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In as short and as SWEET of a post as I can (which is no small feat for a person like me) I wanted to introduce my daughter Norrah.

Norrah was born on July 1, 2008.  My pregnancy with Norrah was fairly uncomplicated until my 20-week ultrasound that revealed two markers for genetic disorder namely a 2-vessel umbilical cord and choroid plexus cysts in her brain.  We were referred to specialists but after several normal follow-up ultrasounds (the cysts went away – the cord remained malformed)  the doctors predicted a healthy baby.  There was some question as to her size in utero but she was born healthy and happy at 38 weeks old.  She was 6 pounds 3 ounces and 19.5 inches long.

As soon as she was born I knew that something was very wrong with my daughter.  Not because her health seemed compromised in any way but because I am a mom and I just knew.

It would take 10.5 months to receive her diagnosis after several closed doors, doctors assuming I had psychological problems, and countless times hearing the words “she just has bad luck, not some underlying condition.”  In 2009 I finally met a doctor who, like me, thought that something was wrong that was causing Norrah’s ailments and delays.  To this day he is still my FAVORITE doc., not only for listening to me but for loving my daughter and for fighting insurance and common sense to get her the correct diagnosis.

Norrah is now 20 months old and she is AWESOME.  I enjoy every moment of being her mom (even when I pretend to want to send her away when she wakes up in the middle of the night or pukes one too many times in a row).  She is truly the joy of my life – along with her big sister.  My husband and I adore her and anticipate each day with thanksgiving that we can call her OURS.

Here are the stats most people like to know:

HEALTH – Norrah is seizure free.  She does have a twitching condition called benign myoclonus of infancy which is nearly non-existant these days but did plague her more so in the early months of life through 1 year.  She will occasionally twitch during a developmental or physical growth spurt and return to her early frequency of myoclonus but that is rare.  She has had several tests including hospitalized video EEGs that recorded episodes in order to confirm a seizure-free diagnosis and that is the case. I pray it stays that way for her.  She is NORMAL in size for a typical 20 month old.  She is 24 pounds and 32 inches long.  Her head circumference is in the 55th percentile for a typical child her age.  She has acid reflux, vesico ureteral reflux and one atrial septal defect (that is closing on its own).  She does not have any immune deficiencies and is rarely ill.  If she does get sick the sickness seems to run its course just as it would for a typical child.  She has a few hemangiomas that are almost completely involuted at this time.

DEVELOPMENT – Developmentally Norrah is behind typical children her age.  Her cognition is WONDERFUL and she actually does not even qualify for speech therapies at this point because her understanding tested so high that her verbal skills did not fail her.  (WE GET HER SPEECH THERAPY ANYWAY).  She understands commands and will follow them without visual cues.  She also likes to take turns and enjoys feeding anyone who will allow her to share her food. She says only 3 words regularly (book, bye bye, and yum yum).  They do not sound perfect but we know what she means to say – they are close enough.  She will occasionally say MaMa.  Norrah is sitting, pulling to stand, standing with the support of a table/chair or other structure, and rolling to get places.  She is currently working on crawling and walking but is not too interested in taking steps or shifting weight.  She wears ankle orthotics to support her in standing/walking.  Norrah’s diet consists of Pediasure, pureed foods, and table foods.  Norrah began feeding herself a few months ago and likes to snack on cookies, crackers, cheese curls, cheese, etc.  She can eat noodles, oatmeal and hard foods that she can mash with her gums.  We are working on getting her to chew consistently since some foods get swallowed whole and accordingly often come back up.  Maybe if she had more than 5 teeth – she could chew better!  🙂  Norrah’s teeth are erupting slowly.

We have a personal blog for Norrah at http://knowingnorrah.blogspot.com where you can read more details and contact me, etc.

I am in the process of adding several posts from that blog to this site for easy access.  However, if you want to get to know Norrah more or learn more about our family then feel free to hop over to our blog.  I am choosing to post Wolf Hirschhorn specific posts  (and maybe a few other fun ones) on this site so the silly and mundane details of life with Norrah will be best kept on that blog.  You are welcome to share in any aspect of our life that you would like.  🙂

I look forward to sharing more about Norrah, answering any questions that you may have and getting to know your loved ones with WHS as well!

I am proud and blessed to be a part of the Wolf-Hirschhorn community.

-Lauren (Norrah’s proud Mama)