The last few months have been full of many challenges and trials..and at the same time, completely brimming with abundant blessings. There are days when it hits us…wait..we are living in Rochester, MN? How did this even happen? 😉
This last summer is a blur, as we welcomed Magnolia Jane, and 2 weeks later moved 1000 miles away from our home state of Montana ❤️ Lots of heavy emotion as we left our beautiful familiarity of those we love and hold so dear, in efforts to be in obedience to the Lord. Many moments where the devil has done more than threaten to steal our joy and instill fear in us…we are constantly reminding ourselves, that we are children of God..constantly seeking Him…constantly being wrapped in His grace. The Lord has brought us here and blessed it, amidst the challenges that moving brings, God has been faithful. He continues to keep us and guide us…holding us. His presence is apparent..hallelujah ❤️
So…Rochester…it’s like this small city, but it’s still a city..and it seems to be growing, with first class medical care, and yet totally surrounded by farmland…mainly corn and soybeans from what I can tell. As a farm girl, this is actually very comforting..even though I haven’t seen wheat fields, the agriculture happening so close to the city is a little piece of ‘home’ I am grateful for. Traffic is nothing- everything really is 10 minutes or less away from everything. The one thing I was nervous about, actually was wearing this summer: the humidity!!! Amazing how sticky it can get! I’m imagining it could get quite bone chilling this winter…I guess we will see! The word around town is that they actually do take really good care of their roads when it does snow-I have to say, that will be nice. Also, the tornado test siren was also new to us-honestly, a little eerie. Probably the oddest thing we are having to get over is that fact that there really is a lack of Starbucks out here. This seems so shallow, but when you’re coming from Seattle Children’s Hospital, which happens to have 3 Starbucks within its walls alone, it’s quite the shocker! What they do have here is Caribou, and to be honest, I’m just not there yet…We usually make coffee at home, but for a treat, we really used to enjoy Starbucks…
In the few short months of being here, we have been able to establish all of Poppy’s care at Mayo, special ed preschool, and therapies!!! She is totally plugged in and thriving!! It’s just incredible how the Lord’s hand is all over everything!
Her specialists are good overall! Of course no one could replace our hospital ‘family’ at Seattle Children’s and our amazing pediatrician and therapy providers in Bozeman, and fabulous pharmacy in Great Falls, but she really does have some excellent providers here as well!! Totally God’s grace that we were able to get everything established so quickly, and have such great access to medical care has been such a blessing already!
To say we’ve been busy would be an understatement!! In addition to establishing everything that comes with moving with a family…Poppy’s had probably 4 or more different viruses, a seizure that earned her an ambulance ride and a night in the PICU, at least 20 pokes, some medication changes, a few echos, a few x-rays, an MRI to rule out a shunt malfunction…oh and she’s currently fighting the Norovirus…😬
It’s always that challenge of trying to find balance of embracing life and opportunities for meaningful experiences and germ exposure. The life of a kid on immune suppressants! 😉 Being exposed to things isn’t necessarily a ‘good’ thing for her like we might say for a healthy kid..you know, build up antibodies…get it out of the way while they’re young thought…because when you’re on immune suppressants, your body doesn’t necessarily ‘remember’ and build antibodies against the illnesses that you’ve had- it can but it’s not a guarantee like it is for people not taking immune suppressants… you’re pretty much always susceptible to catching things again and even worse. She really is a trooper- even when it seems she has no reason to smile…
At the end of the day, we do our best and try to remember to trust the Lord. After all, it’s all in His hands.
I think it’s safe to say I’m the few months we’ve been here, we’ve gotten a decent taste of the place, and it really has been great care! What a relief! Thank you Jesus!!
Probably the hardest team to switch is the transplant team, as when you switch teams, you also switch protocols. Seattle’s protocol, surprisingly is much more cautious/invasive, and they like using certain anti-rejection medication combinations, and do cath and biopsies much more frequently (annually), and monthly lab work checking quite a few things.
Here at Mayo, their protocol is less invasive, they only do caths and biopsies every couple of years unless concern arises, and labs every 6 weeks checking a fraction of what we are used to checking. They also use a different combination of anti- rejection meds. In fact, we just gave our last dose of Cyclosporine last night…an anti-rejection med we’ve given at least twice a day since being discharged from the hospital initially over 3 years ago. She has now transitioned to Sirolimus instead. It’s still a nasty hazardous medication with a ton of potentially rough side-effects, mainly kidney, liver damage, and high cholesterol, but has been shown to stop coronary artery disease (CAD) dead in it’s tracks, and at times even improve it. Poppy’s coronaries have always looked great, but CAD is the most common form of graft failure, leading to needing a new heart, and can develop at any time, but so far so good! Dosing is once a day, which is kind of nice, the draw back so far is that it has to be refrigerated. Cyclosporine has it’s own nasty side effects, such as damage to kidneys, gum overgrowth and hair growth, among many others. Maybe Poppy will get the rest of her teeth finally now that she’s off of it?! 😉
Both places have plenty of great research to back up their choices/protocols…but it really has been the hardest switch even though we have a great team here as well. The new team has been gracious with our many questions and each day I am so very grateful for the education we received from the team at Seattle Children’s- we feel like we are able to have meaningful conversations about Poppy’s care, with the care and knowledge they have taught us over the years. It’s priceless….and unforgettable. Getting used to the new ‘normal’ is never super easy or painless, but a learning experience nonetheless….you could say we are learning and growing in more ways than one! 😉 It’s good 😊
Poppy has been loving preschool and making amazing strides in therapy!! I was super nervous about preschool, as last year, she was able to be in a classroom of a dear friend of ours whom we love and trust whole heartedly. Being new to the area, and all of the things that come with a medically fragile child with an IEP/special education services, it was a huge leap of faith to pursue special ed preschool, but I’m so glad we did. Her attendance has by no means been perfect, due to illness, but when she’s there, she LOVES it!! She is thankfully in a super small class and has been blessed with another amazing teacher and aides who support her learning and interacting with peers so thoughtfully. What an amazing blessing!! Hallelujah!! She is able to have all of her therapies (PT, OT, speech) also come into the classroom and work on her goals with and around her peers, which is so valuable!! It is so fun to watch her interacting with others ❤️ Lots of happy tears around here…
Probably the biggest, most exciting news is that Poppy is starting to walk using a walker!!!! She requires full supervision and some help, but she is really doing it!!! She knows she’s doing it and it’s sooo apparent how proud she is of herself!! She’s been pulling herself up to stand on our ottoman and her crib!! She is loving being able to be up with everyone! As we start incorporating these transitions and using the walker for mobility at home, instead of us carrying her and letting her crawl all the time, I know she will continue to improve!!! This is literally something we’ve been praying for as long as I can remember. To even be able to experience this and share it seems like a dream 😅Hallelujah!!!! It’s all You Lord!!!
I decided to try homeschooling this year with Crosby….he missed the kindergarten cut-off and I’ve always had it on my heart to try. We were never home enough to give it a try in Montana, as we spent a lot of time in the car. Since being here, we’ve actually been placed in a huge homeschool population with TONS of amazing resources, co-ops, and things to do with others! I decided to give it a try this year and see how it goes. So far it has been such a special time with him. I’m getting to know things about him that I otherwise wouldn’t have really gotten to experience, as his contagious curiosity and creativity really gets to guide our study. He loves learning the Bible and writing and illustrating his very own books, mainly about the Titanic right now 😉I’m totally cherishing this time with him ❤️ what a gift… He is such an amazing helper to me in so many ways. He is so gracious and loves his sisters so sweetly. He tags along to all of Poppy’s appointments, with patience and compassion for the most part. It’s so fun watching him grow and learn and discover life….it’s such an incredible gift being a parent…he is constantly keeping us on our toes and challenging us to grow as well!! Oh and we figured since we’re in Minnesota, we better sign him up for hockey! When in Minnesota, right? 😉 He’s doing great and seems to be having a blast!! And he turned 5!!!!! I can’t even believe it!!!
Magnolia is a sweetheart 😍 She is 5 months old, and already pushing 9mo clothing! She is super happy and content. She loves to ‘visit’ and smile. She tolerates tummy time and she eats and sleeps very well. Praise the Lord!!! She is such a sweet addition to our family 😊 She was born with a small ASD (atrial-septal defect) a very common CHD (congenital heart defect) that we just had checked again, and by the grace of God, it’s completely closed up! No need for a cardiologist in this girl’s future!!! Thank you Jesus!!
It’s such a crazy adventure..Divine really…I never would have dreamed this would be our life..moving on short notice 1000 miles away, with a newborn, transferring complex medical care, leaving our home state..our family, dear friends and providers..adventuring with the Lord is full of surprises and challenges and growth..a never ending seeking God and His will for our lives…so hard and vulnerable, and yet so freeing and exciting. Hallelujah!!!
We are unexplainably humbled and grateful for the gift of LIFE!! Grateful for the gift of eternal life through Jesus, for this adventure-filled life we are living with the Lord, for our family, Poppy’s donor family, quality time together, friends, medical/ therapy/ pharmecutical providers, for the things we take for granted every day..a warm house, food to eat, a car that drives….all of it…thank you Jesus!! Thank you also, to those who continue to pray for us. We can definitely feel it. ❤️ Though it’s hard being so far away from family and dear friends, the Lord has surrounded us with some amazing people and an abundance of His grace. God is good!! 🙏🏻❤️