Good Morning!

At 5:45am Hattie was asleep. At 6 am she sat straight up in bed, looked at me and signed "PLAY!" and promptly climbed out of the bed and crawled for the door. She is now playing her Melissa & Doug piano quite loudly.

I understand why normal people drink coffee.

Toddler style reading

I think that my little bookworm has outgrown baby books. Over the last 6 months ago her favorites have gone from Karen Katz' Where is Baby's Belly Button to the Skippyjon Jones books. She no longer pores over board books with one line on each page, but wants to hear me read paragraphs of text, especially if it has lots of rhyming words and rhythm. Dr. Seuss, nursery rhymes and this week, a book called "Chicken in the Kitchen" are all the rage.

She's growing up and its so much fun to watch. She watches my face the whole time I read and anytime I pause at the end of a line she shouts out the last word, or her toddler version of it. We also sign through a lot of books, she's keeping me on my toes trying to learn new signs-if I don't teach her she makes them up herself.

Kiss kiss

I didn't quite get today's post finished, so here is an adorable picture instead.

I'm participating in a blog hop! Please check out these other excellent bloggers writing for Down Syndrome Awareness.

Hattie's little heart

My sweet baby girl is having open heart surgery(OHS) later this month. It was originally scheduled to happen a couple of weeks ago. It was pushed back one day to accommodate a newborn that needed a surgery done at 4 days old. Of course we were happy to change our schedule for that family!

We had not planned on OHS. We discovered Hattie's heart defect when she was just a few weeks old, but hoped that she would grow out of it. When we found out that the hole was not closing, we learned that the type of heart defect she has is often repaired by a catheter procedure, which we expected to do around 3 years of age. We saw Hattie's cardiologist in August for a routine exam(she goes every 6 months) and the doctor was concerned about Hattie's heart enlargement. She informed us that the time to move is now, and unfortunately Hattie is not eligible for the catheter procedure due to her size. So we scheduled open heart surgery! 

Our first appointment was pretty early in the morning.

This is how a family of co-sleepers make use of a 2 bed room...it might look like we just threw the mattress on the floor, but there was some careful planning and safety checks involved, I promise!

We traveled to our university hospital on a Monday so that Hattie could see a physical therapist at our disabilities & development clinic. We were lucky enough to get into a hospitality house within the hospital where we could remain for the duration of Hattie's stay. Although I anticipate staying in Hattie's hospital room throughout our time there, I was very relieved to have a place to unpack, keep our things and possibly take some naps.

We had early appointments on Tuesday, and had a long meeting with the surgeon who will perform the surgery. Chris and I asked a lot of questions-some of Chris' questions involved terminology that I had no idea what he was talking about. The doctor really impressed us with his ability to defend the decision to do this surgery now as well as his reasons to do open heart instead of a few other types of repair. He was not at all offended that we were asking questions, which is something we've dealt with in other doctors, and was kind and pleasant in spite of Hattie's vocal protests of being in the same small room for over an hour. We've met a lot of doctors in the last few years, and have been consistently impressed with the ones at this hospital.

Shortly after the surgeon left, the nurse practionioner that was conductng some pre-op testing discovered the diaper rash that Hattie developed Monday afternoon. We had been warned that cold or flu symptoms could be reason to delay the surgery, but as it turns out, so is diaper rash! There were concerns that the rash was caused by a thrush infection and that the yeast could spread internally during surgery.

So  here we are, waiting for late October to arrive. We will return to the hospital for a new pre-op day, then Hattie will head into surgery very early in the morning. We did learn that she may be out of the hospital within a week if all goes well, so I am feeling pretty optimistic about things.

Hattie's first pony

Our small town hosts a rodeo every fall and we went to a pre-party a few weekends ago. It was an evening of events to bring some attention to our down town area.

The main reason we attended was the pony rides. I was SO EXCITED to put Hattie on a pony for the first time.

My husband tried to warn me that his side of the family does not get along with horses. I brushed him off,but it looks like Hattie picked up his preferences on this one.

Can you see her look of terror? "I hate ponies!"

 Luckily, she was able to briefly reach her hands up to frantically sign "all done!!" before grabbing the pommel again inn terror. The kind pony handlers offered us a refund and clearly felt terrible that our toddler was crying in response to their gentlest pony.

Lesson learned. Hattie likes petting animals, not riding them.

The New Normal

Ah, the fall television season. We don't watch a lot of TV, in fact, we don't even own one. But I do watch some programs on the computer and recently started watching The New Normal, a new comedy from NBC. This is the story of a couple's quest to become parents-Bryan and David find a surrogate in Goldie, and we get to watch their relationship unfold. Goldie's school age daughter and bigoted grandmother round out this unusual "family."

Episode 3 depicted David, a doctor, as holding back his excitement about the new baby until the pregnancy was far enough along to be certain that the baby was healthy. As I watched him explaining all the tests to his partner and Goldie, I could feel myself becoming tense. I wondered where they were going with this, what would David and Bryan do if some of the tests came back positive. This is  a hot topic issue in the special needs world-the quest for a perfect baby. I plan to write about this issue in more detail later in the month, but it is certainly unnerving to watch a program created for entertainment-a comedy-brush the surface of such a complex question. The clip is here.

The show quickly went in another direction before I could get too upset. David and Bryan are harassed at a store by a horrible man who proclaims that its wrong for them to become parents. A short time later David tried to stand up for a man with Down Syndrome(played by Eddie Barbanell) at his gym. After punching the jerk who insultingly says "the retard's holding up the line," the man with DS shouts "Hey! I don't need you to fight my battles for me, fag!" David was understandably dismayed and offended.


I loved it.

I constantly hear remarks about how sweet and kind and loving people with DS are. But like any other stereotype, it allows people to see Hattie and others with DS as a generic label, instead of taking the time to really get to know an individual. Sure a person who has DS might be kind. Or they might be a jerk. Or, most likely, they are both of those things, and so many more, depending on the day they are having.

While I'm reserving the right to be pissed off if the show goes in a direction I don't like with the heavy use of prenatal testing, for now I am really enjoying the way the writers are using humor to take on all of our deep dark prejudices.

Eating like a big girl

Hattie recently turned 2 and seems like such a big girl in so many ways. Mealtime is one of the areas where I notice it most. We've spent a long time giving her tiny bites of food, mostly because she just didn't have any teeth for so long! But now she is holding large portions on her own, taking appropriate bites(most of the time) and in general pretty independent in feeding herself.

If we raise our pinkies, we look like ladies, regardless of how messy we are.

 She's also acting like a big 2 year old girl in her food preferences. She knows what she likes and doesn't like! She fakes me out when she started eating solid foods- avacado, asparagus, broccoli-you name it, she'd eat it. Now she's Miss Picky and rarely eats vegetables unless her Papa cooks them.

We go through a lot of bananas in one week.

 Luckily she signs a number of her favorite foods, so she can easily ask for them. She does know the sign for vegetable, but I don't think she's ever initiated using it...

A picnic at one of our favorite parks, just before the weather turned cold this week.

She's even drinking out of a big girl straw cup. She has a very cool stainless steel straw cup made by Thermos and its pretty fun watching her open the lid, take a few sips and return it to the table.

Of course, her favorite part of mealtime is the end-which she signals by throwing pieces of food over the edge of her booster seat for the dog, who waits patiently below. This is a ritual I am trying to put a stop to, but I am not hopeful.

31 for 21

October is Down Syndrome Awareness month and I've decided to participate in the 31 for 21 challenge. The challenge involves blogging every day in October to raise awareness of Down Syndrome. For more information, check out Big Blueberry Eyes, the host of this blog challenge. There are links to other participants, if you'd like to check them out!



I am, of course, participating because Hattie has Down Syndrome. This challenge is open to everyone, not just the parents of children with Down Syndrome. If you blog, think about it! You just have to blog every day, the entries don't have to all relate to Down Syndrome.

The Extreme Parenting Video Project

I'm not sure what I want to say about this video except that it is beautiful. Things have been a little rough around here lately and stumbling on these words from some veteran parents was just what needed to happen to me in this moment.







Please be sure to visit the creator's site, http://elizabethaquino.blogspot.com

Take that, Pinterest!

Today I tried to do a variety pre-writing activities with Hattie. Unfortunately she was not even a little interested. Marking playdough with various instruments, poking toothpicks into things and even coloring-all boring. The most excitement came from throwing the pieces across the floor.

I did manage to scrub the kitchen floor - it was gleaming and free of all thrown food bits for once! And after dinner I brought a couple of plants inside to re-pot. Unfortunately I attempted to carry the pots and Hattie at the same time and disaster struck...but wait! Black dirt on a clean white floor is a perfect canvas for little fingers to make marks in!

Seriously, I didn't even initiate the idea. I was trying to keep her out of the mess when she scooted over and started making little lines in the dirt. So I sighed, then laughed and sat down to finally have some pre-writing play success.

Animals at the Library

The public library hosted some animals from the zoo today. Brilliant, I thought. Hattie loves animals, this will be a summer program activity she can actually enjoy. Unfortunately, the room was packed with kids and we sat far enough back that she couldn't see much, and the presentation was designed for school age kids who get excited about animal trivia, not toddlers who just want to touch and lick things.

Fortunately, her cousins also attended and we had a lovely time looking at truck books and stealing their cars during the presentation. Hattie and her cousin, S, who is just a few months older than her, shared books and held hands on the way home. S is quite possibly the sweetest kid I've ever met.

Hattie & Elliot

I was editing some old drafts and lost the date that I originally wrote this. I think it is from some time in April of 2011...Becky, do you remember when Elliot started drinking from a straw? 

 My very good friend had a baby exactly 17 days before Hattie was born. Becky and I enjoyed being pregnant together and now we are REALLY enjoying our babies together. Our families had a dinner and grocery shopping date last night(you do what you have to do to have a social life, right?) And Hattie and Elliot just STARED at each other. Elliot kept reaching out to touch Hattie's hair and they held hands a couple of times. Mr. Elliot has started leaning on his hand to sit unassisted for a few minutes, which we were VERY proud of! He's been eating cereal for a couple of weeks, and last night Becky and her hubby were buying avocados and sweet potatoes to start doing some baby-led solids this week. Hattie was quite jealous of Elliot's diverse diet, but I asked her to be patient. She agreed and went back to her Hattie Snacks.

At the end of our date, Elliot was reaching for a cup of water. Becky let him chew on the straw and...HE DRANK IT! Of course it was immediately spit out, but it was still fun.I love watching the two of them meeting milestones and look forward to them growing up together.

About a month ago I posted about teething. According to this photo, Hattie's lower central incisors and upper right central incisor are fully erupted. Her upper left central incisor, lower lateral incisors and upper left canine are all partially erupted-7 teeth exposed to the air!

Yesterday Hattie was very irritable and there was a lot of biting going on. Upon investigation this morning, Hattie has 3 white, swollen areas on her gums, so I believe that both her upper lateral incisors and her upper right canine are all preparing to erupt.

I'm excited that she'll have 10 of her baby teeth by the end of this round, and hopeful that she'll continue to get new teeth monthly until we're done. I am impatient for her to be able to eat a wider variety of (non-pureed or overcooked) foods. At the same time, I'm a little stressed out. These days before the teeth actually erupt seem to be the most painful to her and we are both not quite ourselves during teething days.

Thankfully, Chris was able to rock Hattie to sleep last night after a few failed nursing attempts and a long walk that did not result in any sweet dreams.

A lack of Hattie Snacks

 As I previously mentioned, we are in the midst of a major teething event. Hattie is bravely facing the eruption of at least 5 new teeth. Unfortunately she thought that biting while nursing might be a good way to deal with her teething pain. This is not the first time we have dealt with biting, it happened when her first 2 teeth came in and she quickly learned that it wasn't a good idea. 

This is where it hurts.

Without going into all the delightful details, I will tell you that this round of biting has been a greater challenge. My attempt at correcting the problem did not work well with her developmentally appropriate dislike of being told "no" and for 2 days she bit me every time she latched, then immediately started crying, sometimes even before I could tell her "no."  And so the only nursing she did on Monday and Tuesday of this week happened while she was asleep.

We practiced some appropriate biting with Sophie the Giraffe, then bit every animal in Hattie's collection. This may have sent the wrong message.

Thankfully she woke up nursing today and has mostly back to normal all day. I expect the biting to continue until all of these teeth are in place, but at least it is no longer her immediate reaction to an invitation for Hattie Snacks.

I don't do fashion, I am fashion

Hattie and her NeNe enjoying a little girly time during NeNe's visit.

Although I can't prove causation, I can suspect it.

Why yes, I did enjoy a spaghetti dinner.

Hattie has been SUPER CRANKY lately. Chris and I have been at our wits end. Last Sunday I felt a tooth poking through her upper gum and thought "Finally!!" After her 2 bottom teeth erupted last summer, we haven't seen any signs of teeth. I decided that the crankiness is probably the result of a new tooth coming in.

I was wrong. It is the result of 5 teeth coming in.

I felt around in her mouth this morning(which she loved) and could feel sharp little slivers coming in on either side of her 2 existing teeth, the 2 spots directly above her existing teeth and one totally random spot on the middle of her left upper gum. Assuming more teeth aren't preparing to break through, this poor girl is dealing with 5 new teeth at once.

Hattie's signs to date-24!

dog/Fievel
Mommy
Papa
Hattie Snacks
book
more
all done
wash hands
potty
play
cat
eat
water
meat
come here
hi
music
sing
tickle
baby
sit
cards
shoes
Hattie
train

emerging:
fruit
vegetable
Nene
computer
car
diaper

IN THE BOX

For ages now, at least 4 months, Hattie and I have been working on the concept of putting objects into a box. This is important for fine motor skills-it shows that she has the eye-hand coordination to direct her hand to a specific place and release the object. It is also important for cognitive development, it is a huge leap to go from taking things out of a box to realizing that she has the ability to create- to fill up the boxes and bowls, to build things instead of just taking them apart.

So we've been working on it. She is a star at emptying things-laundry baskets, candy jars, diaper boxes, ANYTHING! But when I hand her a toy to put back into the container, she tosses it over her shoulder and laughs. Often she even claps in joy at thwarting me.

And I have been frustrated. SO FRUSTRATED. We had an evaluation with an occupational therapist last week and she noted this activity, and handing items to an adult as skills that Hattie needs to work on. So yesterday we got out some toys and I showed her how to hand them to me, making much of it when she got it into my hand. Today it only took a few prompts for her to successfully put a variety of toys into my hand from a box. I put the lid from the box in my hand and kept saying "For Mommy!" and she was like, "cool, lady, here ya go. Now clap for me!!!" SUCCESS! Would it work if I held the box itself? "No big deal, why do you look giddy? The cow is in the box, who cares, clap for me!"

Oh Hattie, I am sorry. You figured out this skill in 20 minutes. I see that I had failed to find the correct way to teach you in a way that worked for you all this time. As we go on in our journey of learning new things, I'll try to keep thinking outside of the box.