiff.  She looks fabulous and has a great attitude.  She goes out with her friends on weekends.  She has a great group of friends who I know look out for her!

Danielle and her brothers.
March 8, Quarterfinal Basketball tournament

Our family.  State Basketball 3rd place trophy.

 As you can see Danielle enjoyed dressing up with her friends to cheer for our Bulldog basketball team!  Great school spirit!

4 Weeks Post Op, School and SNOW!

So......we've had 3 snow days and we are having late start tomorrow.  Danielle and I went back to school on Monday and then mother nature dumped about 8" of snow on us plus frigid temperatures. One month ago tomorrow Danielle had her scoliosis surgery.  It is unbelievable how fast the month has gone. On Monday, I went back all day and Danielle was there from 9:15 to noon.  I enjoyed my day at school so much.  It was wonderful to be back and to see the children again.  God has blessed me with a job I love!  Danielle had a wonderful day as well.  I can't say enough great things about the administration and teachers at our school. They are amazing to work with and are fabulous with Danielle. Danielle took her pillow to school to prop in her chair.  She used a chair from the business room to take from class to class.  She has great friends who look out for her, carrying her books and making sure she is okay.  She is still trying to get caught up in her class work. Since we have been home the past 3 days and her classes weren't continuing to work ahead of her, Danielle has been able to get caught up in most of her classes. She is still sore but is taking no medication! I am so proud of her and I think she looks great and is doing very well.

All of the glue came off Danielle's back last week and her scar is looking great!  Dr. Lenke did a wonderful job.  Danielle was so excited to finally see her scar.  She went to a friend's house for a Super Bowl party on Sunday evening.  She assured me that she would be fine.  Her friends really look out for her. I talked to Danielle about knowing her limits and listening to her body before she went to the party.  She was cautious!  She told me today that in the afternoons she is feeling so well that she forgets about her back.  Then late in the evenings she can always tell if she went over her limits that day.  Although she is doing amazing, I remind Danielle that it has only been one month since she has had a very serious surgery and her recovery is far from over.

2-6-14

3 weeks Post Op

It's hard to believe that three weeks ago today Danielle had her life changing scoliosis surgery.  At this time three weeks ago we were in St. Louis Children's Hospital PICU. It's still hard to believe she has 2 rods and 22 screws in her back.  Her back is straight!  We are patiently waiting for the day when Danielle can say she is pain free!  I am so happy to say that she is no longer taking Oxycodone (or Tylenol for that matter).  She is still taking  prescription medication twice a day for muscle soreness.  Her incision doesn't hurt and she just can't wait until the glue starts to peel off.  Her back gets very stiff and sore.  She explains it as "tired" sometimes.  When her back gets sore she lies down to rest.  Having said that she has had TROUBLE sleeping at night lately.  Yesterday she tried eliminating her afternoon nap and just laid down to rest.  She slept much better at night,  only waking up once.  Her main problem with sleeping is that after awhile she is just simply uncomfortable and she gets very frustrated. She felt like her bed was hard so we put the box springs back on the bed and flipped the mattress back to the pillow top.  That has helped too and she still feels like she is getting plenty of support.

Danielle is walking and doing more every day.  Saturday afternoon Danielle was getting pretty down about school and not being able to be with her friends. Her dad decided it would be OK to take her out to eat.  We traveled 30 miles down the road to a pizza place we love. I was just a LITTLE nervous.  It was just what Danielle needed.  It was the most I have seen her eat since surgery and she was laughing and having a nice time!  We then came home to watch a movie. Since we've been home, Saturday evening was the best Danielle has felt both inside and out.  On Sunday before it got FRIGID outside once again, we walked down the driveway and to the corner and back.  It felt so good to her to be outside to walk and get fresh air!

Danielle is really working to get caught up in her classwork so that she can go back to school at least for part of the day next week.  She did do some homework over her Christmas break but still has a ton to do.  This is very overwhelming to her at times.  It is getting easier to focus for longer periods of time.  

After a couple of days of just seeing family she gets a little down.  Seems like her friends always know when it is time for a visit!!  Her friends play basketball and she realizes that she just won't be able to sit through both a girls and boys game in one evening. Only the girls played this evening and she got to go watch them win! She loved that!  

We are both excited about going back to school next week.  I miss my class and friends as much as Danielle misses her friends. I think Monday will really wear her out and she will have to listen to her body and come home when she is tired and rest.

Thanks for checking in on us. Thanks for your continued support and prayers!

My help comes from the Lord, Who made heaven and earth.  Psalm 121:2     

3 weeks post-op 1-28-14
Still seeing muscle swelling in Danielle's lower back

Night before surgery 1-6-14