Enjoy the family time
These past few weeks I’ve been grateful for the family time we have in this in between season…a few weeks where Andrew and I both are in between work and leave and have time off. I’m SO incredibly grateful Andrew is off and for the help from family. Andrew and Jeds bonding time has been extra special and so grateful to be able to mostly focus on Rory but still get time with my sweet boy.
Even if I feel like the majority of my time is spent feeding or sometimes soothing a crying baby there are all the moments in the day in between , some full of melt downs and setting boundaries for a toddler..but many much sweeter that feel like glimpses of heaven. Time outside , porch swinging, cooking, and playing… jeep rides and ice cream time. A slower pace , enjoying the day and family.…and the fall weather has been the cherry on top!
The days feel long yet short… and time is slipping by.
As for health updates….Rory has made good weight gain! About an ounce a day this past week! Praying that continues..still no bottle feedings - Hoping the swallow study we are waiting on can help with figuring that out. Her white blood cells are still down at critically low so praying for those to improve so we can start her antivirals again. She’s been off them for almost two weeks now-hoping once she’s back on them they are still effective and no harm done from having to start , stop, start.
They also think she may have reflux/colic which makes for some long days…hate seeing her in discomfort but she has been sleeping a lot better at night between feedings so grateful for that.
The next two weeks are pretty packed with doctor appointments. Our weekly Pediatrician,PT,OT and Speech appointments plus a few others we have been waiting on…ENT, optimalogy, cardiology, ID and neurology.
Specific prayers…for the white blood counts to go up, for less crying from stomach/gas pain, for the swallow study we’ve been trying to get to be expedited, for good outcomes with our first neurology appointment (still praying for miracles over her little brain-that it would develop and grow in ways that amaze the doctors…giving her opportunity for optimal function) for her spleen and liver to continue to heal and for her vision. Rory passed her vision test in the hospital from an eye perspective but we aren’t sure about the part of her brain that processes images/vision. She’s showing some signs of CVI ( cortical visual impairment) from my observation she tends to only respond visually to sounds. It could be still delayed development (what mamas praying for) but not sure. Time and doctors will tell-until then praying for the best.
We continue to pray and hope and plead for health and little and big miracles. And to enjoy the little moments, fall time, sunshine, a sweet toddler, baby snuggles, coffee, cider and porch rocking and so much more.
Thank you for continuing to pray with us. We believe Rory is here with us today because of prayer and Gods grace and his bigger than we understand plan. So we continue to pray and hope and trust as best we can.
