February 2, 2020
We don’t know about you, but January was a tough month. It was full of appointments, illness, and the unexpected– seemed we could hardly keep up. But it was also so full of blessings, joy, and surprises!
Long update ahead…. thanks for reading and keeping our family in your prayers!
DISNEY WORLD!!!
We kicked off the new year in Disney World and Daytona Beach, Florida! The trip was sponsored by our wonderful church family, to whom we are eternally grateful. It was the trip of a lifetime and Mara and Olly soaked in all the princess sightings, twinkling lights, and salty ocean waves. It was so fun getting to see the pure joy in our girl’s eyes as they were mesmerized by everything.
For little ones, often we forget how much our bodies depend on schedules and routines to
keep us well rested and ready for play! To Olly’s dismay, Disney was so much to take in that sleep became hard and lack of it became seizure inducing. She had several seizures each day on our trip, and typically after a seizure she needs a solid two-hour nap. Cue the noise cancelling headphones and lots of cute sleeping baby pictures in Disney. The characters and cast members loved posing with our very own sleeping beauty!
HOCKEY + ICKY-SICKIES
Upon our return from Florida, we celebrated Lora’s birthday with the fam and brought the girls to their first MN Wild hockey game through HopeKids (www.hopekids.org). HopeKids provides ongoing events, activities, and a support community for families with children with life threatening medical conditions. Through community donations and support from local businesses, Hope Kids provides opportunities to families like ours that couldn’t normally afford them. Bonus: attendees at the events are all walking the same journey with life-threatening illnesses, so we are surrounded by people who “get it”.
During the Wild Hockey game, both girls came down with high temps and we called the night short. For a series of two weeks Mara spiked 104 temps and Olly followed suit- landing both in the doctors’ offices several times and a few rounds of antibiotics. On top of this, Olly started sporting “bed sores” on her heels which we now believe to be a viral infection. Cue our Dermatologist and more antibiotics. We also dealt with sinus infections and bronchitis for mom and dad. We were nervous Olly would make some unwanted trips to the hospital given her illnesses, but glory to God (and daily contact with her doctors) we avoided the hospital!
To make for an interesting turn of events, insurance changed as of January 1st and we learned that none of Olly’s doctors were covered under the new plan. We had to jump ship to an entirely different plan that covered Olly’s doctors, but are now paying triple the cost for health insurance. We are trusting in God over everything, including our finances. We are still working through the state and county to get help with PCA and medical costs for Olly – nothing has been deemed or provided yet (we are hopeful there is relief in sight over these next few months).
DOCTORS, DOCTORS, AND YOU GUESS IT- MORE DOCTORS
We had a few visits with PT and OT in January. Our PT/OT team is phenomenal, and we cannot say enough nice things about them. Olly is working on using her leg muscles more via a “stander”. The stander allows us to control the degree/angle at which Olly stands so that she can work on keeping her leg and trunk muscles in use. There is also a removable tray that allows Olly to play with toys while also standing. Olly most enjoys being in her stander during our after-dinner dance parties in the kitchen. On our PT wish list was also a “special tomato chair” to allow Olly more seating and positioning options – on wheels. PT/OT was able to find one for rent and we are looking forward to getting it next month. We are also trying out “activated toys” where Olly simply presses a button to activate the toys that make sounds, lights, sings, etc. So far, she is a fan.
In January Olly visited with Endocrinology! They are monitoring her blood sugar levels to be sure all stays as it should. We find that when Olly is sick her levels tend to dip (sometimes lower than we’d like). We have a glucometer at home where we check Olly’s sugars weekly (or daily if sick). Olly is a champ and does not fuss anymore due to smell of alcohol wipes or the prick.
In January Olly visited with Nutrition! We are keeping in close touch with them as we try to calculate Olly’s food intake vs outtake. Olly is tube fed 100% of the time continuously. We attempted cyclical feeds (taking short 2-hr breaks) and her sugars dropped too much. My-o- my has she ever grown though– she started at 18month size clothing in November and is now sporting 3T clothing (weighing in at just over 30 lbs.). She is in the 98th percentiles (not normal for her) so we are weekly cutting her calories to try and get her weight to plateau. Mom and Dad’s arms and backs are getting extra workouts these days moving Olly from place to place, repositioning, working on PT, bathing, changing, etc.
Once we can get Olly’s weight controlled, Nutrition, Endocrine, Neurology, and Genetics all agree that we should put Olly on the Ketogenic Diet. The Keto diet is simply a different type of formula for Olly in her g-tube. Rather than her body using carbs and sugars as energy, she will rely more on fats and protein for energy. The Keto diet should help minimize or even remove Olly’s seizures all together (she averages 2-3 seizures a day currently). The Keto diet also helps to reduce swelling in the body, which will help Olly and the swelling of her brain (very common for Tay-Sachs kiddos). Additionally, the keto diet will allow some additional medication options that might help slow the progression of the disease. We are hopeful and prayerful that the Keto diet will work, and Olly will see great benefits from it.
In January Olly visited with Neuro Psychologist! They did an assessment of Olly’s skills and abilities both by asking questions and having her perform some tasks. In many ways, it breaks your heart to be asked questions you know your child “should do” but cannot due to her diagnoses. Each day we must remind ourselves to choose joy and focus on what Olly can do!
As expected, the assessment confirmed that Olly is very delayed and seeing some regression. She is currently 21 months old, but functions most like a four-month old physically and cognitively. The doctors were complimentary of everything we are doing for Olly in keeping all her senses (smell, see, taste, touch, hear) activated and helping her experience new things. Their recommendation was to keep experiencing new things and new environments as tolerated. Quality of life is most important and living in a therapist’s office for even more therapy or treatments than what we are already doing is not recommended. Some easy suggestions they had were music therapy, getting an adaptive swing, and letting her experience all life has to offer (frosting and ice cream included!!). We will do a follow up with them in in 6 months to re-test.
In January Olly visited with the Cardiologist! We really wanted to be sure that her heart was functioning as expected before we change up her diet, give her any new meds, and this also would be a pre-requisite before any possible clinical trials. Olly had an EKG and an Echo – both looked great! However, with little ones their hearts and valves are so small they cannot see everything going on in the heart. The doctor had Olly wear a 24hr heart monitor (basically a giant sticker) at home. We went this route as it is most effective and will help us be sure that everything checks out and that seizures Olly is having isn’t causing any heart issues or vise a versa that she doesn’t have any underlying heart issue causing the seizures. We will get results back from that in a few weeks.
Whew! You with us still???
LOOK MOM- WE’RE ON TV!
This past month we met with a local TV station CTN (Coon Rapids Community TV Network) who wanted to do a story about our family. We visited in January with CTN as we walked them through our journey with Mara, Olly, and Tay-Sachs. It was bittersweet getting to share Olly’s story and at times overwhelming to talk about just how far we have come and how far we have yet to go. Through it all, love will always win! God has already gone before us and paved the way- all we need to do is listen and follow. We will share the segment with you all when it airs in February.
BENEFIT IN FEBRUARY
We have some amazing friends who are putting together a benefit for Olly this February! We feel so humbled and blessed to have such great friends and community that would put together this benefit to help our family. Join us Saturday February 22nd from 3-7 PM for some food, fun, silent auction, raffle, giveaways, and so much more! If interested- tickets and more details can be found at www.OllyBelle.com.
MARA- YOU GO GIRL!
Lastly, we wanted to give a HUGE shout out to our daughter Mara Joy! She is just the best
big sister! Olly can always count on her sissy Mara for extra snuggles, kisses, story time, dance parties, and sleepovers (bunk bed in Olly’s room for Mara + Olly = weekend sleepovers). Mara has been so brave, generous, patient, kind, hopeful, and loving to everyone throughout this journey. She doesn’t really complain (unless you say no to an extra freezee pop) and see’s Olly for who she really is- a child of God, a loving sister, and if you ask Mara; “the best sister I could ever have- Olly”. Mara keeps busy these days with Kindergarten, dance, and gymnastics. It is amazing to see her progress in different ways, watch new friendships form, and see her connections with teachers and coaches grow. Mara truly deserves so much credit, extra pats on the back, an extra fist bump or high five, and dose of encouragement when you see her next!
WHAT’S NEXT?
The month of February will bring us:
• PT/OT sessions (yay special tomato chair and activated toys)
• Weekly check-ins with nutrition
• Follow up with the neurologist to review everything this past month, and decide Keto diet protocol and medication plans
• Follow up with the eye doctor to check Olly’s eyes, prescriptions, and any further testing needed. Olly sees the eye dr every 3months since tay-sachs can attack the eyes and eventually cause blindness.
• Visit with surgeon to replace the Mickie Button on Olly’s g-tube (they get changed out every 3 months as they can get gunky and kids grow)
• County MN Choices Assessment
• Valentines party for Mara in school
• Tay-Sachs benefit for Olly
• More dance and Gymnastics for Mara
• And whole lotta love!!!
Praying that the month of February is much smoother (and healthier) for your family and ours. As always, we encourage you to share! Let us be a light to each other in a world that is sometimes very dark. Share our story with other friends, family, or a co-worker who may be able to also pray, give, or share. God is working miracles here in us and through us- please don't hesitate to share with us or the world how Olly's story affected you or someone you know.
Above all else- we are going to keep choosing joy!