This year is flying by so incredibly fast!! Logging in today to finally post an update, I see now how long it has been..thank you for bearing with me!!
Summer: We got to go home to MT!!!! It was a glorious time spent mostly with family and a few close friends. The air!! Oh how I wish I could bottle it up and bring it back to MN with me and just circulate it through the house!!!! ❤️ Crossing the border into Wyoming from South Dakota, it’s the air…the farm smelling, dry, crisp, big sky air brought tear-filled grins of growing up and summer nights to our minds…so good…we couldn’t get home fast enough ❤ At night, we would sit up in it, drinking it in while soaking in the sunsets we’ve been missing…the ones we often took for granted growing up…We made our favorite pit-stops and even got to spend some sweet time in Glacier National Park, before it started burning. Such sweet memories..God is so good…
In August, one of Poppy’s shunts failed. After 3 days of vomiting, CTs and shunt series showing normal ventricle size, it was brought to our attention that sometimes when kids have multiple shunt revisions, that it’s possible for the ventricles to become stiff, and not show a shunt malfunction. Between Poppy’s clinical appearance after a couple days in the hospital, non-stop vomiting, bursts of excruciating pain, excessive sleeping and lethargy, as well as ruling out all other possibilities, Dr. Daniels felt we had no other choice but to put in an IntraCranial Pressure monitor (ICP) to check her pressures. Normal pressures for kids is 10-15. Poppy’s pressures ranged from 55-70. Within a couple of hours, we found ourselves sending her away to the OR for the potential of both shunts getting replaced. We were somewhat nervous about handing her over for her first OR experience at Mayo, but God’s grace was overwhelming and peaceful. Our church family surrounded us with love and prayerful support. Poppy’s care team was excellent. Dr. Daniels had been outstanding the few times we had seen him in Clinic, and even after being called back to the hospital to take Poppy into emergency surgery, he proved was once again to be exactly as he was in Clinic…outstanding. Praise God for His Divine orchestration in our lives!! 🙏🏻❤️
A couple of hours later, Poppy was wheeled back to her room. She was still coming out of anesthesia but it was apparent she was feeling so much better!! Praise the Lord for His goodness and abundant grace ❤️
Thanksgiving and Christmas were wonderful!! We had Brad’s family in December and my family in January!! This winter was a sweet time with family…the time flew by all too fast- now summer in Montana can’t come soon enough 😉
Overall, Poppy is doing really well. It is so hard to believe she will be 5 on Thursday!!! 😳 We homeschool with Classical Conversations (Christian, oratory, memorization, most everything is to song) and are a part of a homeschool co-op we go to once a week. We have a Homebound teacher that comes 1x/month to check in and her Vision teacher comes a little less often, but is always a wealth of information. They have both been great resources for modifying and presenting things in a manner that she can best interact with and enjoy learning from.
She has Music Therapy, Occupational and Physical therapy 1x/week, Speech Therapy 2x/week, and she just finished up adaptive swimming lessons and loved every second of them!! She has started using an iPad app called Snap+ Core First for communication, as she is still non-verbal. She has some sounds and will occasionally spout out momma and dadda. She understands 99% of what goes on, and works very hard at all of her therapies. She uses a walker for walking, but tires easily. She requires full support when walking without her walker and in many social situations, because of tiring or the stroller not being appropriate for the setting, she ends up being carried….she is getting to the point of being fairly heavy when you take into account her height and low tone. We have been using a double stroller for she and Magnolia, but have just taken the plunge for a wheelchair. We have intentionally put off getting her a wheelchair for a few years now. We want to support her waking efforts in every way possible….and we still do very much. She has come so far!! Praise the Lord!! It was such a tough decision to make, but after visiting with the pediatric physical therapists in our lives and seeing her face light up when she tested one out…to see her delighted to be able to get where she wanted to go when she wanted to go, really calmed my heart. The whole thought of a wheelchair seems at first, so defeating and started to make me think we had let her down in some way, but I have come to be relieved and at peace over it…I’m honestly so excited for her because she is so excited!!! We and her team are determined to work on walking all the more. She will get it in the next few weeks and it’s the Lord’s grace that I can say I am so excited for her and the independence that awaits our darling girl ❤️
Poppy will be 5 years post Transplant in May!! Wow…just..wow…I look back and wonder, how did we do that? Driving all the time..chronic vomiting and diarrhea..packing meals for the whole day in town, or for trips to Seattle for an unknown period of time…placing an NG tube literally an.y.where..life flights and snowy mountain passes in the middle of the night..hotels and enough meds and feeds and tube supplies just in case…the comforts of the Ronald McDonald House and forever love for a hospital we still call our second home…and then I remember…we can’t take the credit because it wasn’t us…it was totally, obviously the LORD and His abundant, overwhelming, tender loving grace. No human could do what we did on ones own…literally God’s grace. Tears to my eyes to think on it…many times certain songs trigger stark memories of those times. Not always sad tears..but heavy and joyous tears…tears of gratitude and lowliness…tears that remind me of those who have gone home to be with the Lord very young..tears for their families who have walked those halls and slept countless nights at the bedside and those who continue to do life on their knees in humble desperation to the Lord….the friendships, the connections, the hope that lives even beyond the heaviest grief…thank you Jesus 🙏🏻
Poppy is on cyclosporine, prednisone, keppra, lyrica, magonate, Bactrim, and we just tried adding back azathioprine in hopes of coming off of the prednisone. Ever since her bout of medication induced aplastic anemia (Dec.2016) she has been unable to tolerate a second anti-rejection Med, thus the need for the prednisone. Labs are tomorrow, so praying her white count is hanging in there, so we can get her safely off of the prednisone!
Over the past couple of weeks, we are seeing some symptoms of a possible shunt failure in her future…she’s been dealing with painful outbursts, tiredness, spacing out, occasional vomiting, and yesterday had a 25minute epileptic event that didn’t look like her typical seizure (twitching in the face) but otherwise seemed so. The Neurosurgeon we spoke with said sometimes when a shunt is starting to fail, it can ‘sputter’ a bit, and that’s what we could be seeing. Her last shunt failure started similarly..so we are praying for answers and most of all relief for her..guidance and discernment on how to help her.
She will be having her first cath here at Mayo in early April. They will be looking at her coronary arteries. Hallelujah!!! We have been waiting for this!! We are not excited for her to be in the OR by any means, but to know how her heart is really doing will be such a comfort. Probably the biggest/hardest/most challenging difference between Seattle and Mayo is the Transplant protocol. Seattle draws certain labs more frequently, and they do annual caths with biopsy and every other year they either also look at the coronaries or a dobutamine stress echo. Mayo does not do annual caths. They only biopsy if the echo shows significant change. They look at coronaries every other year, maybe and so dobutamine stress echos occasionally. I struggled with this..at times I still struggle with this. We have always been more about prevention rather than treatment…I feel that if one waits until the echo is poor, in order to biopsy, it’s really too late to do much prevention…😬 so we have spent much time in prayer and have come to the conclusion that no doubt God has brought us here, it’s always been in His hands and will always continue to be all in His hands…my trust shouldn’t solely lie in human hands ever, my trust is to be in Him alone..and so we pray all the more for hearts that fully trust Him. The Lord has provided us an amazing Transplant NP who is beyond gracious in helping us understand their protocols and meet us half way on things we care most about. I am so thankful for her!! Poppy loves her..we love Sonja..she’s patient and gracious and so kind. With all of that being said, we would love your prayers for a safe and successful cath. The cath doctors here don’t know her at all, and so that is a source of worry at times. Also, that her coronaries would be clear and free from coronary artery disease. For cardiac transplant patients, coronary artery disease isn’t really and ‘if’ they get it, but ‘when.’ It’s the leading cause for needing a another heart. Poppy’s haven’t been looked at in a couple years…we would love your prayers 🙏🏻❤️
Crosby is 6!! He is in Kindergarten and blows me away every day with his sweet servant’s heart. If we could sit around the table and read the Bible all day long, then he would be thrilled!! I love his Holy Spirit driven desire for God’s Word!! We all benefit so much from it!! ❤️ He loves being active with hockey, and anything on wheels (bike, scooter, roller blades, skateboard…) He is constantly surprising us with his curiosity and interests! He loves his sisters and he’s so good at showing them. He knows the majority of Poppy’s cares and accompanies us to all of her appointments. At this point, he’s wanting to be a pediatric physical therapist, because he’s ‘really good at setting up obstacle courses and he’s really good at making it fun and challenging..and he’s really good at sanitizing’ 😉 He has job offers already! Lol! At the local hockey shop and at the pediatric rehab clinic as a PT aide 😂 We certainly have our moments, as we are all learning, but most days, I love homeschooling and getting to visit and experience my sweet babes throughout the day. It truly is precious time. I pray all day, every day that I see and feel the weight of such a gift 🙏🏻❤️
Magnolia is FULL of personality. She is 20 months now and just…wow. She is starting to talk in short sentences…she’s fearless, smug/slow to warm up, super sweet and cuddly, copies everything, go with the flow, loves to tease, and definitely challenges all of us for the better.
I am just in awe of how the Lord has provided His church and people around us who love and care for us…who pray for us, who have befriended us, the doctors, nurses, and therapists who have taken on Poppy’s care…nothing has been overlooked..the Lord’s provision is so overwhelming abundant. Though we miss family, friends, and care teams in Montana and our care teams at Seattle Children’s desperately..we are beyond words thankful for being within 10 minutes of anything medical Poppy will ever need and being a part of a community that is so special needs friendly. It is still bittersweet being here but at the same time, such an incredible blessing to see how the Lord provides in every way.