As many of you know, I have been volunteering for Children's Hospital for the last 5+ years now. I have been on numerous committees making sure the patient and parent perspective is always part of the process and decision-making. There is always a good feeling when you know you have made it just a little bit better for future families being in the same shoes as you are.
"My baby" over the last two years has been the hospital's Family Advisory Council. I worked hard to move the Council from being led by the hospital to a truly Parent led Council. It took a lot of hours, relationship building, diplomacy, persuasion, and leadership to move the Council around. To lead a group of 40 people in a new direction where all decisions are made by vote was a great, very rewarding challenge. I am still very involved with the Council, but taking a less involved Chair position this year. It is a good change.
I love to fix things. I love to organize chaos. I love change.
I am just about to enter unknown territory once again at Children's. I am getting introduced to PCORI (Patient-Centered Outcomes Research Institute). The mission is to make everything patient-centered, how research is done, how evidence is collected, and how research findings are disseminated. The philosophy is that every patient can contribute to research rather than today's approach of small clinical trials with very defined criteria. Today, the average time to get research to touch patients takes 18 years. There is typically another 12-18 years for the research to widely touch patients. We're talking 30-40 years.
PCORnet (the National Patient-Centered Clinical Research Network) governed by PCORI is a national network conducting clinical outcomes research. Every patient can contribute knowledge right in clinic. This is about wide-large research that can reach patients quicker. The goal is to help patients and caregivers make better-informed decisions while having information more readily available.
To reach this goal, PCORnet has created 29 health data networks, Children's Hospital being one of them. The first phase of the grant is to come up with data models and processes to make this happen. My role is to work with 7 other pediatric national hospitals to create patient engagement processes throughout the whole research process. It is very vague at this point. Nobody has any idea exactly how this cooperation will look like. Nobody has an idea of the time commitment right now, but I am hearing we have a lot of work ahead of us.
And this is the thing. I love this kind of chaos and unknown. I know I am part of something that has never been done before. I am told that FDA and NIH (National Institutes of Health) are watching what we're doing.I know I am going to be challenged. I know there are going to be times I am going to want to quit. I know I am going to have my doubts if this is for me. But I also know that I am ready for the next level of parent involvement. I am excited to start working with parents across the country. I am excited to dive into the research field, which I know very little about. And I am getting paid, which is always a bonus.
Children's Colorado had their kick-off meeting this past week. I am excited to say that I was able to follow along for the full 2 hours. It was all about PCORI and research data models. I am now waiting for my project manager at CHOP (Children's Hospital of Philadelphia) to get us parents together and start work. I am scared, I am excited, and I am ready for a challenge!
Love, Maria.
Sunday, March 16, 2014
Friday, March 14, 2014
SPRING TEASER
Days filled with Colorado sunshine and warmth provide "spring teasers" from Mother nature. We see little signs of spring every week, and we try to take advantage of these warm moments as often as we can.
I must say that this has been one of the smoothest winters in a long time in our house. I know we are not out of the woods just yet, but Jacob not being in the hospital a single time in the months of January and February must be a first. I typically get a case of cabin fever every winter, but it has not yet happened this year. Both months came and went so very quickly. Maybe having my best friend from Sweden visiting made the month of February just go by a little bit quicker?
Our boy gave everyone a scare last week with an abnormal creatinine level indicating that something was wrong with his kidneys. After multiple tests, his creatinine level came back normal again. The doctor said it is a complete mystery. This is not supposed to happen. Your level is either good or not, it doesn't bounce around from day to day. The good thing was that we got to go home instead of getting admitted, which allowed us to enjoy a crazy fun 3 days of volleyball at Colorado convention center with our girl.
Most of Jacob's doctors want to see him every 2-3 months. Often multiple appointments fall in the same month or even the same week due to the regularity of his follow ups. This week was filled with follow up appointments. Next week we're doing another three trips down to Children's. The good thing is that Jacob's ENT doctor caught a nasty double-sided ear infection.
What warms my heart as much as my spring teasers is Dr. E admitting that Jacob looks really good right now. She is as afraid to say those words as I am, since we're always afraid we will jinx it. At the same time, we are very much enjoying Jacob looking really good right now.
Jacob is not just looking good. He is also very happy to have his Gemma back again. With the help of his talker, Jacob is persistently asking to see "his baby". Our Jacob has very much welcomed Gemma's baby Derek into our family as well.
Spring here we come!
Love, Maria.
Jacob out on his bike with his favorite two friends.
Today at McKay lake next to our house.
I must say that this has been one of the smoothest winters in a long time in our house. I know we are not out of the woods just yet, but Jacob not being in the hospital a single time in the months of January and February must be a first. I typically get a case of cabin fever every winter, but it has not yet happened this year. Both months came and went so very quickly. Maybe having my best friend from Sweden visiting made the month of February just go by a little bit quicker?
Our boy gave everyone a scare last week with an abnormal creatinine level indicating that something was wrong with his kidneys. After multiple tests, his creatinine level came back normal again. The doctor said it is a complete mystery. This is not supposed to happen. Your level is either good or not, it doesn't bounce around from day to day. The good thing was that we got to go home instead of getting admitted, which allowed us to enjoy a crazy fun 3 days of volleyball at Colorado convention center with our girl.
Most of Jacob's doctors want to see him every 2-3 months. Often multiple appointments fall in the same month or even the same week due to the regularity of his follow ups. This week was filled with follow up appointments. Next week we're doing another three trips down to Children's. The good thing is that Jacob's ENT doctor caught a nasty double-sided ear infection.
What warms my heart as much as my spring teasers is Dr. E admitting that Jacob looks really good right now. She is as afraid to say those words as I am, since we're always afraid we will jinx it. At the same time, we are very much enjoying Jacob looking really good right now.
Jacob is not just looking good. He is also very happy to have his Gemma back again. With the help of his talker, Jacob is persistently asking to see "his baby". Our Jacob has very much welcomed Gemma's baby Derek into our family as well.
Spring here we come!
Love, Maria.
Friday, February 28, 2014
RARE IS BEAUTIFUL
Today is International Rare Disease Day. Today is about raising awareness for rare diseases in the world. Our boy fits the category spot on. He is the only one in the world with his specific Mitochondrial Disease. There is nobody else out there like our boy. Jacob's mitochondrial doctor and researcher has been searching all over the world for somebody else with the same gene mutation like Jacob, and there is nobody out there - so far. When the test becomes available and other Mito patients can be tested, there will most likely be other cases popping up. But one thing is clear. This is a super rare disease stemming from the fact that both Joakim and I have a bad copy of this particular gene. Jacob unfortunately got both of our bad copies. Sarah got none. If you have one bad copy, you can live a healthy life. Two bad copies, you will live with a Mitochondrial disease impacting primarily your brain and liver. This particular Mitochondrial disease has most similarities with Alpers syndrome of all Mitochondrial diseases commonly known.
There is a sense of closure when you know your child's definite diagnosis. The complex medical puzzle is finally solved. Some worries and unanswered questions can be put to rest. For us to know that Sarah never has to worry about being a carrier of this particular disease is a relief, something Sarah can't fully grasp today. It gives you a belonging in your special needs' community. There is a special bond between us Mito families. It is crazy the facial similarities between Jacob and many of his Mito buddies. They could be his brothers and sisters, if you simply went by looks. A definite diagnosis doesn't change Jacob's past or current life, most likely not his future life. Knowing the gene can't reverse the damage the disease has done to Jacob's body. Knowing the gene won't reverse any beliefs we have around what quality of life means for our boy and what we will do each day to make him have the best life possible.
To know that the finding of this particular disease can help other Mitochondrial patients in the future gives me hope. The ultimate hope living in the world of rare diseases is that the researchers can find that cure. Make the rare not so rare any longer.
And in my world of rare, I got to spend time today with several brave parents having children with a variety of rare diseases. Parents who are all strong advocates of their children. I got to hug a friend whose son is very sick in the PICU today. The best part of the day was to see my rare beautiful boy wake up this morning, so happy to start this day. The next best part was to give him kisses on his forehead until he drifted off to dream land tonight.
Rare is indeed beautiful.
Love, Maria.
There is a sense of closure when you know your child's definite diagnosis. The complex medical puzzle is finally solved. Some worries and unanswered questions can be put to rest. For us to know that Sarah never has to worry about being a carrier of this particular disease is a relief, something Sarah can't fully grasp today. It gives you a belonging in your special needs' community. There is a special bond between us Mito families. It is crazy the facial similarities between Jacob and many of his Mito buddies. They could be his brothers and sisters, if you simply went by looks. A definite diagnosis doesn't change Jacob's past or current life, most likely not his future life. Knowing the gene can't reverse the damage the disease has done to Jacob's body. Knowing the gene won't reverse any beliefs we have around what quality of life means for our boy and what we will do each day to make him have the best life possible.
And in my world of rare, I got to spend time today with several brave parents having children with a variety of rare diseases. Parents who are all strong advocates of their children. I got to hug a friend whose son is very sick in the PICU today. The best part of the day was to see my rare beautiful boy wake up this morning, so happy to start this day. The next best part was to give him kisses on his forehead until he drifted off to dream land tonight.
Rare is indeed beautiful.
Love, Maria.
Thursday, February 20, 2014
GOOD STUFF
It's February. We're in the middle of respiratory season. We have had extremely cold weather for being Colorado, and lots of snow. I have learned after living 17 years in Colorado that I don't like cold weather despite me living most of my life in Sweden. I miss my Colorado sun!
Despite cold weather and respiratory season we have a happy healthy boy! Jacob looks really good right now. I am always afraid I'll jinx it saying it out loud, but he does. He does look good. This is what happens when Jacob has been able to stay home from the hospital for almost 3 months. Sure, he has had a couple of ear infections, minor colds, and a flare up of his colitis, but we have been able to manage it all from home.
Every Sunday, I'll write up Jacob's schedule for the week on his white board. It is getting a little boring. School and therapies are happening every week. There is no cancelling due to illness. If something is cancelled it is because one of his therapists is sick. I plan out my own week, and it is happening. We have been able to catch up with our friends, not just having them deliver food to us in the hospital. Sarah has a large commitment to volleyball this year playing in a club. As we decided to have Sarah follow her passion, Joakim and I knew it would be tough with six hours of practice a week and tournaments all over Colorado taking over our weekends. It has been so great for Sarah, and Jacob has stayed home with one of us throughout her whole volleyball season so far. Yeah!
It is amazing to see Jacob thrive when he doesn't constantly have to fight an infection or a flare up of his colitis. Jacob is out biking when the weather allows. He is in his stander multiple times a week. He loves, loves school. We're busy doing homework with Jacob as often as we can in between his home schooling. He always enjoys his special time with his friend Selina. To have her and her sister over for Valentine's day made it all very special.
I have always been told I am direct. I guess we can say the same about Jacob. The other day I got a text message from Jacob's speech therapist while at work. The message said: your son is something else. He asked me to give him a kiss twice. After I gave him his kisses, he told me to get out of here. Yes, that is our boy! We love his directness and all the things he is willing to communicate to us. We're frustrated with all the technology issues we have had with Jacob's new talker. He constantly has to go between his own talker and a loaner as we're trying to figure out software bugs. The nice thing is that the technology issues are not stopping Jacob from communicating. Here Jacob is once again beating me in the game Bumper cars. It is amazing what you can do with technology these days. He is activating games with his communication switch using his right foot, and he is good at it!
In a week's time, we also welcome Gemma back part-time from her maternity leave. We have been extremely lucky to have had yet an incredible nurse join Team Jacob. Brenda is excellent, and she does so much fun things with Jacob. This spring, we will have both Brenda and Gemma work with Jacob as Gemma eases back into work again. Here Jacob is meeting Gemma's boy Derek for the first time.
This weekend, we have good old friends arriving from Sweden for a week. We're looking forward to catching up, and making good memories.
Til next time!
Love, Maria.
Despite cold weather and respiratory season we have a happy healthy boy! Jacob looks really good right now. I am always afraid I'll jinx it saying it out loud, but he does. He does look good. This is what happens when Jacob has been able to stay home from the hospital for almost 3 months. Sure, he has had a couple of ear infections, minor colds, and a flare up of his colitis, but we have been able to manage it all from home.
Jacob trying out his birthday therapy swing with sister:
Every Sunday, I'll write up Jacob's schedule for the week on his white board. It is getting a little boring. School and therapies are happening every week. There is no cancelling due to illness. If something is cancelled it is because one of his therapists is sick. I plan out my own week, and it is happening. We have been able to catch up with our friends, not just having them deliver food to us in the hospital. Sarah has a large commitment to volleyball this year playing in a club. As we decided to have Sarah follow her passion, Joakim and I knew it would be tough with six hours of practice a week and tournaments all over Colorado taking over our weekends. It has been so great for Sarah, and Jacob has stayed home with one of us throughout her whole volleyball season so far. Yeah!
It is amazing to see Jacob thrive when he doesn't constantly have to fight an infection or a flare up of his colitis. Jacob is out biking when the weather allows. He is in his stander multiple times a week. He loves, loves school. We're busy doing homework with Jacob as often as we can in between his home schooling. He always enjoys his special time with his friend Selina. To have her and her sister over for Valentine's day made it all very special.
I have always been told I am direct. I guess we can say the same about Jacob. The other day I got a text message from Jacob's speech therapist while at work. The message said: your son is something else. He asked me to give him a kiss twice. After I gave him his kisses, he told me to get out of here. Yes, that is our boy! We love his directness and all the things he is willing to communicate to us. We're frustrated with all the technology issues we have had with Jacob's new talker. He constantly has to go between his own talker and a loaner as we're trying to figure out software bugs. The nice thing is that the technology issues are not stopping Jacob from communicating. Here Jacob is once again beating me in the game Bumper cars. It is amazing what you can do with technology these days. He is activating games with his communication switch using his right foot, and he is good at it!
In a week's time, we also welcome Gemma back part-time from her maternity leave. We have been extremely lucky to have had yet an incredible nurse join Team Jacob. Brenda is excellent, and she does so much fun things with Jacob. This spring, we will have both Brenda and Gemma work with Jacob as Gemma eases back into work again. Here Jacob is meeting Gemma's boy Derek for the first time.
This weekend, we have good old friends arriving from Sweden for a week. We're looking forward to catching up, and making good memories.
Til next time!
Love, Maria.
Wednesday, February 5, 2014
MY BIRTHDAY
I am 8! My birthday was Friday. Sissy made sure to come and cuddle with me in bed before she had to go to school. She helped me open my gifts in bed. I got many great gifts this year. I got a new therapy mat, and I got a really cool therapy swing! Pictures to follow...Sis also made sure I now have a collection of cool Minion shirts :-
Mom and I had a pretty busy day. We had a party to prepare! I had some tummy trouble on Friday, so we also took some time to cuddle and just hang out together. We also read some of my new books.
Saturday it was party time! I woke up to winter wonderland. Snow everywhere, and it was so beautiful. It continued to snow all day, and it set the perfect mode for the day. Snowflakes slowly falling down as we were celebrating my special day.
I had requested a PJ Valentine's Party with the help of my talker. It was so cool to have everyone come in their PJs. We started out by making pizzas for lunch. Yum!
We then went on to craft time. We made Valentine's crafts and decorated cookies!
Look at my birthday cake! Isn't it the best Valentine's cake ever? I am hearing it tasted really good. My friend Sonja made it for all of us, what a great birthday gift!
After cake, it was time for me to open my gifts.
We then just continued to hang out together. My birthday parties always run long. I just love to have a day surrounded by friends, laughter, and celebration!
Now on to make my 8th year a really good year!
Love, Jacob.
Mom and I had a pretty busy day. We had a party to prepare! I had some tummy trouble on Friday, so we also took some time to cuddle and just hang out together. We also read some of my new books.
Saturday it was party time! I woke up to winter wonderland. Snow everywhere, and it was so beautiful. It continued to snow all day, and it set the perfect mode for the day. Snowflakes slowly falling down as we were celebrating my special day.
I had requested a PJ Valentine's Party with the help of my talker. It was so cool to have everyone come in their PJs. We started out by making pizzas for lunch. Yum!
We then went on to craft time. We made Valentine's crafts and decorated cookies!
Look at my birthday cake! Isn't it the best Valentine's cake ever? I am hearing it tasted really good. My friend Sonja made it for all of us, what a great birthday gift!
After cake, it was time for me to open my gifts.
We then just continued to hang out together. My birthday parties always run long. I just love to have a day surrounded by friends, laughter, and celebration!
Now on to make my 8th year a really good year!
Love, Jacob.
Friday, January 31, 2014
8 YEARS OF LIFE
Our warrior boy Jacob is turning 8 years old today. His birthday has taken me for a trip down memory lane. Our boy was so very sick his 3rd year of life. We were told twice that year we had to prepare for end-of-life care for our boy. We were told Jacob most likely wouldn't celebrate his 4th birthday. There was simply too much going on medically, and Jacob never seemed to catch a break from seizures and pneumonia.
We got to celebrate Jacob's 4th birthday. We were so afraid to expose Jacob to germs, so it was only the four of us and my dad celebrating Jacob. I remember us making a brunch in the morning and having Jacob opening his gifts. I didn't go all the way out, since I honestly didn't know if Jacob would be able to enjoy his gifts for very long. I was afraid the gifts around the house would remind me too much of his last birthday.
We then had a pretty quiet day around the house. We hung out together, and our social worker from the hospice program came over to do hand prints with the whole family. Hand prints that didn't turn out great. Her food coloring choices were so limited, the paintings turned out in an ugly orange brownish color. I don't think we even could get one of the paintings out of its form. All in all, a pretty quiet birthday with an underlying sadness.
As spring came around our boy was still with us. This was a turning point for us. We knew we couldn't live waiting for our boy to pass. We had to stop worrying about the future, and live in the moment. It was of course easier said than done when you have a very sick child who turned blue on us and went into status epilepticus sometimes several times a day. At the same time, we started to find a sense of deep gratitude and sincere happiness when Jacob had a good day.
Today we are celebrating eight years of life with Jacob. The double age from what anyone thought Jacob would live. We are celebrating that he is here with us against all odds. We are celebrating Jacob's extreme endurance and willingness to live. We are celebrating our warrior Jacob. We know not every Mito kid gets to see his or her 8th birthday, so as we are celebrating today, we will also keep our Mito angels close to our hearts.
Happy birthday Jacob, and Go Broncos!
Love,
Sarah, Joakim & Maria.
We got to celebrate Jacob's 4th birthday. We were so afraid to expose Jacob to germs, so it was only the four of us and my dad celebrating Jacob. I remember us making a brunch in the morning and having Jacob opening his gifts. I didn't go all the way out, since I honestly didn't know if Jacob would be able to enjoy his gifts for very long. I was afraid the gifts around the house would remind me too much of his last birthday.
We then had a pretty quiet day around the house. We hung out together, and our social worker from the hospice program came over to do hand prints with the whole family. Hand prints that didn't turn out great. Her food coloring choices were so limited, the paintings turned out in an ugly orange brownish color. I don't think we even could get one of the paintings out of its form. All in all, a pretty quiet birthday with an underlying sadness.
As spring came around our boy was still with us. This was a turning point for us. We knew we couldn't live waiting for our boy to pass. We had to stop worrying about the future, and live in the moment. It was of course easier said than done when you have a very sick child who turned blue on us and went into status epilepticus sometimes several times a day. At the same time, we started to find a sense of deep gratitude and sincere happiness when Jacob had a good day.
Today we are celebrating eight years of life with Jacob. The double age from what anyone thought Jacob would live. We are celebrating that he is here with us against all odds. We are celebrating Jacob's extreme endurance and willingness to live. We are celebrating our warrior Jacob. We know not every Mito kid gets to see his or her 8th birthday, so as we are celebrating today, we will also keep our Mito angels close to our hearts.
Happy birthday Jacob, and Go Broncos!
Love,
Sarah, Joakim & Maria.
Friday, January 10, 2014
EVERYONE HAS A STORY
We had a hard time getting into the day-to-day routine after the Christmas break this week. Early mornings and late nights. Jacob on two different antibiotics for bacteria in his ear and his gut. Night nurse on vacation, new nurse in training. Dish washer broken, new floors needing adjustment. Trying to get the house back in order from the big Christmas decoration party taken over our house. I felt I didn't sit down all week long, it was a race!
Sarah had a birthday party tonight. I was running her over to the party, and was then going to just relax - finally! Another mom was dropping off at the same time as me. The birthday girl's mom introduced us. We both recognized each other from school, and we all started chatting about the winter break. In the middle of talking about the craziness of the holidays, the other mom's fleece jacket logo gave her away. It said Children's Hospital Urgent Care North Campus. I dropped the holiday discussion, and said I recognized her from Children's rather than school.
"That is right. You are the mom delivering labs every week", she answered. Yes, I am that mom, and you are the one printing my son's lab labels, giving me vacutainers and colorful lab tubes. You are the one always giving me a smile, and asking for my son's name, birth date, and address.
And then it clicked for both of us. Our daughters have had a special bond for three years. Her daughter lost her brother in 4th grade due to a rare genetic disorder. This was a major event for Sarah we had to talk and process for weeks. Sarah telling me in the ER parking lot of Children's once that when Jacob dies, she will not be alone because of her friend who has lost her brother. She will have someone who will understand her. We were two moms finally meeting after having heard our daughters' stories for years.
In the hallway of the birthday party, we started talking. The mom telling me her story about her son. How he fought in the PICU the last month of his life. How hard it is to go from having two children to having one. This is the first time I met a mom who truly could tell me how it is for the surviving sibling. It was a powerful encounter with hugs, tears and sincere discussion. The birthday girl's mom crying and hugging us, and so happy we met tonight.
And this is what is so beautiful about life. I was tired. I was ready to relax, shut off my brain for the evening, and instead I had a conversation I will keep with me for life. I will never again just deliver my labs after knowing her story. We all have a story, and the beauty is when someone is willing to let you in on their story. It makes life meaningful.
To a busy new year!
Love, Maria.
Sarah had a birthday party tonight. I was running her over to the party, and was then going to just relax - finally! Another mom was dropping off at the same time as me. The birthday girl's mom introduced us. We both recognized each other from school, and we all started chatting about the winter break. In the middle of talking about the craziness of the holidays, the other mom's fleece jacket logo gave her away. It said Children's Hospital Urgent Care North Campus. I dropped the holiday discussion, and said I recognized her from Children's rather than school.
"That is right. You are the mom delivering labs every week", she answered. Yes, I am that mom, and you are the one printing my son's lab labels, giving me vacutainers and colorful lab tubes. You are the one always giving me a smile, and asking for my son's name, birth date, and address.
And then it clicked for both of us. Our daughters have had a special bond for three years. Her daughter lost her brother in 4th grade due to a rare genetic disorder. This was a major event for Sarah we had to talk and process for weeks. Sarah telling me in the ER parking lot of Children's once that when Jacob dies, she will not be alone because of her friend who has lost her brother. She will have someone who will understand her. We were two moms finally meeting after having heard our daughters' stories for years.
In the hallway of the birthday party, we started talking. The mom telling me her story about her son. How he fought in the PICU the last month of his life. How hard it is to go from having two children to having one. This is the first time I met a mom who truly could tell me how it is for the surviving sibling. It was a powerful encounter with hugs, tears and sincere discussion. The birthday girl's mom crying and hugging us, and so happy we met tonight.
And this is what is so beautiful about life. I was tired. I was ready to relax, shut off my brain for the evening, and instead I had a conversation I will keep with me for life. I will never again just deliver my labs after knowing her story. We all have a story, and the beauty is when someone is willing to let you in on their story. It makes life meaningful.
To a busy new year!
Love, Maria.
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