Our Family

Family photo by Grease Man Photography

Family photo by Grease Man Photography

Braxton lives at home with his mom, dad and big sister, Aileen.  Never in a million years did we think we’d have a child with special needs, and now that we do, it’s been quite an experience for us all.

Mom is Vanessa.  Vanessa works from home as the referral coordinator for a small pediatric therapy group.  She holds a Bachelors degree in Communication Studies from the University of Texas at Austin.  Thankfully, her current employer has been great with understanding Braxton’s condition and allows her to take the time off she needs for Braxton’s therapy and doctor’s appointments.

Dad is Joseph.  Joseph works out of the home as a rig manaager on an oil rig for Patterson UTI.  His schedule is pretty hectic and keeps him away a lot, but when he is home, he is absolutely amazing with Braxton.  When he’s home, Joseph keeps Brax at home instead of sending him to daycare.  That quality time is really beneficial for them both.  Joseph remains in contact when he is away and is very active in Braxton’s goals.

Aileen and Braxton <3 Photo by Grease Man Photography

Aileen and Braxton

And lastly, is big sister, Aileen.  Aileen is 9 years old and loves her little brother to death. At first, it was difficult for her to understand why he was in NICU for 3 weeks and why we had so many appointments for Braxton and not her.  Jealousy was tough.  Now, she is doing better and helping with Braxton in any way that she can.  There are still some bouts of Jealousy here and there, but overall she’s been pretty good with him.  She can’t wait for him to be mobile so she can chase him around the house.  Lord help us all when that happens!! You can read her blog here.

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7 responses to “Our Family

  1. Benedicte Symcox

    Beautiful family! I look forward to reading more. Thanks for visiting me… As you saw, I know G tubes and special needs, though I’ve never had to deal with the unknown in the way you are… It’s a hard and lonely road I know from other families I’m friends with. Don’t hesitate to join support groups of overlapping syndromes… they will almost always welcome you with open arms!

    • Thanks! I found your link you posted on the Tubie Whoobie FB post! We’ve recently connected with U.R. Our Hope a group founded for children with rare and undiagnosed syndromes, and you’re right, I didn’t realize how important that support is! It’s so great to be able to connect with families on the same journey. Known or unknown, the special needs road is definitely tough, but the rewards are like no other. Look forward to reading more from you as well 🙂

      • Benedicte Symcox

        I love tubie whoobies… though I have to say I’ve got on better with Belly Buttons because Tom can’t undo the poppers on the tubie whoobies. Since he’s very independent with his G tube care, that was a problem. But after 3 years of constant infections (staph A and candida), and trying everything in the stoma nurse’s arsenal, it was these lovely pads that sorted him out!
        My other revelation in the “mums know best” category was in choosing his food. Tom used to vomit all the time… not good at all!! When he was three, he was particularly ill, adn I finally had enough. With the doctor’s permission I tried blenderized food in his tube, and it was magic for him. Within four days, the vomiting almost stopped. Six years later, even the gastro enterologist has endorsed the diet I make for him!

      • I follow both on FB but haven’t really tried either. Actually just won an auction on Belly Buttons so hopefully they arrive soon! I’ve heard so many good things about blenderized diets. We’ve had a lot of vomiting issues as well, so I’m starting to consider it, but haven’t made the choice yet since he seems to be doing ok for now.

      • Benedicte Symcox

        enjoy those belly buttons… and if ever you want to chinwag about BD, I’m happy to tell you how it’s worked for me!

  2. Ana F.

    Vanessa, it was great to met you and your family, your Blog give our family so much hope! We share the same family structure, 7 year old big sister and baby boy with RTS. This blog has given me more confidence to share our story. Thank you so much. Ana

    • I’m so glad to hear that, Ana! We’re still new to the RTS diagnosis, but please feel free to contact me if you have any questions or would like to talk more! I found a very welcoming RTS facebook community as well, so feel free to add me and I can get you in touch with many others as well if you’d like!

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