I kept telling myself I would write another post after the next appointment, but then the appointments just kept coming… so here I am, a month later, finally breaking the cycle 😅

Joy got her new pink helmet this month! This helmet is so much lighter than her first one because it’s made from a foam-like material. Joy seems to be happy with the change too because she’s really taken off on her motor skills! Her PT is impressed with her strength and has noted that Joy’s difficulty right now lies in the coordination of movement, something she naturally would struggle with due to her ACC. She is also working on trunk strength (we do a lot of assisted sitting!) with the hopes of sitting independently in the not so distant future— and once we reach this milestone we can start introducing solids! Her feeding therapist has introduced her to a spoon and she seems interested in it but doesn’t like it in her mouth much so we are currently working through that. It makes sense that she wouldn’t though, because she has 2 teeth now! It was a shock to everyone that her teeth came so early (before she even hit 6 months). But teething = discomfort which means Joy is ~so~ not about eating and she isn’t afraid to tell us as such. 

This month we also finally said goodbye to her orthodontist, at least for about 5.5 years. It was strange walking out of their clinic for the last time (for a while) after going there every week for Joy’s first three months of life. Joy will need a surgery to straighten out her gumline somewhere around age 6-7 with braces to follow. Poor girl can’t seem to catch a break 😭

After months of trying (it was a STRUGGLE, y’all), we finally saw an endocrinologist last week. They did some lab work and we should be getting test results any day now. We have long suspected Joy has a growth hormone deficiency (the endocrine system runs right next to the Corpus Callosum so when a baby is missing theirs like Joy is, the endocrine system is often affected. Her neurologist has been wanting to get hers tested since before she was born). If she does, it would explain her slow growth and why she’s still only maintaining a growth percentile of between 25-28% even though we have completely maximized the calories for her milk fortification. Depending on what the labs say, we may or may not pursue any treatment for it because her doctors say she still looks healthy despite her slow growth. 

It’s been a jammed packed month and March is looking like it’ll be almost as busy as February has been. One of these days life may slow down but today is not that day yet. 😅 

Thank you all for the continued prayers for our sweet Joy!