Wednesday, November 07, 2007

The thing about Norah...



So I have been reading some blogs lately of people who have children with Down Syndrome. One thing that I have seen and liked is that they did a monthly update of their children. It was really helpful for someone like me to be able to read a chronology of how things went. Then it occurred to me that I should do this for my other kids too. We have an early intervention diagnostic appointment with Norah and I realized that I can't remember when she crawled, pulled up, etc. That might be why I didn't really notice that she was behind. Oops.

So here is an update on the queen. The grandma's will like it, it will serve as future reference for the kids (and me) and the rest of you might possibly be bored. I know that this blog is pretty much only about my kids now. That will change again soon. I do actually have other thoughts in my head besides that, but lately I have been in full-on survival mode and this is happy stuff. You really don't want to hear about the rest of it.... ;-)

Norah was born pretty premature. Somewhere between 5-7 weeks early. She was tiny, but left the hospital just a few days after birth. We knew that there could be some issues with her in the future as a preemie, so this is not much of a surprise. From the very beginning, this child has been 85% easygoing and sweet and 15% pure attitude. There isn't much middle ground with her. I also said early on that one thing I knew that was going to be an issue with this girl is motivation. How right I was. Last month Norah was officially diagnosed as developmentally delayed. Again, no surprise, but still hard to hear the pediatrician say. In true Dr. fashion, they listed all the potential problems and the need to get her checked out and see if she has mental issues, physical, etc. It feels like a lot. My mama gut tells me that she will be OK eventually, but does need a little bit of help right now.

Here is where we stand right now, at 16 months:
Language--As far as I can tell, Norah doesn't really attach any specific sounds to meaning. She also doesn't appear to understand much of what we say to her. She doesn't point (most kids do this at 12 months). She doesn't say "mama" "dada" or make animal sounds. She doesn't wave bye bye or seem to understand what we are saying when we say that word. Lately she has started to copy the tone or cadence of our words and repeat it, but I still am sure she doesn't seem to know what the words mean. I am not even sure she recognizes her own name.... well maybe. If I say to here "where is Jacob?" she will look at him. She does the same for Mom, Dad and Lulu. That is about it. Her first real "trick" is if we ask her "What does a pirate say?" and she will answer "agrhhhh". Sadly, she also says this for an answer to anything else it appears we are asking her. She doesn't appear to understand what the world "no" means. She has reacted to it a few times, but I am sure it was because of tone, not the word. We have to wait for the speech therapist to let us know what our language goals are with her, but it is pretty clear we have our work cut out for us here. The good news is that over the last few weeks, she has really started to "talk". She sounds just like the old school McDonald's character Rubble Rubble. Remember him? I know that my other kids did this MUCH earlier. The good news is that she is doing it now. I don't think there are hearing issues, but we will have to wait and see about that. She has also started to shake her head for no if she doesn't want something.

Physical Development -- Norah doesn't walk or really pull herself up on furniture. She doesn't walk along furniture. The few times I have seen her crawl towards something and pull herself up to get it is for the toilet, which she LOVES to play in. Dilemma--do we let her play in the toilet b/c it helps her practice and makes her legs strong or not? I haven't found anything else that is interesting enough for her to do that. It brings us back to that old motivation problem. She was a later crawler and sitter. She sat up at about 8 or 9 months and started to army crawl at about 12 months. In the last few weeks she has moved exclusively to hands and knees crawling. In the last 6 weeks she has also mastered going up from a crawl to sitting on her knees or flipping over when laying down and crawling. I know she COULD do these things earlier, she just wouldn't. She started crawling up the stairs at about 12 months, but hasn't done it since. If I put her on a chair or couch, stays there. She doesn't try to get down or even fall down. She just stays. Yet, she will wiggle out of the buckle in the high chair and be on the tray or counter in a second. So I know she CAN do it if she wants to.
If we try and hold her by the hands to help her walk she pulls her feet up and then cries. I got her a walker and she sits in it and pulls her feet up. She won't walk in it. Again, we are waiting for physical therapy to start so we can see what her goals are, but we have a lot of work to do. I think that this one is going to come, I really think she just can't be bothered. Good news--this week she found a baby doll in the toy box and hugged it, cradled it and put it in a bed. This is HUGE. Also, she found her shoes and tried to put them on her feet. This shows us that she knows what these things are and knows what they do. She has NEVER done this kind of thing before.
Also, she is a teeny, tiny thing. In the last few months she kind of fell off the weight charts and is firmly entrenched in "failure to thrive" territory. Our goal as parents is to get as many calories as possible into her body, healthy ones. It was only when I really sat down and concentrated on her eating that I realized she doesn't really eat that much. She isn't interested. We have been feeding her a lot of Greek yogurt (16 grams of fat per cup), Trader Joe's Belgian Chocolate Pudding (20 grams of fat per cup), eggs, half and half in the bottle, etc. It is an all day affair. Some days she eats more than others. We have a check up in two weeks and hope that she has put on some weight. If that doesn't work, I am going to crack out the Truffles from Costco and Doritos. She is still in 6-12's or 12-18 months clothes but wears size 4 diapers. She has chunky legs and arms, she is just really, really small. Except for her hair.
Socially, I think she is right on. She loves to play with her siblings and they love to make her laugh. She plays "games" with her dad that are special only to him. She loves to hear music and will bounce and sing. She can play peek a boo. She loves to fill and empty baskets full of things. A cup and 10 pieces of cereal will keep her busy for 15 minutes. She loves books and loves to be read to. She plays well with other kids but is very attached to me and to Monique (our nanny). She is a hugger and a snuggler and would prefer to be held than on her own. This is one area that I am not worried about her at all. Again, I guess we have to see what the therapist says, but I think she is right on target.
There you have it. The rundown on N's development. Of course there is much more to her than this, but this will help me to keep track of her progress. It will also be interesting to compare her with the next one. I keep hearing about how children with DS are delayed, but the timing seems to be about the same as Norah's so far, so no biggie.

Next up is Cubby and Lu, then some new stuff about the new baby and the new challenges. I am still processing, but want to thank everyone for your comments, your links to others who are a little bit farther down the road than we are and just the general kindness. It has been wonderful and helpful....

Happy Wednesday.....

P.S. Oh, her eyes. She does NOT need glasses. We will continue to patch her and in a few months she will have surgery that should straighten them out. Poor baby will be able to have both eyes look in the same direction. ;-)


15 comments:

compulsive writer said...

That's such a beautiful picture of her. And I love the idea of regular updates.

I wish you well with everything. But I hope you know you're a pretty amazing woman Bek. Your family is so blessed to have you.

God bless--

Liz said...

You are so wise to do this. So much easier than digging around paper files that get shoved somewhere (they do my life awyway). can't wait to read her successes once you awe aware of realistic goals just for her. Those will be so exciting, just as the ones she has recently done!!

Jill said...

My baby Miles had eye muscle surgery in July. He looks fabulous and his eye is holding steady. I'm confident you will get a similar result. Also, my daughter was a very late talker....my MIL is a speech therapist and had me convinced that she coiuldn't hear. Alas, she was wrong...and our little girl talked when she was good and ready....and now at 8 years old, we can hardly get her to shut up.

Hang in there!

Bek said...

Thanks! I am sure she will catch up at some point, she will just need some extra attention and help. I really didn't realize HOW far behind she is on some of these things until I really thought about it... poor Norah!

I can't wait to have some goals too, Liz. It will help us feel more proactive about helping her. For now, it is just Lu and the homework...the never ending homework....

Anonymous said...

Bec,

You might have a ped experienced w/ exotic abnormalities, skelatal, muscle do a thorough check on feet, legs, hips, spine. Sounds like she hurts to put her weight down.

Soldier on. Feed. Feed. Feed. Failure to thrive is no picnic.

Bek said...

thanks for your comment. About 6 months ago we had her checked in her hips, etc. She had a few things that were suspect, but after x rays, etc they said it was fine. Absolutely worth checking again. We used to have a "jumper". Those things that look like an exersaucer but bounce...she would jump and jump and jump, so again, I HAVE seen her put weight on it, just when she decideds to...but part of me does wonder if it hurts to put weight on it. That is why I am so thankful for the diagnosis, b/c they will check EVERYTHING and I don't have to fight for it....

I will follow up on that....thanks for the reminder...

Tablogger said...

Hey Bek,

Just caught up on your blog...my, you've had a busy year! Your resiliency through all the ups and downs is an inspiration to us all.

We're trying to start doing a similar update thing on the kids with our blog (which we are going to transition from being "my" blog to being "our" blog soon - we hope!) I think it is a great idea and allows family, friends, and loved ones the chance to catch up.

Not that I'm in any way qualified to make any sort of diagnosis, but one of the things you said about N made me think of when Chase was a little younger than her but was reluctant to move - at all - for several days before we noticed it. He was able to pull himself up at that point, but we realized after a few days that he would just sit wherever we put him and not move - not even to get a toy he wanted or when he saw something happening across the room that he'd normally want to investigate. We mentioned it to the pediatrician and he was diagnosed with some sort of infection/inflamation (toxic synovitis, I think) in the hip joint that was causing some sharp pains with movement and weightbearing. Once diagnosed, some antibiotics cleared up in another week or so. The pediatrician said it was fairly common in kids his age, and said it was usually more prevalent in either girls or boys (but of course I can't remember which now). Anyway, thought I would echo the sentiments of "anonymous" and suggest you at least ask about lower extremity conditions like this.

Lots of love to you and your family - come back and see our blog sometime when (actually "if") you ever get a spare second.

Bek said...

Taber... I just checked out your blog and caught the news. WOW!! London, huh? Lucky.

YOu will be MUCH better at updating when you are a million miles away... ;-) we need London details, where are you living? who is your client? My sister lives there now and can be a great babysitter contact (you will have a million...). ;-)

Betina said...

I am glad she is starting to babble and play with sounds more. Encourage this, echo it, copy what she does and wait for her to repeat. Make sure there is eye contact happening in these exchanges.

The baby doll thing is SO SO great! I would maximize this activity as much as possible.

That's my 2-bits worth as an ST.

You are a good Mom.

wendy said...

Our son, Kenyon, had two surgeries to correct his wandering eye (one in Ethiopia before we came into the picture--we didn't find out about it until the doctor was doing what we discovered was his second eye surgery here in the states). It was a pretty easy surgery, with a super quick recovery.

Wendy from Flippin' Sweet

AzĂșcar said...

I love to read what your write, no matter what you write about (it's like having a conversation with you in the same room.) I look forward to these updates and to all the news.

N might be behind, but it sounds like if you subtract 8 weeks from her age, she's more on target. IF it makes you feel any better El Guille was not a pointer or a bye-waver at all. He didn't wave bye until he was more than 2.

Sometimes, I get the feeling that our kids are messing with us and will do things when they are darn good and ready.

Anonymous said...

As a couple of others have noted her unwillingness to put her feet down sounds like`she's hurting. If she hasn't been getting enough to eat, it could be joint pain from a vitamin D deficiency. That could explain some of her other issues as well.

Emily said...

Our Norah is underweight, too. We've been mixing Carnation Instant Breakfast into her milk, which is good, because it has protein and nutrients in it.

Ditto what Compulsive said.

La Yen said...

I like her eyes now, because she always looks kind of sneaky. (Not that they shouldn't get fixed, or anything. I'm just saying.)

Leisha said...

I love that picture...especially her hair! Yes, I come here just to check out Norah's hair!