Journal

Journal entry by MARY-ANN BOWMAN

This post is written by Mary-Ann, aka Grandma. Future posts will usually be authored by Bethany or Galen.

I am in Boise from Montana to provide any/all support I can for Galen and Bethany because that is how I help Berkeley. It is Galen and Bethany who are engaged in the difficult daily tasks that are -- and I mean this literally -- keeping that child alive.

Low blood sugars are life threatening.

And so Galen and Bethany are pricking her finger around the clock to get blood for the glucose meter to tell the story of what is happening with Berkeley's blood sugar. Overnight those sticks are every two hours but during the day, when her activity is more, testing is more frequent.

Think about the emotional toll of worrying for your child but also having to poke a two-year-old with a needle all day long and make her eat when she is not actually very hungry. Berkeley is being a serious trouper but I can tell you this -- she gets it from both of her parents.

In addition to caring for Berkeley, Bethany is nursing and tending a newborn, with all the demands and sleep deprivation that entails. Galen is working and finishing his MBA while also taking the night shift with Berkeley and providing care and support for his little family. They are both exhausted, worried, stressed -- and inspiring.

I started this Caring Bridge page because my professional expertise happens to align with this family's current situation. That means I know well that friends and family so want to "do something" but are unsure how to translate those sentiments into help that is tangible and useful. 

Absent the Magic Wand, the best thing friends and family can do when a child is facing a challenging medical crisis is to rally around her parents. Galen and Bethany can only provide optimal care for Berkeley when they are well-supported and free of as much burden/concern as is possible. 

There are many ways you can help, and I have identified some on the "Ways to Help" section of this site. However, if you have an idea for more personalized help or a question about what else they need, please feel free to email me: sontag.bowman@gmail.com. You may also email if you want to know where to send a card.

Your thoughts, prayers, and good wishes are appreciated. There is no expression of caring and support for this little family that is insignificant.

Thank you for caring.
Show your love and support for Berkeley.
Make a donation to CaringBridge to keep Berkeley’s site up and running.

Journal entry by MARY-ANN BOWMAN

This post is written by Mary-Ann (aka Grandma).

It is impossible to convey the gratitude and the wonder. Words are inadequate. It is as if Berkeley and her family have been lifted by the hands of a thousand angels. Thank you for every expression of caring and support.

As a parent and grandparent, it is amazing to watch as those I love are wrapped up by friends and family. Hard times are less lonely and scary when there is a team with you -- thank you for being part of #teamberkeley.

Our RV has been in Boise at the Riverside RV Park since November so that I have a place to stay during my frequent trips. The last thing Galen and Bethany need is anyone -- no matter how well-intentioned -- staying at their house. "Help" should always attempt to minimize burden -- not add to it.

Berkeley is perfectly fine as long as her blood sugar stays safe. To look at her, you would never know anything is wrong. And then her blood sugar is suddenly 59 and plunging, and it is back to this new reality called WTH?!

Yesterday (Saturday) we visited with our close friends -- Berkeley had so much fun on her first outing since leaving the hospital. Kira and her girls are probably still picking up the 1500 tiny beads that Berkeley dumped on their floor!

I stayed with both kids while Galen and Bethany engaged in the incredibly exciting Errand Running. Sometimes just getting out the house -- no matter what the activity -- is surprisingly exhilarating.

Galen and Bethany are fortunate to have a cadre of supportive friends and family, some with very helpful professional expertise. Yesterday also included getting an education about effective ways to manage Berkeley's blood sugar with diet -- we are so grateful to have a very skilled and generous  Dietician in our family. Thank you, Megan!

And then at 3:09 a.m. this morning I received this text from Galen: "It's been an absolutely wretched night. Berk has been up about every hour and her blood sugar has been trending down all night, making me a nervous wreck."

That is their reality. Things seem "normal" -- and then there is a slap upside the face reminding them that their "normal" right now is unsettled, unknown, and terrifying.

Galen and Bethany are managing the care of Berkeley with love and skill. Their ability to do this has been enhanced by the support of every one of you -- thank you.

Journal entry by Bethany Henseler

This morning we had an early morning appointment with Berkeley's Endocrinologist. All of her blood test have had clear results so far. Meaning, there is no obvious indication of what is causing her low blood sugars. This is encouraging on one hand, and frustrating on the other. Her numbers were great yesterday, which made us wonder if maybe this was just a freak, temporary situation. However, today, she woke up from her nap with a BS of 53. Which, immediately needed to be treated with juice, and caused much anxiety for Galen and myself. Clearly, something is going awry somewhere in her little body, we just don't know where or why. Her doctor ordered more blood tests, so we left her office and my brave girl went and had even more blood drawn. They will repeat some of the previous tests, and add some new ones in an attempt to further explore possibilities.  

So, we are still waiting. 

Thank you all SO SO SO much for your constant support & encouragement. 
Galen and I have been talking non-stop about how grateful we feel to have a community willing & ready to step in and do whatever they can to help us during this time. It is incredibly hard for me to process hard things while they are happening. I tend to want to hide away until it is over. However, including you all in this journey has made me realize that people really do care, and burdens are lighter when shared. So, thank you all. 

Journal entry by Bethany Henseler

A very low blood sugar (48) in the Michaels parking lot yesterday, prompted a phone call to Berkeley's doctor which led us to some new information. Results from the recent blood test showed that levels of insulin in the blood were elevated. Meaning, there was more insulin then needed in her blood, which is problematic. Although we aren't sure exactly what is causing that, we know it needs to be addressed. Berkeley was given some medication to start taking that will help control the amount of insulin that she is releasing. We are not 100% sure that this will work or help. But we have to try something to avoid these dangerous lows. As her Mama, it is so nerve racking to give your child new medication, but I am trying to be optimistic that this will help her body function better. 

We were also able to get our own continuous glucose monitor! Which is such a relief. Basically this means that we will have the ability to check Berkeley's blood sugar without finger pokes! This makes us all very excited. Thank you to those who have donated financially. It makes having to pay out of pocket for these expenses way less stressful. And I truly cannot thank you enough. 

Multiple other tests will take place over the coming weeks, and we are anxious to get results that will help us better understand how to help our girl. We will absolutely keep you all posted as new information is revealed. 

Journal entry by MARY-ANN BOWMAN

I know that Bethany will update when she has time but I wanted to share that the hopefulness that maybe an answer was in sight took a step or two backwards when Berkeley had yet another very low blood sugar yesterday.

UGH.

Bethany and Galen continue to manage things with grace and determination. Thank you for your continued good thoughts.

Comments Hide comments

Journal entry by Galen Henseler

On January 24th, Berkeley (most likely) had a seizure due to a hypoglycemic event (low blood sugar) while I was at work. This was followed by a call to 911, and then a call to me. When I got home, the EMTs had just left because Berkeley had seemed to be okay; before leaving they suggested that we might want to check Berk’s blood sugar.

 

When I got home that morning, Berk was acting normal but within minutes she started getting drowsy and acting strangely. Luckily, since I am a Type 1 diabetic, I have a blood tester handy, and so we checked her blood sugar....

 

Now, a brief aside. For a normal person, a typical blood sugar is around 80-100. When I hit 75 I start to “feel” low – I get very hungry, shaky, and lethargic. The lowest blood sugar I have EVER had in my 14 years of being diabetic is 48. I can count on one hand the number of times I’ve been below 60. For me, high blood sugars are an annoyance, but low blood sugars are scary.   

 

When we checked Berkeley’s blood sugar that morning, it was 41. She was lethargic and slurring her words, and so we began giving her honey to help bring her blood sugar back up. To be safe, we called the paramedics again, and had them come back. They tried to start an IV on Berk (giving her a second degree burn with a flashlight in the process!) and when that was unsuccessful, they took her by ambulance to the ER.

 

At the ER, Berk’s blood sugar started coming back up (the honey was working) but we noticed that her left arm and leg were not moving. They were dead weight, and Berk was unable to use them at all. The ER doctors ran a bunch of tests and Berk had a CT scan -- everything looked normal.

 

However, since a healthy kid’s blood sugar should not drop so low, they sent us to another hospital that has a unit staffed with pediatric endocrinologists. We spent two nights there where Berk had her blood sugar checked every 2-3 hours in addition to having her blood drawn multiple times to have more tests run.

 

Since we were released from the hospital, we have had to keep a close eye on her blood sugar to make sure it doesn’t drop too low – which it continues to want to do. We test her blood sugar all day long. It is my job to test her blood sugar at night. This means every two hours I must wake up in order to wake her to poke her finger to test her blood.


So where does this leave us? We are not sure.

 

Two tests came back slightly off – but even those were not a clear indication of what is going on. All we know is that Berkeley’s blood sugar trends down during the day and especially in the morning. Yesterday she had a 48, and we have had multiple times where she has been lower than 60. If we didn’t know this was happening – and didn’t give her juice to bring her blood sugar back up – she would end up having another dangerous hypoglycemic event and we would be back in the ER.

 

The next steps probably involve genetic tests – not only to see what is going on with Berkeley, but also to see if we need to worry about Lincoln. If we don’t get answers soon, we will explore going to Salt Lake City or Seattle to see specialists at a large pediatric medical center. In the meantime, we will continue to spend our days wondering what is wrong with Berkeley and making sure that we do everything we can to keep her healthy and safe. 

Journal entry by MARY-ANN BOWMAN

This is an entry by Mary-Ann -- aka Grandma. Galen and Bethany are pretty overloaded and so they gave me permission to update.

I arrived back in Montana on Thursday after spending 15 days in Boise. Galen is working from home but while he is present in case of emergency, he is diligent in his commitment to his job and so is upstairs working during the day; that leaves Bethany alone with the two kids. It is not a hardship for a doting grandma to be another adult to help out, I assure you.

Galen works for an amazing company -- we should all buy a Balsam Hill Christmas tree to support this incredibly wonderful company that takes such good care of their employee families. I have one of their trees and it really is a thing of beauty but they also have other products: https://www.balsamhill.com/

But I digress.

We have amazing friends. One special friend has been instrumental in helping sort through all the threads of information and essentially pulling on some of those threads to help direct Berkeley to the specialized care she needs. Thank you -- you know who you are.

Berkeley has an appointment on March 4 in Salt Lake City at Primary Children's Hospital Endocrinology Clinic. In addition, a well-regarded Genetics doc who specializes in metabolic issues is being included on Berkeley's care team. Berkeley also has a very caring and involved Boise Endocrinologist. Berkeley's team is solidifying and it is a strong one.

At the center of Berkeley's team are her parents. I cannot say enough about their thoroughness and commitment to Berkeley's care. Their matter-of-fact, common-sense approach to all of the moving parts makes things easier on Berkeley and keeps her safe.

Berkeley has crazy low blood sugars at least once a day, usually in the morning.

I was in charge one morning last week. When she woke up, her blood sugar was fine. I tested her blood sugar right after her healthy breakfast and it was still fine. Thirty minutes later she looked pale and tired -- I checked her blood sugar and it was under 60. It had dropped about thirty points in thirty minutes!!!

Holy Scary.

Juice bounces her blood sugar but without constant checking and just observing her, she would not be okay. Bethany and Galen are amazingly good at managing this -- but yes, they are ragged and overwhelmed.

Galen is off from work for the next week -- that will help a lot, although he still has school (he is in his last semester of an MBA but classes are online).

I will go back to Boise in a week so that once he returns to work there are two available adults (Bethany and I) during the day. Thank goodness I am on Sabbatical and have the flexibility to work on projects remotely.

I have seen firsthand the level of gratitude Galen and Bethany have for every gesture of caring and support directed towards their family -- it means more than you know. And even more -- those caring gestures have alleviated so much burden for this young family, allowing Galen and Bethany to direct their energy to what matters most: Berkeley.

I know I speak for every one of Berkeley's grandparents -- and we are many! -- when I say thank you for every note, every prayer, every expression of caring and support. You are helping take care of Berkeley and for that we are so very grateful.

Journal entry by MARY-ANN BOWMAN

While I suspect everyone would prefer to hear directly from Galen and/or Bethany, you all are stuck with Grandma once again; they have given me the green light to update.

A lot has happened -- and not a lot has happened. Let me explain.

Berkeley will be seen at Primary Children's in Salt Lake City on Monday. That appointment (with Endocrinology) will be interesting and we hope informative.

I am here in Boise and will go with them to Utah in order to help with Lincoln (their infant) so that both Galen and Bethany can be attentive/present during Berkeley's appointment. 

A lot of you do not know me but for those that do, it will not come as a surprise that I have been obsessively researching and reading about Berkeley's symptoms. Her parents gave me access to her medical record, including lab work; this generated even more obsessive researching and questioning.

I also have REALLY smart and generous friends with incredible patience for my questions, and a willingness to speculate with me.

And that is how/why I offered a gentle suggestion to Galen/Bethany over a week ago -- "How about trying a low fat/high carb diet with Berkeley?"

We got the family Dietician involved -- thank you Megan! -- and Berkeley was started on a diet that focuses on high carbs with lower fat. 

The results have been dramatic. 

Her dangerous low blood sugars, which happened every single day, are no longer happening. As they gained confidence in the stability of her blood sugar, testing (aka poking) of Berkeley has been reduced. And Berkeley FEELS so much better -- it is obvious in her activity level and behavior.

We do not know why the diet has helped -- is it the lower fat? Is it the elimination of almost all dairy products (since they tend to be high fat) with the corresponding reduction of lactose? Is it something else?

All that is known is that diet changes have helped with symptoms -- and that reality is important information for the Specialists who will be helping to figure out what is happening with Berkeley. In addition to the Endocrinologist on Monday, Berkeley has an upcoming appointment with a physician who specializes in genetic diseases.

I cannot say enough about the excellent and attentive care that Berkeley is receiving from her parents. Their thoughtful, intentional, and collaborative approach to whatever is going on with their daughter is why Berkeley remains safe -- that is not hyperbole. 

Thank you so very much for your ongoing support of this little family. Please send up thoughts and prayers that answers for Berkeley are forthcoming in the weeks ahead. We will update again from Utah.





Journal entry by Bethany Henseler

Hello!!! 

First of all, I would like to apologize for not being better about keeping everyone updated. Having two small children is a non-stop job and it has been really difficult to sit down and update. But, I appreciate you all so much and definitely don’t want to keep you in the dark! 

We met with a wonderful endocrinologist in SLC who basically said, in a nutshell, that this is a very interesting case & without further tests cannot give a diagnosis. Although that was frustrating to hear, it helped to know that we weren’t missing something obvious and that we were on the right track with further testing. We took a few days to spend time together as a family in Salt Lake and it was incredibly needed. We have had an extremely difficult past few months & needed to reconnect. 

When we got back to Boise we had an appointment with a metabolic geneticist in town. This was a HUGE gift, since originally there was a YEAR waitlist to see her, but we were able to get in within weeks. Probably due to some nudging from our Grandvocate (Grandma/Advocate 😂). Galen & I both really appreciated the insight from the geneticist, and feel very good about Berkeley being under her care. She had us meet with a nutritionist to see if we could gather more info about why this new lower fat, higher carb diet is helping so much. And she gave us a referral to get some genetic testing done on Berkeley. 

Here is the tough part. And something we are learning a lot about. Anything involving insurance & blood work & testing takes TIME. And often a lot of communication between a lot of people. I can’t stress enough how much having my social worker mother-in-law as our spokesperson has been such an incredible gift. She has been able to advocate for our family in a way that I simply haven’t been able too. But we finally got the okay from insurance to do the genetic testing, so Berkeley had her blood drawn on Wednesday and it was sent in. The results could take up to two months, so we will most likely not discuss the results with our doctor until our follow up appointment in June. 

Berkeleys blood sugar has been incredibly stable & so we are focused now on getting back on a relatively normal schedule. She started going to her little dance class again (we had to stop since physical activity was dropping her BS) and she adores it. She is such an active, cheerful kid, and I am grateful to see her be able to get out and play. 

Thanks again to all of you who have been on this journey with us. It definitely isn’t over, but we are taking advantage of the calm, and are trying to catch our breath.

Love to you all, 

Bethany 
Patients and caregivers love hearing from you; add a comment to show your support.
Berkeley’s Story

Site created on January 30, 2019

The best way to begin is to share a post from Bethany's Facebook page dated January 27:

"We have had a very scary couple of days with our girl. On Thursday, Berkeley had multiple convulsions in my arms, followed by a very low blood sugar that got her an ambulance ride to the hospital. We were there for two nights monitoring her blood sugars & trying to figure out what is going on with her little body. Many things have been ruled out, but we still don't know exactly what is going on. We are home monitoring her for now, with many follow up appointments in the coming weeks. These past few days have been unexplainably difficult as we try and care for our girl & also our newborn. Thank you so much for all the well wishes & prayers & especially those who have offered tangible help. We are exhausted & scared & hoping for the best."

Unfortunately, this has not resolved.  Berkeley's blood sugar is not able to stay in the safe range for her age without constant testing and dietary intervention. 

This is out of the blue. While her father has Type 1 Diabetes, Berkeley's issue is almost the opposite -- it is as if she has too much insulin dropping her blood sugar.

No simple or obvious explanation has emerged. 

Berkeley is under the care of a pediatric endocrinologist;  additional test results are still pending. In the meantime, a scary level of vigilance is required to keep this child from dangerous and life-threatening hypoglycemic events.

It is hard to send individual updates and/or to remember who knows what, and so this page was created both to provide updates and also to help friends and family translate their caring into tangible help that will assist Galen and Bethany in providing optimal care for Berkeley.

Galen and/or Bethany will provide regular updates under the "Journal" section of this site.

Thank you for visiting and for caring about this little family. 

Mary-Ann

SVG_Icons_Back_To_Top
Top