Robbie's G-tube feeding schedule and 17.5 mo update from June 2018 (Add kicking video with Martha Later 6/14/18)

Robbie’s ECI Physical Therapist was working with him this morning on bearing more weight than he has been in the gait trainer to see how his knees would do...but he just wanted to play. Clearly he loves being able to kick freely after being in casts and braces so much of his life. (They are generally only on now when he’s sleeping or doing weight bearing exercises.) #byubaby #17monthsold #arthrogryposis #congenitalkneedislocations #amcstrong

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I spent 2.5 hours at Cook Children’s for one of Robbie’s NICU follow-up appointments. His 17.5 month stats:

Weight: 23 lb 7.8 oz (just under 50th%)
Height: 32.68 in (50th%)
Cognitive Age Equivalent: 12-18 mo
Language Age Equivalent: 12 mo
Motor Age Equivalent: 8-9 mo

The doctor referred us to a therapy service in addition to Scottish Rite and ECI to help him make up some ground. It won’t make my schedule any easier but I’m game to try anything that will help him progress. Plus, he hit his deductible in January, so why not?

In my church 18 months is generally an exciting milestone because it means kids are old enough to go to Nursery. But the closer Robbie gets to that day the harder it gets for me. Why?

-He might chronologically be a toddler, but he isn’t running or walking, and probably will end up scooting instead of crawling.

-He isn’t able to eat the snacks the other kids eat yet (he can have a small amount of stage 2 purée and yogurt, but no solid food or liquid to drink orally) and is still having GI issues.

-He babbles but until last week hadn’t said said his official “1st word”—It’s “MAMA” by the way. And I’ve never been happier to hear my name. 😍

-The idea of leaving him in there alone with other kids that might pull on his G-tube or try to feed him or get him sick makes me nervous.

I believe he will be able to walk, talk, and feed orally...but that day isn’t today. He loves people and music and I am working on a way for him to participate, but it is just hard to see him struggle with things the other kids and parents don’t even give a second thought.

However, when I feel defeated I have to remember how far he’s come. Those days in the NICU and the first 4 months of constant puking and weight loss and changing diagnoses when his future was so uncertain were extremely stressful. And if you Googled some of those conditions they thought he had you were probably crying a lot like we were. I still have most of the nodules in my thyroid...and 23 extra lbs...caused by extreme stress and lack of sleep. So glad they turned out to be non-cancerous! It’s kind of cute how I thought my infertility battle and high risk pregnancies were going to be my hardest trials for a while.

His current diagnosis is Arthrogryposis Multiplex Congenita (or just Arthrogryposis or AMC) with congenital knee dislocations and assorted feeding issues. AMC is so rare and has such an array of types that most people haven’t heard of it and the vast majority of doctors don’t understand it.

Other moms on the FB support page were told by their doctors to terminate their babies during pregnancy because they might not make it past birth, could possibly have a poor quality of life, and would require more time and money than they are worth...!!! I was never told that but it infuriates me to know others were when many times the doctors are proven wrong. And to hear how some of these kids are treated, or ignored, by their peers...makes my blood boil.

This is part of the reason I post so many updates on Robbie. I don’t love him more than Dylan or Colton. I want people to see how sweet and happy he is and for people, especially kids, to be comfortable around him and others with disabilities. He is loved and MOST CERTAINLY worth it. He is teaching us far more than we are teaching him.

If you post a picture of you wearing blue, tag me so I can see. And even if you don’t, still remember to Choose Kind. Always. ❤️#Arthrogryposis #AMCAwarenessDay #BlueForAMC #AMCstrong