Valentines Day

Friday was JJ's half day at Regional so we were able to go out and spend some time together Friday afternoon.  We went shopping at a bunch of flooring stores to start looking for some new flooring for our kitchen, powder room and laundry room.  We then went out to eat at Texas Roadhouse since we had some money left on a gift card we wanted to use.  It was hard to think of a fun date with COVID and not many things going on.  It was nice to do some shopping and we enjoyed going out to eat.  Hopefully we can pick some new flooring soon and improve that area of our home.  JJ wasn't feeling all that well, after we went out to eat he came home and went to bed.  He woke up in the middle of the night coughing really bad.  I asked him if he was ok and he said he was feeling really sick.  We both wondered if he had COVID, he thought he might.  I moved to the living room couch to keep my distance from his coughing.  He made an appointment early Saturday morning for a COVID test.  He went right away at 8 AM.  They were able to do the rapid test and it came back negative.  The doctor came in and listened to his lungs and examined him and didn't feel they needed to do the send in test which can be more sensitive.  He felt JJ just had a cold and it would run its course.  We were thankful to hear that since JJ was scheduled to have his second dose of the COVID vaccine in just a few days.  He was also thankful he didn't have to worry about notifying all of his patients he had seen on Friday.  We took it easy on Saturday and did an extra good job cleaning the house.  Saturday evening when Lucy and I got home from her basketball games we noticed the house felt really cold.  We discovered our heater wasn't working.  It was awful timing since it was suppose to be extremely cold.  The high for Valentines Day was only going to be something like 5 degrees.  Sunday morning JJ called around and found someone to come look at our heater.  I went to church with Garrett since he wanted to be able to pass the sacrament.  JJ stayed home with the rest of the kids.  When I got home from church JJ told me the heater guy came and wasn't able to fix the unit.  He needed to order a part and would be back Monday morning.  Thank goodness our home has two HVAC units and our upstairs was still nice and warm.  We spent the day snuggled up in bed watching movies and hanging out in our rooms.  We bundled up and made dinner and did our scavenger hunt with the kids.  They look forward to the scavenger hunt every year and enjoy their little surprises at the end.  Garrett made a chocolate Bundt cake for us to have as dessert.  It was one of his goals to make a Bundt cake and he did a great job.  We are thankful that we were able to spend the day together snuggled up keeping warm.  It made for a Valentines we wont forget.  We are glad they will be able to come back and fix it and our house will be toasty warm again.  JJ and I didn't get gifts for each other but he did get me some pretty flowers and a succulent to add to my collection.       

 

Snow Days

We have had extremely cold weather here with a little bit of snow.  It has been fun to finally have some snow.  We wish it was a little more snow but at least the little bit we have makes everything look pretty.  We braved the cold a few times and took the kids down to the neighborhood hill to do some sledding.  They had a blast.  We didn't last long either time since it was so cold but they had a blast.  We also enjoyed playing outside in small amounts with warming up and hot chocolate in between.  Jack loves to be outside with the kids, he loves to be by us as much as possible.  He was happy to have the bench in our room moved over to the window so he could watch the kids play outside.  The kids have had three snow days this week.  It has made for a strange week for school work.  I was able to do a few things with Nolan since I have most of his work and know what he would be doing this week anyways.  It is hard having it so cold outside.  We miss the warmer days of playing outside and using up more energy being active.  We have been doing a lot of movie watching and video game playing.  My sister shared a thought with me that I am trying to appreciate.  The season for winter is a season of hibernation for some animals, a season of rest.  Maybe we are suppose to rest during this season too.  If that is true then we are certainly getting our rest in.  We will be all rested up and ready to play when the warmer weather comes.    

Dermatology Follow Up

About a month ago Lucy came to me and told me she had a new spot on her head. My heart sank because it was on the right side of her head not the left where all the other areas of concern are. We have always known this surgery will be helpful for her face and the reconstruction of the damage done. We took a step of faith that it would benefit her future. Studies have shown it should stop the progression of damage on her face. We do know that it will not take this disease away from Lucy. She will always have Parry-Romberg disease and will need to be vigilant in watching for areas of concern. Which is why hearing of a new spot on her head made my heart sink. I called and made an appointment with dermatology right away and decided to switch doctors in the practice. Our last follow up appointment left me with more questions than answers. The doctor spent a lot of time questioning us on the medications Lucy was on and why we were on them. If she would have read the notes she would have seen that Rheumatology made the switch and had explained his treatment in all his notes. While waiting for her appointment I had a conversation with our surgeon about her next surgery. I decided to bring the new spot up with him and he asked me a few questions about the location. He told me not to worry about the spot, it was most likely caused by pressure on her head in that spot during surgery. She was in surgery with her head in a position for 10 hours and he was confident that was the cause. This made complete sense to us and made us all feel a lot better. He told me to not let them biopsy it since it would leave a scar. I kept the appointment to meet the new doctor and take the chance to ask some questions. We learned the scalp treatment we are doing is the best one. It is strong and we need to start documenting her scalp appearance to see when we can hopefully stop using it. I also learned I am putting to much on which is causing little pimples on Lucy's hairline. We talked about scar treatment and she said to keep up with what we are using which was recommended by the surgeon and follow up doctors in Wisconsin. She said she was very impressed with how all of Lucy's scars look and thinks they are healing very well. We are still seeing sutures surface on her back and when they do we can continue to clip them. We also talked about Lucy's injections. We need to keep them up and hope Lucy can continue to handle them the best she can. Lucy has been feeling pretty crummy and nauseous after her injection. We can try a few things if her symptoms get worse or if she is having a harder time tolerating them. We want to wait before making changes because we want the injections to be as affective as possible. It is sad to think that we still have so much time left with these injections. We are going to change locations again to see if that helps with some of the pain. It still makes me sad to think of this all being such a part of our life and something that Lucy will battle her whole life. I still think she is so strong and overall is enduring this very well. I am so happy we decided to meet the other doctor in the practice. Lucy and I both really liked her. She spend lots of time with us and answered all of our questions. We both felt comfortable talking with her and discussing everything we needed to. Most importantly she seems knowledgeable about the treatment Lucy needs and agrees with Rheumatology's plan as well. Our next appointment we will sync up and see both Dermatology and Rheumatology back to back in the same building.

Jack particularly like Lucy.  When he gets finished going out in the morning the first thing he does is checks to see if Lucy is up for the day.  If she is still sleeping he will scratch and cry at her door.  It is sweet but I think Lucy misses the uninterrupted sleeping in.  The boys are a little jealous of the attention Jack gives to Lucy.  I don't think they realize that if they were a little more gentle with Jack maybe he would feel a little more safe with them.  

Garrett's science class had experiment day.  He was so excited!  We picked up some supplies from the school so he had everything he needed.  Most of the items they used were things we had around the house.  He was really looking forward to science class.  I thought it was cute when I got home from the gym that he had everything all set up in the kitchen ready to go.  I appreciated the teacher telling the kids several times to make sure to clean up their mess and not leave a mess for anyone else to clean up. I have appreciated the kids teachers and all they do to make the kids virtual school experience the best it can be.  I know there is a lot they miss about being in person but everyone is trying their best to make virtual learning the best it can be.   

The best time of day is watching TV and enjoying snuggles with Jack.  I have always loved watching Dateline and I am glad Lucy likes watching it with me.  I think she looks forward to Friday night Dateline as much as I do.  I appreciate Lucy's companionship and friendship as we spend so much time at home.  She truly is a great friend and I enjoy doing so many things with her.  

The boys had their last Saturday Soccer sessions.  They had a really fun time playing soccer.  It was so good for them to get out of the house and use up some energy.  It was not a typical soccer session, more like a gym class at school with some fun games and then some scrimmage at the end.  Since the kids gym classes right now at home are nothing like they normally are we were fine with whatever there was offered indoor right now. I think both boys are interested in playing soccer outside in the spring.      

 

Everyone always wants a turn to snuggle with Jack when we sit down to watch a movie.  Usually he gets passes around so we all get a turn.  Nolan gets especially excited when Jack chooses to come sit on his lap.  

Nolan lost both front teeth.  They were hanging and looked goofy for a while.  We are glad they are both out.  He was excited for the tooth fairy to come leave him a dollar.  Both of his new teeth are ready to come in now that the baby teeth are gone. 

Jack came to class with Nolan and slept through it.  Nolan had to write a sentence about what his favorite song is and why.  Nolan wrote "I like eye of the tiger because it pumps me up".  Nolan does ask to listen to it on his way to soccer so he is all ready to play when we get there.  

Nolan had all his buddies with him ready to watch a movie. 

Lucy's back is still healing well.  She has had several stitches come to the surface.  That can be pretty painful for her.  Hopefully they all work their way out or dissolve soon.  It has healed enough now that we can put scar treatment on it.  

Garrett is so sweet.  He planned a scavenger hunt for our family.  He made all the clues and was so creative with them.  He even asked to go to the dollar store to pick our prizes he could put at the end.  He had a lot of fun putting it all together and it was fun.  We decided to split up all the candy and enjoy a show together.  It was so thoughtful for him to put that together. 

Snow

We have had a cold winter but haven't had any snow.  We were excited to wake up to some snow falling.  It accumulated all day and it was so pretty to watch out the window.  I had a few places I still needed to go and the roads were really bad late morning but then by the afternoon they were cleared.  The kids had so much fun putting on all their snow gear and playing outside.  Jack loved the snow and would burry his face in the snow and run around.  It was fun to see him discover snow for the first time.  The neighbor kids all came out and had fun playing together.  The next day the snow was still around and had become pretty icy as things refroze overnight.  The boys asked if we could go sledding during lunch.  We bundled up and headed down to the big hill by the clubhouse during their lunch and recess time. We had so much fun going down all together a few times.  They spent the whole time going down as many times as they could.  I am glad we made it down there because the snow was starting to melt by the afternoon.  Nolan especially played with the snow as long as he could.  He used every last bit of snow making snowballs and having wars with the other neighbor kids.  It sure was fun and we all hope we get another big snow this season.      

 

Wrights in Town

My sister Natalie called me and told me they were changing vacation plans last minute.  They were going to be driving through to Florida and wanted to stop and see us.  She asked if they could stay the night at our house.  We of course said yes and were so excited to see them.  She reached out to the other family in town and we decided to meet at the park for a little while.  We could go for a walk and visit outside wearing masks to be extra safe.  Natalie's kids were excited to be out of the car running around and playing at the playground.  My kids were so excited to see their cousins!  It has been 14 months since we have seen Natalie and her family. Her kids have grown so much and we were able to meet their youngest Heidi for the first time.  I had brought some snacks for the kids to have while we walked around the park and visited.  It started to get dark and cold, to cold to really be outside.  We thought about building a big fire there at the park but it was close to sunset and we knew we would need to be out of the park.  We decided to do a firepit at our house and order a bunch of pizza to enjoy on the driveway.  We tried our best to keep everyone outside visiting but it was to cold and windy.  We all ended up inside, which is what we were all trying to avoid.  The kids put a movie on in the basement and we were able to visit a little while longer.  It has been so long since we have seen everyone.  My parents especially have really missed us all so much.  I know it meant so much to everyone to be together.  Someday this pandemic will be over and we can go back to gathering often and seeing each other more often.  Natalie and her family stayed at our house.  We found places for everyone to sleep and got everyone settled.  It was one big slumber party and they all loved it.  Saturday morning I got up and made a pancake breakfast for everyone.  Then they hit the road to continue their journey onto Florida.  I am so glad they came by to see us, it was so fun to have visitors.