We’ve meant to post an update on Norrah for quite some time.  In various moments and seasons we’ve thought – “we should really write about this” only to find that our daily life routines (and unexpected events too) distract us from putting fingers to keyboard and telling our friends about our little lady and all of her awesomeness.

Norrah isn’t really so little any more.  She is 4 (5 in July).

Since our last update Norrah has had several wonderful life changes:

  • Her ASD (heart defect) closed on its own!  No need for surgery.
  • Norrah did have a seizure in March of 2012 but has since gone one year seizure free.
  • Norrah loved preschool last year and is enjoying her second year at a typical preschool.
  • Norrah floats around 31-33 pounds depending on her health.
  • Norrah talks NON STOP to EVERYONE who will listen.  And even those who won’t.
  • Her favorite things include dolls, purses, wearing jeans, chocolate and her siblings and friends.
  • Norrah has been weaned from all of her reflux meds and we hope to wean her from her VUR med this summer, that would mean only low-dose Keppra remains (for now).

Over the course of the last year and a half our lives have continued to shift towards “normalcy.”  Whatever that means.  While it’s true that Norrah still has delays (most of which have to do with reasoning and obedience/social functioning, organized learning) so many of the HARD things that previously accompanied our days have faded away.  It wasn’t an instant change but slowly, over time, many gaps are closing.  The ones that remain wide open don’t intimidate us.  We know Norrah.  We know she will close the gaps between what she does and what is expected of her at her age by any number of professionals or authorities.  But, we know she will do it on her time, in her own way and we are happy to be witness to her doing.

Norrah’s language development is AWESOME.  Really, nothing short of AWESOME.  She talks in large sentences with inflection and tone, exaggeration and lots of descriptors.  She asks detailed questions, talks about her feelings.  She can now tell us when she is sick or something hurts, or when she is tired and wants to go to bed.  Now, not only family but friends and strangers can understand her long conversations.  Her peers can understand her too which makes meeting friends and having relationship with them much easier than in the past.  Norrah’s pronunciation – while SO IMPROVED – is still not always accurate.  Thankfully, we ADORE her speech therapist who she calls “Aunt Lyndsey” no matter how many times I say it is “Miss Lyndsey” and her speech therapist ADORES Norrah too.

Norrah’s eating always amazes us.  From the child who used to gag and choke on anything we gave her – who vomited multiple times a day and had SO MUCH work to do with oral motor skills – she has emerged VICTORIOUS.  Almost 5 and eating anything in site.  Really – she is the family garbage disposal.  After downing her meal she eats what the rest of us are too full to consume.  She’ll eat sushi, sandwiches, salads, raw veggies – ANYTHING.   EVERYTHING.  Sometimes she still over stuffs her mouth.  But, she has gotten great at dealing with it on her own.  So we let her.  She drinks from a normal cup, like the 4 year old that she is.  She loves ginger ale and coffee (decaf) but – her mean mom and dad tend to give her water most of the time instead.

Norrah has a typical 4 year old, middle sibling attitude.  She talks back, fights with Izzy and Lawson, tattles, acts sassy, taunts, encourages and LOVES.  It’s both endearing and frustrating.

Norrah naps 1 hour a day and sleeps 8-9 hours at night.  She is on the bottom bunk of her bunk bed in her shared room with her big sister.  We still put her to sleep by laying in the room with her and then leaving once she is out , but it is a small, sweet sacrifice.

Norrah can jump, run, climb ladders and scale jungle gyms on her own.  She loves to be active.

Norrah also loves shopping.  She asks every morning if she can go to the grocery store, Costco or the mall.  When she isn’t in preschool, she’d like to be perusing the aisles of any store, greeting customers and making Mommy scramble after her catching the bottles, cans and boxes she knocks to the ground.

Despite several fevers this year, Norrah has remained seizure free on her low (1.5mL 2x daily) dose of generic Keppra.  With one more year of no seizures we can wean her from her meds which would be AMAZING.  There was a time when we never imagined we wouldn’t be giving Norrah 6 meds, 3 times a day.  Now – we are down to two and by summer’s end the generic Keppra should be the only medicine remaining on our shelf.

Norrah enjoys preschool.  We drop her off at the front door where she exclaims “I’m here!” every single day.  She then exits the car with her backpack on, waves good bye and yells “come back and get me” before walking in the doors and to her own classroom all by herself.  She does a great job socially and with the her teachers.  However, her desire to follow directions or focus on the learning objectives is RARELY present.  Norrah doesn’t want to color in the lines, although she loves art and projects.  She also has very little interest in color, letter and number recognition.  When we hold up a letter “C” and ask Norrah what it is she plainly replies “a letter.”  She knows all of her color words but doesn’t feel any need to match them appropriately.  Norrah enjoys the social aspects of the school setting, and while she rarely protests the learning aspects – she also doesn’t often comply with the rules or procedures involved in those activities.  Norrah wants to do her own thing.  And, really – we are OK with that.  She does learn – but at her own pace.  In all things, giving her the tools she needs to move forward but allowing her own desire and motivation to take her there has been what has worked for our family.  So, we look forward to the day Norrah displays her color/letter/number recognition on her own time, in her own terms.

Looking ahead: Next year we anticipate sending Norrah to one final year of preschool (2013-2014) before beginning Kindergarten in the fall of 2014 at age 6.  We hope that in the next few months when the weather is warm and she can go pull-up-less that we can potty train Norrah.  Something she talks about (“pee on the potty”) but never does.

Norrah has good friends.  She has a big supportive family.  She is loved.  She is healthy.  She is happy.  Somehow – we have transitioned to “normalcy” not because all is normal in comparison to other families with kids free from chromosomal deletion diagnosis – but because for us weights have been lifted, our hearts are light and joyful, we are thankful for the many strides Norrah has made and look forward to what is ahead.  We love who she is and have full hope in the little lady and eventual woman that she will become.

 

 

 

5 Responses to What’s New with Norrah

  1. KevinO says:

    It’s so great to hear Norrah’s story again. It’s been a while. It sounds like she is doing so well especially in the eating department. Wow! keep up the great work. I’m sure that your greatness as parents have given her these opportunities to succeed!

  2. Heather (Frankie's mom) says:

    Nice update, and I love the pictures. I hope you’ll keep us updated on the potty training progress, since it’s a hope many of us share! And I admire your approach to giving her the tools she needs to develop and learn while allowing her own intrinsic motivation to set the pace.

  3. jerri says:

    WOW what an amazing little lady!!
    such a positive post thanks for sharing!
    I especially love the picture with glasses and moustache!!

  4. Karinne Costa says:

    Hi, we are Brazilians. we have a daughter with this syndrome. it is 8 months. I was very happy to read the Norrah’s story and her development. so I’m more hopeful about the development of my daughter.

  5. Letty says:

    I love to read updates like this!!! It gives me hope for my little guy. He is the same way….meets certain mile-stones when HE is ready. Sounds like you’ll are doing a great job.

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