It was a long week, but it honestly couldn’t have gone better 😊 The Lord provided abundantly in every way imaginable!! Not only were gas prices in our favor, we had clear roads each way, and Poppy’s appointments went incredibly well!! Hallelujah!!
Her upper GI study was normal! As good of news as this is, initially I found myself slightly disappointed, only because at that point, there was no explanation for her feeding intolerance. This normal study really is a blessing, because as the doctor explained, an abnormal study could have meant more surgery or a more serious issue to work through. Definitely feeling blessed that this wasn’t the case.
I’ll be honest, I was nervous with anticipation. Would they take the time to read her history? Would they actually have a decent explanation for what is going on? Would they share our concern? Our past interactions with GI have been really challenging, and stressful. However, the Lord put in our path an amazing GI doc. It was clear he had done his homework on her case and was very easy to communicate with!! He shared our concern!! Thank you Jesus!! After reviewing her history and the last months, he is very confident that her issues go back to October, when she struggled with a terrible GI bug that was aggravated by antibiotics to treat an ear infection. She had lost 2 lbs and could not keep her bed, herself, her clothes dry for really any length of time. I was literally doing 5 loads of sheets/day plus clothes- her tummy was an absolute mess. During this time, we had even doubled up on her probiotic, which at the time, didn’t seem to even phase her. He believes that her gut is still healing from that. He says some people do ok and heal more quickly, but others, especially those with slow guts to begin with, that when the tummy is stripped of everything good, that even the nerves are affected, slowing things down, relating to digestion, stomach emptying etc. He believes that once her gut is healed, that she will bolus feed again!! We were delighted to hear that he believes she will bolus feed again!! I mean this is huge!! We are praying his explanation is the case, and that with a little more time, we will see her feeling better!! He doubled her probiotic, Culturelle as well as her Prevacid and took her off Zantac. Since she’s been on Zantac since the day she was born, he feels she’s built up such a tolerance that even a dose increase may not even help. We will keep her on continuous feeds for another month or two and then try bolusing again. For now she is tolerating 20cal EleCare Jr., even at night!! In fact, during our whole trip, she only threw up once!! We are hopeful! Thank you Jesus for placing this doctor in our lives!! We will stay the course and see what the next few months hold. We will still be looking into a blenderized diet- it just seems like it would be the best for her, so when she’s ready, we will try! He believes she will likely be ready for the Intensive Feeding Program that she is signed up for in July!! Praying that’s the case!!
As far as her heart goes, she’s looking amazing!! Her labs, echo, and EKG all looked great! Thank you Lord!! That kind of news never gets old 😊 Her next follow-up will be for her annual cath with biopsy in April!! It’s so hard to believe she has nearly 2 years old (March 8) and 2 years post transplant (May)!! How did that happen?! She is getting so big and such a sweet little girl with a definite personality 😊
Her eyes were great! She won’t be checked again until July when they’ll do a dilated exam! They monitor her eyes closely because of the 2 shunts in her head. Sometimes pressure can build on the optic nerve and that has the potential to impair vision if not caught in time. She’s still sporting the same glasses!!
The most exciting news of all came on the last day of appointments. Neurodevelopmental. We went in to this appointment a little nervous. At our last Neurodevelopmental appointment, things like Poppy’s talking and walking and cerebral palsy were discussed. At the last appointment we were told, judging by the severity of her brain injury, that it could be quite likely that Poppy may not talk and/or may not walk, and that Cerebral Palsy could become a diagnosis for her in the near future. In no way was it meant to put her or our amazing God in a box, it was really just to prepare us for the possibility of severe disability and to be sure we are doing all we can for her.
As I shared, we were excited to show off her new skills, but still somewhat anxious as to what would come…. SOoo Dr. Myers was impressed!! She was happy to see that while Poppy’s development is slow, it is in the order of typical kids, not asymmetrical. Thankfully Poppy had napped really well before and was super happy and interactive!! She was outstanding!! The way she babbled and moved her body was very encouraging to Dr. Myers. She said that from what she sees Poppy doing now, and the progress that she’s made, that she would expect her to someday talk and walk!!!! Woohoo!!! Hallelujah!! No Cerebral Palsy at this time!! She said the ‘sky is the limit!!’ Thank you Lord!!!!! Tears of joy and thanksgiving!! Just Soo amazing and humbling, and joyous beyond words!!
Thank you all SOoo much for holding our family closely in your prayers. It truly means so much to us. We can definitely feel it 😊 God just continues to carry us through this incredible journey we never dreamed we would be on. He just continues to reveal his love and faithfulness through the work He is doing through Poppy and in our lives. We definitely have our challenges…the day to day stressors are ever present. But the days we surrender it all to God are the most peaceful days- it is by His grace alone we are even functioning. He does not forsake us. He loves us, guides and protects us. Thank you Jesus for your Sovereign will. Hallelujah!!