Getting Over Another Cold                                         November 15, 2000

Cheryl proof read the last batch of journal entries and was amazed at how recently Rose really started crawling (creeping, but I'll call it crawling).  She's crawling so much now it's hard to believe it's just been a few weeks.  Katie's been crawling around with Rose trying to entice her to crawl further and faster.  And even being run down with a cold, Rose has been climbing the stairs with little to no help, too.

It also seems like the added crawling has helped Rose's arm strength (just like Karen T said it would).  She's been pulling herself up to a standing position much more often and with much less effort.  Rose has also come up with a new standing move on her own.  While sitting she'll put her legs straight out in a V-shape.  She'll lean forward and in one motion get into a crawl position with her arms straight and her knees locked with her bottom sticking up.  Then she'll walk her hands in and push herself up into a standing position.  Sometimes Rose will do this on the couch so she'll end up in a standing position resting with her back straight against the cushion

Just in case you're curious how we do the web page up dates, for the last six months or so I've been keeping a written journal, making entries every few days as Rose does something neat or I just feel compelled to write about something.  Then about once a month or so, I'll type them up and e-mail them to my brother who adds them to the Rose Page.  Actually, he only lives 4 doors down the street so sometimes I'll walk them over.

These signs Rose really has down pretty good.  She will sometimes use them herself without any prompting from us:

mommy

daddy

Erin -  right hand tapping back of left hand

Katie - right hand tapping right shoulder

eat

more

bottle

dog - Pepper's sign name is the same as dog

cracker - although Rose uses Erin's name sign instead - they are close

sleep

all-gone - we made this one up a long time ago - works in a lot of situations

bath - used interchangeably to mean swimming too

please

Karen - Karen T made up a tricky name sign for Rose but she got it

up 

down

book

yes - head shaking not the hand sign

no - also head shaking, not the hand sign

hi and bye - the traditional hand wave not the ASL sign

toilet

These signs Rose is still working on.  Some new, some for a while.  Some she's starting to get and some she doesn't seem to be too interested.  We do give Rose some leeway on how to do the signs but she has to be consistent and we have to be able to distinguish it from other signs.

Rose - her name sign is closed hand over heart

I love you

drink

shower

ball

milk

waffles

play

cry

laugh

cat

blanket

shoes

socks

snow

sandwich

cereal

park

baby

telephone

Rose has also started to drink from a straw in the last few weeks.  The mouth end of it has an animal figure on it with less than an inch of straw tip protruding out.  It helps Rose gage how far to put the straw into her mouth.  Rose did take to the straw pretty quickly.  I think her tin whistle practicing helped.  Although the first few times she was more interested in blowing out than sucking in.  Actually she figured it out pretty quick that she was supposed  to suck, probably from all that bottle practice.  The straw has helped cut down on the number of bottles Rose  gets.  She was at 5 a day but now she's down to 3 a day but she still enjoys them a great deal.

Like I said Rose is really enjoying eating a lot more solid food.  Things like:

peanut butter and jelly sandwiches

waffles

scrambled eggs

Crispix - breakfast cereal eaten piece by piece as a "cracker"

all types of crackers

green beans

pasta

port wine cheese spread on crackers

hummus on toast

turkey bits

mandarin oranges - for a while but not a favorite anymore

apples

cream cheese and jelly sandwiches

hot dogs and baked beans - the Kids' Time brand

Nutra-grain bars

yogurt - sometimes

tuna fish sandwiches

carrots

mashed potatoes

canned peaches

One thing Rose does seem to have lost is a tolerance for spoon feeding.  We'll try but usually after just a few spoonfuls (of anything) she either starts pushing the spoon away or signing "all done".  All in all this this is pretty good considering Rose just had her G-tube taken out about 6 months ago.  I think a lot of the credit goes to Cheryl.  I think Rose is very lucky to have her as her mom.  Cheryl's RN training, especially rehab, has given her the proper attitude and confidence to continually push Rose to take the next step.  I'm definitely much more timid in a lot of areas.  Despite the instruction and encouragement from Karen T, Rose's PT, and Jane, Rose's Speech Therapist, I think I would find more excuses to move slower.  Cheryl is much more adventurous and willing to push Rose and Rose definitely responds to Cheryl.

Everybody tries to find a balance between all the different elements of their lives.  Now I feel that balance tipping and shifting towards new and different things.  I don't know how radical these changes will be but it's started with small things.  I am trying to travel (for work) as little as possible and when I do I try to stay away from home for only as long as absolutely necessary.  I'm coaching Erin's indoor soccer team, something I never would have agreed to before because of work demands.  I go into work a little later so I get to see everybody at breakfast.  And I come home a lot earlier then before.  Officially it's so I can take Erin and Katie to their different after school sports activities while Cheryl feeds Rose dinner.  But really its a big help in getting me more involved and more aware of the things Erin and Katie do.  It's also been an opportunity to meet other parents, people I would have never met otherwise.  I've had some interesting thought provoking conversations, usually about or because of Rose, that I would have never had before.  It's amazing how Rose has had such an effect on our lives.  She resonates through each and every day we live.  

One such conversation was with a mom I met at Katie's swim practices last year.  At the time she was pregnant and old enough to be at that age when amnio's are recommended and consideration of these test results and what actions to take can be very stressful.  She told me recently that meeting Rose last year, at that moment in her life, was a tremendous relief.  She saw Rose as a baby, that's all.  Not as a test result to be feared or a terrible decision to be torn apart by, just as a baby and that she knew, no matter what, that everything was going to be all right.

We recently received an email from a mom that had been reading the Rose Page.  We do frequently receive wonderful emails from all over the country and some from around the world.  Mostly moms of kids with DS offering support and encouragement for the Rose Page and also including some wonderful  stories about their own  special lives.  They have always brightened our days.  Cheryl and I have made it a point to share them with Erin and Kate and with my brother Joe, the Rose Page webmaster.   This one particular note recently from this mom made me think.  She told about how she's been volunteering with a group called Parent-to-Parent.  Through them she and her son with DS were visiting new families of children with DS.  I immediately thought to myself what a great idea and how I would love to do that with Rose.  I feel, as I spend the days of my life, I need to do more that helps make the world a better place.  I've already seen in many ways how Rose can bring comfort and joy to everybody she meets.  I would love to be able to bring that kind of relief to other families.  I called the Connecticut Down Syndrome Congress and volunteered.

About Rose Today:

 Rose is doing a good job of communicating.  She signs, has a few spoken words  and enjoys babbling all kinds of sounds.  When she tickles somebody she  makes a, "kkkkhhh  kkkkhhh kkkkhhh" sound.  I was wondering for a few days where she got that from until I caught myself one time while I was tickling Rose.   I was making that same, "kkkkhhh  kkkkhhh kkkkhhh" sound.   Also, like I remember Erin and Katie at this age, Rose understands much more than she has words or signs for.  The other day Rose was sitting on my lap.  She pointed to a small scab on my knuckle,  I had burned myself taking the turkey out of the oven.  I said, "Yes, Rose.  That's a booboo."  Rose immediately starting twisting around so she could look up at me.  She put a finger on a spot on my neck.  At first I didn't make the connection and then I remembered I had recently cut myself shaving.  I tried to catch up, "Yes, Rose.  That's right. That's another booboo."  She's getting fast.  I hope I don't have too hard a time keeping up.

Rose is working on standing up a lot.  Cheryl told me a story from one day last week.  She said it was almost as though Rose was running her own therapy session.  Cheryl had put Rose standing on a chair in our family room.  It gave Rose a view of the backyard where Pepper was playing with one of the neighbors' dogs.  After a while Rose stopped watching and started working out.  Initially she was standing, leaning her stomach against the back of the chair for balance.  Then she started turning around, shifting her weight on her feet, back against the chair, then stomach, over and over again.  Then Rose started to mix in some standing up practice.  She'd bend at the waist,  reaching down and forward to touch the seat cushion with both hands.  She'd be bending at the knees almost crouching on all fours.  Then she'd push back with her arms and straighten back up to a standing position.  She did this for a while and then she mixed in some more moves by shifting her weight on her feet and moving over to the chair arm rest and then moving again to the back of the chair.  Cheryl was amazed.

The plane is almost back to Connecticut and I can't wait to get home.  I am the fortunate recipient of one of the best welcomes home a person can hope for.  When I step through the door usually Pepper  is waiting, sitting just inside, hoping to have his ears scratched. I oblige him and ask for a paw or two and then send him on his way with an, "OK".  By then Erin and Katie have spotted me and are running towards me,  "Daddy!!! Daddy!!! Pick me up!!! Pick me up!!!"  They both jump on me at once and I try to pick them up.  We hug and kiss and tell each other love you's.  I put them back on their feet.  I have to because the next sight I see is Rose scooting towards me across the family room tile floor.  She could crawl, its faster,  but she chooses to scoot, both arms raised towards me, with a big smile on her face, knowing I'm going to scoop her up and hug and kiss her and tell her again that I love her.  I pick her up and squeeze her a big hug.  She gives great hugs. little arms stretched as wide as they can go,  little hands reaching around to pat your shoulder or back.  I carry Rose with me, looking for Cheryl, sometimes busy somewhere else in the house.  I find her, she smiles, "How was you trip?".  "Fine," I say.  We hug and kiss, Rose with us.  "I love you".  "I love you, too." I know I am so very fortunate.  We, this family, are so very fortunate.  We are so very blessed to be here together.          

Just a minor disappointment.  No Halloween pictures this year.  The One Hour Moto Photo machine ate that roll of film.  Oh, well.  We'll try to make up for it with lots of Christmas pictures

This is a good candidate for a new family picture for the cover of the Rose Page.  That's our Christmas tree behind us.  We had just tagged it.  The camera is balanced on a fence post.  I've got that funny look on my face because I'm trying to figure out if the timer is going to work.  Of course, it did.

More pictures of the kids having fun at the tree farm.

The girls are all dressed up, a rare occasion.  We were just about to go out for a formal family picture so we took a few pictures with our camera first.  This is one of the few that Pepper didn't manage to stick a furry tail into.

Here's Cheryl feeding Rose a snack.  These are good times to work on Rose's signing.  Here you can seeing her signing "more".

All Cheryl had to say was, "Rose, say Hi!!!." and Rose gave a nice big wave.

Rose has achieved another major milestone, she's cruising.  The break though came in her PT session this week.  Karen T. has always had a knack for either sensing when Rose was ready to make a break through or knowing when she needs a little push.  Anyway, Karen had Rose cruising around the edge of our coffee table.  Rose did need an extra incentive, though.  She was chasing after the TV remote, kept just out of her reach so she'd cover more ground.

It was early in the morning when Rose called me sissy!  I took her out of her crib.  Mom and Dad were sleeping so it was only me and Rose.  I was just playing with her and she said, "og la sissy." I started to cry, no one, not any person had ever called me sissy!!!

Cheryl told me this story later when we were back home.  Rose  had been playing catch with her Uncle Tim.  They were sitting across from each other in the hallway, rolling a ball back and forth.  One time Rose held on to the ball too long and Tim signed, "Please", to Rose.  Cheryl said that Rose had a look on her face like, "Hey, how does this guy know the secret code?"  Tim grew up with a sister that was deaf.  She has since passed away but he remembers more than enough to surprise Rose.  In general, my family has been very supportive of Rose's signing, giving her first signs as much cheer and attention as any baby's first words.  But Rose is even luckier to have an uncle that can sign back to her.  My mom and dad and brothers and sisters have picked up one or two signs but nothing approaching baby conversational level.  Rose is lucky to have an Uncle Tim.

Christmas day we went to late morning mass.  We walked to 5 minutes to church despite the 10 degree chill and the wind blowing hard.  Rose refused to keep her mittens on and her hands were cold by the time she reached church.  So cold they reminded me of the PICU.  I regretted my stubbornness about walking to church.  I didn't  mean for Rose's hands to get so cold and I didn't mean for those emotions to come rushing back in on such a happy day but they come when they will.  The strangest things can trigger them.

We sat with Cheryl's parents and my brother, Joe.  Katie was in the choir loft singing with the children's Christmas choir.  After mass traditionally, the children's choir will sing a medley.  The congregation will stand in the pews, turning to face the choir loft at the back of the church.  Cheryl had warned Katie before that the final song almost always brought tears to her eyes.  Katie, much like any 8 year old, enjoys seeing her silly parents cry for silly reasons.  After the song finished, I saw Katie signing in the choir loft, "No crying?"  I turned to see Cheryl, smiling, sign, "No."  At least not this time.

We had Cheryl's family at our house for Christmas dinner.  Rose has two small cousins that she enjoys mixing it up with.  They are two pretty rambunctious boys.  The oldest is almost 3 years old.  The youngest is about a year and a half old.  They're both bigger and stronger and faster than her.  There's always a chance she's going to get run over by one of them but it doesn't seem to bother her.  These are kids about her size and they play with stuff that she would like to play with.  So Rose just gets right into the middle of things.

Another break through this morning, Rose used her own name sigh for the first time.  She's been answering to her own name for a long, long time but now she can say it.

One of Rose's favorite Christmas presents

Rose's recent progress really stands out in conversations she holds now.  Using all combinations of communication; signing, verbalizing sound, body language, she is clearly able to express her needs and wants.  Whether it's a particular toy she wants to play with, a chair she wants help climbing on to, a type of food she wants to eat, a person's attention she wants to get or a hug she needs, she lets us know, in no uncertain terms.  Cheryl and I were just saying the other day how grateful we were that Rose is learning signing and how helpful it would be for any baby, whether they were speech delayed or not.  Signing is such a simple to learn and effective means of communication.

And if all else fails, Rose can always just yell at us.  Rose is getting very assertive or getting and attitude, it's one of those two.  If she doesn't like whatever's going on and it can't be resolved to her satisfaction she just starts yelling and keeps yelling, great endurance.  This doesn't happen too often but often enough to make an impression.  One of the things Rose has decided  she doesn't like is being in her car seat on long rides.  Cheryl discovered that singing settles Rose down.   So on a recent half hour trip to Rose's cousin's birthday party we all sang Christmas carols.  We were a little hoarse when we got there but it worked although I'm not sure how Jingle Bells is going to sound in July.  Hopefully this is just a phase.

Rose is getting closer and closer to standing and walking on her own.  Her balance is getting better when she cruises, less of her weight is on the coffee table and more of it's on her own two feet.  Erin also saw Rose standing on her own two feet for a few seconds.  Erin gave a cheer and Rose responded by clapping and smiling and promptly losing her balance and sitting back down.

Rose also got a toy for Christmas that's been helping out a lot.  It's a new walker disguised as a big toy car.  Her other walkers were more along the lines of a  shopping cart with a handle off the back.  Right now Rose puts too much weight on the handle and the cart tips back on her before she can take two steps.  The new walker works great.   Rose stands inside of it with her hands reaching out to either side to hold the top edge of the walker.  Rose starts out by pushing the car/walker ahead of her.  When she starts leaning over at too great an angle she's figured out that she needs to move her feet back under her if she wants to keep moving ahead.  Rose has managed some 5  or 6 step jaunts in this fashion.

Well, as you can tell by the length of this journal entry, I'm airborne again.  I'm flying back from a business trip to Wichita.  At least this time I've only been gone one night.  When Erin heard I was going she wanted to make doubly sure of the dates of this trip.  She's playing a trumpet solo tonight at her school's performing art's night and she wanted to make sure that I was going to be there.  I will.  I'm looking forward to it.  She's an amazing kid.  It's fun to get her reactions to some of the stories I've written for The Rose Page.  Erin is an avid reader and a write of acclaim in her own right. ( The local newspaper has expressed some interest in publishing her story about the day Rose lived.  They were amazed by her 10 year old in sights.  Of course, my story received a polite rejection.  They told me it was, "too long and too unemotional").  I had Erin proof read the last long entry I wrote that ended with the long, detailed, somewhat mushy description of my welcome home.  It was kind of personal and did involve her so I was trying to check to see if she was OK with it.  When I asked her what she though, her answer was dripping with all the sarcasm a 12 year old could muster,  "Oh, it was great, Dad.  Oh, I love you.  Love, love, love, hug, hug, kiss, kiss."  I was immediately over come ..with all kinds of insecurities.  What am I doing?  Why am I writing about something this personal?  Why am I trying to describe something this mushy?  All sorts of re-write possibilities flashed though my head but I recovered after a few minutes.  One of the most important lessons we learned from Rose's time in the PICU is the importance and power of love.  It's a simple but important lesson that nobody should be ashamed of.  Tell those that you love that you do love them.  Every time you do you heal a part of them and of you.  Say it as often as possible.  Three simple words.  I love you.

Rose has another cold.  I don't know where she's picking it up from.  Well, hopefully, these colds will strengthen her immune system for when she gets older.  At least she didn't pick up the stomach puking bug her little cousins down the street had.  Rose is cutting more teeth so maybe that's why she picked up this cold. One of her bottom front teeth is poking through and it looks like maybe another tooth next to it is starting to come through.  Now she'll get more credit for having teeth.  It's usually hard to see her four molars.

Other big news:  Rose is down to only two bottles a day.  She gets one with breakfast and one just before bed.  Everything else is through a cup and a straw.

Rose is also cruising a lot better.  She's making the little leaps from one piece of furniture to the next.  She might be cruising along the easy chair, grab the edge of the coffee table and step across, cruise along around the edge of the coffee table, reach to the front of the couch, step across that gap, and move along the couch until she reaches what she was after.

Rose couldn't quite get over her cold again.  We let it go a week and a half but it wasn't getting any better.  Cheryl brought her in to see the Pedi Dr. today.  She's got another sinus infection and she's on an antibiotic again.  While they were there Cheryl snuck in a weigh in.  Rose weighed 21 1/2 lbs.

One of the fun set situations we've been signing to Rose in is while we've been reading books to her.  We tend to read favorite books over and over again.  It's fairly easy to look up and add a sign or two every few days.  It's good practice for us and it definitely keeps Rose's attention a lot more than a verbal-only reading.  Rose doesn't get every new sign we throw at her but she does seem to get more of them the more she's exposed to them.

One book, The Runaway Bunny, has been a favorite lately.  At first it didn't hold Rose's attention.  It had too much story per page of picture but as I added signing to the storytelling she became much more interested.  It was a little difficult to juggle holding the book, balancing Rose on my lap and making the signs but it's worth it.  We started with just a few simple signs; "I", "you", "me" and "mommy" which fortunately showed up at least once per page.  Rose loves the extra action and joins in on the signing as we read.  Recently we added the sigh for "bunny". Rose picked it up in about two tries and looks especially cute while doing it, her arms raised both hands against the side of her head just above her ears, her fingertips waving back and forth.  

But there are other times that Rose gets noticed that I know other babies wouldn't and it's at least indirectly associated with her Down Syndrome.

It sounds kind of silly but the first one is just how much Rose sticks her tongue out.  Sometimes Rose just sticks it out a little, just kind of parks it on her lower lip, sometimes not at all.  But sometimes she sticks it out, clearly, as far as she's capable of.  Now I know it can all fit in her mouth because she does keep it in quite often.  I've thought about it and I've decided that there's a simple explanation.  Rose enjoys sticking her tongue out.  There must be some pleasurable feedback for her.  And by itself it's not such a bad thing, I mean, look at Michael Jordan, he seemed to do his best work when he was sticking his tongue out.

It does seem to happen most often when Rose meets somebody or maybe that's when we're most sensitive.  Some people will just comment, "Wow!  She can stick her tongue out far."  Actually, it just seems like that.  For most people, it's just been so long since they've stuck their tongues out.  They've forgotten what they're capable of.  Sometimes people will start playing with her, sticking their tongue out back at her, making a game out of it.  Sometimes we let it go but sometimes we'll speak up, "Uh, we're not really supposed to do that." We'll tell them the little tricks we've come up with to get Rose to close her mouth. Dr. Greenstein, the geneticist,  recommended that we just put pressure under Rose's chin pushing her mouth shut.  That didn't work for us.  It quickly turned into a battle of wills, her chin strength against our finger strength.  Instead we came up with a few other strategies.  One is making a hard "Hup, Hup, Hup" type sound.  Rose copies us and that does the job.  Another we added lately is doing kisses.  I think it was a side effect of all the greetings at our big family Christmas holiday get togethers.  Now Rose can pucker up pretty good when you ask for a kiss.  But there is still a slight danger that she's going to sneak in a big lick but it's worth the risk.

The other big out of the ordinary way that Rose gets noticed is when we are signing out in public.  Last week, Katie, Rose and I went out to eat at Giovanni's while Cheryl and Erin went to a Girl Scout meeting.  We were sitting in a booth, Katie across from me, Rose sitting on the bench seat next to me.  I was signing and speaking to Rose, "Rose, do you want to eat bread?" (underlined words are signed.  Actually, that's a lot, usually we'll just sign bread)   As I was doing this I caught the eye of a woman customer walking past our table taking it all in.  Her eyes went from me to a spot somewhere above where Rose was sitting next to me and then slid down until she spotted Rose.  I imagined her whole thought process, "What's he doing? ... He's signing ... Who's he signing to? ... I don't see ... oh, that baby? ... is she deaf? ... can she sign? ... she's so young..."

OK, I'm being dramatic.  I can't read peoples minds but I can read their body  language and signing to Rose can turn heads.  We've been asked many times, "Is she deaf?"  We will, of course, say no and explain that Rose has DS, is developmentally speech delayed and is learning sign language to give her a means to communicate.  People are amazed that Rose can learn signing at such a young age but I think, even more, people are amazed that a less than two year old kid with DS can do something they can't do.