In 2010, our twins, Eleanor and Andrew, were born at 28 weeks gestational age (due to pre-term labor caused by an incompetent cervix)–three months too early. Eleanor sailed through her two months in the NICU with very few bumps in the road. Andrew had a rougher go and spent five months in the NICU before coming home. You can read their NICU stories here.

Andrew was born with a perfectly healthy brain. However, when Andrew was about a month old and still in the NICU, he became extremely ill and septic from a horrible infection called Necrotizing Enterocolitis. He survived, but not without serious neurological consequences. Today, he has spastic quadriplegia cerebral palsy, bilateral and cystic Periventricular Leukomalacia (PVL), infantile spasms (no spasms, but regression + hyps), acquired microcephaly, cortical visual impairment, and auditory neuropathy. And due to lack of coordination and aspiration risk, Andrew had a g-tube (mic-key PEG) placed at 20 months of age to receive all his nutrition from (in the form of a blenderized diet).

In layman’s terms, this means that Andrew has minimal use of his arms and legs, has poor head control, is unable to sit, crawl, or walk. He is unable to eat by mouth and receives all his nutrition in the form of blenderized food through his gtube. He also has a seizure disorder which has resulted in the loss of vision and has stunted much further physical development. And while Andrew can hear sounds, his brain does not process it the way it is supposed to. For example, we hear “Hi, how are you?” but what Andrew might hear is “hieiaiteiatheat?”

I know, it all sounds pretty devastating. It was pretty devastating to slowly learn all of this during the early years. But if you, too, are a parent of a severely disabled child, believe me when I say this: it gets better.

Andrew smiles and laughs. A lot. He loves to swim, listen to music, attend birthday parties, lick lollipops and popsicles, snuggle, play with adapted toys, “sing” to his favorite songs, and more.

Andrew has had a very difficult start to life. But these days, he is a very happy little guy and brings much joy, love, and laughter to our family.

This blog was created to update friends and family on the health and developmental progress of Andrew, in particular. We also hope that it can be used as a helpful resource for families who find themselves under similar circumstances.

And, finally, we use this blog to offer a vision of what family life with a disabled child can be: a richly and radically positive, hopeful, loving, and dignified experience for all.


5 Responses to About

  1. Krista says:

    Hi, there.

    You posted a comment on my blog (Galli-ringo family) and I just had a chance to check yours out. I’m glad you found our site and I can really relate on many levels to being in the place you are now, the watching/waiting place, with one twin sailing along smoothly despite a rough start and the other having a tougher time.

    It does sound though that despite ALL that Andrew went through (and man, he sure went through a lot!), he is a tough little guy and as he continues to recover from all of that, he will get stronger and stronger and the developmental pieces will fall into place. Not saying that he doesn’t have PVL, and will escape without any motor-neuro issues, but that he may surprise you with his capabilities. It is AMAZING that he is smiling, tracking objects, holding his head up with assistance…these are all big things!

    I remember thinking, in those early days, that I just wished more than anything that someone could introduce me to the 5 year old Hannah, so I would know what our life would be like, what I could expect, and how she was doing. The not-knowing and uncertainty were SO HARD for me. Now here we are, and she’s 5, and life is far from perfect but it’s definitely more than okay. If when she was 1, someone told me that 5 year old Hannah would not be able to walk or stand independently, I would be crushed. But that is our reality now, and yet, it really is okay. She is a spunky, intelligent, caring, wonderful kid who gets around physically in the best ways that she can and figures the rest out with gumption and determination. It would be much easier if she did not have CP. But she does, and it is our life, and it really is okay…

    So anyway, just sharing those thoughts in case you are where I was when my kids were your age, which was sad and confused and anxious a lot of the time about what the future held, watching every movement of theirs with bated breathe. It really does get easier…

    • earlybirdies says:

      You wrote this four years ago and I didn’t quite believe you. But here we are now and Andrew is six years old. And you were right. It really does get better, it really is okay, and Andrew is pretty awesome. Thank you, thank you!

  2. Sonia says:

    Hi there! I saw your blog link on the preemie listserv. Thanks for sharing your journey. Lydia was also born at 28 weeks and was probably more similar to your little girl, sailing through with the ‘normal’ preemie issues. She is doing well these days and still has some speech therapy, but no lingering effects as far as we can tell at this point. Just wanted to drop by and give you our support.

  3. Ouch. Sorry Andrew has had such a rough time of it.
    Our guys came early due to a so-called “incompetent” cervix, too. We were so happy to make it passed the 28-week mark as our doctors said the chances of anything going wrong were so much lower. But, as I’ve come to find out, it doesn’t matter if there’s a 1 percent chance of something if you’re the 1 percent!
    I’m glad to meet another mom going through the joys and sorrows of watching one twin develop normally while the other doesn’t. And thanks again for your suggestion on Medicaid waivers!

  4. Kristi says:

    Hello, I my twins are almost 20 months (born Oct 4, 2010) and our little boy, Tyler, also has CP. His twin is a typical developing toddler. It sounds like we have a lot in common. I’d love to chat sometime.


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