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.