The best thing is it’s great to see Rose getting her own appetite. She is developing a preference for bottle feeds over the spoon feeds but that’s OK. It’s great to see her go into her frantic "I want my bottle" baby act when she catches sight of the bottle.

Actually, she might skip crawling and go right to walking. Rose’s PT, Karen, said that some babies with DS will get around by scooting on their bottoms.

She smiles and laughs a lot. She’s making a lot of good babbling sounds which is always fun to listen to. She also enjoys shaking her head "no" whenever we say "yes". She’ll start shaking her head "yes" and we’ll say "Yes, that’s right Rose." Then she’ll start shaking her head no with a big smile on her face.

This study was done with babies that we’re just starting to sit on their own. Rose was right at this point when we found out about it. Basically it involves working with a treadmill. We hold Rose over the treadmill, trying to get her to support as much of her weight as she will take. The tread passing under her feet triggers a stepping motion instinct that babies have even before they’re strong enough to stand. By working that motion with the treadmill motion they gain the strength and coordination sooner. In the study, babies were walking on the average 3 months earlier with the treadmill. The goal is to get 8 minutes of exercise in 1 minute or longer intervals, 5 days a week. We’re still trying

Going any where new

Actually, we’re all going to be on TV again. We’re going to be helping out with the Children’s Hospital telethon. It’s on FOX-TV channel 61 the first weekend in June.

As one of the more dramatic success stories of the year we've been asked to participate in this years Children's Hospital Telethon. Its definitely a good cause. This is a special hospital. They've helped Rose's whole family in every way possible. We will always be very grateful.

The telethon is to benefit the Connecticut Children's Medical Center. It will be broadcast on FOX61 on Saturday, June 3, through Sunday, June 4. Its part of a national telethon. 20 minutes out of every hour goes back to the local channels. We are going to be on live during one of those 20 minute segments. Yes, we, Rose, Mom, Dad, Erin and Katie, live on TV. Sheesh. Our time slot is on Sunday afternoon at 2:40. They will play a 3 minute taped segment about Rose's experience at Children's and then a brief interview with Rose's family. Actually, I think they may play the 3 minute segment a few times through the weekend, not sure about that.

One of the scenes from Rose's 3 minute story (actually, might be, we haven't seen it yet) That's Rose in the swing and her mom pushing her. Then from left to right, camera man crouching, sound-man and then the producer.

It’s hard to believe looking at Rose now what she went through a year ago today.  Here are some recent pictures of Rose

Sitting on her biggest sister Erin's lap

Here’s Rose playing on the playscape at the park around the corner from our house.  That’s one of her 14 cousins playing with her.

Rose with her big sister Kate on Strawberry the rocking horse.  Erin named it back when she used to ride it.  Rose’s legs are getting strong enough to stand with some support, like the side of a couch or a rocking horse.

Here we all are on the CCMC telethon with Susan Christensen from FOX61 and Claire, Rose’s primary RN from the PICU.  (Yes, Katie was there.  She was actually about 5 feet away from us painting a big banner with a bunch of other kids.  She wanted to be with her best buddy from Child-Life, Mary.)

It was great feeling to help out with the telethon, to be a part of so many good people working so hard for such a good cause was special. And to be there as Rose’s family was very special.  It’s hard to describe the feeling but after everything Rose has been through and done in the last year this really felt like it was her victory lap.

The Button Is Out For Good                                       June 16, 2000

Rose went to see Dr Hight (GI surgeon) today to get her button taken out.  She’s been doing great with the spoon-feeding and especially the bottle for more then 2 months.  Anything that she doesn’t finish with the spoon gets mixed with her formula in the bottle and she almost always finishes that off. 

Rose went to her pediatrician a few weeks ago after more then a month of no G-tube feeds.  Her weight gain looked good (17 lbs 1 oz and 28 ½ inches tall).  We definitely felt she was ready so the appointment was set with Dr Hight a month ago.

The button came out very easily.  It was out and a bandage was over her stomach before we knew it. No complaints from Rose. She was just curious about what all the activity was around her stomach. Her stomach could heal with 24 hours but may take as long as a month.  Hopefully it will heal quickly, it looks good so far.  But it may leak for a while.  We go in for another check in 30 days.  If it’s still leaking then Rose may get scheduled for a quick visit to the OR to get a stitch put in. We’re hoping it doesn’t come to that. There are no restrictions on what Rose can do.  She can still take bathes and go swimming.  We just have to change the bandage once a day or if it gets wet.

Here’s Rose’s first year assessment by Karen T, her Birth to 3 Physical Therapist.

On the non-medical side, Rose has had a very busy spring.  She’s been to probably 30 softball games, 3 of Erin’s band concerts, Katie’s violin recital and a choral concert and more dinners out at Giovanni’s then I can count. She’s a busy kid

Rose goes to school                                                              July 2, 2000

A note from Cheryl:

Rose continues to lead me to places I would never have traveled.  In May, Rose and I were guests at an 8^th grade science class.  The topic was “Genetics, The Human Component”.  The class’s teacher and I are friends.  We are leaders for our daughters’ Cadette Girl Scout troop.  She was actually the first person I told on my own that Rose had Down Syndrome.  It was much easier after that thanks to Diane.  I think she is a wonderful teacher, too. 

Diane teaches genetics with a very human touch.  That is why I felt it important for these students to see, hear, touch and meet Rose.  Yes, she has Down Syndrome.  Yes, she had an intestinal blockage at birth, a heart defect repaired by surgery and the common characteristics of Down’s such as curled ears, almond shaped eyes, webbed toes and a single crease across her palm but you can read that in a book or look at a picture.  Meeting Rose and holding her is another life lesson you can not read about in a book. 

The students were able to sit on the floor with Rose and play with her while I talked and answered their questions.  They saw her want her mommy, watch all of them, smile, play with toys, wave Hi! And make baby sounds.  Most got a chance to hold her.

The students’ comments and questions concerning Rose reflected their understanding affecting someone with a genetic disorder.  They were attentive, interested and asked thought provoking questions.  It was a fun experience for myself also.  I hoped we were able to broaden their lesson about genetics and I think we did by the wonderful thank-you cards we received.

This is Rose posing with one of the two classes she visited

Here are some excerpts from the students’ thank-you cards:

“It was a wonderful experience to have Rose in our class.  You have changed my perspective on people with Down Syndrome ... They are capable of doing many wonderful things.”

“It taught me a lesson ... that children with Down Syndrome are like ordinary people”

“It is possible to live a normal life with Down Syndrome ... I am very happy I got to see a little miracle named Rose.”

“I was very inspired just by holding this beautiful miracle baby ... keep pushing your daughter to be all she can be.  Thank you for letting me sing to your wonderful beautiful daughter.”

“Thank you so much for the visit we will never forget!!!”

“After meeting her, I am already in love with her.”

“Rose seems like a really special kid and you’re lucky.  Even if somethings in your future will be harder to cope with because of Rose, it will be worth it.  She’s bound to be a beautiful human being.”

“The day that you came I was worried about all my work and assignments.  But when you came to the school I felt much better because your mother told us how much you and your family has been through but you are doing OK.  Please come again when you are 2.”

“Seeing someone that actually has Down Syndrome was amazing ... You are a really cool little baby.”

“Advice to Rose:

Good luck and have fun.

When you get older keep striving to do more.  Never get discouraged

Know that people love you for who you are.

Never change.  Keep smiling.

Don’t ever let anybody tell you that you are different. You are perfect”

Click on Thank you to see a photo gallery of more pictures from the visits.

Rose is doing great.  She’s very mobile now. Rose gets around by scooting around on her bottom.  She uses all combinations of scooting sideways and spinning in circles as she moves she moves towards her destination.  And then when she gets close she lunges, flat out on her belly, reaching further then you would ever think possible, until she’s got what she’s after.  And then straddle back through into a sitting position.  She’s slow but she’s relentless. 

Rose is at that age where she’s getting into everything.  She enjoys clearing off the coffee table in the family room or sitting on the kitchen floor banging pots and pans or going after the TV remote.  She gets a huge reaction out of her sisters if she manages to change the channel, or even better, turn it off.  It seems to take Erin or Katie a few seconds to figure out what happened.  They’ll look around the room with kind of a dazed look on their faces and then spot Rose with the remote.  They’ll yell, “Roooossssse!!!” and then scramble to grab the remote from her.  

Rose is standing with help.  She’ll grab our fingers and lets you pull her to her feet.  She’ll stand for a few seconds to maybe 30 seconds if she’s motivated.  Like say she’s trying to reach the remote on the back of the couch.  Newspapers and magazines are a lot of fun for some reason, too.

Rose’s vocabulary is expanding, too.  She still has just the one spoken word, “up”.  Rose has thrown out a few other words like, hi, bye bye, and Ehwin (no R’s) but not regularly.  She yells for attention.  She grabs things she wants and she pushes away things she doesn’t want.  The big way Rose’s vocabulary is expanding is through sign language.  Rose is learning to sign because she’s ready to communicate but isn’t ready to talk.  Speech can be delayed in kids with DS because of the generally low muscle tone, that Rose has, and or delays caused by feeding issues, which Rose is also working through.  The signing gives the kids another way to communicate. Usually as kids grow older and the speech improves they sign less and talk more.  In the mean time all of us are learning some sign language.

When we talk to Rose for certain key words we’ll say the word and sign it.  Sometimes we’ll form the sign with her hands but not usually.  Mostly she figures out how to copy the sign on her own. 

So far Rose has picked up mommy, daddy, eat, more, all done, dog (Pepper), hi and bye.  Rose has also made up her own sign for swimming which she enjoys a great deal.  We’re also working on signs for Erin, Katie, Rose, bath, crackers and bottle.

Rose’s former g-tube site (stoma) has healed well.  It leaked for about a week and a half. We (Cheryl) changed the dressing once a day or more often if Rose was swimming.  It’s been a few weeks or more since we even bothered putting a dressing on.  Rose has got kind of a purplish puckered scar but its better then a g-tube.

Actually Rose got off the g-tube fairly quickly.  Karen T, her P.T., said that usually kids are 2 or 3 years old when they get their g-tube. Rose was 15 ½ months.  Another amazing accomplishment of Rose’s that we are very proud of.  But more importantly, Rose got her g-tube out before the start of the camping season.

We’ve been camping twice this summer.  We missed out last summer when things we’re kind of crazy but we’re starting to get back into it.  We did a weekend trip to Hopeville Pond State Forrest which went very well.  There was a nice pond within maybe 100 yards of our campsite.  The pond had a very shallow beach.  Rose spent a lot of time sitting in the water playing.  That’s when she made her sign for swimming, both hands, out in front, going up and down like you’re splashing the water surface. She kept doing it when we were back at the campsite.  It took us a while to figure it out but eventually we caught one.

Here’s Rose swimming with her mom and dad.  She loves the water. Although you can only do that swishing back and forth thing for about two minutes before your back gives out.

She loves the water.

Here’s Rose hanging out in the tent with her big sisters.

We also made another camping trip down to check out OpSail 2000 in New London.  This was actually a lot harder because we spent an entire day out and about at OpSail.  It was a long day but we saw a lot of ships including the HMS Rose.  Rose napped in the stroller and did fine.  The rest of us were dragging by the end of the day.

Our new cover picture and, yes, that’s the big Rose behind us.

Actually, probably the hardest part of camping was keeping Rose comfortable in her crib.  We used a port-a-crib which seemed to work pretty well but the temperature in the tent was not the even controlled fairly warm temperature that Rose is used to in her room back home.  Even in June and July the nights can get pretty cold.  We had Rose in winter pajamas in a baby sleeping bag with a blanket over her.  She did OK but I think she was a little uncomfortable.  Rose’s room at home is pretty warm and she’s free to roll around all over the place which she really enjoys doing.  I think Rose is looking forward to camping on a nice warm August night.

We took Rose in to have her hearing checked again.  Kids with DS have more then their share of hearing problems because of the smaller ducts in their ears.  Any fluid build up from a cold or whatever can lead to temporary hearing loss.  This is particularly a problem when the kids are young and need to hear well to learn speech.  So, Rose had a test in February which she did quite poorly at.  Rose had had bronchitis in January and still had some fluid in her ears when she went in for the test.  They told us to come back when her ears were clear.  Anyway, Rose had the retest in July and she did much better this time.  The technician said it was a good sign that the fluid in Rose’s ears cleared out. So good news for now.  Rose’s ears cleared. She’s hearing good.  They told us not to come back unless we noticed Rose was having problems hearing.  There’s always the possibility for fluid from some future illness not clearing out so we’ll have to pay attention to how well Rose is hearing.  If she does get some fluid that doesn’t clear out then she could end up with the ear tubes.  Let’s hope not.

Rose had her final check up with Dr Hight the GI surgeon last week.  He took a look at how well her G-tube site is healing and was happy.  So we’re happy no more visits to the GI surgeon/

Rose picked up a little stomach bug.  She made it through lunch OK but then in the afternoon she started throwing up.  (She’s way past the point of calling it spit up).  When I came home from work Rose was still throwing up our at least trying to.  After a while she started to settle down.  Cheryl and I looked at each other.  We were both thinking the same thing.  When Rose had been sick before we had worked out a pretty good routine.  We feed her Pedi-o-lite through her g-tube, increasing the concentration of formula as she got better. Then when she seemed ready we’d start back on the bottle, maybe after a day or two.  Of course now there’s no more g-tube.  We hesitated just for a second before we filled a bottle with Pedi-o-lite.  It’s a lot thinner then what she’s used to drinking. We normally thicken Rose’s fluids to make it easier for her to swallow. But Rose did OK. Some ran out of her mouth but she got most of it.  She was thirsty and wanted to drink.  Anyway, Rose bounced back pretty quick.  She seemed almost back to normal by bedtime.

It’s official.  Rose’s first tooth is breaking through.  Cheryl and Katie have felt it. Of course its hard to see because its a molar.  Kids with DS have their teeth come in in a fairly random order.

Cheryl was pretty excited today.  Karen T (Rose’s PT) had Rose standing on her own for about 30 seconds. Ok, not quite on her own.  She was letting Rose lean her back a little bit against the couch. But I guess it was still quite a sight.  Cheryl said that Rose looked so small to be standing.  She’s starting to lose that baby look.

The matching molar on the other side is starting to cut in.

Erin and I took Rose up to the town pool for a swim after dinner.  It’s been a few weeks since I’ve been in the water with Rose (we’ve had a lot of rain this summer).  I’d already forgotten how intensely she enjoys it. 

Cheryl and I have discovered that we have a special problem.  It’s taken a long time to realize how we’ve been changed by those intense moments from over a year ago.  It’s affected us in different and changing ways but one impact seems common to the two of us. The initial rush of strong emotions took weeks or months to subside or to come to terms with but it left us more sensitive to all feelings and emotions.  I think it left us much gentler than we ever were before.  The edge to our wit is gone.  Any biting sarcasm used for humor and the attempt at scoring a big laugh at a crowded table has largely faded out of us.  It’s not that we can’t laugh, it must just be about different things these days.  Maybe we’re just still learning about our new selves in or new lives.  But it does seem strange we’ve lost the ability to sit around a crowded table, drink a few beers, laugh with the crowd and for a few moments forget about the world around us.  It’s a feeling that we had shared so often in the past and now its gone.

Here’s Rose sitting on one of the “Make Way for Ducklings” Ducks on the Boston Common.  Cheryl said she likes this picture because you can really get a sense of how tall Rose is. 

Rose is working more on standing up.  Karen T dropped off another baby walker toy last week.  Now we have one for upstairs and downstairs.  Actually they have different toys on them.  Maybe one of them will catch Rose’s interest.  Rose will stand with then but she hasn’t yet figured out how to move her feet.  We’ve been pretty sporadic with her treadmill therapy.  She might have been further along if we had been able to stay with it more but there’s only so much you can do.  I guess we just have to admit to ourselves that we have a limit. 

I’m sitting in an airport waiting for an airplane to take me home so maybe I’m more reflective then normal.  I’ve been caught off guard a few times recently by people using the word  “retarded” in a joke. It was a surprise because it was by people I considered fairly open minded and caring.  And it was a surprise because they were expecting me to laugh.  Maybe it’s a comment on me or the kind of person I was.  I know everybody has their prejudices that they cope with on a daily basis with varying degrees of success.  Years ago I might have laughed at these jokes.  But today my first thought is of my own daughter.  Rose has Down Syndrome and she is mentally retarded.  That’s what I think about when I hear that word.  I wonder what Rose will be like when she grows up.  Will she be mildly or severely retarded?  All these things race through my mind, I wonder but I don’t laugh.  There’s no humor associated with that word any more.  Cheryl and I have tried to treat it very objectively but it is still an emotion packed word.  When we first learned that our baby would have Down Syndrome we struggled to explain it to Erin and Katie.  One thing we could explain was that their baby sister would be mentally retarded.  She would learn and do a lot of the same things that any baby did but at a slower pace.  That’s what retarded meant, to learn slower.  Now Rose is a bright and beautiful baby. She is developmentally delayed but she still manages to surprise us everyday with her clever wit and sense of humor. 

Humor at somebody else’s expense has a mean edge to it but it’s easy.  Humor at nobody’s expense can be very challenging to find and express.  Humor at your own expense requires a level of personal confidence that maybe most people don’t have. I’m probably making this a lot harder then it has to be.  Don’t get me wrong, we do laugh a lot these days just not at every joke. 

Actually Rose is literally going through a funny phase.  She usually eats dinner before the rest of the family.  So during our dinner she sits at the table in her high chair munching on a few crackers.  Actually, that’s what Rose used to do.  Starting a few weeks ago we started getting treated to “The Rose Show”.  Usually about half way through dinner Rose will get bored with her crackers.  Then she’ll shift into her high energy gear, laughing, bouncing, doing her coy baby smile, dancing, or her favorite, clicking her tongue while pretending to snap her fingers while making big arm waving motions.  We can’t figure out where she got that one from.

Random things that are happening:

Rose’s 3^rd tooth is starting to cut, another molar.  She goes 17 months without any teeth and then, just like that, she’s got 3.

Rose goes potty.  Yes, she’s actually been using the toilet for the last 6 months or so.  She really telegraphs when she has to go #2.  You know, the usual signs, a little bit of grunting, face turns red.  Anyway, we can usually get her on the toilet in plenty of time, especially if she’s been in the bath tub.  Rose seems pretty comfortable with it.  We’ll have to see where this goes. Cheryl’s talking about getting the potty chair out.  It will be a lot easier for Rose to get to when she starts walking.

Katie said to me the other day, “Dad, how much metal do you have?  I want to build a computer with arms and legs that move.”  I didn’t know how to answer that one.