Down Syndrome 101

I have a big long post about Down Syndrome coming up (lucky you).

It is a short FYI for the benefit of friends and family and also to address some questions we have been asked. If you have a question you want me to include or are just curious about, e mail me and I will include it....

I am just polishing it up.....

We also think we have a name for her. I just wanted to name her as soon as possible (after very much NOT being a "name the baby in utero" kind of gal). We are thinking old fashioned and traditional and one that she can easily say........... we have a short list........

The stuff that comes out of her mouth...

Lately, Lauren has been giving me lots of gems. It is like she suddenly decided to start using every phrase she ever heard on TV. Here are a few gems:

L-Mom, do you have a Countrywide Loan?

Me- No, why?

L-- Well, you should get one. They have no filing fees, no closing costs and no hidden fees. They are really good.

Me-- OK, thanks.


Take 2

Me-- Lu, I can hear you muttering under your breath. What is going on?

L-- Jacob is a vile old man. (not sure why.....).

Take 3

Me-- (as Lauren gets out of the car to go to school). Goodbye sweetie, I love you

L--Another day, another dime, another dollar (and closes the door)....

Take 4

Derek has been kicking around the idea of getting a new job. Long story for another post, but he currently has a job that he is doing really well at. He is good at it, he establishing himself as a real player in his industry and is being mentored by great people. It is the kind of job that pays obscene amounts of money, but requires nothing short of you soul. Having this baby has helped us understand that we need to restructure things and maybe look for a job that is a little bit closer, or allows him more sleep, etc.

Lauren caught wind of one of these conversations and after doing the hard sell to get us to move next to her cousins and Miles and Owen and Phoebe in Utah, she settled on finding him a job somewhere here. Each day she calls Derek and tells him about jobs that she has found around town. It is also a great topic of conversation for her "what should Daddy do?". This morning she saw a "help wanted" sign in front of Round Table Pizza. She was so excited to tell him about it. She also thinks he should work at Jamba Juice or the gas station. I get the feeling that she thinks that these jobs are SO COOL, she can't understand why he wants to look for another "money" job (we explained that she works in finance and helps other people invest their money).

So, if you know if any open positions at a Pizza Hut, a Jamba, a toy store or a book store, Derek's agent Lauren might be calling you.

She really is my sweet girl. It has been so fun to see her grown up personality come out.

Thanksgiving--by the numbers

Did everyone have a good Thanksgiving? Is there anyone out there that DIDN'T have a member of the family throwing up the entire day? I haven't heard of one yet. Maybe that is the new Thanksgiving tradition of our country.

We went with my husband's family to Park City, Utah. This is handy b/c my parents live really close by. So does my best friend. In theory, this would mean lots of fun social things and babysitting and visiting with family. In a perfect storm of awesomeness...none of that happened. So here it is, Turkey Day 2007 by the numbers...

Number of times someone threw up-- many, many, many....

Number of times it was on the plane -- 80%

Number of most consecutive hours of sleep by me or D -- 3

Number of times Jacob almost died during the long weekend -- 3 (not kidding)

Number of fun pre-planned social outings I attended -- 0

Number of times I had to go to the stupid outlet mall -- 4

Number of gifts I had to return on Black Friday after being really organized and buying the Christmas presents for the in laws in advance, only to find out that this year we are drawing names -- 8

Number of children I was ready to sell to the gypsies by the end of the trip (or to anyone, really) -- 2

Number of times I either tripped, dropped something or otherwise found out that my body does NOT seem to want to obey my brain -- eleventy million

Number of very beautiful, very expensive, band new white suede couches that my daughter managed to spill Vitamin Water all over and totally destroy -- 1

Number of times I watched Shrek 3 -- 10

Number of times I stayed awake past 7:30 pm -- 0

Number of times I will drag the whole family back to Park City for a holiday, even though it is a really nice house and wonderful opportunity -- 0

That is us. I really don't mean to make it so complain-y, but it was pretty comical. It really was a perfect storm of evil. My kids argued and fought. They tried to kill themselves (twice being hung by the bunk bed rails, once jumping off the third floor balcony), they got sick, they didn't sleep, they wandered the house all night (once Cubby woke up with a full bag of Doritos's clutched in his hands...no one knows where they came from....) and generally were a lot of work. That is what it comes down to, I think. It wasn't that we didn't have a good time and want to see the family, it was just a lot of work. I don't want to do it anymore. Is it terrible if I play the Down Syndrome card after this and just bow out? Seriously, my kids can argue, almost die and puke at our house just as easily as anywhere else. Right?

Who am I kidding? We will be back in a month.

How was your Thanksgiving? Seriously, did anyone have a healthy household? I am curious.

The best birthday present ever....

A little bird must have told you all that I had a birthday yesterday....

I had decided to stay in my jammies all day as a gift to myself. By the time I had gotten up to go to the door for the mail man for the third time, I just got dressed already! It was so fun to get all your sweet packages and cards and e mails and calls. In this house, nothing comes in the mail unless it is a bill, and if it IS a real card, it is a birthday invitation for my daughter. This time they were for ME!!! I never get packages either......

The point is, what a fun day and THANK YOU for all your kind words. It was the perfect birthday because I spent the whole day being reminded that even though I want to put my head under the sand some days, the world is full of people that are wonderful and kind.

The best birthday present ever (besides being showered all day with fun stuff) was that at my Dr. appointment yesterday we got great news. I had a bunch of ultrasounds and meetings with a cardiologist to see if the baby's heart is OK. 50% of children with Down Syndrome have major heart and intestinal issues that require surgery. We are clear. She is also really big (they tend to be small, gestationally) and have other issues with arm and leg bones. Nada. That was a great birthday present. Hopefully, no surgery. Also, on the ultrasound I could see that she has her dad's chin (think Jay Leno).

AND Project Runway started. How could a day get better?

More info soon....

Sick Day...

Big sister has step throat, I am pretty sure Cubby has it too (the Dr. let me just call in and gave me the meds...she is great). L stayed home from school today. In the morning she was curled on the couch and miserable. A few hours later she came to my room looking for my "fancy shoes" and I know that the meds were kicking in. A few minutes later I came down stairs (where it had been suspiciously quiet for a long time) to find that the kids had built an enormous playhouse with blankets (complete with a toilet, a kitchen and Nerds for food) and were dressed up.

Ladies and Gentleman, I give you the first of many times when Jacob proves he will do ANYTHING to be part of L's big plans.

He actually was happy to be dressed up, in this picture he was mad b/c I wouldn't turn on the music until he took the picture.....

I am sure that this won't be last time that someone tells him he would be a very pretty girl. He reminds me of the kids I work with in Africa. Most of them keep their hair cut very short and you only know that the little ones are girls because they are all wearing dresses.

They turned on Nick Jr. Radio and played the songs and danced. They were doing a West Coast Swing style dance complete with the splits and lifts. Not bad.

Norah is in full swing of toddler hood. She is acting like a real 18 month old, climbing, getting into things (the dishwasher being a new favorite). She is standing more and I am seeing more progress with her. I know she still needs help, but it means that she really is coming along at her own pace. I appreciate the suggestions of the commenter's about her legs. We have done test after test and know her Vitamin D is OK and her hips are OK. Her eating is doing better too. She has days when she doesn't want to eat at all (except eggnog and cheesecake) and other days, like last night, when she ate two entire pieces of meatloaf. I think she looks chunkier.... we will see.

Today I have a bunch of ultrasound's to get a better idea of what is going on with the baby's heart and tummy. It will be nice to have that info.

Off to run errands. Kid updates coming soon...

Oh yes he does...

He still loves salad. He eats it for breakfast AND lunch. Lately we have been having goat cheese, pomegranate seed and red onion w/ poppy seed dressing. But he will eat it plain too. His favorite food is broccoli. He bypassed McDonald's hash browns (what???) the other day and begged for fruit. He didn't eat one piece of Halloween candy and I have never seen him finish a dessert. I wish I could claim the credit for this, but this is just how he came. He also eats and loves pickles, sushi, mustard, BBQ sauce, Thai noodles, curry and anything else spicy or strange. Yet he will not eat french fries. Again, he is my most complex child.


He did, however, find a Costco sized package of gum yesterday and chew them all and leave them around the house....

I need to get more protein into this child. No wonder he is only two apples tall!!! Also, he is still pretty much always naked. It is a loosing battle.

Babysitter in Utah over Christmas..

Greetings Blog world,

This is actually a want ad. I know that so many of you live in the SLC/Provo area I am hoping you can help me. My extended family will be going to Park City for the Christmas Holiday. We won't arrive until the 27th, but I think that the others will be there the 23rd-ish. We will be in town until the 3rd. We need childcare. I know that there is someone out there that one of you knows that would like to make some extra cash at the break. Maybe a student home for the holiday? Maybe a mom that wants to put a dent in the Santa bills? Anyone? We are trying to avoid using a service and really would like to build the list of people that we know who can sit. We will be visiting here a lot in the next few years and it would be nice to have a list of sitters.

Here are the details:
--Never more than 4 children, ages 7, 3, 18 months and 12 months. During the days, the two older ones will ski (usually) and it will just be the little ones. Evenings will likely be all the kids.

--Pay is between 15 and 20 dollars an hour, depending on how many kids you have (if it is one or two it is 15$, three or four is 20$).

--We need some days (while the adults are skiing/shopping/generally not chasing the kids) and some evenings. I think that you can count on New Years Eve. The catch is that I am not totally sure of the schedule right now (the days I could guess and are more flexible) but the evenings won't be pinned down until the first part of December

--The biggest requirement is that the sitter needs to have experience (and be able to let me talk to two people who can tell me how great you are) and be the kind of person who shows up and is on time. You will also need to get yourself to Park City. The house is just past Stein Ericson's Lodge and is in a gated community that is patrolled and plowed. It is very safe.

--Someone who is intuitive would be nice. If you need to feed the kids, be able to put a lunch or dinner together, be able to not worry when the 3 year old doesn't want to go to bed, be willing to chat with the 7 year old (and I mean chat and chat and chat). That kind of thing. Three of the kids are mine, one is my nephew. Pretty easy kids.

I would love to hear any and all ideas. I think that a high school student would not be the best thing but could be talked into it (I know SEVERAL HS students that are much more capable than college students). An adult is fine, etc. Just someone who will keep the kids safe and will not just "not show up". That is key. This is my ONE job assigned to me by the in laws this season and I need to represent. ;-)

E mail me if you want or leave me a comment on how to contact you. rebeccakbingham at yahoo dot com.

Thanks. This could be a really great opportunity to make some serious cash this month. My inlaws are all about leaving the kids with a sitter while the adults go do things, and who can argue with that? If they had their way, there would be a sitter there 24/7. I don't anticipate that one person would be able to do it all, so the more the better....

THANK YOU!

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. ;-)

Parenting tip of the week...

You know how your kids haven't totally figured out the time difference yet? You know how your kids probably get cranky an hour early in the evening (is it just mine?). When my kids are tired the get CRAZY. Persnickety is the best word for it. I have a solution--though this might only work for younger kids. I imagine that there is a point when they won't do it any more. Probably about the same time they don't fall for "I am going to time you and see if you can run upstairs and get my remote/slippers/book in less than 30 seconds".

Here is one of our favorite games (and they still think it is a game. Suckers). Find what motivates them (money for child #1, Popsicles for child #2). Put on a loud song and tell that that whoever can jump or dance for the longest amount of time gets the prize. If you have really competitive children, your kids will be too exhausted to fight and will be THRILLED to sit and watch a movie.

Seriously. This one saves my life.

You are welcome.

Holy Hair....

We have been keeping No's hair mostly in braids or puffs, but it is getting really long. When it is wet it is twice this length. When we get out of the bathtub she sits between my legs and all her hair gets combed out, oiled and lotioned. She isn't used to having it down any more and she kept pulling it out to look at it....

Norah has the most beautiful curls and her hair is still pretty soft. I think her curls are going to be the type that grow OUT and not down. It just seems to keep getting bigger. I love it down, but I don't love how snarled it gets from the car seat and naps. She doesn't love it when I have to comb all the growlers out, so braids it is for now. We have been using Curly Cuties products and have been really happy. They smell REALLY good and even though they are kind of pricey, they last a really long time. I can comb out all her hair very easily after the bath and in the morning when I use the conditioner and hair milkshake.

This is how she sleeps each night (braids or no braids). I think she looks so cute with her little do rag... and they are all pink, of course. I helps keep her hair from getting too snarly and her braids from getting too fuzzy.....


As much as I love Norah's hair and love to do it, I am kind of glad that this next baby will be bald as a cue ball until she is about two (if the genetics hold out and she is a little white haired baby like Lu was...). No hair to deal with. ;-)

Happy November....

Halloween Fun.....

Norah wore her costume for exactly 13 seconds. This is the only picture of all three kids...

Lu is NOT a Doodlebop..she is Stephanie from Lazy Town....

(apparently she had to say that a lot)

Argggg. The obsession w/ pirates continues....

Lauren waiting for her dad to pick her up for the Daddy/Daughter dance at school....

They even had flowers... that was the best part according to her...

Nosi is obsessed with her dad's hats. Most of the time they won't fit over her hair.....

Jacob came down from nap like this (he loves to take his clothes off). He announced

"I a butterfly". I had know idea he even knew what one was. Or where he found those wings.

I had been feeding Norah. In the time it took me to grab the camera, take a pictures and turn back around, I found this. Doesn't she look pleased with herself? And yes, apparently my children never wear clothes....