REVIEW OF 2013

2013 was a pretty good year for all of us. I browsed through photos from the past year, and it gives me many heartfelt smiles. Despite Jacob's medical challenges, he has a pretty darn good life. As I am thinking back on the year, here are my three highlights:

1. Team Jacob is growing, and Jacob has an all around fabulous circle of friends, family, nurses, therapists, classmates and teachers. You are all giving Jacob a rich life, and we are forever grateful to each of you. What else do you truly need in life?

2. Jacob is doing so well with his talker. We have gone from Jacob exploring his talker, and randomly telling us things to now being able to answer questions and let us know what he needs, what he wants, and what he loves. I never thought this would happen, but I have actually had to say "no" to Jacob because I can't accommodate his requests. I never thought I would have actual conversations with my boy. I love, love the new side of Jacob.

3. Jacob has sure had his share of tummy problems this year due to his ulcerative colitis, but seizures are at bay. This is the first fall in many years, we were not inpatient due to seizures. His clinical seizures have improved quite drastically this year. We do see seizures with pain and illness, but that is a very different picture than Jacob having uncontrolled seizures without knowing the reason why.

 

I will now hand over to Jacob to give you a glimpse of his 2013.

 

January:

 

My 7th birthday party was one of my favorite days this year. I loved to be surrounded by kids all day long, and having fun, fun, fun! Selina and Alyssa are two of my favorite friends.

February:

 

 

My speech therapist helped me find the right switch, so I could independently access my talker. I now have my own voice. I will let you know what I want, what I need, if I am in pain, and if I love you. Watch out! I wrote my first letter to Santa this year all by myself.

 

March:

 

 

Spring is here! I stay inside for most of the winter, so spring means freedom! During spring break, we and everybody else in Denver went to the zoo! It was an awesome warm spring day despite the crowds!

 

April:

 

 

I love my sister. Dad went to Europe on a business trip, so Sarah, mom and I had a sleepover. We didn't sleep much, but it was so much fun! Here we are cuddling and watching Curious George at 5 am in the morning.

 

May:

 

 

 

I graduated from kindergarten! I first graduated from Bal Swan, which has been my school since I was two years old. It sure was a great run! I also had an awesome year at Coyote Ridge, which is now my elementary school for the coming years to come.

 

June:

 

 

I went to summer school for the first time. I love this picture of Mrs. Pries (also my kindergarten teacher) and myself. We have a special bond. She still checks in on me as I am now in 1st grade.

 

July:

 

 

 

Summer means pool time in our house! With me going to school all summer and mom spending time on her bike, we didn't have as much time going to the pool, but we still made time for swimming with our friends.

 

August:

 

 

I started 1st grade! I love my special ed teacher Mrs. Chandra. Mom is amazed with how much the two of us can get done together. Mrs. Chandra always makes sure to leave lots of homework for me. I love doing homework - even on Christmas!

 

 

I conquered my first, but not last, 5K race! My speech therapist Brittany and I completed the race together. When we are not out racing, I like to boss Brittany around, but I always make sure to tell her I love her. Without Brittany, I would not have my own voice. Now, we just need to get Brittany on a bike, so we can do some more racing together.

 

September:

 

 

 

I had a rough fall with four back-to-back hospital stays. We had two hospital stays with respiratory viruses and pneumonia followed by two consecutive stays at Children's with ulcerative colitis. What makes me feel better is when I have family and friends around me.

 

 

This is my Gemma getting married. I was so bummed I couldn't share this special day with her, since I was not allowed to leave the hospital...

 

October:

 

 

I went on my 1st bike ride! I got to borrow this absolutely awesome adapted bike from my buddy Robert, and it gave me a new sense of freedom. Guess what Santa brought me?

 

 

Some called me the cutest minion ever. Happy Halloween!

 



November:

 



 

I made it home from the hospital in time for turkey day! I had a relaxing quiet Thanksgiving together with my family. It was just what we all needed this year.

 

 

The day after Thanksgiving, we decorated our home for Christmas. I decorated my own Christmas tree with the help of Sarah. I can't remember the last time I was able to decorate my own tree, since I typically hang out at Children's this time of the year.

 

December:

 

 

I went to my first Nutcracker performance. It was an extra special performance, since my best friend Selina was part of the performance.

 

 

I had a record breaking year baking cookies this year!

 

 

We had a big Swedish feast on Christmas Eve this year. I got to celebrate with my two favorite friends.

 

 

Look what Santa brought me...

 

 

...and lots of cuddling time all year long! Love, Jacob.

 

 

 



 

 





























PURE JOY!

The photos speak for themselves - enjoy!

 

 Jacob is all ready to get on his new bike!

 

My dear friend Karen cheered Jacob on today! I am so excited to soon be neighbors again!

 

And time for the real show:

 

 

Love, Jacob

 

WONDERFUL CHRISTMAS

It's me. I just had a wonderful Christmas. I was home for the whole month of December helping my family to get ready for the holidays. I decorated my tree, and I don't know how many cookies we have baked in the last month. Many! I made lots of Christmas decorations, and I wrote my first letter to Santa with the help of my talker.

We open our stockings on Christmas Eve. I think this is a tradition from my mom's side of the family. I got to open my stocking in bed this year.

We then went on to get all the food ready for our Swedish Christmas celebration. Sarah and I decorated cookies to go with the Swedish gluehwein. I was also able to sneak in some homework before everyone arrived. Sarah thinks it is funny that I want to do homework even on Christmas.

This was my absolute favorite Christmas. I love, love having a full house of friends on Christmas Eve. I love being surrounded by kids. I love a busy happy house. Did I tell you my friends Selina and Leandra came to celebrate Christmas with us? I got this very special gift from them. They created Jacob's book. This is the story about our very special friendship. I love people reading it to me, but everyone cries as they read it to me. It is a keeper!

Swedes watch Donald Duck on Christmas Eve at 3 pm. I know it is a little odd, but I could see how it brought back childhood memories for mom, dad, and our Swedish friends. I just enjoyed hanging out with my friends on my bean bag.

Gosh, we had SO much food!!! We had ham, sausages, meatballs, sweet potato fries, green bean casserole, brussel sprouts, deviled eggs, herring, salmon, kale salad, Johnson's Temptation, potato au gratin, cheese, bread, and so much more. It all ended with Sarah's famous pumpkin pie. It was a long dinner, so I got to hang out with everyone. I had a good time, and made sure to tell everyone I had been good this year! It was a wonderful Christmas Eve, and everyone truly had a blast together.

On Christmas Day, I got to open the first gift of Christmas. I had told Santa I wanted a bike, and here we go! I can't wait to go for bike rides in the spring. For now, I will do short bike rides in my house. We then had a big breakfast, and opened gifts for hours. Sarah was in heaven! I had anxiously waited for Santa to come, so I did fell asleep on the couch. Christmas is exhausting!

We then had a lazy day staying in our PJs all day. Mom is not a big fan of PJs. On  Christmas Day, we got her to stay in her PJ for most of the day! Yeah mom! Sarah and I played with our new gifts. I love my new desk bells I got from Gemma. I use them in music therapy, but I now have my own set. They are so cool! We had some more food......

 

 

 

We ended Christmas Day watching my new movie Despicable Me 2. It is a keeper! I simply had a wonderful Christmas.

Love, Jacob.

JACOB IS IN CHARGE

We're one week away from Christmas. Today happened to be the day when we reconnected with the Butterfly Program after having taking a long break. The Butterfly Program is Children's hospice program. Jacob joined the hospice program in 2008. I remember running into Dr. E down in the hospital lobby during one of Jacob's hospital stays. She asked if I had a few minutes to sit down with her. She looked her most serious. I remember thinking she is going to tell me she is retiring. I didn't expect her to bring up hospice. She did it in an elegant way. It was not about giving up on Jacob. It was to acknowledge the fact that Jacob had a life-threatening disease, and we had seen some significant progression in his disease. She wanted us to have all available resources on our team, just in case.

Fast-forwarding, Butterfly helped us get Jacob his Make-A-Wish. A trip to Disney World we will cherish for life. Butterfly also became my partner as I developed a Sibling Support program for Children's. The part that never truly worked out was to find a team Jacob on the Butterfly side. We truly struggled with the social worker assigned to us. We turned to other sources of support.

In the last year or so, the Butterfly support team has changed completely. A good friend of ours raved about the support her family was receiving from Butterfly. I knew it was time to reconnect once again as they were really eager to help us.

So, today was the day. I knew this would be the beginning of us putting together an end-of-life plan for Jacob in case something would ever happen to Jacob in the home. This doesn't mean that we or Jacob's medical team is giving up on Jacob or stopping his medical care. We are still bringing Jacob to Children's as he needs their care. But we also know that Jacob's medical status could change any time. We as Jacob's parents need to be on the same page. We need to know what our preferences are in the case of Jacob nearing the end of his life. Some things we already know, some things Joakim and I have never explored together. Some things are simply too painful to talk about. But as always, there is something more important than the two of us, and that is our boy. Our boy that we love to pieces. We know that Jacob is in charge. He is writing his own journey. And the only thing we can do is to get as ready as we possibly can to support Jacob every step of the way.

Joakim and I have some serious homework to do after the holidays. The one thing we promised each other four years ago as we were signing a CPR directive for Jacob is to never ever make a decision about Jacob without us both supporting it fully. We made this promise, since we have to live with our decisions for the rest of our lives. That will be my guiding light as we bark on this homework of ours.

But first, we will continue to cherish the holidays together. We will bake and cook over the coming days, and we will enjoy every bit of this holiday together as a family. The hard choices and the hard discussions will come in the new year.

Love, Maria.

IT WAS MY DAY TODAY

It's me. Mom is all wrapped up in the holiday spirit, so I will give you an update on how things are going.

I was doing great as I came home in time for Thanksgiving. After the holiday, we found out I came home on a too high dose of steroids. From one day to the next, my steroid dose was cut in half. All data proves that the new dose is the highest dose to prescribe. A higher dose won't make a difference. Well...you know me...I am always a little bit different. With my steroid dose cut in half, my ulcerative colitis was back in full swing!

I have become very tolerant to pain. There is not much truly bothering me including breaking a bone, believe it or not. There is a different story when it comes to my colitis. It hurts so badly. I seize due to the level of pain. I am afraid to go because it hurts. I often need to be catheterized, since I am afraid to pee. I get very lethargic. My GI doc moved my medications around, and he gave me a stronger pain medication than Tylenol. The pain medication has helped me a lot. No more seizures after my pain got under control. In the last couple of days, my stool output has also slowed down. My new dose of medication is kicking in. I am still not out of the woods, but I am feeling so much better tonight than a week ago.

Due to me being on steroids, my immune system is at an all time low. I avoid germs and sick kiddos wherever I can. Mom and dad have said no to me joining them to all Christmas parties this year. Mom and dad are like Clark Kent and Superman. They never show up together! You decide who is who :-

Bundled up for the Nutcracker!

This morning, mom decided to make an exception to me not being around other kids. She allowed me to go to Selina's Nutcracker performance. Yeah! Super yeah! The performance was within walking distance of our house. We packed up all my stuff, and took off in my stroller. I was sitting in the first row. Mom was excited with how well I was focusing on the dancers for the whole 90 minutes performance. It was amazing, and the best dancer of all was my friend Selina! She was one of the beautiful angels.

And this is where it is so hard. My parents want to keep me safe. I am still going to be on steroids until at least the end of February. We all sincerely want to celebrate the holidays at home. But at the same time, I need to be a kid! I need to live my life - germs or no germs, steroids or no steroids. So, we will carefully pick the times when I can get out of the house and still be medically safe. Who doesn't deserve to experience the beauty of the Nutcracker as a kid?

Love, Jacob.

P.S. I love that I get to practice volleyball with Sarah too! We're a good team:

MY KIND OF HOLIDAY

I am going to start this post off with a disclaimer. I just had my kind of holiday, and I might be dwelling a little bit too much over it. It is just that we haven't had such a great Thanksgiving in a long time, and I just want to capture the moments. I hope you enjoy it with us.

To be fresh home from the hospital makes me cherish each moment at home just a little bit more. My body still knows the difference between sleeping in a hospital bed and my own bed. I get to enjoy my first cup of coffee in private, and I don't have to share my bathroom with 40 other PICU families. I get to cook using my stove and oven rather than a microwave.

We started celebrating the holiday the evening before Thanksgiving. Our dear neighbor and friend came over with a bottle of wine, and we just had to taste the pumpkin pie Sarah had made earlier that day. Our pumpkin pie has crumbles on top, and I have yet to try a more delicious pumpkin pie than this one. The first bite of pumpkin pie each year is always the best.

We were bummed to not be celebrating Thanksgiving with our dear friends south of town, but there is simply too much going on with Jacob right now to go away for the day. The diapers and laundry are still out of control, and Jacob's immune system is at an all time low.

Looking back at the holiday, it was definitely the right decision to stay home. I started the day with a long run around the lake. It was a beautiful run in the warm fall weather. I then went over to our neighbor to put her turkey in the oven as they were out doing a turkey trot. It might not seem like a big deal, but I was so happy to return the favor. Years ago she helped me out with the same thing, so we still had a turkey on the table despite being in the hospital.

After getting our turkey in the oven, we had a long lazy morning. Sarah made breakfast for us all, and we ate in front of the TV watching Macy's Thanksgiving Parade. Jacob took a snoozer on his bean bag, we scanned the Black Friday ads and realized that there was nothing we were desperate enough to get out to buy. As Jacob woke up again, he was all in to the parade, and just wanted to watch it with Sarah. I just love to watch the interaction between these two kiddos.

Sarah and I then went on to cook. I love that I have a partner in the kitchen these days. Sarah loves baking, but on this holiday she helped me make mashed yams, sweet potato pie, and green bean casserole. It was great to not have a specific time to set the table, we just enjoyed our time in the kitchen together. At the same time, Joakim and Jacob got to watch football together.

I have always felt it is a bit of a challenge to get all side dishes warm at the same time as you carve the turkey. This year, we had to add a big seizure to the mix. As we were starting to get all the food ready for the table, Jacob had a big seizure that throw him into status epilepticus. We had to medicate the seizure, and luckily it stopped. We propped Jacob up in his bean bag with suction machine next to him and pulse ox on, so we could monitor him as we had our dinner. This was my low of the day, but I was also so very thankful that we had decided to stay home, so we quickly could get Jacob's seizure under control.

 

 

After dinner, we all cuddled up on the couch to watch Charlie Brown's Thanksgiving. As Jacob was propped up with me on the couch, I had a moment to think back on our Thanksgivings together, some good and some not so good, all dependent on his health.

After we had gotten Jacob to bed, we had Sarah's famous pumpkin pie. It was a perfect ending to our holiday. Sarah was in a great funny mode. She has gotten to the age where she doesn't just want to leave the table when she is done with her food, she actually converse us. She is funny and she sure keeps both Joakim and I honest at all times. She sees right through most things in life.

Despite Jacob going in to status epilepticus right at the time of turkey, I will put Thanksgiving of 2013 in the pile of good Thanksgivings. It was a holiday without stress and a time for me to stop and simply love and enjoy my dear family.

As much as I love Thanksgiving, I do love the Friday after Thanksgiving just a little bit more :- This is the day when I start decorating my house for Christmas. I have a love affair with Christmas. I always blame it on my dad, who always made Christmas extra special in our house as we grow up. I love my house just a little bit more around the holidays. I love the baking, the giving, the music, and my decorations. This year was just a little bit better, since I can't remember the last time Jacob took part in the decorating. I love, love Sarah helping Jacob to decorate his own little Christmas tree.

To top off this holiday, we also got to take Sarah to watch the movie "Catching Fire". Something, we all enjoyed to watch after us all having read the books.

Today we kicked off the holidays with going to the Nutcracker with dear friends. It put me in the right spirit, and I am now going to enjoy every tiny bit of this upcoming holiday.

Love, Maria.

HOME IN TIME FOR THE HOLIDAYS

As I was walking out of the hospital this afternoon with a red wagon filled with Jacob's supplies, new medications, and bags filled with clothes and snacks, I ran into a dad I work with in the hospital. He was carrying a big cup of coffee, looked tired and I could see that he hadn't had time to shave. His daughter has a blood disorder. She had started to vomit blood last night. By midnight they were in the PICU. As he was telling me what had happened, I could hear how worried and concerned he was because her labs don't match up with how sick she had been overnight. He was hoping she would quickly feel better, so they could spend Thanksgiving at home as a family. As he was walking towards the glass elevators to go up to the PICU, I heard my name. One of our Mito families was waiting for their car. They came up to Children's for the week to crank out a series of doctor's appointments, since the kids are out of school. They are hoping to spend Thanksgiving with family in Colorado Springs in between spending time at the hospital. At that moment, it sank in how incredibly happy I felt to be leaving the hospital behind me.

The holidays are a hard time to spend in the hospital. We all have our traditions and expectations of the holidays, and to have a sick child in the hospital is typically not part of that picture. Last year, we brought Thanksgiving to Children's. And yes, by the end of the day, being together as a family is the most important thing. But have you tried to serve a microwaved Thanksgiving dinner on a hospital bed side table? It is just not the same.

Over the last week, the hospital has started to put up their Christmas lights. Each time I have seen someone working on it, it has made me a little sad. The lights are there to bring the spirit of the holidays to the hospital, I get it. The problem is that it always has the exact opposite effect on me. It is the one reminder that our boy always needs the hospital this time of the year. I just wish that one year, I don't have to watch the blinking Christmas lights from a hospital window.

So tonight, I am incredibly thankful that Jacob's medical team decided to let Jacob go home despite still having a bad flare up of his colitis. We are measuring each diaper, replacing his stool output, and he is on a hefty dose of steroids once again. We are right now holding off on the next level of medications, since they all come with really nasty side effects. We are hoping by giving Jacob a couple of weeks, maybe the steroids will kick in and put his colitis in remission? Suddenly steroids seem to be the "easy" decision. There are also still some tests pending regarding Jacob's absorption, which could force some significant changes to his diet depending on the results.

With two days left before the holiday, I am hoping to get my house in order after having been gone for 10 days. We're also hoping to get some cooking done, but most of all just spending the holiday together at home.

Love, Maria.