We are currently en-route to Seattle for Poppy’s follow-up appointments. Most of them are routine, with the exception of her GI appointments. Today, she will have an Upper GI study done in hopes of helping to answer the reason for her constant vomiting pretty much since her g-tube procedure. She will also see a GI doctor and we are all wearily praying he/she can shed some light on all of this. In the past couple weeks, Poppy has had bouts of retching and vomiting old blood and yesterday, it actually had a pink tinge. Her diapers have also recently shown traces of old blood. Some of this old blood coming up can happen and be normal for any kid with a feeding tube, however the increase and the change to more of a pink tinged color is concerning to me. I’ve seen this girl vomit thousands of times (literally) and plenty of times old blood, but pink blood is unnerving because it means it’s a little more fresh/active. We are fervently praying for answers. Please Lord, let there be a reason and please Lord, let there be a safe solution!!!
It has been so hard to watch her struggle with her tummy. We have tried some purée through her gtube and she seems to tolerate it a little better, so we are hoping to team up with a GI doc who will help us advocate for a blenderized diet. A blenderized diet is basically as it sounds. Real food is blended to a consistency that will move through her gtube. The hardest most tedious part of this is counting calories and volume. Ensuring she gets her hydration as well as caloric and nutritional needs met is the challenge. I am a fan of this on every front, but realize the time commitment on my end and pray for the wherewithal and endurance to take this on, should this be the route best suited for Poppy.
Her interest in oral feeding has really been affected, and I can’t say as I blame her. The last thing I would want to do if I was throwing up all the time would be to put food in my mouth. And we try and we try and we try and try and some days are better than others, but please, for me, please never take a kid who eats and eats well for granted- oh it’s a gift. Crosby is that kid, always has been, and boy did we take it for granted at the time!! You just don’t know or realize until your eyes are opened to the world of sick kids who don’t eat. She does her very best with a smile on her face and that is a gift in itself. Pure joy absolutely radiates from her 99% of the time. Hallelujah!! That is God’s grace- that is the Holy Spirit alive in her. It’s humbling and a delight to watch her as God is constantly working on my own patience and endurance through her and her attitude. Ultimately, He has this all under control, I just need to constantly hand it over to Him.
In addition to her GI visits, she will also see Transplant Cardiology, Opthalmology, and Neurodevelopmental.
We are excited to report progress to her Neurodevelopmental doc!! She is doing more babbling, pushing her arms through her shirt sleeves, clapping on que, dancing to music, showing preference to certain toys, and really gaining some nice strength in her trunk, arms and legs!! She is actually liking to bear weight on her legs!!! She continues to roll around, sit and play, reach far and wide for toys, and work very hard in physical therapy, spending time in side sitting, up on all 4s, and supported standing. Her progress is slow but it is there!! She is doing amazing!! It has been so fun to watch her blossom. ❤️
I am so thankful to have our family together for this trip. Thank you Lord for providing time off for Brad, clear roads, and amazing gas prices!! What a tremendous blessing. You can keep us in your prayers though, last weekend Brad came down with Influenza B and we were all put on Tamiflu. Please pray that the rest of us are spared from this nasty crud. Thankfully, Brad seems to be on the mend, not having a fever for a couple days now, and Crosby and I seem fine. Poppy is fighting something, I’m fairly confident it’s not the flu judging by her symptoms, but praying she can feel better soon. The illness this season has really left our family missing our dear family and friends!! Praying we are DONE with this constant battle of communicable illness!!!
We would love your prayers over this time. We are really kind of a mess lol 😉 A nice reminder of our constant need for Jesus 😊 It’s obvious God’s hand is all over this trip as He always is. He is so good to us!! ❤️ May we glorify Him!!