So, when we left off last time we had just met our little girl for the first time. Awww, sweet. We are going to fast forward a months. Let me assure you that we spent LOTS of time with Norah's family before they went home to the Bahamas. We even heard Grandpa preach a very feisty sermon as a guest preacher at a church in SLC... Her mom, T didn't want us to have a picture of her (boo) but I am sure that in this internet age we will find one someday to show Norah....... I am so thankful for the time we had with them. It was important for me to feel some sort of connection with them so that someday I could tell Norah about her mom. They named her Hope and we called her Norah Hope. I wanted to name her after Derek's grandmother, whom I was very close to. Norah's names represent some very beautiful and brave women. She will understand that someday.
Norah has always, always, always been a very mellow baby. She was so easy to have around. She slept all the time, she ate like a charm (but always was really tiny--she wore her preemie clothes for almost five months). This started out as kind of a joke, but it wasn't too long before I started to sense that something was different with this girl. Different in the bad way. She seemed really floppy--but we kind of chalked that up to just having had Jacob, who is REALLY, REALLY, FREAKISHLY STRONG. She didn't roll over. She didn't raise her head. She didn't crawl. I remember asking my doctor about it when she was 9 months old. She didn't EVER support her weight on her legs. She didn't even try to crawl. Sitting up was still iffy. I kept asking my doctor about it and they kept telling me to wait until she as 18 months old. That seemed to be the magic age. They don't really worry about not walking or talking until then. As a more experienced mamma, now I know I should have pushed harder, insisted on more, but I just didn't know. Her 18 month mark hit right as I found out about Grace and all her potential issues..and those appointments didn't get made as quickly as they should have.
So here we are at two with a girl that has made SO MUCH PROGRESS, but is still very behind. Unlike Grace, Norah doesn't have a diagnosis beyond "failure to thrive". That means she is tiny and doesn't put on weight, she doesn't hit her developmental goals on time and needs help in at least 4 of the 6 developmental areas. These are 1) Language and Communication, 2) Concept Development and Pre-Academics, 3) Social and Emotional Development, 4) Gross Motor (e.g., sitting, walking, running), 5) Fine Motor (e.g., manipulating small objects, toys), and 6) Self-Help or Adaptive (e.g., feeding and dressing oneself). Check, check and check. So what do we do now?
We finally got the referral for an evaluation and lucked out to have a great social worker. She made sure we went to to the right doctors and did things in the right way. We are now knee deep in the early intervention program where Norah is getting (or will be shortly--those pesky waiting lists...) occupational therapy (there are a few sensory issues), physical therapy (gross motor skills and her hypotonia --that is medical for low muscle tone...), blind babies (not totally sure what that one is yet..some sort of eye therapy for after her surgery next week), speech therapy (self explanatory) and some behavior therapy (she doesn't cope too well..she is pretty much a kid that is either a 0 or 100. There isn't much in between. This leads us to think that she has a hard time transitioning). Good times, huh? I have a strong feeling that by the time she is in kindergarten or thereabouts, she will be all caught up and this will all be a fading memory. I think we will still have to help her find ways of coping with some things, but that is as much a function of her personality as anything else. A mellow, easy going kid just is. Motivation is a tricky one..
With all of that background it would be easy to think of our girl as just a bunch of issues, but it really isn't that way. I record it here for a few reasons, so we remember, so she will know and so others that find my blog and have kids with similar issues can either read about our story and progress or offer info and advice. When you get sucked into the "special needs" world, a whole new set of parenting info, lingo and learning curve takes over your life for a little while. It is always nice to have a network that know what they are doing...
The reality is that life with our little Norah is lots of fun. As I have said, she is my mellow girl, but she is also very good at getting what she wants. She shouted "MINE" at Cubby on her birthday when he tried to take her presents. I don't worry too much about her being bullied. I don't worry about how we will motivate her to want to do things that she doesn't want to do (so far, eating and walking....). She also is my sweet child. She loves to give kisses and has never passed a purse or pair of shoes that she didn't want to try and wear. She has the greatest hair in the world and is so patient while I condition it, brush it, braid it and tug at it. She loves wearing beads and clips now (she calls them her 'pretty girls'). She is is the best playmate because she will both roughhouse with Cubby and play "baby" with Lulu. She is my only child that loves "babies". She was thrust into big sister mode with the arrival of Grace, and maybe not coincidentally, she hit some major milestones not too long after that. She stood for the first time. She consistently used words (my baby--meaning Grace" being the first and most frequent). She is now starting to walk and be interested in potty training and sleeping in a big girl bed. The two year old tantrums are in full swing now too. Since I have done this a few times, I just laugh (and occasionally grit my teeth) and wait them out. She is picking up sign language really quickly. The whole family is learning so we will be ready when Gracie gets a big older. Her favorite signs so far are "cookie", "butter" and "chips". You'd think that with favorite words like that she would love to eat!
In Norah's world the facial expression above is a full on smile. This girl doesn't give it away.
Her favorite way to swim with Dad....
This isn't just another picture of a half naked baby who insists on wearing goggles... this is one with some actual meat on her bones... you can't see her ribs anymore. Progress!
This is a very rarely seen, rarely captured unguarded smile from my girl. She is usually giving us the sideways look that is half amused/half bored. Like this one below...
After her surgery on Friday, she should be able to see out of both eyes. I have to admit that I will miss her sideways looks, but I will enjoy her being able to use both eyes at the same time MORE (and I will NOT miss patching her... it is like patching a wildcat.... ).