Today, Poppy is 4!!!!So many times unsure if we’d get to see this day…thank You Jesus for this joyous gift of today and the precious gift of time with our girl!!! 🙏🏻 So many emotions… overwhelming…
February/Heart Month..the month we headed out to Seattle to prepare for Poppy’s birth and began the unknown journey ahead, becomes harder and harder emotionally with each passing year. It involves more and more remembrance of the hard things..the beast of CHD and what it’s robbed of so many…so many young lives gone much too soon..and at the same time, I recall and cling to…beyond overwhelmed by the hand of God so apparently, blatantly over it ALL from the very beginning..through it all..even when it was so hard and abundantly blessed…Even now when it’s still hard and ..His hand..His Divine orchestration that continues to show up and carry us through this amazing, challenging, incredibly humbling and miraculous journey is His perfect grace that reminds us of the gift of today…the precious gift of time with our girl.
By the grace of God, she has come so far in the last year, it is truly remarkable. Hallelujah!! She easily crawls around the room, pulling herself up to stand on furniture!!! She walks with assistance (walker or furniture, or hand holding), and crawls up the stairs!! She can string large beads onto a string! She loves touch and feel books! She even tolerates scribbling every now and then!! She can scoop most of her food onto her spoon and give herself a bite! She eats ALL of her calories by mouth, and continues to improve oral fluid intake, even though all of her meds and most of her fluids are still given by G-tube. She uses basic signs very well, and is now starting to use picture communication to make choices! She LOVES to be included with whatever is going on around her, and still delights in music, dancing, swimming, Signing Time, and lights! 🙂
Though she did not tolerate her Keppra wean (only got half way off and started having seizures), and is now back on her old dose and completely off the replacement med (Vimpat), her blood work continues to hold steady since her Aplastic Anemia scare in December-praise God!! Praying her blood work will remain stable enough to get her back on her other anti-rejection med, Azathioprine, as it would be nice to get her off the Prednisone, and have her back on 2 anti-rejection medications. We will check in on her growth next week with Endocrine, as well as Dermatology, both a part of transplant protocol. Mayo does not do annual cath/biopsies like Seattle. Mayo’s protocol is for every other year, unless trouble presents itself, so there are no plans for that this year. It’s somewhat of a struggle for me, as I love to know all that I can about what’s going on with her, even though there are risks involved. If you read much about rejection of solid organs, you will understand my comfort in having an annual biopsy. However, the positive side of skipping it this year is that it’s an overall less invasive approach, and she’s doing well, so she will avoid the risks associated with cath/biopsy procedures, and that’s always good!
Things have been super busy even being homebound! It has been such a tremendous blessing to have homebound therapies for this season! It’s been an incredible experience, one I am hoping to do again next cold and flu season. I’m guessing once Poppy is back on the Azathioprine and her blood work remains stable, they will likely transition her therapies back to the clinic.
We are humbled, blown away, and overjoyed that we’ve gotten to experience 4 years of miraculous..watching her grow and develop into the sweet, feisty, joyful, brave and courageous fighter that she is! Thank you Lord!!! What an amazingly sweet blessing parenthood really is…we’re doing our very best to soak it all in…just trying so hard to fully cherish our precious children and this gift of time together. Thank you all so much for keeping our family in your prayers. We so cherish your fervent prayers for our family. Montana and Seattle, we whole-heartedly miss you so very much. Minnesota, thank you for being so good to us, and for acting on the Holy Spirit’s nudging as you lovingly welcome our family with open arms. God is so good.