Go, Noah, Go!

We visited the Gastroenterologist at Texas Children’s this past week to see what we could do to help Noah eat better.  For the last couple weeks, he’s been spitting up a good amount of his food after eating.  Sometimes a few minutes later to an hour later, it will happen.  Yesterday, he got sick after each meal.  Very frustrating as a parent to see your child go through this, not getting enough to eat and not knowing what to do.  He is also on acid reflux medicine to mix in his Pediasure but if he’s spitting it back up, is he getting what he needs from that med to help?  I just have so many questions and little to go on to know how to move forward. 
Noah has two tests coming up—A Swallow test (because when we give him bits of solid food, he doesn’t chew and swallow.  He keeps it in his cheek until he’s forgotten and gags on it) and another one to look into his G.I. tract.  We don’t know if, all of a sudden, his stomach doesn’t want to take Pediasure because he did the same kind of thing with formula around 9 months or if it’s a bad case of acid reflux or just a symptom of the syndrome.  So, we’re back to waiting for more answers. 
I recently learned there will be a Lowe Syndrome conference in June and in Orlando.  It’s only held every 3-4 years so even though we are financially strapped, I really want to find a way to get there.  I think it will be an invaluable resource to meet doctors, professionals and other parents who are more knowledgeable about this syndrome and how we can better care for our son.  Right now we are relying more on doctors who know he has this syndrome but, like us, don’t know much about it because the syndrome is rare. 
Other than the eating issue, Noah is doing well.  He’s crawling better and better but still kind of slow, which is OK with me.  He is getting steadier when standing and holding on to something and really gets a kick out of it.  He’s so proud of himself and I love that smile he gets on his face when he’s excited about what he’s just done. 
We have also added Speech to Noah’s therapies.  That begins today.  Noah now has physical, occupational, diet, visual services, and now speech.  This is excluding his doc appointments that are interspersed throughout each month.  Getting busier and busier but anything to help my son is my number one priority. 
Thanks again to all who continue to think about and prayed for Noah.  He’s a go-getter and I’m so proud of him for what he’s accomplished in less than a year of starting with the ECI (Early Childhood Intervention) program.  Love, love, love my boy!!
In the Moment Mama,
Jenna