In November, Poppy caught us all off guard when she suffered a 13 minute long seizure. It came out of nowhere and was completely out of context from what we’ve come to expect from her seizures. Typically, she’s at higher risk of having a seizure when she’s behind on sleep and fighting some kind of illness. Her seizures happen around sleep, and involve some sort of facial twitching and snoring/gasping breathing, lower oxygen saturations that set off her pulse oximeter, limp limbs and body, and vomiting towards the end. Only two times have I had to use her rescue med, and this was one of them.
We had just gotten home from a long day of therapies. She had had a fabulous day, was actually clear from any signs of illness. I had set her up to play and ran to help Crosby with something for a brief moment. I come back after a couple of minutes to check on her, and she’s lying still on the floor, unresponsive to any verbal contact. I rush over to check her out. Her eyes and head were completely stuck to the right, unable to track me or make any effort to straighten her head. I picked her up to affirm the limpness that comes with her seizures and immediately lay her down and start recording and timing. Anything lasting over 4 minutes, and I have to use her rescue medication and call the ambulance. After 4 minutes, I call Brad and let him know I need to use the rescue med and need him to come home. He’s literally home in a flash and calls the ambulance. The ambulance arrives a few minutes later. After 13 minutes, she is able to break out of it and is super groggy and nauseous acting. We ended up spending the night at the hospital for observation. We took the rest of that week off of her therapies in order for her to be able to rest, and it was so good….for everyone. Her medications were increased and we’ve had no seizures since. It was so out of the ordinary for Poppy..and honestly has enhanced our awareness for the future. We were scheduled to see her Neurologist Dr. Kollros to discuss things when he was in Missoula in December, but the roads were just too bad to justify the trip, so we will check in with him when he is back in Missoula in March. Thankfully, she has been seizure free since..Hallelujah!!
Before Christmas, Poppy had a few followups in Seattle. The roads really weren’t bad until Snoqualmie Pass, but we made it over and back safely, despite multiple pass closures. Poppy saw Ophthalmology, Transplant Cardiology, and Neurosurgery, and her appointments could not have gone better!!! Hallelujah!!
Because Poppy has Hydrocephalus, her Ophthalmologist checks her optic nerve every six months, as any issues with her shunts have the potential to swell her optic nerve and cause blindness. She also checks her vision, as she is a growing girl and wants to be sure her glasses prescription is appropriate. Everything looked really very good, her Ophthalmologist even mentioning that she’s becoming quite the little girl 🙂 We couldn’t agree more.
Transplant Cardiology was delighted to see her and also very pleased with her labs, echo, and overall appearance!! They really are like family, and very much share in our joy to see her progress with signing, interacting, and new army crawl she’s been doing to get herself around!! 🙂 Her next follow up will be Missoula where she will meet her ‘new’ cardiologist, Dr. Sticka in February. Dr. Sticka has stepped in to fill Dr. Hardy’s shoes as western Montana’s pediatric cardiologist, as Dr. Hardy has retired. There are many emotions that came with Dr. Hardy’s announcement of his retirement..sadness that we will no longer get to interact with someone who means so much to us, and has been a listening ear and great support through this incredible walk. At the same time, we are so happy for him that he now has a little more time for himself. He told me at our last appointment, that he had been on call for the last 25 years..24/7, and I know he did so graciously, always with a smile on his face..I mean, the man is one in a million…mention his name to anyone involved in cardiology from Seattle to Montana, and a smile immediately comes to their face…he has truly set an outstanding precedent for pediatric cardiology in our region. Dr. Sticka has some pretty big shoes to fill, but Dr. Hardy has expressed his full confidence in Dr. Sticka, as has our Transplant Team in Seattle. We are very excited to meet him! Poppy will have her annual cath and biopsy to monitor for rejection Seattle in April.
We also wandered up to the CICU to say hi, and as always, it was one of the highlights of the trip. The doctors and nurses there are honestly our ‘family’ and it’s always such a delight to see them, catch up, and watch them love on Poppy and Crosby. ❤ They will always hold such a special, untouchable place in our hearts..they witnessed miracles right along side of us..they fought for our daughter with us..they know where she’s been, and for them to get to see where she’s going and share in our joys and her victories is truly unexplainably special and so incredibly meaningful to us…it really is beyond words…
Poppy’s MRI looked unchanged and stable since the last one, and Neurosurgery said that as long as we had the understanding that if Poppy starts acting off that we would immediately give a call, they gave us a follow up date of…..ready for this?! One year!!!!! Not one of her followups in any of her specialties have been that far out….EVER!!! Hallelujah!! We will take it!!!! The best possible news!! I am still in awe…
We made it home in time to celebrate a quiet Christmas and enjoy some much needed family time. With Poppy’s intensive therapy schedules and Brad’s work demands, the down time was truly a gift. The kids have very much enjoyed the snow we’ve gotten. Crosby has made it his ‘job’ to plow the backyard with the toy snowplow he got for Christmas 😉 They’ve also enjoyed a lot of sledding and time with family..these are how the days were always meant to be spent. ❤
The past few months have been really pretty amazing overall. Poppy’s development continues to blossom and miraculously, she really hasn’t had the cold and flu season most have had-praise God!! She continues to become stronger in therapies and as I mentioned, is now army crawling!!! She feels so big and is totally loving her new found mobility!! God is so good!! She’s been fully enjoying nursery time with her peers, and the interaction has been so good for her! She really is becoming quite the little girl. ❤
Crosby is becoming quite the kid as well. His big heart and giving spirit is such a delight to experience. He’s also had a sudden interest in getting ready for kindergarten (even though he has another full year of preschool ahead of him) has gotten him excited about fine motor activities!! A miracle in itself! 😉 He is so gross motor inclined, that I really wasn’t sure how school oriented activities would go…but it has been so fun to see him getting excited about writing his name and practicing his number and letters!! He has taught me so much (and continues to) about how kids will do things, when they are ready. The conversations we’ve been having are truly priceless..I just love how the Lord has his heart. ❤
It is so incredible to see God’s hand at work. It has been many tears of joy and gratitude on my end..that’s for sure!! It is beyond heart warming, goosebumps, and joyous…words just don’t hold a candle to all of my many emotions I’ve felt these past few months.
We are so thankful for all of you who continue to hold us in your prayers. We are so grateful ❤ We have some friends who could use your prayers. Christian (2.5) who was Poppy’s first roommate at SCH, is still inpatient awaiting his new heart. Please pray for his health and family as they are trying to do life with one of their four kids in the hospital.
Also, Poppy’s friend Kamryn (3.5), who was also transplanted as a babe, is now having heart and kidney problems due to the heart attack she suffered about a year ago. Please pray for her health and peace for her family as they have endured many trials and suffering this past year.