REVIEW OF 2014

It's me. You haven't heard from me in a while. As most of us, my year was filled with both the good and the bad. I developed adrenaline insufficiency due to me being dependent on steroids for over a year. The steroids put my adrenaline glands to sleep. This is very dangerous when I get sick. My body has no way of fighting, and I will need high doses of steroids to compensate for my adrenaline glands not working. I got hit by adrenaline shock three times this year, and it made me very sick. My tummy keeps reminding me of what good days truly are. My tummy will decide how my day will turn out to be.
I lost my life time long nurses Libby and Gemma. It has been a big change for our whole family, and we are still looking for a second night nurse. Luckily, they come and visit me from time to time. They are here to stay in my life, not just in my daily life.
In the middle of me fighting the Mito Monster, I had a pretty good year. This is due to my village of family and friends making special memories with me. Do you want to come down memory lane with me?

January:

My sis started playing volleyboll with Maxx volleyboll club. It was a great year for her to develop in this sport, and finding something she truly likes to do. 

January was a warm month. I took full advantage of my Christmas present and went on too many bikes rides to count them.

I turned 8 years old! My doctors predicted me not seeing my 4th birthday. I just doubled that number.

What a great birthday party!

February:

I got to meet baby Derek for the first time. Isn't he precious?

My old nanny and friend Jac came to visit me all the way from Seattle. She is such a special friend to our whole family. I didn't know she sneaked a final kiss while I was sleeping...

We had visitors all the way from Sweden. The Family Gerdin came to visit us! 

Mom and her long lasting friend Mari. Mom was so happy to spend quality time with her.

March:

Another warm month to go for bike rides with my friends Selina and Leandra.

I got to get some good kisses from their dog Duke too! 

Our cousins came and visited all they way from Sweden. Unfortunately, I was in the PICU the whole time they visited...sis had a great time skiing with them.

April:

Happy Easter! I had a special visit from the Easter bunny this year.

Gemma came back from her maternity leave. I was so happy!

May:

The annual Mito Walk with friends!

I got to go ice skating with my family and Mrs. Brittany! How awesome was that? I am hoping to go again this year.

I got my own zip line taking me from my room to my bathroom and to the stairs. It's a huge help for my family, and I like a comfortable ride through the upstairs of our house.

 We participated in Two Angels Foundation's annual bike ride! Mom was WAY too slow, but everyone cheered us on.

I had fun at school! See how hard my OT Mrs. Peggy had to work for us to win the race. She even borrowed my wash cloth to wipe off her sweat. I call that a true team spirit.

Nurse Brenda took me on my field trip to the Museum of Nature & Science. I do miss my Brenda.

My teacher Mrs. Rep & I.

Sis ended the year achieving Honor Roll. She is a smart cookie!

June:

Summer break allowed sis and I to catch up on some cuddle time.

I am not proud of this, but I had a lot of fun exploring new words with my talker this summer!

Gemma and I went to summer school together.

I was lucky to have Mrs. Pries as my teacher once again.

I got to go to Wash Park!

Mom, dad and sis went to Breckenridge for a few days.

Mom completed her first Century (100 miles) ride! Yay mom!

July:

4th of July bike parade!

I created my own summer bucket list with the help of my speech therapist Mrs. Brittany. I did everything on my list!

Pool time with friends!

Mom completed her second Courage Classic with Summits for Samantha benefiting kids like me.

Pool time with my Mito buddies.

Mom, dad and Sarah went on their first vacation out of State in forever. Florida was their destination. I had fun at home with my nurses who took excellent care of me.

August:

More pool time before school started again!

All ready for 2nd grade! 

September:

I went to the Wildlife Sanctuary for Memorial Day with friends.

School is the best!

October:

I went to the Pumpkin patch a few times. My new stroller did a great job to get me through the corn maze.

We went up to Estes Park to watch the fall colors. I did great on high altitude.

We went to Chihuly's glass exhibit at the Denver Botanical Garden several times.

Mom and dad conquered a Half marathon together. They rock!

Halloween was all about the Minions!

 November:

We took a field trip to the Celestial Seasonings. How fun! 

I participated in my first school musical! 

We celebrated Thanksgiving at home after a longer hospital stay.

I loved being home to decorate my house for Christmas.

December:

I got to meet Santa!

I baked with daddy.

I got to visit with all my friends for the school holiday party.

My nurse Shereen and I sported our Santa hats.

Our annual Christmas craft day!

We had a special visitor for Christmas this year. His name is Cinnamon. I love that little dog. We had  a full house celebrating Christmas Eve with us. Christmas Day we opened our gifts, and had a lazy day together. We all had a really good time.

Starting 2015, I am wishing for health and happiness from our house to yours. That is all we need. Love, Jacob.

MEET ARTIST JACOB

Today something beautiful unfolded in front of my eyes. I came home sweaty from the gym and my hands full of grocery bags ready to jump in the shower. Jacob's new art therapist had just settled into our kitchen with all her paint, paint brushes, and different canvases. Jacob was looking his very best after a long night of rest (with his new night nurse who is a keeper) and the art therapist's apron over his new fleece shirt.

Over the years, Jacob has tried all kinds of alternative therapies alongside with traditional therapies. Jacob has been doing therapy riding horses (hippo therapy), sacral cranial therapy, water therapy and music therapy in addition to physical, occupational and speech therapy. We have wanted to try art therapy for a while, but the opportunity never unfolded until today. Jacob is participating in Children's Hospital's hospice program Butterfly. One of the services they recently offer their kids is art therapy. We jumped on the opportunity to try it out.

Who doesn't love to play with paints? But it takes a special kind of person to truly get the artist Jacob out of his shell. Donna didn't want to hear a word about Jacob needing help painting. She wanted Jacob to paint on his own. He picked each color today. Donna simply supported Jacob's arm, and every stroke on the canvas Jacob painted all by himself. At one point, I could hear on Jacob's breathing how hard he was working to make full strokes across the whole canvas. Not a little task for our boy. And as art therapist Donna said: "it is only the true artists who leave a little white on their canvas".

At the same time as Donna was working with Jacob to perfect his first canvas ever. Sarah decided to join the art therapy. She warmed up to Donna immediately. She got to pick her own special box to paint and she got to make her own canvas. Donna guided her through the colors and strokes she suggested Sarah to try. It was a beautiful interaction between one of Jacob's therapists and Sarah. Sarah has unfortunately not had the best relationship with the Butterfly program due to the social worker assigned to her years ago. It was wonderful to see her working side by side with her brother. As it was time to schedule the next art therapy appointment, Donna asked if Sarah wanted to join Jacob for his next therapy appointment and her answer was "sure".

Nurse Shereen and I also got to put our creativity to the test today. We got to paint a special box for Jacob. We are going to keep Jacob's special things he tells us with the help of his talker. We take pictures of what he says, print it, and put the memories in Jacob's box.

So every two weeks, Jacob and Sarah will get to explore their creativity together. I am very much looking forward to seeing this unfold for both of them.

And just because we have so much snow in Colorado, here are some pictures of our girl taking full advantage of this cold winter weather. She is a true winter girl!

Love, Maria.

CHRISTMAS DEAR CHRISTMAS

Most years I get a reality check of how sick Jacob can get right before the holidays. This year was no different. Our boy being in shock needing blood pressure medication leading up to a big nasty flare up of Jacob's ulcerative colitis. For the past two years, we have been in the hospital for weeks with colitis. This year, we left the hospital right as Jacob's colitis flared up. We have had weeks with a painful stomach, and lots of stool at home.

My only true Christmas wish each year is for Jacob to stay home for the holidays. We have spent two Christmases at Children's, and they are just never the same as at home. What I didn't expect was Jacob's colitis starting to clear up right in time for the holidays. Jacob wasn't just home for the holiday. He was actually feeling well in time for his winter break.

We have had a special guest for the holidays this year. Cinnamon joined us for a week while her owners went to the Mexican beach. This little dog loved hanging out with all of us. She often found a place near Jacob. I loved taking her for walks with Sarah. Not once did I hear her bark. Sweet Cinnamon stole my heart.

We spent the days leading up to Christmas baking and preparing food, something I enjoy very much. It has become a tradition to share our Swedish Christmas traditions with our friends. This year, we were 17 people around the table. We had everything from the traditional ham and turkey, Swedish meatballs and sausages, herring, salmon, Jansson's temptation, and so much more...It is a true feast, and there is nothing better than enjoying it with good friends. This is my number one favorite day of the year. It has nothing to do with the commercial side of Christmas, just food and friends.

After a day of Swedish traditions, we celebrate Christmas Day the American way. We prepare a big breakfast \with leftovers from the day before. We settle in on the couch and open gifts. The rest of the day, we just hang out together. We even got to play a few board games and I sneaked in a little nap! We got a white Christmas this year! The snow started to come down in the afternoon, and it was simply beautiful by the evening hours.

Since both kids are on break for another week, we are staying up a little later at night and sleeping in a little bit in the mornings (if Jacob allows). Joakim and I even made it out on a date night and watched the movie "Wild". Sarah is on her second night in a row of sleepovers, so she is a happy girl. Due to cold temperatures, Jacob has stayed inside for a few days now. I do think he appreciates the slower pace of our family for a brief moment to end this year.

Love, Maria.

HOW IS JACOB DOING?

I get this question multiple times every day right now. Friends and family know Jacob is home again, and are wondering how things are going. I wish it would be a quick answer of him doing well, but unfortunately the picture is a little bit more complicated than that. We are home and that is a huge relief. In a way I don't really want to complain or say anything about liquid massive amounts of stool, stool replacements, myoclonic seizures, cramps and pain before Jacob is able to go and the daily phone calls to Jacob's GI doctor. I think I need to officially introduce Dr. D. and his amazing nurse A. to Jacob's blog. They tag team, and without them we would not be home tonight, we would be back at Hotel Children's. It is definitely still a possibility if we're not able to get Jacob's tummy to slow down. GI told me tonight to bring in Jacob any time we can't manage this from home any longer. They know it is a lot going on...

I have to say in the middle of colitis, our boy is such a trooper. We have had many fun things going on since Jacob came home in time for Thanksgiving.

Watching Charlie Brown's Thanksgiving after a wonderful holiday at home.

Decorating his own tree.

Happy to be home decorating the whole house for Christmas!

Just because he is so cute...

Visiting with Santa from Westminster Fire Department. It was such a great visit!

 Sarah sitting on Santa's lap! This is a very special Santa...

Going places with nurse Shereen. Here they are out on one of many walks.

Baking Swedish saffron bread with daddy.

Yummy saffron bread!

Watching Christmas movies with sis.

Attending a Swedish Christmas candle light service in a beautiful church outside Longmont.

Lucia celebration.

Christmas craft time with his friends Selina and Leandra.

Relaxing after a day of baking and crafting!

Our goal is always to keep Jacob at home as long as he is medically safe. I think the pictures are proof that we do need to keep our boy at home for the holidays.

Love, Maria.

OUR GIRL

I have been writing about our community always coming together for Jacob and us. Finding pumpkin pies on our door step, home made soup ready to heat up in the hospital microwave, goodies and gifts, phone calls and messages at all hours of the day, hugs and cheers.

Joakim and I take turns sleeping in the hospital. When I come home to sleep after about 48 hours in the hospital, there is always  a long list of things to do. Grocery shopping, laundry, dishes, bills to pay, volleyball practices etc. Despite the busyness, being home for the night is a break from the beeping monitors and being "on" as Jacob's advocate around the clock. A lot of times, the best part is to not talk about the hospital and just watch a movie or TV show with Sarah on the couch.

When both Sarah and I are stressed and worried, we snap at each other. It is often something completely ridiculous, but we know how to push each other's buttons. I had been stuck in traffic for over an hour to get home in time for Sarah. Once again, I had to call her to go through the garage since I wouldn't be home in time for her. Two too young children had passed away in the PICU overnight. My favorite PICU nurse decided to have Jacob watch cartoons at 4 am, and didn't know how to start Netflix on his IPad (so woke me up to do it). I was exhausted. Sarah was home, and definitely had an attitude. I wasn't up for an attitude. I wanted my girl to be in a good mode and give me the relief I needed. I know, too much to ask from a twelve years old girl. We argued, and the argument went from a silly thing to tears. We started talking about Jacob, and how sick he had been this time. And in the middle of an ugly cry, I realized how much our girl is carrying around each day. It was like a big punch straight into my tummy. A punch that leaves you without air. I had somehow thought Sarah was doing ok between school, friends and volleyball. Too tired and wrapped up in my own worries to see behind the surface. She was surviving, and was going through the motions of her day, but carrying the weight of her sick brother all on her own. This is where I realized that our community is not always reaching our girl. You know who you all are who are opening your hearts and homes for our girl, and we are forever grateful to you. But at age twelve it is not always easy to struck up a conversation about your sick brother with your friends. Sarah is very lucky to have really good friends, but they are twelve. Sarah keeps her thoughts to herself. She carries the weight on her shoulders. After our good ugly cry, Sarah went to volleyball practice. It was a good practice for her, and after that we had our mom daughter time on the couch and I got to visit the middle school world with my goofy warm hearted girl. We laughed and found each other. Those are the best times.

It did remind me of a blog post I wrote about our girl in 2009 when Jacob was really sick and his future was uncertain:
http://www.caringbridge.org/visit/jacobhallberg/journal/view/id/51bf36f06ca0040273192f66

Jacob gets a lot of attention, and on any given day his care to get through the day is tenfold what Sarah requires. The love for them is always equal. And as many special needs parents do, we try to make it up to the siblings once we're home again. We give her more alone time, more attention. It was really good to be home in time for Sarah's holiday break. It was a good Thanksgiving for us all. A time to reconnect and to catch up on life and love.

December has always been my favorite month with all things Christmas. Sarah is sharing that with me, and this weekend we are planning on getting going on some Christmas baking, Christmas parties, and yes a Swedish Christmas concert!

Love, Maria.

HOME IN TIME FOR THE HOLIDAYS

We made it home in time for the holidays! Saturday evening, I didn't really have a good sense of how long it would take for Jacob to come home. We got lucky this time. The attending took care of Jacob in March this year, so he knew how Jacob's colitis get completely out of control. Rather than waiting to see how Jacob's colitis would progress, he decided to be aggressive. We know what the magical number of Prednisone is to stop colitis, and the first dose was in before noon Sunday morning. Jacob was once again back on antibiotics for his tummy. We were told to let the team know when we felt comfortable to manage his colitis from home. We decided to monitor Jacob in the hospital Sunday, and by the afternoon Joakim and I both felt we could manage this from home. It took a few strings to pull, but we were home in time for Jacob's bed time. It was a cold evening, and when it was time to hit the road, Jacob's handicap van wouldn't start. Battery was completely dead after not being used for 11 days...Luckily, the security guard was able to help us jump start the car, and we headed home!


Monday, Jacob gave us a scare. The boy who never sleeps decided to take a 7 hours long nap!Nothing could get him to wake up despite transfers around the house, vest treatments, and deep suctioning. With how lethargic Jacob had been in the hospital, a thousand thoughts raced through my head. We checked his vitals, kept Jacob warm, and checked his glucose. We were starting to debate if Jacob had to go back to Children's after all...Little did we know, Jacob was simply catching up on sleep after not sleeping well for 11 days. After sleeping all day, he decided to party all night. Honestly, that made me very happy. Our boy sure knew he was home again!


Jacob is definitely still weak, so we are planning on a quiet Thanksgiving at home. It is just what our family needs right now, and we are very grateful to all be home.


I want to once again thank our community for your love, support and encouraging words. I wrote at one point that we never feel alone on this journey. It is so true today, but it hasn't always been the case. I think back on our first hospital stays during Jacob's first year, and I think hardly anyone knew what we went through outside of our immediate family and a few close friends. Over the years, our community has grown and we treasure every visit, every hug, every phone call, every message, every gesture of kindness. So in time for Thanksgiving, I want to simply say thanks.


Lots of love,
Maria.