Ah ha!

I managed to capture on film the moment that Ace realized her toes and feet were ATTACHED to her body.

This is our latest and still greatest party trick. As far as Lu is concerned, if having Down Syndrome means being able to do this, she is IN!

Her name is Norah, but you can call her Dobby

I uploaded pictures the other day and I found this series of photos. I did not take them.

Someone in my house likes to clean the fridge,

and wash the eggs (????),

and take pictures of herself doing it (so she can get the credit, I suppose).

OR, just one more reason why our nanny Maria is worth her weight in gold. SHE forces the children to work (apparently) while I am away.

I have yours boxed up and ready to ship.

Why we love IKEA

Ice Cream and free babysitting...






Yes please.

Summer Vacation..

Words cannot express how happy I am that school is about to start. There will be no more fighting (at least during school hours) with the big kids and I can have a schedule again. I finally get why moms dread the dog days of summer. For me, it is because my children turn into dementors. They pretty much have sucked the joy out of all things fun this summer (I like them still, but seriously???? ).

We are going to have another summary post because I am very lazy. AND, I never get on the computer anymore and I just want to get a #*$&@ laptop and be done with it already. I want my blogging life back.

--We have our new nanny Maria. She is AN. ANGEL. STRAIGHT. FROM. HEAVEN. I worried about the expense and drama of having someone in our home all the time while I was here (some of the time). She is awesome. It is like having a smarter, more patient version of myself here with the kids. When I am running around trying to be the kids fed so we can get out the door, she has the time to help Norah (and at some point, Grace) practice the things she needs to learn how to do on her own; walking, dressing herself, going down the stairs, using a fork, etc, etc. I have seen SUCH changes in Norah already. She is confident and sassy. She is not a baby anymore (and as Maria told me on about day four "you must stop doing everything for her and stop treating her like a baby"). I am so proud of Norah and how hard she is working. I watch Maria turn every single experience during the day into a learning lab. Me too. Sometimes Maria deals with the big kids and I do the littles. All day long there is an internal dialogue running through my mind and it goes something like this "who can I make this activity help Norah practice her gross motor/fine motor/social/cognitive/speech skills?" All day long. It is work, but it is also WORKING.

--Grace is so cute and happy. She has a special face that is reserved only for her father (or, in her world, the bringer of all things wonderful). It is a sight to behold. It is almost like her face will split in half because she is so happy. I am still dealing with my issues over her life and future but have gotten to the point where her Down Syndrome is so much a part of who she is that while I still wish I could change it, there is the fact that changing that would change who she is because it is part of who she is...and I like here just how she is now. Confusing? Yes.

--Jacob has finally, finally mastered the potty. He has also mastered riding a bike with no training wheels. I really didn't think those things would happen in the same month, but this kid always surprises me. He also just figured out the whole "I am sick, can I have a Popsicle/candy/stay up later" thing. Good boy. I am always amazed and thrilled to see how gentle and kind he is with the little girls, especiall Norah. The other day he came in to tell me that she had taken her diaper off. He was very quick to follow up with "Mom, it was an accident. Don't get mad at her, just take a sticker off her chart, don't get mad mom". For the record, I don't get mad when NORAH takes her diaper off, but I do get mad when JACOB decides to take his big boys off and use the backyard as a bathroom.

--Lu has an opinion on what she wears. There is an excellent chance that anything I like, she will hate and vice versa. We had quite a time finding a dress for her baptism (for all you non LDS readers out there...in our church kids are baptized at age 8 and some families get a special "sort of nicer than a normal church dress" dress for their kids. Our main difference is that she wanted to look like a street walker (in the sweetest 8 year old way) and I wanted her to look 5. We finally found something that both of us liked, and by that I mean it had sleeves and no rhinestones and was longer than her knees. For her that meant she chose the color and it was the one dress that fit my standards but I liked the least. We both win/lose. Good times ahead for this mama and daughter team. I need to fortify myself before I will even think of school shopping with her.

--Derek has been working hard. It is a blessing to have work that he loves and does so well, but I had forgotten how it used to be. He used to put in these kind of hours all the time. Now it is the odd week or two, but still. I am thankful for his hard work and how well he takes care of our family. It isn't easy to pay attention to all the kids, help me out and do the things needed around the house all on 3-4 hours of sleep. But he manages to do it and I am very, very thankful for that. I am also thankful for the thousands of times when it would be so easy to snap at the kids (because after all, he is tired too and has put in a full 8 hours of work by lunch time) but instead he almost always puts on a patient face and listens to them (because seriously... they want to say more in the last 5 minutes of the day than in the rest of the day put together). Just when I think I can't hear ONE MORE Sponge Bob quote, he saves the day and acts interested. He sees them so little each day that it isn't OK for him to be short with them. It isn't technically ok for me to be short with them either, but they get other interaction with me all day long. He gets that and is really, really good about it.

--Me..... I am busy, busy, busy. Shocking, right? Mostly I am just spending my time taking children to doctors, therapists, preschool and trying to fill the needs of all my kids. I am tired. I can do this, but it might take more Diet Coke than normal. I am thankful for the DVD player in the minivan that lets the kids watch their kids stuff while I listen to things like books on tape and NPR..things that make me feel like my mind is still KIND OF working. I am meeting lots of really cool people that I might not have crossed paths with if I wasn't doing all the stuff for the little girls. I am very thankful for that.

We are off to Utah for a visit with friends and family in just a few hours. We have a few birthdays, two anniversaries and some hard core catching up to do while we are gone. I am looking forward to having my mom pay attention to my kids, teaching Lu to water ski, sleeping in, eating at Dairy Keen, celebrating my 11th anniversary and eating at Training Table this week (I am seeing a food theme....).

Happy End of Summer to you all! See you in a few weeks.

Two years later, part two...

Her two year old photo shoot. I know, I know, the theme song of "Shaft" is running through my head too. She is a total Foxy Brown in the is outfit....

Look Grandma, this is WALKING!!! That is right internet, we have a walker!

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!

Hey! She is an Arrested Development fan so this apple didn't fall TOO far from the tree......

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.... ).

Two years later, the story of Norah...

This picture was taken today. She ALWAYS wears these goggles, silly girl.

As I sit here and type this I STILL cannot believe that my baby girl is two. TWO! (that is a really weird word if you look at it long enough.. it is one of those that you start to wonder if you spelled it correctly b/c it looks so weird..).

Norah and I when she was 4 days old. Photos by Lucky Red Hen.

Check out that chicken skin on her arms. It still looks that way. These are also my favorite colors to put her in to this day. This was the smallest preemie dress I could find at Walmart the day we brought her home......

Norah 4 days old, at Oh Judy's house for my impromptu baby shower in Utah with Blog friends...

I love this picture because it shows the bracelet her mom gave her as well as how small she was. the bottle is bigger than her head...

N pretty much lived in the sling for the first 6 months. She was so SMALL.

Norah on her first birthday. She still has the cheeks, the afro and the yummy lips. She is the SPITTING image of her maternal grandmother in this picture.

...to be continued.......

Well, what do you know?

I sent around a few pictures of the baby to my family the other day. My mom wrote back and said something to the effect of "is it me, or does she look like Lu?". I see a lot of Lulu in our little Ace, but wasn't too sure. Then I took this picture.

Maybe it is only when I shoot them straight up the nose, but I'd say these girls were sisters, wouldn't you? Granted, in our family we aren't used to sisters looking too much alike. Before Acie joined our family in person, I was very, very focused on the things that should would have that would make her different. While people with Down Syndrome could all pass as cousins, the family genetics come out loud and clear too. She looks like us, because she came from us. Not even her upturned eyes, lower ears and sweet little nose can mask that. What a happy surprise.


This is the picture that I am thinking of using for her birth announcement. I took some photos of the kids for my husband's fathers day present (don't worry, he doesn't read this blog...so we are safe). It has been a long, long, LOOOONNNNGGG time since I have felt like taking pictures of my kids. One more tiny step in me feeling more like myself these days.....

I spent a lot of time today trying to get a picture of Norah. I kind of lucked into this one.

Nono spent most of the morning looking like this....

She has some teeth coming in and has been a serious cranky pants

This one, on the other hand, is doing a really good job at practicing being defiant. Today he had the following punishments... he had to wear clothes, he was NOT allowed to vacuum, he was not allowed to have veggies at lunch...(these punishments defy logic, I know..but they work)

.....and about 12 seconds after this picture was taken, he had to have the dreaded "sad bath". This is Cubby's version of "the last resort". It is one of the only things that really works with him(this is a child that actually laughs at most consequences....). If you promise not to call CPS on me, I'll tell you what it is....

But he sure is a cute little stinker. Yogurt face and all.

And now I will leave you with the cuteness that is Ace. She has been chewing on her tongue a lot lately, it is pretty cute. Also, look how translucent her skin it!!

Lulu is out of school next week. She has been pretty good lately. There is still the requisite eye rolling going on, but mostly she has settled down a bit. She started piano last month and really, really LOVES it. Her most effective consequence is NOT being allowed to practice. She is really good too, her teacher tells me that she picks up the theory really quickly and is moving pretty fast. She is going to be in the recital this weekend. How crazy is that? She really loves to play and seems to have a talent for it, so I hope this can be something that she can work at for the next few years..... I can't believe she is going to be 8.

It is what it is....isn't it?

Those are words that I have learned to live by.

Yesterday I learned it again. I think.

I took the little girls in for their doctor evaluations at the infant development center. This is step two on a ladder of about 50 steps. Our hope is that at the top of this ladder, they will both have been given the additional help they need to lead productive and independent lives. Both girls have special needs and we needed the doctor to give them a "diagnosis" so they can be referred to treatment. Her Royal Majesty is still a bit of a mystery for all of us. We know that there ARE delays, but we don't know what is causing them. We are just going down the list and trying to rule out things. This doctor asked about a thousand questions and then wrote lots of notes. He ended up referring her to a program for physical delays. This one is what I am the most excited about. We are finally going to get to the bottom of her hip displacement issues and aggressively address her low muscle tone/loose joint issues. There are other things that he noticed. Things like the fact that she doesn't hold her sippy cup on her own very often and when she does, it is with an open hand on each side instead of grasping it. She also doesn't hold onto things and try and walk. She fists her hands instead and uses them to help balance. This led the doctor to think that there is some neurological stuff going on that we haven't ruled out yet. She has very low muscle tone but has great fine motor skills (that is usually not the case). His feeling is that she doesn't know HOW to coordinate her muscles and that somehow the signals aren't going from the brain the to body the way that they should be. Also, with her weight issues, he asked some very good questions and told me that at this point he thinks her lack of weight gain is metabolic, not "bad mommy". She feeds just fine, it just doesn't stick. This has also been my feeling for the last few months. All in all, good questions and good things for me to use when I start my new dialogue with my NEW pediatrician. I liked my last one OK, but I felt that each time I went in I as getting lectured. My concerns about Norah were met with some sort of lecture about how I wasn't being a good enough mommy (you aren't feeding her right, you aren't giving her enough attention.....). I felt that the things that I felt were bigger issues were kind of brushed aside. Things that we are now finding out actually ARE issues. I just didn't know enough to push back.

Socially, Norah is just fine. She bossed around the baby, the social worker and finally the doctor during the whole visit and did her best impression of a two year old by refusing to stand on her own, carry her own weight when assisted with standing OR point to her nose when asked (and we have been practicing that one). I know she can do all these things, but today she just couldn't be bothered. I could have told him that she was on target socially. Her cognitive receptive skills are in question, but since she picked up the words "crazy", "poop" and "shut up" from her siblings this week, I am pretty sure SOMETHING is getting through to her. All of us think that at some point she will catch up and be just like a typical girl.

Ace is much more cut and dried. While there is a large range of abilities within the diagnosis of Down Syndrome, all our kids need pretty much the same thing. They all have low muscle tone--so that means physical therapy. They need help learning and practicing how to do everyday things like feeding and dressing themselves, that means occupational therapy. Our kids are 50% more likely to have hearing loss--usually because of their smaller ear tubes that cause more infections. That means audiology or an ENT. Our kids also often have difficulty learning to speak clearly, that means speech therapy. Our kids are 15 to 20 times more likely to develop leukemia, so there is that check up (so far, that has been our pediatrician). 50% of our kids are born with serious heart defects that need surgery (Ace does NOT have this, thank goodness), that means cardiology. You get the picture and that isn't even the end of the list. There is just doctor after doctor after doctor that needs to be in the loop and as the parent, it is our job to the be the team leader and make sure that we are all working together and keeping each other informed. That feels very overwhelming to me. I am still learning what I am supposed to watch for and fight for.

So, the doctor stuff for Ace was pretty much talking about the programs and what to expect, touring the facilities and trying to decide if I want home care or to take her to the center. I also had to sign lots and lots of papers (ALMOST as many as buying our house). Luckily we have a really great social worker who guides us through this process. At one point in the meeting she and the doctor asked me if we were going to get a medical card for Ace. When you get a medical card for your child, it means that the state pays for her therapies. I actually debated this one. We currently have private insurance and it would cover lots of this stuff. I wasn't sure I wanted to have the state pay for something that we could pay for ourselves at this point. I decided to do it because the social worker pointed out that Ace deserves to have this so that for the rest of her life, she has access to free medical care and free therapies. We will not always be here for her. Also, programs get funding based on how many kids are enrolled, so the more they have enrolled in the state funded programs, the more therapists they can hire, the more they can offer. Fair points all around. The biggest one though? We already paid for this, with our taxes. When you make more money, you pay more taxes, MUCH more--so why pay twice? Why not take that money and donate it to the local center, or hire a better therapist for extra work, etc? Anyway, that was my consideration. Things that you never realize you will be thinking about for your 8 week old baby. That feels overwhelming to me.

I try very hard NOT to think about the battle ahead when it is time for school and we want her to be mainstreamed. What if we have a school district that doesn't want to do that? Do I have it in me to fight that? I try NOT to read the new information about how people with DS are much more likely to have Alzheimer's and now that they are living longer...well, I really, really worry about who will take care of her when we are gone. I really, really try not to think about the time when she is aware enough to know she is different but still wanting to be like all the other kids (typical teenage stuff). I already pray that there will be a nice group of kids in our church and school that will include her and see her for the little spirit that she is and not be like I was as a teenager. All of these things are overwhelming for me.

Here is the strangest part of the whole day. As I was signing the papers to apply for the medical card, both the social worker and the doctor started to look a little bit uncomfortable. They explained that for her to qualify, they needed to give her with a Stage 2 diagnosis. That means that they had to declare that she is mentally retarded. They wanted to know if I was OK with that. They acted like they expected me to burst into tears. I was a bit confused because she is retarded. Isn't she? Isn't that part of what Down Syndrome is? They explained that she isn't retarded yet. To be retarded means you score lower than normal on an IQ test or that you are slower (which is the real definition of retarded--to slow) than typical people at the same tasks. Right now she does everything the same as other babies, so she isn't retarded yet. She is just a baby with an extra chromosome. At some point, she WILL be retarded. It ranges from mild to moderate, but it is going to happen. Saying it doesn't change it. It is what it is. Apparently some parents get really upset at this point. They don't ever want their child classified as this and never accept the help from the state. I understand that everyone deals with this differently, but for me it doesn't change what it is.

I know that Ace, like ALL people with Down Syndrome is going to be capable of learning. Some things will be easier for her than others. I know the laundry list of possibilities. She could be very high functioning or she could be low functioning. I don't know what her package is quite yet. It is what it is. Calling it one name or another doesn't really change anything, does it? Maybe I am just not there in my journey as a parent of a child with special needs. Maybe in a few years I will look back on this and be shocked at how little I know (heaven knows that I do that about adoption, almost daily). At this point, it just doesn't matter to me what you call her, that doesn't overwhelm me, it is DOING it that leaves me unnerved. I guess I just left that meeting with the feeling that out of ALL of the things that are currently running around in my brain and making me feel overwhelmed, calling my child retarded just isn't one of them.

It reminds me of a conversation that I had with Lauren the other night. She is finally getting what it means to have Down Syndrome (for awhile she thought that anyone with flat features and slanted eyes had Down Syndrome--including her Korean friend Nicole and the president of our church, Thomas Monson.....). She was crying and telling me that she is afraid that kids will call her sister "retarded". I told her that it sounds like that is not a nice thing to hear, but that in fact her sister IS retarded but that just meant that she learned things a little bit slower. She would be better (and therefore NOT retarded) at other things, like making friends and being kind to others. It wasn't something to get too upset about because it was true. We just needed to help other kids understand the correct meaning of that word.

I might be the only one here that doesn't have a problem with the label. Just the repercussions....

Two posts in two days. Look at me go!! You can thank the tummy bug that Jacob continues to fight for this one. I haven't left the house yet.

Also, several of you noticed the plane. Man, you guys are observant. Yes it is a private plane. More on that tomorrow.....

So you think you can....

blog?

dance?

use the computer w/ out a tyrant of a 3 year old hanging off your arms?

Hahahahahahah.

You can't.

So, I have been putting off blogging because I have all these great, thought provoking posts in my head that I wanted to get onto paper, but it just doesn't seem to happen. So, no blogs. The good news is that my brain is still, apparently, working because the posts are still in my head. I have also decided to get a laptop so that I can write/blog/keep in touch on the go. I am never at my house these days, and when I am, Cubby is such a stinker that it isn't worth getting on the computer (that top picture was from when I offered him a snack of hummus, and he baptised the computer in it. So, hummus is out....) I also fall into bed at 7:15 each night (that is 15 minutes after all children are deposited in their rooms--what they do after that, I don't care, as long as they are quiet!). I am just FULL of excuses aren't I?

So, I have vowed that I will post something every day this week to get back into the habit of it. I even got up extra early to do this. I miss this part of my life and my blog friends. Several of you have had babies since I last wrote (welcome to the world Miss Ainsley Jane and Miss Meera Grace and Mr. Chief...), some have gotten married (remember my "manny" last year? He married his sweetie-pie last weekend...) and others have just continued to write witty posts that inspire me. More than three people have also told me in the last week that they depend on my blog posts to keep up with me and I am letting them down. There is also a small fear that my mom might come and steal my kids in the night (well, the baby and Lu and possibly Her Majesty Norah--but not Cubby...) so she can actually see them again.... so here it goes.... here is my post and here are some pictures of the last few weeks.

We have been knee deep in laundry here because the dreaded tummy bug finally got to us. Cubby got it first. He had the nerve to get sick the night we had some of our friends over for dinner and grilled fillet mignon. Doesn't he know how much that stuff costs? The injustice of cleaning steak off your carpets at three in the morning is more than I can bear. I might have been just a BIT more tolerant if he was puking the normal dinner of mac and cheese and hot dogs. Seriously. I have never been more grateful for washing machines in my life. I imagine that the pioneer women didn't enjoy the nights their kids puked up whatever it is the pioneer kids eat any more than we do, but it took them lots longer to get the laundry done (and I can see it now--if pioneers had blogs "today Hyrum vomited after we had a special dinner of buffalo. Doesn't he know how long it took me to hunt/kill/skin/cook that thing? The nerve...). Oh wait, they did have blogs. Except they called them journals.

See. My brain really is gone.

Anyway--here are the woodland creatures over the last weeks. We visited Utah and saw all the family (almost all, HI Kate and Matt!).

We have been taking turns visiting Dad at his office. This is his view. No wonder he always sounds calm at work. You can't see it but Jacob's head is blocking Alcatraz and to the left is the Golden Gate Bridge. Wicked view.

We let the kids use my camera phone during our flight out. They caught some really good shots.


This is one of my favorite pictures of the mid's. They seem like they are the same age now, instead of a toddler and a baby. They play really well together and really enjoy being together. It is really sweet to see (and ABOUT time)....

Hello Lu and the lovely grandparents! They are known as Pappa and Sweetie around these parts. They still think my kids are charming and fun, which is really lucky for us.

Lauren and her beloved cousin, Abigail. This relationship is the best example of hero worship I can think of. Lauren really wishes we lived closer and so do I because Ab's is a great girl.

This must be why I can never find those cute diaper covers for Norah. Lauren did this look for her and then proudly declared "for Halloween Norah should be either Minnie Mouse or Oprah!". I am not sure which part reminded her of Oprah. The hot pink head cover? Maybe?

Yeah, I totally see Oprah.

See you all tomorrow!