Last week, Poppy had follow-up appointments in Seattle. She saw Neurosurgery, Ophthalmology, Transplant Cardiology, and Neurodevelopmental. Even though we had literally just been in Seattle for her heart cath and biopsy 10 days prior, these were all scheduled follow-ups that had been on the books for months, and appointments she really needed to be at. Let’s just say, since being home, we are still trying to recover! 😉 It feels so good to be back for a while!!
She had a haste MRI (really quick MRI of just her head), and Neurosurgery said her brain and shunts look fabulous!!! Praise the Lord!! They even feel comfortable enough with how she’s looking, that they don’t need to see her for 6 months!!! This is HUGE!!! Thank you Jesus!!
Her Ophthalmologist found her Esotropia and vision to be stable, so that was very encouraging! We went ahead and scheduled her eye muscle surgery for May 7, and I have to say, I’m so excited it’s on the books! Praying praying she is able to gain back some depth perception from it!!
The real thrill came with seeing Dr. Kemna in Transplant Cardiology clinic! She was very happy with how Poppy looked!! She said her echo and EKG looked good. She mentioned that she’s still in her right bundle branch block, but that she may just stay there and that could be that. Since the cath and biopsy came back perfect and she looks so good, she’s really not concerned about it at this time!! 🙂 Thank you Lord!!! And then it came….get ready….she gave us the OK to switch to meds just TWICE per day!!! That is: MEDS ARE DUE ONLY EVERY 12 HOURS!!!!!!!!!!!!!!!!!!!!!!! 🙂 🙂 🙂 🙂 🙂 🙂 🙂 This is like as good as it gets as far as a med schedule goes!!!!! She was hoping to wean her Verapamil (blood pressure med that is meant to be given every 8 hrs) before the big switch, but she’s finding that Poppy is still in need of some blood pressure support, so she ended up switching her from Verapamil to Enalapril (blood pressure med that is able to be given every 12 hrs.) So our girl is now on: Ora Plus (helps the Cyclosporine through her feeding tube), Cyclosporine (anti rejection), MMF (anti rejection), Enalapril (blood pressure), Magnesium (Cyclosporine wastes the body’s magnesium so anyone on it usually needs a mag supplement), Keppra (anti seizure), Ranitidine (basically Zantac for reflux), Bactrim (prophylactic antibiotic, given 3x/week, part of transplant protocol until she’s 1-yr post transplant which is May!) and Culturelle (lactobacillus/probiotic, her anti rejection meds and the mag are hard on her tummy.) It may seem like a lot, but this is a small fraction of the meds she came home on!!! Praising God for so faithfully carrying us through the really tough times!! Hallelujah!! This day has finally come!!! 🙂 Meds twice a day?! Piece of cake!! 😉
This was Poppy’s first time seeing Neurodevelopmental. A Neurodevelopmental doctor is a pediatrician who specializes in neurodevelopment! We’ve been anxiously awaiting this appointment since I scheduled it in December (yes, the schedule was booked 3 months out!) Brad and I had become more and more concerned with Poppy’s overall development, mainly physical and communicative development, and were really just wanting to be sure we are in fact, doing all we can for her. This appointment was a chance to meet a doctor who specializes in development and who will act as another set of eyes on Poppy to ensure we are meeting her needs. We got to meet with Dr. Myers, and I have to say, she seems to be a great fit for our family. We talked about what Poppy’s doing, as well as what her brain imaging looks like and head circumference (2nd percentile). What came next, was honestly, something that had crossed our minds….it hurt when we first became concerned, it hurt when we heard it from the doctor, and it still hurts, and I think it always will in some way…..it was rip your heart out, punched in the gut…hard things to hear about your sweet girl and what her future could potentially look like. Ugh…:( So to preface this, we found Dr. Myers to be all the while very hopeful and she by no means put Poppy in a box, so to speak….She said that the image of her brain does show substantial damage from the brain bleeds and stroke she suffered, and what that will mean for her down the road, is really hard to say. ” I can’t tell you if she’ll walk, I can’t tell you if she’ll talk…I can’t tell you ….., but what I can say, is that kids are amazing, Poppy is beautiful and perfect and the things you are already seeing with her are very encouraging, however, I do want you as a family, to prepare for a long road of severe disability. I will be here to provide all the support, and services that she or your family may need. I’m not going anywhere.’
She told us that we were allowed to be sad and mad and…..that all of this wasn’t exactly what you dreamed for your daughter and it’s ok to be sad. I think hearing that out loud from someone else is honestly, freeing. Yes, we are sad if the word sad could ever fully convey what we feel, this isn’t the life we intended for her…life never is how we dream it….but we find rest in our Lord- He knows what He’s doing. Poppy’s life is glorifying to God and isn’t that why we’re all here? To be glorifying to God! Our girl has seen so many wondrous miracles in her life, clearly she has a special purpose, just as we all do, through Christ.
We hurt for our babies just like any parent hurts for their children. Tears, heart ache…guttural sobs… are all a part of loving someone….and we are no stranger to love. God is love. God has carried us so closely to His heart, He has the most perfect plan for everyone, including Poppy. He is sovereign and never forsakes us. God can do anything. God will continue to show His loving faithfulness through all of this, no matter what comes, God will be glorified. God can comfort our broken hearts, God can make all things good, for those who love Him. We are NOT putting God in a box! We are NOT putting Poppy in a box! We are clinging to God and His boundless love for us. ❤
We do ask for prayer for our hurting hearts, that we would give all of our cares and worries to the Lord. He has ALL of this and can surely handle it!! Pray that we, in the way that we parent and care for our children, that we would see our kids as the gentle, tender little souls that they are, and not a list of diagnosis/experiences. These diagnosis, yes, help to make Poppy who she is, and Crosby, by experiencing all of this has indeed helped to make him who he is, but IT is not who they are. We would love prayers for Brad and I to be what they need, for it to be innate and honest, and real, and all the while showing them overwhelming love for who they are ❤
On a SUPER side note: POPPY CAN SIT UP (tripod) for 2 minutes UNASSISTED!!! Woohoo!! Hallelujah!! She is also saying ‘gaggagaga’ and is discovering if she fusses late at night, that it’s a great way to get our attention to play 🙂 LOVE it!! Thank you Jesus!!! See????!!!??!!! DON’T PUT GOD IN A BOX!!! 😉
On ANOTHER side: We have been praying fervently for God’s guidance and direction, and are excited for what the future holds. As you well know, Brad has been working on his Master’s in Special Ed, and will be finishing in June! So it’s with very excited hearts, that we will be moving to Three Forks this summer, BECAUSE Brad got a full time Special Ed and Art teaching position at the Three Forks School!!!! 🙂 And to the Conrad community, words cannot express how truly wonderful it has been to call this dear community home for this season. Your love and support means so much to us, and we feel tremendously blessed to have been a part of the community. Thank you so very much. We would love your prayers for the days ahead! ❤
And this is what meds every 12 hours looks like! (This is 24 hrs worth of meds) 🙂