Anyway, everything went well.  A lot of waving of toys while covering one of her eyes and then the other.  Rose put up with it for a little while before she started  to push the Dr's hand away.  She does have a little bit of a lazy eye.  Cheryl and I had noticed it occasionally.  The Dr noticed a slight tendency too.  She said it was pretty mild and not a big deal.  A lot of kids grow out of it.

We were really wondering how they were going to check Rose's eye prescription. but that was over in a second.  The Dr used a small hand held device that just flashed a light into Rose's eye and measured her prescription.  She is farsighted but, the good news is, not enough to need glasses.  The Dr said that was fairly common in kid's her age.

I think Rose's favorite part was scooting around the waiting room checking out all the other kids.  It was a good chance for her to work on one of her new sings, "baby."

My favorite part was taking Rose to any kind of a medical check up and hearing that everything is fine.

Today Erin turned 12 years old.  We had a fun day.  Both Erin and Katie had soccer games.  Afterwards we went to our town's country fair.  Rose still enjoys the privilege of all babies, everywhere she goes she's showered with attention from her sister's friends, from her mom and dad's friends or sometimes from somebody that notices her for the first time.

Rose has added a few new words to her spoken vocabulary; "ow", "whoa", and "woof".

Katie kind of snuck the "ow" in on us.  One time Cheryl and I spotted Katie sitting next to Rose on the couch.  Kate was slapping herself on the thigh saying "ow" each time.  Apparently Rose had been working on this with Rose for awhile. And Rose is picking it up, except she hit's Katie's leg and says, "ow".

We're not sure where Rose picked up the "whoa" from but she dose use it appropriately .  Like when we were teaching her to slide off the couch onto the floor, she let out a dramatic, "whoooa!"

And "woof" of course is where her pal Pepper (our dog)  says.  And it's the answer to the question, "Rose, what does a dog say?"

Cheryl got a surprise this morning.  She could hear sounds of Rose playing in her crib so she knew she was awake.  When Cher went in to check on her, Rose had pulled herself up with the side rail and was standing in her crib.  Another first.

This is Rose standing at her activity table in our family room

Rose has been fighting a cold the last week.  She got a major case of runny nose and watery eyes.  We gave her a week before we called the doctor.  Nothing seemed to be wrong out of the ordinary.  We just thought it was dragging on too long.  The pedi-doctor said that Rose would probably take longer to get over colds because of the DS and the small nasal passages that go along with it.  Things don't drain very well.  Just to be on the safe side he put her on an anti-biotic.

Actually kids with DS can have weaker immune systems so they are almost expected to get sick a little more often but I think Rose has done well this year.  This is the first time I can remember her getting sick since the bout of Bronchitis in January.  Oh, yeah, she did throw up on my birthday, too.

The doctor did say that he could see some fluid in her ears.  I wonder if that affecting her hearing.

Rose is starting to talk more and more.  She's saying "Daddy" and "Dadda" and "Mommy" and "Momma" much more often.  She's also making a lot of K sounds lately.  Katie thought she heard Rose say, "Kay-hee".

Rose is getting a lot stronger, too.  She's got her scooting technique down pretty good.  She's also taking a few crawling steps.  At first it was just one or two steps before her arms let out and she landed on her stomach.  Today she covered about 10 hand steps before her arms gave out or about 3 feet across the carpet. Her hips are getting a lot stronger, too. She's starting to do a much better job of keeping her knees under her when she crawls.  All those exercises that Karen T, her PT, taught us are paying off.  She's had us climbing up the stairs lately.  It's to help her develop strength but also to help her develop an alternating step.

In the evening, Rose was standing against the couch.  Both Cheryl and I saw her lift her foot and then put it back down.  We both yelled at the same time, "She took a step!!"  Well,  OK, maybe we can't count that.

Actually, Katie's 8^th birthday was 2 days ago.  We had a great time.  We ended up playing twister.  It was a challenge with Rose and Pepper getting into the action.  We laughed a lot.

Rose is doing really well with her eating.  She can be a little finicky sometimes but she does seem interested in most of the new foods she gets introduced to.  It's almost like she gets bored with something she's been eating for awhile and loses interest.  Like cereals were a big favorite a few months ago.  Now, forget it.  We try but now it usually gets mixed with milk in her after meal bottle.  

Rose is eating solid food quite a bit; like green beans, macaroni and cheese and peanut butter and jelly.  Sometimes Rose feeds herself, like when she's snacking in her high chair while we're eating dinner.  Actually., she either eats it or throws it on the floor.  Pepper likes this.  He must think it's snack time for him.  Sometimes he'll be so busy vacuuming up food from under Rose's high chair he won't notice that Rose is still tossing out the food.  It's funny to see several handfuls of snacks deposited on his back and shoulders while he's still snacking on the floor.

When its Rose's meal time we try to feed her ourselves. Rose's speech therapist recommended that we place the food in the side of her mouth.  She has to use her tongue more. That helps to develop the muscle tone in her tongue.  Of course we have to brave her molars.  She knows how to use them.  Cheryl's much better at this technique then I am.

Actually Rose is lucky to have Cheryl for her mom.  Cheryl was a Rehab RN before she got pregnant with Rose. Her training and patience have been a huge help to Rose.  I know I am more willingly to stay with what's working.  Cheryl is much better at following the therapists leads and pushing Rose ahead to try new things.

Yesterday Cheryl was out doing some shopping. As usual Rose was along for the ride.  As they were shopping an older woman kept catching Rose's eye, making the sounds and faces that people make when they are trying to get a happy response from a baby.  This is a fairly common occurrence with Rose and one we enjoy being a part of.

When Cheryl made it to the check out line the woman joined her again.  As they were waiting she started playing with Rose again.  

After awhile she said to Cheryl, "I had one, too, you know."

Cheryl thought to herself, "hmmm..., one baby girl? one child with Down Syndrome?"  So Cheryl said, "This is Rose.  You know, she has Down Syndrome."

The woman answered, "Oh, I know, I can tell.  My daughter, Suzanne had Down Syndrome but she died when she was six.  She had a hole in her heart."

Cheryl thought, judging by the woman's age, this must have been 20 or 30 years ago.  Cheryl said, "Rose had a hole in her heart, too, but they were able to fix it.  They can do amazing things these days."

The woman agreed, "Yes, they can."

Cheryl bravely asked, "Did you keep her home with you?  I know it was fairly common back then to put kid's with Down Syndrome in institutions."

The woman answered, "Oh, no.  I couldn't have done that.  She lived with our family.  She didn't walk until she was 4 and she never said more than a few words." The woman glowed with love as she remembered her daughter.  Rose had brought it all back for her.  She asked Cheryl, "I hope you don't mind me talking about it."

Cheryl reassured her, "Oh, no.  I love talking about Rose."

When Cheryl told me what had happened that night I understood right away the special bond she had shared.  It has happened a few times over the last year and each time its been a wonderfully positive experience.  I think its part of the human condition to want to know that, even when we have a difficult task ahead of us, at least there's a path to follow, a path that has been worn smooth by those that have gone before us.  Sure, there may be a few rare individuals that are brave enough to blaze their own trail their whole life but I think most of us aren't that strong, my self included.  We need to feel the support of those around us.  Especially those that are a step or two ahead of us down the path, helping to lead the way for us.  So many people, unasked for, have reached out to us to show us the way.  On this day it was this wonderful woman showing us how much she loved her daughter and how precious her memories were.

This is Rose launching her first rocket.  Katie and Erin and I are into shooting off Estes rockets.  Rose got a rocket from Santa and was finally able to launch it.  She pushed the launch button.  If you look close you can see her sitting on my lap. 

Rose and Erin

Rose and Katie sitting at Rose's fine motor control table. That means she sits in a chair and plays with small toys.

Rose is starting to take a few steps with help.  If you hold her hands she'll walk anywhere from one or two steps to 5 or 6 feet across the room.  We're all getting into it, taking turns with Rose at different times.  Katie greeted me the other day when I came home from work.  She was all excited, pointing out to me, " Dad, I got Rose to walk from here all the way to the kitchen table."  It was about a 5 or 6 foot jaunt that still stands as the record.

Last weekend Cheryl and I attended our first Connecticut Down Syndrome Congress Convention.  Cheryl and Rose took Erin and Katie to their morning soccer games so I could go to the morning convention sessions.  We met at lunch time so I could take the kids and Cheryl could go to the afternoon session.  They did offer babysitting but we didn't get our act together early enough to sign up for it.

The morning session included a speech from Karen Gaffney, a 22 year old woman with DS.  She gave a half an  hour talk on her life experiences; what worked for her, what didn't work for her, how she realized that she had to work extra hard to achieve her goals.  Currently Ms. Gaffney is working on completing her associates degree in education while training to be a member of a relay team that's going to swim the English Channel.  Her  talk was delivered completely from memory without the aid of any notes.  She was very impressive and earned an enthusiastic standing ovation.  To me, as  a parent of a child with DS, the message was pretty clear.  Ms. Gaffney represented what was possible.

Actually, I was very impressed by Ms. Gaffney before I even heard her speak a word.  I had sat down in the auditorium maybe 10 minutes before things were scheduled to get underway and before most of the crowd had filed in.  Ms. Gaffney was standing off to the side of the stage area waiting with the other speakers.  She was a petite, slender young woman, sharply dressed in a skirt, high heels and stylish jacket wearing the corsage that all speakers wore. 

I watched as more people filled the auditorium.  My silly concerns of who's going to sit next to me were mixed with a curiosity about the people around me.  I'd see an individual adult and wonder; are they a professional? are they a parent?  I'd see a couple and I'd wonder what's their child like? how old? what kind of medical problems? how are they  developmentally?  Some older kids with DS were in the audience.  I'd watch them and wonder; how tall? how healthy? how did they carry themselves?  can I see my daughter in them?  There were some babies in the audience, too. Not yet ready to be away from their mom's care.

At the far end of my row I saw a mom settle in to the end seat and park a stroller in the aisle just next to her.  She took a few minutes to make sure her newborn was comfortable.  Then I saw Ms. Gaffney approach them.  It was just a quiet moment,  I didn't hear any of the words that were spoken but I was impressed by Ms. Gaffney's presence and the nuances of her body language.  She touched the mom's knee to get her attention and spoke to her for a few moments with a confident, reassuring look on her face.  Then she turned to the stroller, leaned in and talked and played with the baby for a few moments, just the way I've seen countless people look in on Rose.  Ms. Gaffney's efforts  to bring comfort to this mom and her small child was just a brief casual moment but during it she displayed an example of grace and composure and caring that could serve as an ideal for all of us.

After the speeches I sat in on a seminar in a classroom setting .  The topic was  "Inclusion".  Rose still has a ways to go before she turns 3 and starts school but there's a lot to learn.  And a lot has certainly changed since I was in school.  Needless to say, when I was growing up, there was no inclusion of special needs kids in any of my classes. Now Inclusion of special needs kids is a right that has been compared to the 1950's Supreme Court decision to end the racial segregation in our schools.  Now Inclusion also is a federally mandated right that has special needs kids being included right into the regular classrooms on a full time basis.  As a parent I can see real advantages to this.  It will give Rose a chance to form friendships with all different types of kids and it will give her more examples of behavior to model herself after.

Cheryl. Erin and Rose met me for lunch at the convention. Katie was at a friend's house for the afternoon.  Lunch itself was a treat.  It seems like a simple thing but it was a wonderful feeling to watch all the other families.  In a small way it helps answer our questions about what Rose will be like when she grows older.  Maybe, in some ways,  she'll be like the 8 year old I was sitting across from, full of smiles and laughs, happy to be eating lunch with his dad.

Cheryl has been taking Rose to a "Talk and Toy" play group at our town library.  It's an informal play time once a week for an hour and its a significant event in our lives  It's a group of mom's with their one to two year olds.  We were a little bit unsure about how Rose would do but she seems to be enjoying herself and keeping up OK.  She's not walking like most of the kids but she scoots around fast enough.  Cheryl said Rose was doing a good jog of following along with all the games.

Although today Rose was misbehaving a little bit.  She kept climbing on top of one of the slower crawling kids.  Cheryl had to keep pulling her off.  It might have been confusing for Rose.  Karen T., Rose's PT, has told us to lay on the floor and encourage Rose to crawl over us.  It's fun for all of us and a good exercise for Rose.  Cheryl explained to the other mom why Rose kept climbing on her child.  She was very understanding and it brought out a few stories from other moms about medical problems their children had to overcome.  Nothing major but Cheryl said it was nice to be able to open up and talk about Rose.  There was a mom who's an RN that said that she already knew Rose had DS.  Nurses always know.

Rose is very mobile and she's very curious about the world around here.  She's crossed that threshold where she can scoot out of site and into trouble faster then you ever thought possible.  Never mind the usual stuff like baby proofing the electrical outlets, she's trying to pull over the wrought iron floor lamp in the dining room.  Another favorite thing for Rose to do is to pull over Katie's music stand while she's playing violin (Katie not Rose). And that's with Kate and me trying to hold down the music stand's legs with our feet.  Rose can be an unstoppable force.

Rose is starting  to creep a lot more.  Creeping is what Karen T calls what I thought of as crawling, you know, on your hands and knees.  And actually what Karen calls crawling is more like an Army crawl, with stomach sliding along the ground.  Anyway, Rose seems to use crawling, I mean creeping, for bursts of speed.  It's a lot faster than scooting.  And she can mix up her modes of travel pretty fast, too.  She'll go from a sit to a scoot to a burst of creeping back to scooting with ease.  Cheryl thinks the new interest in creeping has come from Rose spending more time recently with her almost one year old cousin and his 2 1/2 year old older brother.  Even though they're all at different ages and stages of development they seem to sense that they all have creeping in common so that becomes the mode of play.

Another fun toy from Karen T , she brought over her family's old karaoke machine.  The intent is to encourage Rose to vocalize and it does work.  Rose loves hearing herself amplified.  She's making all kinds of noises.  Actually with the echo effect she sounds kind of spooky.  We're thinking of using it on Halloween. We're going to set her up near the front door and try to scare all the trick-or-treators.

Rose is really getting into reading books lately or having books read to her.  It's just been over the last few weeks that she's really started to obsess on it.  We've been reading to her on and off all along but now she's taking the imitative and really insisting on it.  If we're on the floor she'll pick up a book, scoot over with it and put it into your lap.  If you're sitting on the couch, Rose will scoot to the end of the couch near her crate of books, lean over as far as she dares, point emphatically with one hand and yell continually, "Eh! Eh! Eh!".  She's pretty clear when she wants to be. (Now we're working on the sign for book, too.)  And when he gets going, its one book after another.  We try to ham it up as much as possible; different character voices, exaggerated animal sounds.  Some of the books compliment her vocabulary well so we can sign a lot of the words to her as we read along in the book.

Other new signs we're working on; please, thank you, sandwich and cereal.

This past weekend our whole family, all five of us, went to a Halloween party.  There were just a few families there, friends of ours from Erin's softball team and one of their neighbors that we hadn't met before.  The neighbor family had two children, a 2 month old that alternated between mom's and dad's arms as they tried to get her to sleep and a 3 1/2 year old boy.  The older brother was sitting on the floor at dad's feet when we first arrived.  It was a slow realization that there was something different about him.  It must be a similar process that people go through when they first meet Rose.  

After a while Rose and the boy were playing on the floor together.  I was sitting on the floor following Rose, not that she needs it but it keeps me busy in social situations.  

I was near the boy's mom and we started a conversation.  It didn't take long to find our common ground.  "He's had open heart surgery," she told me.  And I said, "Rose has, too."  The mom told me about his heart condition which, it's hard to believe but it sounds more severe than Rose's.  He need a series of operations to correct his defect and he had just had his last surgery a few months ago.  He has a rare chromosomal disorder (not DS) that had lead to the heart defect.  He was doing well now, recovering and trying to catch up developmentally.

I told her, "Rose had an AV canal repair," and then with a serious face and a quiet voice, "it was pretty exciting for a while there."  I continue to amaze myself.  Despite having experienced a deeper and wider range of emotions through Rose than I ever thought possible I am still expressively stunted enough to describe the must profound experience of my life as "pretty exciting".  Oh, well.  I think she understood.

We talked about the school her son goes to.  It's the same one that Rose will got to when she graduates from Birth to Three on her 3rd birthday.  They were very happy with the school and the support they were getting.  Far from feeling like they ever had to fight for any help, she felt the school was doing a great job of providing all the services her son needed.

It was great to see Rose play with her new friend.  He was a lot bigger than her but they were both using scooting as their primary means of transportation.  At one point he led Rose on a tour of the downstairs; out the family room, scooting through the dining room, into the kitchen, down the hallway and then back into the family room.  Rose followed him the whole way, patting him on the back as she caught back up.  Sometimes,  when the got close enough, Rose would give him a quick hug.

Rose also was very good about sleeping at naps and at bedtime.  Rose was sleeping though the night long before we were.  When Rose first came home  Cheryl and I were sharing the G-tube feedings. One of us was up every 3 hours around the clock.  Of course Rose slept like a baby through those.  When Rose was about a year old she started something new.  When I put her down in her crib she would start to cry.  I thought maybe Rose was developing some new medical problem but Cheryl knew what was going on.  She remembered Erin and Katie going through the same thing. Rose was crying because she didn't want to go to bed.  She didn't want to be by herself.  And she was testing us.  It took us 3 or 4 nights of reassuring Rose that, yes, it was time for her to go to bed before she decided to go along with us.  She does occasionally back slide but not very often and now we're ready.

Another big source of crying comes with increased mobility.  When she's trying to crawl or creep or scoot or stand up she may slip and bang her head on the edge of something tat always seems to be in the just wrong place.  Pretty normal stuff, not much you can do about it.  We do try to do what we did with Erin and Kate, just pretend nothing happened and hope Rose shrugs it off.  Sometimes that works but not always.  Once in a while Rose will get a good bang in the head, it's usually that darn coffee table in the family room.  You can watch her reaction progress, the stunned look, the slow realization, the pouty lower lip, the big inhale and then high volume cry.  We'll hold her and kiss to try get her to settle down.  Raspberries to the neck work well.  Usually after a few minutes she's laughing and giggling.

Lately, maybe the last month or two, there's a new type of crying.  It's the kind you use when you don't get what you want especially when you're not quite 2 years old.  Rose has learned that all important skill, manipulation.  I called home from work this afternoon to say hi to Cheryl.  She was out on an errand and had left Rose with Erin.  I talked to Erin for a minute, just normal dad to eldest daughter small talk stuff and then we hung up.  I found out later when I got home that Rose had gone on an extended crying jag after our phone conversation.  At the time Erin was stumped about what brought it on.  Cheryl was wondering about it, too, when she got home.   Later, when we were all together briefly between my work and Katie's swim team practice , we talked it over.  Cheryl finally hit on it.  Erin hadn't let Rose talk to me on the phone.  Normally when I call Cheryl, she'll let Rose talk to me for a minute.  Katie confirmed it, "Yeah, every time I'm on the phone Rose is after me to let her talk."  Another mystery solved.