Photos taken by Loni Judisch Fine Art
Photos taken by: Carlie Breen Photography
What a difference a couple of years makes…! This time of year is super emotional for us for many reasons..it’s like our bodies ‘know’ or ‘remember’ what life was like 2 years ago when Poppy was critical in the CICU, and even last year when was admitted over Easter for RSV. It’s like our ‘fight or flight’ automatically turns on…our nerves are shot…feeling like we’re operating on 1/4 brain power (and we are…just ask anyone around us…we are complete zombies), teary eyed, sentimental, emotional, overhelmed by all that’s happened…overhelmed by God’s grace, peace, and provision..the people and prayers He continues to surround us with..the gracious servant hearted people who just love on us.. It’s absolutely humbling. We look at our family and just feel God’s sovereignty and faithful goodness.
This Easter, we are in Seattle. Poppy had appointments Thursday, Friday, and Monday.
She saw audiology on Thursday. She is followed by audiology as part of ECMO protocol. Any kid who has been on ECMO is at risk for hearing loss, so it’s part of protocol that audiology follow them for a couple years. She’s been fighting an upper respiratory virus for a month or so and just finished up a round of antibiotics for a double ear infection. The audiologist wasn’t overly impressed by Poppy’s hearing test. Her left ear was normal but right ear really struggled. She said it’s very likely due to the fact that she’s been fighting a cold and just getting over an ear infection, but because of her history and mouth breathing etc, she referred Poppy to see ‘oto’/ ear, nose, and throat doctor for further investigation.
Friday, Poppy had her annual cardiac cath with biopsy scheduled to check for rejection and while she was still under anesthesia, she would have an MRI done of her head to better understand her brain injury and seizure origination in hopes to effectively treat her seizures. But, Poppy woke up with a 100.5 temp and the cardiac anesthesiologist, who knows her well, heard junk in her lungs and did not feel it was in Poppy’s best interest to be put under in her current state. Soo bummed but ultimately know it’s what is best and safest. And honestly, Poppy doesn’t have the reputation for ‘most common, best, most predicable outcome’ kid, and they all know it, and I don’t blame them a bit! I don’t trust her either. So while I’m bummed at the inconvenience of having to reschedule for another time, I have a peace about it and am honestly thankful she/we have such an amazing team that truly does what is best for her. He made it sound like if she improves over the weekend, no fever and clear lungs, that she’d be ready for her procedure on Monday.
Monday, Poppy is hopefully going in for an endoscopy/colonoscopy. Poppy has been seeing a new pediatric GI doc in Billings, Dr. Flass, and he has been such a blessing. He is the first doctor to actually order stool samples and a gastric emptying study in hopes of trying to figure out what is up with her gut?! She has been on a better probiotic, VSL #3 for the last 2 months, as well as a super high dose of prevacid and that’s helped but not enough. One of the stool samples he ran was her calprotectin, which is an inflammatory marker within the GI tract. A high number for a kid her age is 100, hers came back at 600. He decided she needed to be scoped, but just to be sure of the result, he repeated it. Her second result came back at 500. The need for a scope was confirmed!! The poor girls tummy is so sick 😞 Praying praying she is well enough to get scoped… So ready for some answers!! This feeding intolerance and diahrea issues are wearing on all of us…We are just so thankful to have a doc onboard who is as anxious as we are to find some relief for our girl.
Poppy also saw her neurologist, Dr. Kollros last week when he was in Missoula from Seattle Children’s. Poppy has had a few more seizure like episodes since her big one in January, and as a result, her antiseizure med, Keppra, has been increased to a high dose. So far it seems to be working. He explained that the MRI will provide valuable information when discerning what type and where the seizures are coming from and that will be helpful when trying to treat with the most effective antiseizure medication. Her cath/biopsy and MRI are rescheduled for May.
Despite the increase in seizure activity, Poppy is making some really nice improvements in her therapies!! She is now all about peek a boo and is waving again!! She is realizing cause and effect with her toys that do things if she presses the right button!! It’s pretty amazing!! She also just got her first set of braces that help support her ankles! She is really working hard on getting strong through her trunk and core. She is trying so hard to crawl by pretty much doing the crawl stroke- it is so cool!! She is even taking steps with support!! Soo exciting!! 😊 Hallelujah!!
We would love your prayer for healing…that she would be well enough to go under on Monday…or even better, that her gut would be healed and that she would eat and drink by mouth!! God can do anything!!
Happy Easter!! May we daily remember the joy of our salvation through Christ and what He has done on the cross for us all ❤️