Happy Halloween

Halloween for our family looked so different.  When we were making all the appointments and plans for Lucy's surgery it made me sad to know we needed to be in Madison for Halloween.  I didn't like the thought of missing a fun holiday as a family.  I was so glad JJ's parents would be in town to take the boys trick-or-treating.  We had the car loaded up Friday night so we could get an early start Saturday morning.  We got up and were on the road just a little after six.  We had to be in there for a covid test for Lucy by one.  We stopped in Springfield for some breakfast at McDonalds but other then that drove straight through.  We made good time and got to the covid testing just before noon.  We pulled up and they were happy to do it earlier then our appointment.  It was a drive through saliva test.  They gave Lucy a vile and had her spit into it until she filled it up to a line.  It was a good amount of spit she had to put in there, no bubbles.  She kept laughing and it took her a while, at one point she said the stick up the nose might have been easier.  We finished and headed to the Ronald McDonald house to get checked in.  They were so nice and gave us a tour of the home.  It was recently renovated and it is beautiful inside.  There are so many great community area's that would be so fun if covid wasn't happening.  All the community area's are closed except the kitchen.  We had an assigned table we ate all our meals at.  Our room was nice, it looked like your typical hotel room but a little more roomy, more floor space.  We got the car unloaded and then had some lunch.  We decided to get out and go for a nice walk to get some fresh air and stretch our legs.  About a mile away from the hospital and Ronald McDonald house is a nice nature area called Picnic Point.  It has a nice walk that goes out to a peninsula.  It was super windy but such a beautiful day.  We walked around for a while and took all sorts of little trails until it equaled about 3 miles.  Grandma and Grandpa went exploring and walking with the boys too.  They also had beautiful weather, which was so good!  It would have made their stay much harder if it was cold and they couldn't get out and play.  They went to the Missouri River Bottoms conservation area and explored around there.  We have never been there but I have always wanted to go over the summer and see the sunflowers.  They packed a picnic and had a great time.  It was fun to have them send us pictures of their adventure.  They took the boys out trick-or-treating that evening.  They got tons of candy.  Garrett was so sweet and collected lots of candy planning to divide it in half and give half to Lucy since she was missing out.  He has such a sweet heart and he loves Lucy so much.  Craig bought some candy and handed it out.  Craig loves Halloween and had a fun time being in our neighborhood with all the kids.  The Ronald McDonald house gave Lucy a Halloween goody bag with all sorts of fun things.  She put on her skeleton socks and we enjoyed some candy and a movie.             

Grandma and Grandpa Smith

JJ's parent's were so kind to come stay with the boys for a little while.  We were looking forward to having them come.  It has been a long time since we have seen them.  They drove out from Utah and got to our house Thursday afternoon.  We were so glad the weather was so nice for this time of year.   Friday we loaded up the kids bikes and went to the pump track.  We went on a walk and Grandma also sewed a shirt for Nolan's stuffed sock monkey.  Friday night Grandma made sugar cookies with the kids.  We love Grandma Lola's famous sugar cookies at our house.  We all decorated one and watched a movie together.  JJ was sad his time with his parents was short but the boys were excited to spend time with them while we were gone.   

Surgery

Back in August we scheduled Lucy's surgery.  They told us it would not be easy to get things in place and approved with insurance.  We scheduled it to get the ball rolling with the pre-authorization process.  We patiently waited to hear anything from the hospital or our insurance to see if we would be going forward.  I called for an update in September and they told me they don't start working on things until they are 30 days out.  She said our was at the top of the list and flagged since it was a big expensive procedure.  We prayed and prayed that everything would work out and the process would be easy and smooth.  October 9th we were hanging out when JJ walked in and showed me an email.  It was from our insurance company telling us that the procedure was eligible for coverage.  This was huge!  Knowing it was something they would cover was a big step.  We felt confident that we would be having the surgery done!  We all shed some tears of happiness and were so excited.  Well unfortunately it wasn't this simple.  I spoke with Nicole on a regular basis, she was our person at the hospital who was helping with the insurance agreement.  She was always very truthful when I spoke with her and never let me think we should plan on this happening until all the paper work was signed.  Nicole told me the following week that they were stating it was eligible for coverage but there was a limit they would cover.  They had put a cap on coverage until we could give them more specifics about her diagnosis and a more clear date of onset symptoms.  This was tricky since she was diagnosed this past summer but looking back symptoms had started approximately two years ago.  We had not been seeing a doctor then for it.  I immediately called Dr. Siebert's office and spoke with Andi, his coordinator.  She is so nice and she is another person I spoke with regularly.  She told me Dr. Siebert would call me that evening and he did.  He was so nice and told me he would write a letter to the insurance company and explain everything for me.  I sat on my computer and looked through photos with him to pin point some dates of when we noticed things.  He got the letter summited and I felt confident with that information we would be able to move forward.  On October 16th I got a call from Nicole, not good news.  She said things weren't looking good and at about two weeks out we needed to start thinking that moving the surgery was a possibility.  We had an OR reserved for 12 hours which was a long time, if it didn't go forward it wasn't fair for us to take up this room.  I was so bummed.  She explained some new pieces that were going to need to take place.  We have two insurance policies for Lucy.  Once we could see our insurance didn't have great coverage for a lot of Lucy's medical treatment we put her on a second one to help cover more.  I had given that information to Nicole and they were going to try to see if the second insurance would cover any cost if the cap on the first insurance wasn't removed.  This is where we ran into big problems.  The second insurance wanted a referral from a doctor.  We weren't sure who to get that from since we weren't referred by anyone.  She basically told me that were going to continue working on this but honestly it was going to be a miracle if it happened.  I told her that is exactly what I will pray for then, a miracle.  I almost cried after getting off the phone with her.  I felt like we hit a huge wall.  we kept working and moving forward trying our best.  I reached out to Lucy's doctors here and tried to see if anyone would write us a referral letter.  Everything was taking so much time, time I didn't feel like we had.  I talked with Andi at Dr. Sieberts office.  She said he wasn't going to take us off the books, he was still hopeful like we were that this was going to happen.  We had a family fast that Sunday, we felt like when things are out of our hands the only thing we can do is pray and fast.  Wednesday I got a call back from the only doctor that had a chance of writing the referral letter.  They told me they would not write a letter for us.  The doctor was not recommending the surgery to be done and he didn't want to have his name on the recommendation.  We were at JJ's office when I got the call.  I felt so defeated.  There was literally nothing to do.  JJ said he was going to make some phone calls and I headed home.  I was so sad, I didn't know what to do and I didn't see a way around this.  If this didn't work out then it wasn't going to change if we postponed the surgery.  JJ called me and said he called our insurance company, our main one that we have as a family.  He talked to them and they said they were planning on paying for the procedure and acting as the primary insurance for Lucy.  He had them double check and make a note of this on our account.  He called me and I cried!  I couldn't believe it!  This was the answer to our prayers, this was the miracle Nicole told us we needed.  There were still pieces to put into place but knowing we could move forward with them stated as our primary insurance was important.  The next day I called Nicole and told her this.  She was going to need to look into it and make sure that was true.  We also got a copy of the letter Dr. Siebert wrote and had that in our possession to get it exactly where it needed to be.  I didn't hear anything until Friday afternoon.  She said they were working hard and had some big steps.  She had confirmed and had in writing from our insurance that they were the primary insurance.  She also had an agreement made with the hospital to accept payment over 90 days.  She said the ball was in our insurance company's court and they were waiting to make and sign the final agreement.  I tried to get a feel for if things were happening and she still wouldn't say.  She said things were looking good and she couldn't believe the amount of progress they made and how quickly things were happening.  That was another testament that prayers were being answered.  I went into the weekend thinking positive thoughts.  We started to make preparations and shop for things for the trip.  We were down to the wire and I didn't want to feel unprepared if it all happened.  Monday around lunch time Nicole called me  and said all the final papers were signed and we were officially ready for surgery!  Lucy was there in the kitchen when I was on the phone.  I yelled with excitement and so did Nicole.  For the first time Nicole shared excitement and emotion with me.  Lucy cried because she knew what was happening!  We had a cheerful moment in the kitchen!  We got our miracle, surgery was happening in one week.  Looking back at all that had to happen and in that amount of time I can only see that it was possible with the several prayers offered for our family.  We had some good friends who offered to take some photos to document the progress of Lucy's face.  We went to their house Thursday afternoon and took some before photos.  I think Lucy is beautiful and I am scared, interested and excited to see her change over the course of her treatment.                                

Family Halloween Party

We have missed getting together with family.  So many of our normal events have been canceled and we miss everyone.  We decided we should do more virtual events.  Kelsey put together a fun Halloween party that we did over video chat.  We played some fun games like a game where we looked at pictures of things really close and tried to figure them out.  We also had a pumpkin carving contest.  The kids all carved their own pumpkins and did a great job.  Lucy made hers a Pac-Man pumpkin, Garrett made a scary face on his and Nolan made a bunch of little faces all around his pumpkin.  I was proud of the kids for working on their own and coming up with their own unique designs.  I am glad we did it and we are planning on doing one for Thanksgiving too.  I know it means a lot to my parents to be able to see us all and be involved.  It was fun to do some Halloween activities, it is just around the corner!

 

Virtual School Party

I love that Nolan’s teacher had a virtual Halloween party for his class.  She is the best teacher!  They got to wear their costumes to the virtual party and she took time to let each kid show their costume with everyone.  They played a fun Halloween bingo game, she read a rhyme and you have to guess what it was and see if it was on your bingo card.  They read some cute Halloween books and one was this cute interactive one where they made a jack-o-lantern at the end.  They watched a movie at the end of the day.  It was an early release day and it was fun for them to have a day off from learning.  

 

Nolan and I are in a good grove with his school work.  I had to send a picture of Nolan with his work and decided to have him stand by his scarecrow.  His teacher said every year she has her students color this scarecrow and she wasn’t going to have her virtual kids miss out.  She enjoyed seeing that we did it and had it hangin up in our learning area. 

We have been doing some dog sitting and it has been really enjoyable.  We have all enjoyed the snuggles of the dogs and the excuse to go on walks during the day.  Life is stressful as we are still trying to work out the details for Lucy’s surgery.  Having Chloe Dog to snuggle up with on the couch each evening was enjoyable.  We all found comfort in having her at our house.  We also had Nestle at our house over the weekend.  He was quick to be my constant companion and again slept right by my side.  We still aren’t planning on getting a dog of our own but always welcome a few of our favorite furry friends to our house. 

Nolan and I spent some time together while Lucy was at an appointment.  We had enough time to kill that we went and got a frosty at Wendys.  We ate our ice cream together on the curb and enjoyed the sunshine.  I was thankful for a little one on one time with him.  When we finished our ice cream we walked around and looked at the big trees and all the acorns on the ground.  He found a few acorns with their hats still on and wanted to take a few home with us.  I spend a lot of time with Nolan doing school, it was fun to spend time together not doing school work. 

Our neighbors are so sweet and are an awesome support to our family.  They gave Lucy a sweet basket to prepare for her surgery.  It was filled with lots of thoughtful things in there like a new mask with her name on it, the Hunger Games DVD’s, some calming tea, some soap handmade by Carrie, a scripture Journal and daily devotional book.  We couldn’t ask for better neighbors.  We know if there is anything we need they are happy to help!

 

Follow Up

Lucy had a follow up with the dermatologist at children’s.  This was the doctor who helped diagnose Lucy just a few months ago.  Lucy and I both commented that enough time has passed that we are now having follow up appointments.  It has only been three months but so much has happened.  We have learned so much and been through so much.  I feel like we have all grown and have a better handle on the emotional side of this diagnosis.  I know when we first figured out what was happening I cried so much.  I cried almost everyday several times, I was so sad.  I was so sad for so many reasons and didn’t know what Lucy’s future would hold.  I remember asking JJ for a blessing so I could stop crying and feel okay with everything.  I feel so much better emotionally as we go to appointments and I know that is such a blessing.  Lucy has also grown so much as she has handled the treatments and medications.  I know it is hard for her to look at her face and not like what she see’s.  Our appointment felt differently, we knew what to except and have a better understanding of things.  Nothing changed from this appointment except the medication they have prescribed or her scalp.  We discussed her upcoming surgery and her dermatologist didn’t seem impressed by it, the resident doctor found it fascination and was very interested in it.  I feel like nothing medically came form this appointment.  What did come from this appointment was a reflective attitude of all that has happened.  We have been extremely blessed and it is neat to look back and recognize that.  We are also stronger then we think!

 

BT Epic

JJ rode in the BT epic race in Steelville Missouri.  He has done this race before and enjoyed it.  He was excited to do it again.  He has been training a little more this year and felt much more prepared.  We had to get an early start.  We got up at 4:30 and hurried to get things packed and in on our way.  We aren’t really morning people so JJ knew this was a sacrifice for us.  We were happy to be there for him and support him on his race.  When we got there JJ went to registration and they told him he was to late.  He had paid for the race but needed to get his number and his time chip to track him.  He couldn’t believe it!  We weren’t late and there was no notification about the time I registration would close.  There were other racers who were also upset.  We went over to the starting line and got prepared to start the race.  As they were making announcements they were talking about the timing chip.  JJ went up to the guy and he told him that if he wanted to head back over once the race started he would get him a timing wrist chip.  That was worth it to JJ.  It wouldn’t start the race until he crossed the starting line so he wouldn’t have any time added to his race time.  It was strange to have JJ have his own official start, we watched him head down the road.  He had a big smile on his face and we could tell he was so happy and excited.  He said it was kind of nice to start the race on his own.  He said he didn’t come up to another rider for a few miles.  He then knew that as he passed people he was also making good time.  

We drove up to the campground where we could see JJ come through.  We sat in the car for a while and the kids watched a movie and read books.  When it got to be about time to start watching for him we went over.  We were thankful JJ wore a bright yellow jacket so we could spot him better.  He had a great first half of the race and was right on track with his time.  We gave him some snacks and changed out water and he was on his way.  We went back to the first area and had a picnic lunch and then walked over to the creek so the boys could play in the water.  When we knew it was about time for him to come back by we went over to the road he would be coming down.  It took him much longer then we thought and I started to worry.  Whenever thing take longer I always hope he is ok.  I worry about his bike working well, him getting a flat tire or even worse having a crash.  Thankfully he came down the hill and said everything was going good, he was just going slower.  It was a really windy day and the winds were strong and there were several large hills he had to climb.  It was exhausting and took longer then he thought.  He had another short stop and then headed off again.  Only 7 more miles at this point.  

We knew it would take him about a hour to finish the last section of the race.  We went and sat in the car to rest and have a snack.  I closed my eyes for a little bit which felt nice.  The sun was warm and it was a beautiful fall day.  Around a hour we started to head over to the finish line.  As we were just ready to head down the final stretch across the field we looked back and saw JJ coming around the corner.  We couldn’t believe it.  He was faster then we thought.  We all started to run and chase him to the finish line so we could see him cross.  We told him to slow down!! People were laughing at us chasing him down to the finish line.  They thought it was pretty cute to see his family there to support him.  He was surprised to see us too and said he was just about ready to peddle hard and finish strong and then slowed down.  When he got closer to the finish line we stopped running and told him to just go, we could see him from there.  We still cheered him on and were so proud of him.  He ended up finishing in 6 hours and 9 minutes, a hour and 30 minutes faster then when he did the race two years ago.  He came in 15th for his group and was proud of himself.  He had a good ride and everything went smooth for him.  After he cooled down and did some stretching he took a shower and changed his clothes.  We then enjoyed a BBQ dinner that was provided.  We didn’t hang around long because of COVID and we still had to drive home.  We were happy to have such a beautiful day to be there for JJ.  Also glad JJ was able to have a good ride and had fun doing something he loves!  It is neat to see him accomplish something he has worked hard for.