2011

As I have been thinking over the year that was 2011, I've had a lot of emotions flood through me. I remembered tonight, as we rung in the new year at Julee's last year, someone saying something along the lines of "good riddance to 2010. " Many of those that were present and heard the comment agreed. Some made comments about what difficult times they or someone they loved or knew had been having. 2010 wasn't particularly horrible for us, but it certainly wasn't any picnic. Don't get me wrong there was plenty to be grateful for, but it still had been tough.

Enter 2011...pretty sure the hardest yet. So many nights I cried myself to sleep. So many prayers for more faith, patience, and reprieve I uttered. So many times I fought back emotions as I tried to explain, answer questions, and make sense of what I didn't understand. I hate remembering those really hard days. It's just so hard to go back there. To think about how scared we were nearly every minute of the day. How unfair it was! How when things would start to get better they almost always got way worse. Sometimes life is just h.a.r.d. and really unfair. Period. And it's ok to acknowledge that. It's not our job to "fix"it and try to reason the pain away.  I try to focus on the incredible progress that Will has made, and how much we love being together and going and doing things.

So it is that I'm a little weary to send this year off with a  "good riddance." I hope I have learned what I needed up to this point, and pray that next year won't be a refresher course or an advanced level class. I am sad to see it go. It has ended on such a high, high note with so many hopes and expectations of all the good that awaits our family. I feel like we are living again and not just surviving. And while things are not perfectly perfect if there is such a thing, we are together.

Real Quick

I just wanted to make a quick note before I go to bed of a couple things I am thankful for.

1. Something that was wonderful today was watching Will and Jack play together and love each other. They truly enjoyed being brothers today. I am so thankful I got to see that, and hear them laugh together at each other's silliness.

2. Again I am amazed at the good man I married. He is certainly not perfect, but he is one incredibly patient, loving husband and father, who puts up with me, a certainly imperfect woman.

Today has been good.

Christmas Morning

Will woke us up around the usual 6:30 a.m. time. He was very excited to go see if Santa had eaten the cookies and milk, and to see if he'd left anything for him. Santa doesn't wrap the presents he leaves at our house so Will was pretty excited and content to look through his stocking and play with the 2 toys that were left for him, and the two for Jack.

Jack hadn't been feeling that well so we just let him sleep while we got ready for church. Will exercised some pretty incredible patience for a 4 year old since we didn't want to open up the presents from us until Jack was awake. Jack finally woke up a little before 10 with a fever and pretty runny nose. Great. He was definitely not feeling the Christmas spirit even though Will was trying his hardest to get Jack excited about it finally being Christmas.

He cheered up a tad to open his presents, but soon relented to just being pouty and really hard to get along with despite all our efforts. He just felt pretty rotten most of the day, poor guy, but the rest of us enjoyed being together. Due to the fever, we weren't able to make it to church, so we spent the day working on puzzles, watching some Christmas movies, and just playing.

Will's been wanting one of these for a long time. He was so excited. It was so much fun to watch him unwrap this.

Jack's trusty steed, "Cracker Barrel."

Probably Broccoli

While shopping at Wal Mart, we went to pick up some broccoli. Will and Jack eagerly grabbed a crown to place in the bag I was holding. An older couple walked by admiring them and started to ask if they liked broccoli. Will shook his head yes, while Jack stared at them looking very bored. The older lady said to Jack, "I think broccoli looks like little trees. Don't you think it looks like a tree?" Jack replied matter-of-factly, "uh, et's pro-blee broc lee." I don't think she heard him, but I thought it was funny.

Spoon Anyone?

Will was getting ready to eat soup when Patrick asked if he wanted a big spoon or little (children's) spoon. Will said, " I want a man spoon!"

Patrick's Birthday

 Thanks to Patrick's very kind and generous boss, we celebrated Patrick's birthday with tickets to watch the Predators play the Red Wings, and thanks to my very kind and generous Mom we were able to go. We were 2 rows from the ice, right behind the Predators bench. It was a very exciting game with the Predators scoring with only 2 minutes left. It was so fun to be together. Happy birthday, Honey!

All Tuckered Out

Our Thankful Tree

I saw the idea to make a "Thankful Tree" on Pinterest and knew that was something that I wanted to do. So for family home evening, Patrick gathered up the branches (in the rain), while I cut out circles (in the warm dry house). The boys loved this, and so did I! So for the week leading up to Thanksgiving, I thought it would be good to add something we were thankful for each night before family prayer. That happened maybe once, but I'm planning to do better next year. Here is a few of our blessings in no particular order:

Patrick:   To have a job, Lori, William's Neurologists and modern medicine/technology.

Lori:  Electricity, Family, To be home and healthy, and Watching Will and Jack play together.

Will:  "My daddy who plays with me," Peppa Pig, "Not going to the hospital"/Healthy, Chocolate Milk, the Sacrament.

Jack:  Crayons, Drawing, Blanket and Bear, and "Thankful William's not in the hospital."

4 Years Old

Apparently the ride on Thomas made a big impression on Will's idea of what a birthday party needs to consist of. He insisted on another train ride. So we headed down to Chattanooga for a ride on the Chattanooga Choo Choo. It was a beautiful fall day to drive through that part of Tennessee, and through the woods on the train. Gorgeous colors everywhere! We were able to explore lots of train cars before and after our ride. The train station was also really neat, old-timey, and decorated for Christmas.

Later that evening we had cake and ice cream and Will opened up a few presents.

Some of Will's Favorites

Songs: If You're Happy and You Know It, Big Green Tractor, and Fire Truck

Colors: Blue and Yellow

Shows/Movies: Peppa Pig, Fireman Sam, and The Incredibles.

Things to do: Playing outside, ride bike, and dig in the dirt.

Places: Train Station, Nonna and Pa's, Rocky River, Home Depot, Zoo, and Publix.

Foods: oatmeal and blueberries, grandma Hitchcock's butter rolls, pizza, any type of soup as long as there are oyster crackers, brownies, and mommy's chocolate oatmeal cookies.


William also really likes to dance and read books. He loves going to the library. If you ask him what his name is he'll tell you "Weeyum Patrick Benton Jones" which is mostly correct. He prefers being called Weeyum instead of Will but doesn't mind if you call him Will. He and Jack have started playing more together now that his seizures are more under control. It has been so good to see them playing together again. I know Jack has really missed playing with his big brother. Their favorite thing to play together is firefighters.

William,

We love you so much and are amazed at how resilient you have been through all the ups and downs this year. Being 3 has been tough and rough on you! You have helped teach us so much more about patience, faith, gratitude, and enjoying the not so little everyday moments that are all too often and too easily taken for granted. We now feel the need to celebrate (in some way) every "good" day that the Lord gives us. We are so proud of you little man.

Love you so much,
Mom and Dad

In the tunnel

Waiting for the train

Tickets!

Red Caboose

Halloween

This year for Halloween, Will was quite the firefighter, and Jack was the perfect monkey. Our good  friends, Miranda and Derek, invited us for pizza and a little bit of trick-or-treating. We had been to our church's trick-or-trunk the previous weekend so we weren't in need of anymore candy. We stopped by a few houses in the Jenkins' neighborhood, then went back to their house to visit some more. Will and Jack loved playing with Billy the cat. I don't think Billy liked it as much though. Thank goodness we went or I wouldn't have any cute pictures of the boys. Miranda dressed up to. She is so much fun! We're so happy they live so close now!

We carved the pumpkin for FHE a couple weeks before Halloween. it was a doozy.

Double Date

Patrick's boss has season tickets for the Predators. Some of his friends at Cracker Barrel have season tickets too. On this particular night they were traveling, so Jeff got the tickets and parking pass for us to use.  Since there were 4 seats available, we asked our good friends, the Jenkins, to come along. Patrick's parents offered to come and stay with the kids so we could all go out.

With the parking pass, we were able to park right under the stadium. We walked right in with no lines or crowds. After the game, we stopped by Cracker Barrel to have a sweet treat before going home. We were 3 rows from the ice! It's cold down there! And the former governor and his wife sat right in front of us. The game was exciting. We won. AND Miranda and I were on the jumbo tron! Best game ever!! I think it's official; we're hockey fans.

GOAL!

Just a little fight

Nature

We were outside having a picnic today when Will laid down on the blanket. I asked him if he was tired, and he said, "No, just listening to the sounds of nature."

Little Boys Doing What Little Boys Do Best

Hockey

Patrick's boss got us the Cracker Barrel seats for a Predators game. I had never been, and my thoughtful husband suggested a night out with my good ol' friend Miranda. I had so much fun! The seats were awesome, the game exciting, and the company was top notch. Such a fun night out!

Back to Vanderbilt

Thursday morning (Sept 22nd), Will and Jack decided to make a ginormous mess in the brown sugar. I had to take off their clothes and then do some damage control because it was on the counter, floor, inside the oven, and the oven drawer. After cleaning the mess up, I proceeded to redress them. When it was Will's turn, I noticed the incision on his chest looked a little bit irritated towards the bottom. Since the boys had been running around shirtless and rowdy while I cleaned up the brown sugar mess, I thought maybe that had something to do with it. I called Patrick and he said it was probably no big deal. I decided I'd wait till after Will's nap and look at it again.

I checked after his nap and it still looked redder than normal, but looked better than it did earlier.

After dinner, Patrick gave the boys a bath. I was getting ready to go to a meeting, when Patrick let me know that one of the stitches looked like it was "leaking" a clear pus. We called Will's neurologist who told us to call the surgeon. He said it could be superficial meaning only a stitch had gotten infected, but that signs of infection usually show up around the 4th week post surgery (We were just shy a day of 4 weeks). The surgeons resident told us to take Will to Vanderbilt's ER. We called Mom and Joe who were headed to Rocky River, they immediately turned around and headed for our house. Feeling pretty guilty about leaving a very suspicious Jack, I decided to wait with him for Mom and Joe to arrive while Patrick went ahead and took Will to the ER. Before Mom and Joe arrived, Jack was sending me some pretty strong hints that he was staying with me, but luckily by the time they got there he was more than happy to leave with them.

Driving back to Vanderbilt was a bit surreal. There is a 1% infection rate with this surgery and in those cases the surgeons usually end up having to take the stimulator out. And once it comes out, there is no chance of getting it again. It is a "one and done" surgery. Fearing that if the infection was more than skin deep we would lose this incredible tool that had really helped in controlling and stopping so many of Will's seizures was a little hard to think about. So I tried really really hard to be optimistic and remember there was a Greater Power at work.

When I got to the ER, it was packed. I found Patrick and Will and started waiting with them. Despite being back at a hospital, Will was as happy and chipper (and silly) as ever. They had been there since about 8, and I had gotten there around 9. We did our best to make a bed using our legs and laps so Will could sleep while we waited (his usual bed time is 7:30). He did fall asleep, and about 20 min later they called him back. After seeing several doctors and a few nurses, we finally saw a couple neurosurgeons who decided we should stay and start some pretty intense antibiotics and take some blood cultures to determine white blood cell counts and things like that.

In the morning we met with the doctors and were told good news. It looked like the infection was superficial according to blood count levels, and that Will would go into surgery to have a p.i.c.c line put in place so we could administer antibiotics at home for 2 weeks. It was a little nerve-wracking, the idea of having a rambunctious almost 4 year old with something so delicate as a p.i.c.c. line in his arm. If I had been told this a few months earlier the task wouldn't have seemed as daunting since all Will did then was lay around mostly. But now he was almost as active and vibrant as most children his age, something I was not used to but relieved to get to experience again. While we were waiting for Will to go back into surgery, Will's neurosurgeon checked in on us and took a look at Will. He told us that we were pretty much doing over kill with all the antibiotics, but considering how if the infection did get inside his body we would lose the stimulator as an option, we needed to be extremely aggressive.

While Will was in surgery, we met with the a representative of the infusion company. She gave us a little mini course on how we would administer the medicine and take care of Will 's p.i.c.c. line. A little scary but she was very helpful and gave us all the information we would need.

Following Will's surgery, he was a hoot! The nurse taking care of him was highly flirted with. He told her he wanted to go home with her. When she let him know she had three daughters, Will said, a little dejectedly, "Never mind." Will still needed an X-ray done to make sure the p.i.c.c. line was where it was supposed to be. Somewhere between all of that, he snuck a kiss on the nurse. He's quite the charmer!

By the time there was a room available for us to stay the night in, it was close to 4 or 5. Although Will had been put to sleep, it still wasn't the same as really getting a good nap in. We ate dinner, and then went to do some of the few things that have helped us cope while being in the hospital: we visited the train display, walked outside to the court yard and fed the fish, then had Ben and Jerry's. After that, we headed back to our room for some much needed sleep. During all of our hospital stays we have learned how to speak up for Will's needs a little better. When we asked the nurses about what would be happening through the night, we were told a ridiculous amount of times they would need to wake him for medicines that (in our opinion) were not necessary. We tried to very clearly and nicely explain Will's need for sleep, and that we didn't want him awakened for anything that wasn't absolutely necessary. We've almost always had great nurses at Vanderbilt, and that night was no different. They were very respectful and passed the word along to the doctors caring for Will. Will did need antibiotics throughout the night, but the nurse who did this was amazing at coming in as soon as the pump started beeping, and sometimes before it started. So impressed with her!! And thankful for all the ones like her! Unfortunately over the past 48 hours, Will had just not gotten the necessary amount of sleep that his brain needs, and he awoke at 4:30 with a seizure. Thankfully it ended with no need to administer the rescue medicine.

The next morning, we met with the resident neurosurgeon who gave us the ok to go home, and continue the antibiotics at home. Feeling a little overwhelmed with medicine delivery times and a schedule of medicine that dictated preciseness, we headed home. But first we stopped on the 6th floor. While there I had checked Kelsi Caten's caring bridge website and found out that she and Rosanne were there. Fearing to wake anyone by calling, I went to just drop a note off at the nurses' station. Amazingly as the elevator doors opened up to the 6th floor, I saw Roseanne! We were able to talk for a few minutes about Kelsi's and Will's very different medical issues (Kelsi has been battling cancer). I have so appreciated Roseanne's strength as I've read Kelsi's website. It is always nice to visit with someone you love and respect even if it's just for a few minutes. I'm so happy it worked out that way. That I actually got to deliver my message myself.

Upon arriving home, I noticed that the nurse who discharged us didn't quite give us all the information we needed about when to administer Will's next dose of medicine, but once we got that cleared up (just a minor setback), we were doing pretty good. Will's medicines were vancomycin and meropenem. The vanc was taken every 6 hours and the meropenem was every 8. Getting used to that schedule was a bit tough, but Patrick and I make a great team. We did 6, 12, 6, 12 for the vanc and that usually took an hour long to empty. The meropenem was 7, 3, and 11, and it only took around 30 minutes. I liked that one a lot better. The other thing about the medicine was that it had to be kept in the refrigerator, but administered at room temperature. So an hour before the dose was to be given, we needed to set it out. It was very time and thought consuming process, but we were thankful to have this as an option so we could be home instead of in the hospital.

Those 2 weeks of course seemed like they dragged on and on. Patrick and I got very little sleep. But they ended, and we survived. The infection is gone and we are back to our "normal." And I am so very happy to be home and see both of my boys doing very well. We have Many many things to be thankful for.

Boys 'n Boots

Jack's Interpretation

Jack got sent to time out today for hitting Will. After his two minutes of solitude was up I went to get him. I asked him if he knew why he'd had to sit in time out. He replied, "No hit Will." I said, "You're right. We don't hit Will or any one else. He looked at me with his serious Jack face and said, "Keep-a-commanments."

Born to Ride