Once upon a time...

...I had a living room floor, instead of an obstacle course of toys.

...I was able to sleep in.  This morning, even though Claire was gone and I could sleep in, I woke at 5...and at 6...and at 7.

...I had all my Christmas decorations packed up by New Years.  This straggler will be packed up this weekend.

...I had the time, or took the time, to read.  Two years ago, I read 130 books.  Last year, 30 books.  And this year, if my pace continues, I'll be lucky to read 15. 

...I never brought work home with me.  Now that I work part time, a huge pile of papers follow me home at least once a week.

...our third bedroom was used only for storage.  Now it's my favorite room in the house.

...I could stay awake long past midnight.  Last night I only made it to 10:30.

...I didn't know what Veggie Straws were.  These days I have to keep myself from eating them all so Claire has some for ST.

...I didn't have this girl to keep me on my toes, always busy and on the move.

Sie Center for Down Syndrome Visit

On Tuesday Claire and I braved the snow, cold and icy roads to go to our appointment at the Sie Center for Down syndrome.  I'd given myself extra time to get there, but we still ended up just making it to the appointment on time.  The trip ending up taking about 40 minutes longer than it usually does.

Prior to the appointment I'd faxed Claire's medical records, and I'd talked to the program coordinator a couple of times also.  This was wonderful because we didn't have to spend any time the day of her appointment going over her records or history.  The appointment started with the usual dr office things, weight, temp, blood pressure, etc.  The overall appointment took 3 hours, one hour each with PT, ST and the Dr.

PT:  Claire sees Pat Winders monthly, so this was just our normal appointment with her.  Right now the three skills we are focusing on are cruising along furniture, taking supported steps and climbing the stairs.  All of them are hard for Claire, so we are only able to practice a time or two before she won't cooperate anymore.  Claire cruises decently to the left, but really fights going to the right.  Her right leg planted firmly on the floor seems to make her feel safe, and she hates picking it up to take a step.  When we practice stepping we usually lean her over a surface (like a rubbermaid tub) that can be scooted along the floor.  This gives her something solid for support, but it's still easy to move, so that she has to take a few steps. 

I need to find some way for Claire to practice climbing the stairs.  We live in a bi-level, so one set of our stairs leads to a tile entryway.  Not real comfortable to climb onto, but manageable.  The other set of stairs has the gate at the top, so it doesn't work for climbing at all.  Pat and I were discussing this and she wondered if pet stairs (to help little dogs get onto the couch or bed) might work...Has anyone ever tried this???

ST:  Our usual ST, who we see privately, just had a baby.  After skipping appointments over the holidays, it had been quite a few months since Claire had seen an ST.  I was very glad to have one available through the clinic, and she knows Talk Tools as well.  Since Claire's last ST appointment, she started drinking from the straw, and my main question was to make sure she was doing it correctly.  Turns out, she isn't.  While her mouth is closed, she is taking too much straw into her mouth and is suckling it with her tongue, instead of using her lips. 

Dr:  Dr Hickey was very personable and very easy to talk to.  We chatted about Claire's general health and specific concerns I had as well.  Claire has been struggling with sinus infections all winter.  She finished her third round of antibiotics last week, but after about 48 hours, her eyes and nose starting oozing goop again.  So, last night we started round 4.  Dr Hickey thinks it is just winter and that once we get through the miserable weather, she should get over all this stuff. 

We are also transitioning off the bottle slowly, and are down to 2 a day.  As we make this change, I wanted to be sure Claire was still eating and drinking enough.  Dr Hickey said average milk consumption should be around 16 oz a day.  She is easily getting that between her bottles and the cup, with some water as well.  For meals, he said about a tablespoon or two of each food, with a couple of options offered.  I'd given an example of her dinner the night before (2 beef ravioli with sauce and some green beans) and he said that was a great portion size.

The other nice thing about the Ds Center is that it's great to have someone else help keep me organized on what upcoming appointments Claire needs.  We have an audiology screening next month, we will repeat her swallow study this spring, and then she will have her vision tested at 18 months.  After all those appointments, in 6 months, we will have another appointment at the Center.

For Co People:  I've had some people ask about seeing Pat Winders for PT.  Her schedule gets booked FAST (we already have appts through July).  If you want to see her for a consult, and are interested in the Center, that may be the best way to see her.  Right now, the Center's schedule is fairly open.  We scheduled our appt for a little over 2 weeks out because it matched up with other things, but we could have gotten in sooner.  If you want to schedule an appt, here is the info.

My Shadow and Pure Love

Clarie has turned into my shadow.  If I am working on dinner in the kitchen, she is happy just to play underfoot.  But once I start moving around the house she does her absolute best to keep up with me.  She is becoming quite the little crawler, and is wearing a path from the living room to the kitchen, with a few detours every now and them to the bedroom or bathroom.  Just the other night I left her in the living room to run her bath, and when I turned around to go get her she was waiting in the bathroom doorway!

There are kids, though, that aren't able to practice their crawling skills by following after mom.  In fact, they don't have anyone that answers to mom.  Peter is one of those kids.  He has spent his whole life in an orphanage.  He doesn't have anyone to encourage him, to love on him and kiss him. And unless a family steps forward for him soon, he may not have the chance to know pure love.

He turns 4 later this month.  In his orphanage, 4 is the transfer age.  Transfer to an adult mental institution. 

Andrea, from Reece's Rainbow, had this to say about Peter "I wish I had a suggestion about Peter....I have been advocating for him for YEARS. Nothing short of a full grant is going to do much for him, I'm afraid."

A full grant is $20,000, and that is the amount that Patti has set to raise for him. 

And you, yes YOU, can help!

A small donation to Peter (or Olga or Kareen) will enter you to win some AMAZING prizes.  And to help Peter know Pure Love!

Please pray for Lois's family.  Sweet Lois lost her battle with cancer this morning.

Brrr!

Today isn't just cold, it's hunker-down-and-don't-even-leave-the-house cold.  Unfortunately for Claire and I, today is a work day.  My pickup was started LONG before we had to leave the house, and Claire was as bundled as she could be and still fit in her car seat.  This morning at 9am (when I took her to day care) the temp was -12, with a wind chill of -39.  And that my friends, is cold!  I hope it is much warmer where ever you are!

Feeling Much Better

Claire's third round of antibiotics finally did the trick and I have my crazy, smiling girl back again!  I think all that down time when she was sick gave her an amazing energy boost.  She seems to be transitioning to one nap, and there are days that one nap is only an hour long.  Most of the time she does ok with this, but sometimes she is CRABBY by dinner time.  Her milk consumption is still way down still too.  I'm not sure if there is still from being a little congested, or if she just doesn't need as much milk with all the food she eats.

We are going to the ENT in a couple of days just to get her checked out, but until then, this is Claire's new favorite face to make.  Part silliness, part smile!

Fighting Germs

For the past couple of weeks Claire has been fighting a battle with germs, and with a score of germs 2, antibiotics 0, the germs have been winning.  Claire has a sinus infection that just won't go away.  We just started round 3 of antibiotics, and she is finally feeling better.  To rule out any weird stuff we are going to the ENT next week.

I'm way behind on blog writing and blog reading, but today I'm glad to have something other than a sick baby to tend to!