Isabelle Bentley

Zzzzzz. So today was... frustrating. On Wednesday I got a phone call from her pediatrician that the brain scan we had done like 2 weeks ago came back with subtle results but that we'd have to talk to a neurosurgeon about what that meant. Today was that day. Scott took Izzie to the appointment. Basically, her brain bleed is still there and is not shrinking which is leading them to think it may be fluid . If it's fluid, it needs to be watched and MAY need to be drained using shunts . However the neurosurgeon wants her to have an MRI BEFORE her surgery which is exactly one week from today. We found this out around 4p today... a Friday. (WHen I google signs of having hydrocephalus (water in the brain) Izzie has NONE of them so I am hoping it's just a brain bleed that's taking its sweet time to resolve).  In order for babies to have MRIs they need to be under general anesthesia. Many questions we have but can't be answered until Monday. Some are: Should a 7lb 14...

We went to her neurology appointment and they were basically like "why is she here?"... They said she's doing great and the brain bleed will reabsorb and not cause her any issues. They said we will likely never see them again. LOL.  Then we went with grandma & grandpa Bentley to Jack's swim lesson!

Izzie had her 2nd neurology scan today. She still has a grade 2 brain bleed but again, that doesn't mean anything. It's not getting bigger. Grade 3 and 4 can do harm. Grades 1 and 2 are fine. The annoying part is there is nothing you can do to heal them or make them go away and they can take time to go away. Her next scan is in February. 

Jack & Izzie riding in the car together for the first time.  Izzie is the 2nd patient ever at the brand spanking new down syndrome clinic at UMass. It was their first day ever open. Wow. We found out she definitively does not have a clubbed foot. She just holds it weird. We need to stretch it out every day but d not need to cast it every week nor need braces. THANK GOD! And this is her at her 1st ever doctor appointment. She is back up to her birth weight. And her ear canals are big enough that the dr could see her eardrums. Lots of kids with down syndrome have hearing issues because their canals are too small. Her dr said she's very active - more active than most newborns. There is still a grade 2 bleed in her brain but it should go away soon. On a wicked annoying note - my csection wound half opened yesterday at the hospital because one of the stitches was stuck. So now every day for the next 6 weeks a visiting nurse has to come pack the w...