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It just couldn’t wait till Quailday….

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1….2….3….4….5….6…. count em! 6 assisted steps!!!!!!!!! I am thrilled. It happened Saturday while she was on stage after her Santa visit at the Down Syndrome Family Alliance Christmas Party!  Soooooo incredibly proud of her. Maybe Santa whispered in her ear while she was screaming at him. Or maybe she felt like rocking the wild piggies atop her noggin. Most likely it was the pink-hi-topped-Garanimal-pseudo-Chuck’s-shoes. Either or any-way- she’s on her way! I had asked her to stand up and she grabbed my hands and when I told her to come here- get this….she did!

Sweet baby girl….

Quailday: The Toddler Diaries

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I keep forgetting to mention that she has tooth number 10! It came in about a week ago and I will be thrilled when they are all in. The poor lamb is  gnawing her thumbs in her sleep- ugh.  When it’s obvious that she’s having pain before bed we give her Motrin, but I’m sorry to say we don’t always see a sign of it until morning and lo and behold she now has a little spot on each of her thumbs from it.

I tell ya, beauty is hard to come by in this house. Between the teeth and the hair! See those precious piggies up above? Well I’d do them every day if she wasn’t so argumentative about them! And those bangs- well, we’re trying to grow out a page-boy style before doing any cutting. Each morning I put a little clip in her hair to pull the bangs out of her eyes. As long as she knows what I’m doing she’s content with it. Probably because she’s figured out that once Momma leaves for work and she’s in the car and out of direct line-of-sight of Daddy she can yank it back out. Oh well…

The girl’s on the move these days. She’s crawling and pulling up regularly on everything. Considering what a long-time coming this accomplishment is you would think we would be tickled. Of course what it means on a day-to-day basis is we no longer have a captive audience for various activities. Twice this month she’s just gotten up and left her therapy session! I’m guessing that insistent part of her is about to majorly assert itself. We may have to hire professional comediennes to practice her exercises and activities with her so that she can be continuously entertained!

Ok- so we are almost caught up on cute school anticdotes- the last couple of weeks:

11/18/10: After about five minutes, she decided I wasn’t as fun as the toddler dance party going on at the other side of the room and crawled over there. She spent the next fiveish minutes standing and sitting and standing and sitting some more while giggling at herself in the mirror. The toddlers were about to start story time so I tried to get her to crawl over to where they were sitting. She wouldn’t, so I crawled over to her and we raced back over to the toddlers with her crawling on all fours the whole way. Ms. Ren was reading a book about ducks. She asked “What sound does a duck make?” and the toddlers started quacking. Usually, she looks around at everyone thinking they’re strange when this happens but today she looked up at me and quacked along with a loud “da da da da.”

 11/19/10: I picked Abby up and she pointed to where she wanted to go. First she pointed to the bright yellow leaves on the tree so I lifted her up to grab one and said “leaf” and she repeated “ee.” She sat up from laying on her back on my legs eight times today! I had her do it a couple times and she was getting frustrated so the next time she sat up I layed back down on my back. She thought it was funny to crawl up on my belly and grab my mouth/cheeks/nose. So everytime she sat up from laying I’d lay down and let her crawl on me. She also did a good job of staying up on all fours crawling to get to my nose. (She’s a big fan of knocking her sister over as well 🙂 After that it was time for snack. I spent a full five minutes trying to get her to crawl to the door to go outside for snack. She absolutely would not do it. She did everything from getting excited and flapping her arms to putting her arms on her hips and pouting at me and laughing when I crawled over her to try to encourage her to crawl but it didn’t happen. I gave in and picked her up and we went outside for snack. During snack, she signed “more” everytime she got close to finishing a cracker. Once snack was done she looked up at the book holding the door open and signed “book” so I got it down to read it to her.

11/23/10: Then she crawled over to me and I had her sit up from laying on her back on my legs. She did it three times on both sides. Each time she sat up she grabbed my hands and clapped them together like, “Hey, look what I just did. You should be clapping.”

11/29/10: I sat her up on the ball in between the two bookshelves on the red carpet and she stayed up there with me rolling the ball for a whole 15 minutes. She could reach the toys on the shelves when I rolled her to the side so she would grab one and play with it then throw it and laugh. She got frustrated a couple times and laid all the way forward with her hands on the ground but she sat herself back up and kept going. After about 15 minutes she got really frustrated and started yelling. I asked her if she was done and she signed “done” so I helped her down. The toys she grabbed were all over the so I asked her to help me clean up. She picked up a toy and I told her/showed her “drop” them in the toy bin. She put away three of the toys by herself!

Quailday: The Toddler Diaries…

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See that huge smile? Well this week’s theme is a collection of reports of the recent naughties at school. Or as I like to call it- ” A-cute case of the Naughties”. I have to say though between that huge grin of pride and the wrench my heart takes when her little lower lip quiver pulls it out of my chest; she tends to not get nearly the discipline she should for her antics…sigh…life’s just unfair I guess!

10/13: She was exceptionally mischievous today. When I first got there, the toddlers were out on the playground. I scooped her up and took her down the big slide twice and then she stole my keys out of my pocket, dropped them, and laughed.

Then we played with blocks and cups stacking them up and knocking them over. She kept grabbing one and crawling away with it. When I would ask her to give it to me she did that cute thing where she holds them really close to her and turns away with a little grin.

 10/18: I got out her toys and put them on one of the round tables. She crawled over to me slowly with lots of pretend sleep breaks.

10/27: Sorry we made such a mess. She was a little toddler tornado today.

10/28: She got distracted from the story by one of the toddler’s awesome new baby mohawk and kept petting the top of his head. He got annoyed and held her hand to make her stop and they sat there holding hands for a couple minutes. Then she decided to crawl around to the other toddlers and give them pats on the back.

11/2: Ms. Ashleigh told me that she’s noticed she will be sitting at the round tables and when she turns away and looks back over there, she will have pulled herself up to stand against them. She still wouldn’t do it without any help for me though… little stinker. 

11/16/10:  Then she went on a bit of a hair pulling spree. She saw one girl’s hair and grabbed it. I told her “no pulling” and “be gentle” and she pouted at me. Then she crawled over to a table and stood up to get to her toys I put on it. We played with her toys for a while, reaching for them and dropping them in the bucket. Then she saw another boy nearby at the table and shuffled a few steps over to him (She moves her feet so much more to get to other toddlers at the table than when I’m trying to get her to reach). She patted him on the head and then pulled his hair before I could stop her.

Good thing it’s a-cute and not chronic!

Quailday: The Toddler Diaries

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 Before I get into more of the daily journals, I have to announce that she’s willingly vertical these days! It’s coming slowly, but it’s definitely coming. As I mentioned in Asheville she seemed to suddenly get that she could choose to stand her own self up and started. Since then there have been more instances. Being true to her nature though, you still can’t “make” her do it. She’s got to want to. But the good news is, she wants too! She was home with the stomach flu last week and luckily it passed faster then her contagious period so we got some quality one-on-one time before I succombed to her little gift. She was so stinking cute and cheerful! After a night of barfing interludes occuring every 30-45 minutes I woke up to her sitting up in bed and chattering to me about everything around us. She’s very into saying, “What’s that?” and “Right there”, while she points, index finger out, thank you very much. I’m so happy that I no longer have to allow her to stick it up my nose in order to encourage her perfection of this skill! Through out the day she repeatedly named her high chair, signed Momma, tried to put her bib on, brushed her hair with her hairbrush, signed drink, said cracker and attentively watched me try to explain how we barf into the bowl rather then bucking back to spray paint the room.

And can I tell you my secret dream? I’ve debated saying it out loud. I’m about 53% sure I’m wrong. But- I hope with every fiber of my being that I’m right and I do think it’s possible. I think I’ve mentioned that in October we noticed the Quail having ALOT more energy. It seemed to coincide with her moving into the toddler room. It also coincided with her starting back on singulair and pulmicort. Those steroids are really the most likely culprit for the ants in her pants. I know that. But here’s the thing, last year when she started taking them. No one noticed her being more active. I’m sure it could affect her differently at different times. But here’s my secret dream- that the reason for her increased energy is that the hole in her heart has closed. I think about this, dream about this and pray about this routinely now. I know some people think that if you put good thoughts out there in the world and visualize them it actually works to make them come true. I don’t know what I think about that. But it can’t hurt. A girl can dream. We won’t have another echo until next July. The reason this even occured to me was when I suddenly remembered her cardiologist telling us that we may think she isn’t tired now, but wait until her heart is repaired- she will be like another person. She’s be a madman tearing around. Well she sort of is these days- at least for her. So if you are reading this and you are of the praying or thinking good thoughts makes them come true sort of persuasion- would you mind adding the thought that her VSD could close on it’s own on your list?

Anyway, time will tell. Now back to October in the Toddler world:

10/5/10: The toddlers were out on the playground when I got there today so I tried doing most of our stuff out there with her. She picked out her puzzle to play with first so we played in the grass. She pushed the circle in by herself and then a few other toddlers came over to play with us. At first it was a little overwhelming for her, but she watched a couple of the kids putting puzzle pieces into their spots and copied what they did. She got the oval and the square in after that.

She did a great job using her kneeling positions to get to the ball and pick it up when I asked. (I’ll add in here- this has been coming along too- and is exciting. I don’t think she is trying to properly crawl- it looks more like it would take more effort to flop back down on her belly sometimes if she just has a couple paces to go and is focused on getting to something in front of her. When that’s the scenario she will now take a couple of regular crawl strides before sitting back up or flopping down to her belly. It’s so cool to watch!

Then Zuzu’s class came outside and Zuzu ran over to say hi. The Quail was so excited to see her she waved and blew kisses and they held hands through the fence. (This friendship is so stinking sweet. I’ve been trying to “use” it to my advantage. A couple of nights ago Zuzu was zooming around the house in her birthday suit while got the Quail ready for a tubby. She started her favorite game of running up to the Quail, stopping short and hollering something then running off to start over. The Quail wanted to add a hug into routine and was giggling so hard in anticipation of her sister coming back that she was willing to stay standing while she waited! Now that’s what I call working your PT into your daily routine!)

10/7: We were on the swings for about 10 minutes. She thought it was really funny when I stood in front of her and pushed her by her feet. I would say “Pick up your feet” and she held them up for me to push and laughed. Then she wanted to play in one of the playgrounds. She tried to pull herself up in it and I gave her a little boost. She stood up with her arms on the side, no belly touching for about 5 minutes dropping a toy car and watching where it went while I picked it up for her to drop again. Then she sat down and we played peek-a-boo through the holes of the playground. Then she saw one of the toddlers scooting by her on a plastic horse and pointed to him so I sat her on another horse and pushed her around following him. Some of the other toddlers started crowding her though which was distracting. She’s handling that much better now. She didn’t get upset she just nudged one of them out of her way and crawled somewhere else.

10/11: I got out her cups and worked on two-step commands of “put the cup down” and “stack the cup” she did really well with this and went really quickly so she could get to the knocking cups over part of the game. Then I put the cups on top of the big foam arch and put the smaller foam arch in front of that to help her get up the big one easier. She got over the little one with no trouble. Then she spent the next few minutes trying to crawl up the bigger one, taking rests with her head rested on her arms, and sitting up and signing “please” to me before trying again. Eventually she was able to grab one of them and I grabbed the rest for her. Then the rest of the toddlers came back inside. Ms. Ashleigh got out some books for storytime and the little bookworm crawled right up close to her and signed “please” for story time. After storytime was over I crawled away from her and she followed me over to a wall. I tried to do some standing with her back on the wall since we haven’t done that for a while. She wouldn’t put her feet down at first and then put her feet down but tried to weasle her way into hugs instead of standing. I’m a sucker for Quail hugs so I let her get away with it but I distracted her with toys and she leaned back against the wall.

Gratitude Journal:Gratitude for a sibling…

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Let me start by saying that it may seem an oddity to end 31 for 21 with a post about Zuzu- but really the intention is to show my gratitude for both of the girls and the family that they have made us. Bethany blogged about siblings of children with special needs a while ago and the post stuck with me. As a sibling of a woman with special needs I’m aware of some of the research surrounding the topic of siblings. I’m aware that it’s been said that 80% of the attention in a family with a child with special needs goes to that child. I know it’s important in a family that we celebrate everyone. That in order for us all to continue on our journey together happily we all need to each feel important. That the Quail needs to know what makes her special outside of her Down syndrome and that Zuzu need not feel slighted because of it. We want Down syndrome to not necessarily be what makes our family extraordinary, but rather just an ordinary part of our daily lives.

Part of their daily lives right now is each other.  I want to remember this time when the sight of each other brings the biggest grin to their days. I know there will come a time when they might not see each other the same as they do now. Right now their view is wrapped in love and innocence. These are some of my favorite images and memories from the last 20 plus months of the stisters together.

I know that lots of people worry that having a sibling with special needs is a burden to the family. Frankly I worried about just having a second child and how little attention my firstborn would get and how she would suffer from that. I worried about her little fall from being the entire center of our worlds and how she would handle it. And that was long before any diagnosis entered the picture. So I’m sensitive to it. I’ve been looking for it. I hope anyone that reads this and has that worry can have it abated just a tiny bit and begin to picture the good and love and compassion that can be generated because of it. This generation that gets to grow up with a sibling with special needs in their home- they have been blessed with learning a new kind of normal. One that might help to make our world a little more compassionate one day. Maybe a little less judgmental. Maybe one where the child who needs our love and support very much doesn’t have to even fathom that the people that love them best could even think of calling them a burden. We’re all special. We all have needs. We’re all unique. These girls of mine, right now at least; they see the blessing in sharing their days with each other.

1. During my barfy 5 months of early pregnancy Zuzu was insistent on following me into the bathroom while I barfed my daily contents out. She was completely unphased by this and would frequently hold my hair back and pat my back. Occasionally she even brought her snack in to eat while she watched the show and kindly offered me some to fill my now empty belly. What upset her was if I tried to shut the door so she didn’t have to witness it. That was criminal in her mind.

2. During our bedtime routine I would lay on Zuzu’s bed and read her stories. I would ask her about different baby names. She got stuck on the Quail’s real name and would refer to her as Baby Abby.

2. During our bedtime routine she would take a dolly blanket and lay it on my belly and pat it telling Baby Abby to sleep tight.

3. When we came home from the hospital she immediately went to Baby Abby- declared her by her full name: “Baby Abby Abigail Charlotte”. Said, “I love you Baby Abby Abigail Charlotte. ” and kissed her toes as she had been practicing with Gramma Char.

4. She then brought over the welcome home card she and Gramma had made her and tucked it into her carrier.

5. I was pretty nervous about nursing the new baby in front of her. Since she was still nursing I was worried it might create frustration or anger. The very first time though she very politely and quietly, if not woefully sat down across from us and watched with tear-filled doe-eyes as I nursed her little sister and was clear that sissy went first. She was so sweet about it I let her join in and our tandem relationship was born. Thankfully in hind-site I’m grateful for her graciousness in this arena. Because of Zuzu, the Quail was able to have a full breastmilk supply up until 15 months even though nursing was so difficult for her and she was never able to nurse regularly.  Without Zuzu’s continued interest in nursing throughout our dry spells in pregnancy and continuing after she was born I might not have been able to have the supply base to continue to provide for her. What a priceless gift.

6. That very first tandem nursing session, Zuzu instinctually reached out to hold the Quail’s hand. They’ve been frequent hand-holders ever since then. In the shopping cart, in the backseat of the car, while watching TV, through the fence at school…I have a photo of their little hands entwined it’s one of my happiest images.

7. Within a couple of days of the Quail’s birth, Zuzu was bursting at the seams to go back to school and relay her change in status to big sister. When she arrived that first day she announced to everyone who she passed by that “Baby Abby Abigail Charlotte is here! She used to live in the hospital but now she lives with us!” She happily posed under the announcement that had been hung up at school for a picture.

8. Bravely one night she announced that she was leaving Momma and Baby Abby’s room as she was getting ready for bed. It broke my heart that she was so accepting of it. It was probably one of the first separations I felt of her and I. Of course, I did what any post-partum, hormonal, sleep deprived momma would do. I told her she was welcome to come back in and sleep with us. We’re still working on correcting that 🙂

9. At the 1 week birthday for the Quail, Zuzu made us all hold hands (baby included) while we sang Happy birthday to her and the a few rounds of Barney’s “I love you.”

10. At an early on playdate the Quail was happily sucking on her Sophie Giraffe teether when another kid decided they wanted a turn with it. As soon as Zuzu heard the high-pitched scream of her sissy she went running to engage in a not-so-friendly tug-of-war round to retrieve it. Generally I don’t condone aggression in the girls, but I admired her instincts this time.

11. I’ve heard from multiple school mommies that their little kids have asked to get their own Baby Abby. I’m fairly certain it’s due to Zuzu’s adoration of her baby sister. It’s always come from kids in her class.

12. M is a hard consonant for the Quail. So it’s no surprise that I’ve yet to hear a regular Mom from her her. On the other hand, she’s managed to nickname Zuzu Ada as an approximation of her real name. It’s surprisingly distinct from Dada and itty-cat.  

13. I keep trying to capture on film their giggling together. Sometime in the last 6 months Zuzu has decided that the Quail loves nothing better than to be scared by her. Each time she does it I cringe as Zuzu comes barreling around a corner, stops about 2 inches from the Quail’s nose and hollers, Boo or Butt, or some other random word. I repeatedly am about to reprimand her when I hear the tiniest giggle come from the Quail. And so the sequence gets repeated. Those two seem to get something about each other that’s obviously only meant for them. They both love a silly joke and are equally delighted at the anticipation of it more than the quality of the material

14. About 4 months ago Zuzu started repeatedly announcing she wants another brother and sister for her birthday present. As unwilling as we were to oblige her at the moment I was secretly thrilled that she wanted it.

15. Zuzu doesn’t seem put out by all of the Quail’s therapies. She generally wants to use the time to watch a show or to join in cheering her on. It’s not uncommon to come in and find Zuzu initiating whatever the last activity she saw us working on with the Quail. We’re going to have to be extra watchful come stair-climbing practice.

16. Zuzu’s ability to interpret what the Quail is hollering about.

17. Her interest in signing and teaching her sister signs.

18. Since the Quail was born Zuzu has requested matching outfits. Zuzu has been an independent dresser since about 18 months. Meaning she needed to be the one to choose her outfit or you were in for a debate on the merits of polka-dotted dresses with pockets versus floral-printed skirts with pockets that held her garden rocks more easily. This then translated into her desire to be the one to pick out the Quail’s outfit. It isn’t every day but boy if there are some cute jammies in the Quail’s size, you best figure out a good rationalization as to how the orange in her jammies matches the red in Zuzu’s if you combine it with a yellow headband since red and yellow make orange. And trust me- I only wish I was making up that kind of example.

19. Zuzu’s empathetic aches and fevers that just happen to coincide with the Quails.

20. Zuzu’s insistence that she be picked up first at school so that she can come along to get the Quail. When we go into the Quail’s room she runs to gather up the Quail’s things and holler out a greeting that she’s here.

21. Their matching strawberry blonde locks, sparkling blue eyes, mischievious grins and strangley identical giggles.

Quailday: The Toddler Diaries

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I tend to wear my rose-colored glasses on the back of my head. In other words, I may be filled with worry and doubt looking forwards, I may be emotionally volatile or obsessive in the present, but I also tend to mostly remember the positives of what happened in the past and not dwell too very much on what happened way back when. I frequently and quite literally forget the bad or rough patches. Call me a romantic, an optimistic, delusional or great coper- either way it is what it is. And it never really causes too much trouble right?

Well, just to be clear that every day in her new class isn’t sunshine and roses I’ll share this from class:

9/21/10: “The Quail was great when we first got there and even crawled away from me when she saw a toy she wanted to play with. Another toddler going for the same toy accidentally stepped on her hand though. She was upset for a few minutes, but let me put her back down. After that she was fine and would play with me but was less interested in the other toddlers or moving away from me. I really think that once she gets walking she’ll be great over there. It’s just tough for her to be down on the ground with ten other energetic babies running/falling around her.”

That little incident is one of my biggest fears with her moving in with the Toddler room. But it wasn’t an injury- just more of an upset and really it’s happened rarely since she’s been in there. She also seems to recover more quickly from those types of upsets which is ultimately good for her.

9/27/10: “The Quail was in a great mood today but even more stubborn than usual. She was already in the toddler room when I got there today and she was doing great. Miss Ashleigh told me they’ve been trying to keep from picking her up so she crawls when she wants to go somewhere. She wouldn’t crawl to me though. She would start to crawl towards me then lay down like she was too tired to keep going then sit up and sign “please” and flap her arms up and down in frustration. I didn’t give in and eventually she gave up and tried to pull herself up to stand using the round tables.”

It was around this time at home that we noticed that she would follow us into another room or if she heard Zuzu or Lovey she would perk up and ditch me to go see what they were up too. It’s so hard to not give in and pick her up at home, so it’s good that there are others with a stronger constitution to help her work through it!

9/29/10: “When I first got to her school, the Quail was finishing up an art project so I hung out in there with her for about 10 minutes. She also tried to pull herself up using a chair, the tables, the refrigerator, my leg, and anything else she could grab.Once she came down off the block I couldn’t make her sit still if I wanted to. Today I pretty much just followed her around and tried to work different activities into what she wanted to do. I had her crawl over the foam block to get a pretend phone (she did this three different times). Then I answered the phone and told her “dad’s calling, say hi dada” and she reached for the phone and said “hi da” and then hugged it. So cute! Next, I got out her puzzle. She almost got the star in by herself, but got distracted by the mailbox of the house. I put a puzzle piece in the mailbox and she pulled it out. Then I told her “open the mailbox” and put the toy in the mailbox” She did both. Then she just wanted to “mail” me puzzle pieces so we took turns with that. After about 5 minutes of this she went back to playing with the puzzle and got the square puzzle piece in completely by herself.”

I probably said it before but I just love how Miss Mattie seems to “get” the Quail and lets her take the lead while looking for teachable moments to get the work in. The outcome is still the same- in this example learning how to get the puzzle together, but her way of getting around to it is so much more successful than when we or other therapists have “drilled” her on a particular activity.

And the grand finale for this week’s post and her busy Toddler Room days in September….

9/30/10: “The Quail pulled herself up to stand two times in a row today! We stayed in Ms.Patti’s because the toddlers weren’t doing anything specific. First I worked on the wheelbarrow position with her for puffs and she crawled over my leg and I held her up in wheelbarrow while she reached with one arm (always her right I think) for puffs. She was able to hold her self up for a good 15 seconds each time before she would rest. She did this four times. Then, I got out her toys and she wanted her Puppies book. I read it once and she signed “book” and “please” so I read it again and then again. She kept signing “book” and “please” so I put the puppies book in the red toy bucket. She crawled over to get it. She tried to lift herself up but didn’t quite get it so she sat down and I heard her say “doggie” and then she signed “book” and “please” again (Ms. Patti heard doggie too). I told her to go get it and that’s when she pulled herself up. She grabbed the book and plopped back down so I read it to her again. Then, she wanted something else in the bucket so she pulled herself up again!”

It was the Saturday morning after this that she pulled herself up to stand in her crib with the only assist being our wild crowd cheering of her efforts! We’re so proud of her.

Up next month is her saintly ongoing battle with the wheelbarrow position and the start of the Toddler Shuffle!

Mommaday: reflections

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The other day both of my girls became suddenly sick. The Quail developed a fever of 103 and Zuzu’s ear suddenly started gushing forth goo. Both seemed to come on suddenly and out of nowhere. That morning we had been playing and planning our afternoon. The first post-nap cries told a rewrite in the script. It most likely was just a bad cold for both. But it struck me how differently the same apparent virus seemed to have settled in to both. The Quail woke up raspy. Which is her m.o. Zuzu with a goopy ear. Which is her m.o. Same virus- two different paths. Both required care- similar but different.

This is a well-worn path for both the girls and us grown-up caregivers. The first year of Zuzu’s life she was sick with ear infections from 7-13 months. They required fairly continuous medication, much missed school, many tears and even more sleepless nights. The first year of the Quail’s life the colds tended to head downwind. She didn’t require as many MD appointments and meds, but did land herself in the ER 3 separate times with two week long hospital stays. After she was released the second time a decision was made to keep her on maintenance breathing treatments throughout the rest of the RSV season. Since then the girls have been fairly healthy. But the season is back and I feel a little tick starting in me worried about how this season will go. The difference being we know better what to look for with both girls to treat them more thoroughly before either reaches the need for a hospitalization. Or so we hope and pray.

So when the cries started; the calls to the on-call MD started as well. The  decision was to start Zuzu’s eardrops and assuming no fever or worsening she could wait to be seen on monday by her regular pediatrician. I went ahead and started the Quail’s breathing treatments as well. The other big difference with the girls- the Quail rebounds faster. When she woke up Sunday morning she was fever-free! Zuzu managed to remain in good spirits throughout the weekend. I think after the last year of dr visits for the Quail she was secretly thrilled to have the care and attention focused on her. She started listing off in addition to her impending ped appointment, the need to go to her real ear dr for the “tooth” in her ear and the need to see a dentist for the teeth she has never had come in.  To be clear- it’s a tube in her ear but she repeatedly calls it a tooth. Talk about enthusiasm.

The other night while I was doing the Quail’s breathing treat (and yes- the reference to it like that has caused a series of requests from her stister for one of her own and the Quail’s giggling through it did little to convince Zuzu it wasn’t a treat in the true sense of the word), I found myself reflecting on how different the girls are in such quirky ways. In some ways they are so alike. Most people will remark what a mini-me Zuzu is- from the smile, to the eyes, to the continuous talking. Her dad get’s credit for the hair, but really- that’s mine too. I have a lock from my infant head to prove it. It’s easy to see the similarity between Zuzu and me. Just watch her pack her bag for the day, or cheer her sister on for her latest milestone, make a grocery list or turn on my Medela PISA when no one is looking.

But with the Quail- I’ve had to look harder. It’s taken till now when her little (and yet so very big) personality has had time to emerge in all it’s glory to see it. Yet in a lot of ways- it’s more basic. Zuzu actively tries to emulate me. The Quail innocently does.

Within minutes of her birth I asked the nurse who had taken her for apgars if she had Down syndrome. The nurse responded, “You know about that?” I knew it was a possibility. Early on I had been sent to the MFM/high-risk OB when Zuzu’s ultrasounds showed shortened femurs and hydronephrosis. I was monitored a couple of extra times but when she was born, no one questioned if her soft markers meant Down syndrome. Four months later she shocked us with a rather dramatic and sudden fever onset that turned out to be a UTI. Most likely a lingering effect of the hydronephrosis we had not seemed to need to remember.

Then along came the Quail. She had the same soft markers. At each visit the OB would suggest I go back for a more detailed ultrasound with the MFM OB. I asked what would happen after that and they said depending on what he found an amniocentesis would be recommended. I explained rather hormonally that with my previous history of miscarriage I had no intention of increasing those risks now. So we would go on with the exam and the next visit a similar conversation would ensue. Eventually the more brusk of the OBs said it was time to go get checked. So I went for the level 2 ultrasound at 37 weeks. Unfortunately by this time she was too big in-utero to be able to complete all of the measurements. And a bit obstinate in moving the way they would have liked to try to get a better view. The one addition at that ultrasound was an absent nasal bone. With that finding we read that only 1% of the population has it without also having Down syndrome. Still when the OB then met with me to discuss the findings I reminded him of Zuzu’s stats and that these weren’t even as severe as hers. He agreed and said he couldn’t make a conclusive statement about whether or not it was Down syndrome. The shortened femurs could just mean she was a genetic match for Zuzu. And maybe she just wouldn’t be overly tall. I had to laugh at that, Zuzu has never been called diminutive by anyone.

After birth the doctors asked if she looked like us or other family members. I don’t remember what I answered. I really couldn’t focus. Those first few weeks when I would scan the pictures for verification of a diagnosis or not I would tend to avoid the ones that looked like Ds. After her final diagnosis came 3 weeks postpartum by FISH Analysis, I wished I hadn’t spent those first few weeks wondering so much about all of it. Ironically the very day the pediatrician called with the news I had finally gotten to a place where I enjoyed not knowing. Not having a label to define what I saw.

I know some parents get to the point where they don’t see the Down syndrome anymore. I’m not there yet. I see it. I know so much about it and know there is still so much to learn. The difference now is it doesn’t matter so much. The Down syndrome doesn’t hurt her. She’s a well-loved little squirt if ever there was one. She has more people amazed by her then the average kid. She’s lucky.

And so am I. When I look at her face, I can’t always see myself in it right away. I still see those lovely blue almonds that sparkle and crinkle up at the ends. I know that it is that little extra 21 in her that causes it. But that little extra- it’s extra me, and Lovey and Zuzu and all of those family members that have come before her. I see the soft slope of her shoulders and belly and know that it’s that little extra 21 that is responsible for her little sack of sugar body that I love to cuddle. Some say it’s that little extra 21 that causes her love of cuddling. I don’t- that’s me. I get to take credit for that. They say that little extra 21 will mean she’ll have to work harder to achieve the same results as other kids her age. And I see it now, how much harder it is for her to learn to sit, to crawl, to eat, to talk. But it’s that little extra of each of us that drives her to keep at it with full-on enthusiasm. She may have to work harder. But the drive that eventually get’s her there- well that’s familial.

She doesn’t have to work harder though to show us what she loves. She is a bookworm through and through, like both of her parents. She loves music like her father. She loves food like her mother. That sweet strawberry lock of a quail’s bobbin- well it’s arguable which of us gets to take credit. She’s strong-willed like her sister. She’s full of wisdom, kindness and good humor. It just takes a person spending a few extra minutes with her to get to see it’s glory. Because right now, she doesn’t shout about it from the mountaintops. But someday she will, I don’t doubt someday.

Some days the labels put on this little girl, they filter out what people are able to see in her. When I look at her tiny face, I haven’t always seen myself so readily in it at first glance. But when I take the time and really soak her in- I see it. I see my heart, my history and my future grinning ear-to-ear back at me.

Gratitude Journal: 21 things we love about the Quail

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My Cherubim Putti

So last year in the lovely month of October I posted 21 things I love about the Quail. I’ve thought about starting from scratch with an entirely new list but decided to go back to last years and update it to see what’s changed!

1. that bobbin of hair at the top of her head Her strawberry blond locks have caught up in length to that sweet bobbin. I expect by this time next year she’ll have had a day playing beauty shop. But for now her version of Kate Gosselin’s do will have to do.

2. the way her eyes crinkle up when she grins ear to ear Now there is audio that goes along with the grin- I love her little heh-heh-heh. And I love how it matches and twines in with her sister’s giggles.

3. the way her eyes stay trained to Lovey waiting for him to notice her. She’s still a big fan of Lovey, but these days Dora gives him a run for his money. And as much as she craves his attention. She also craves a speedy get-a-way in the middle of diaper and outfit changes.

4. the way she gets our attention by saying, “Uh!” when she has waited far too long. It’s more of a pterodactyl impression these days.

5. the way she grabs our face with two hands and pulls it to her to taste our noses. Awwwww, that makes me sad, the face grabbing is no more. Now she dives in for an open-mouthed, full-on, wet, gloopy kiss. Those are the good ones. When she burrows in to a limb beware though, those little teeth are sharp and prone to clamping on. 

6. the way we leave her in one spot, go to get something, come back 30 seconds later and she is somewhere else. Now she follows you. Unless you are with her, then she scurries away with whatever she can grab on the quick to claim as her own with it tucked into her little arm crease and a giggle and grin as she leaves you in the dust.

7. the way she nuzzles her bunny lovey to her face. She still nuzzles her warm fuzzy friends and blankets. She also feeds, hugs and coos to her baby dolls.

8. the way her eyes light up when you bring out the cereal bowl. Again with the pteradactyl impression here. Patience may be a virtue, it ain’t hers. She does continue to love food though. Her first real table food (read: not baby puree) was curried potato salad. She is more than willing to try almost anything you give her….except water and broccoli. She will attempt to rip her own tongue out of her mouth to get the broccoli back out when she realizes she has been duped. And I can’t blame her with the water- if you had Thick-it added to your water you’d be grossed out too. It’s also not lost on me the irony that the kid who will eat everything won’t eat broccoli, but her sister- who will hardly eat anything not already designated personally into her toddler 4 food group pyramid scheme of cheese food, nugget, sugar or whole-milk yogurt loves her little trees “all day” as she so sweetly puts it.

9. the way her eyes stay trained to yours when you look at her. Both in her glee to see you and in her measured estimation of your level of anger. If she thinks she’s in trouble she locks eyes waiting to hear the reprimand. And before you feel too sorry for this little rascal, I can assure you the reprimands are few and far between for her. She’s clear on the no-nos which at this stage include no biting and no full-on clean swipes of your dinner from your tray to the floor.

10. the way she lets you know by screaming when she’s had enough “affection” from her big sister. Um, no change here.

11. the way she nuzzles into your neck when you hold her up on your shoulder. Now she lays her little head down on your shoulder and offers up a little pat on your back.

12. the way she lifts her legs when you pull out a diaper to change her. Now she says diaper and all done when you are finished.

13. the way she laughs (heh-heh-heh) when you press your face into her belly and give her a raspberry. The big change is you don’t have to physically touch her to elicit a giggle anymore. A sound, a look, a joke, your laughter any silly attention from Zuzu and she’s cracking up!

14. the way she lifts her little arms up overhead when she wants you to pick her up. That was really the first sign. The most frequent these days are drink, up, book and please. I’m fairly certain those cover her world at present.

15. the way she concentrates so fully on the television when Baby Einstein comes on. She likes some Baby Einstein- mostly the Baby Wordsworth, some Signing Times and any Dora. Otherwise she’s a book girl these days. The TV can be on and she’ll crawl across the room to pull  a pile of books down from any shelf, chair, bench,  or coffee table in eyesight. You may think you only want to read Blankie a couple of times but this girl would prefer you keep up the recitation.

16. the way you can feel her heart beat as you kiss the soft fontenalle on her head. Still open and still sweet. The more mobile she gets though the more anxious I am to have that close!

17. the sweet baby, milky, yeasty way she smells. Um, the poopy, curdled milk, dirt from the playground smell is a little less appealing. But you know- when it’s your kid it’s still all good.

18. the way she splish-splashes in the tubby. Hmmmm….not so cute now that it goes everywhere and the usual activity involves repeatedly throwing wet toys out of the tubby. I’m proud of her skill and persistance but still….

19. the way she hollars a reminder to come get her if everyone has congegrated in a room that she isn’t in. Unless she’s over tired or over hungry she’ll come find you.

20. the community that she has brought us along into with her. We are so blessed to be a part of this “family”.

21. her, just her. I heart her.

Quailday: The Toddler Diaries

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As I mentioned last week one of my biggest smiles of the day comes every afternoon when I get a tiny peek into the Quail’s day. For posterity’s sake, I’m going to start keeping a collection of her days as told to me by the Quail’s beloved Miss Mattie, Miss Jodie, Miss Ashleigh and all our other favorite teachers. I hope it makes everyone who loves her smile as wide as it makes me! The picture shown here is the Quail with her EI, Jodie working on some squishy skills.

From September school days:

9/7/10: “She was so great today!  She came out on the playground with everyone and was so preoccupied with playing that she didn’t care if I was there or not at all.  Once we came inside, she just played on the green carpet with everyone and was crawling around and babbling with everybody.  She was much less shy today than last week.  After that, it was time for their snack and it was about time for her milk so I sat her down in a toddler seat at the table and she drank milk and thickener out of her cup with everyone.  After milk, they were getting food-food and I wasn’t sure what she eating now.  Ms. Patti said she usually gets baby food at around 12 so Miss Ashleigh went to grab her a couple saltine crackers so she could eat with the big kids.  While she was gone a couple kids at her table got their food.  She was getting impatient and stood straight up out of her chair.  I don’t think she even realized she was standing.  She was up without any help for a good 20 seconds and then put her hands down on the table for support, but stayed up for a couple minutes while Miss Ashleigh got her crackers.  She also signed “eat” and “please” to get them.  I’m not sure that she even really needs me with her anymore, she’s getting much more confident and comfortable with it. ”  

After requesting further clarification on the standing since it was the first time noted by anyone:

“She lowered her feet down and just stood right up.  The back of her legs were up against the chair, but other than that she was standing on her own until she put her hands down on the table.  I didn’t even know she could do that.  I’ve seen her try to pull herself up from sitting on the ground, but never lower herself down from something. ”

And then the next week:

9/15/10: “She is so motivated to stand!  When I first got there, I was going to bring her right over to the toddler room.  Instead she grabbed onto my fingers and (legs tucked to the side) stood right up with me pulling a bit.  Unfortunately, she lost her grip on my fingers and fell backwards.  She was a little annoyed with me for that, but quickly forgot about it.  Next, she crawled over to the red toy bucket and tried to pull herself up to stand (again with her legs perfectly placed).  Even though she never quite got it, she kept trying.  After about five tries I helped boost her up and she picked the baby toy out of the bucket and gave it hugs and kisses.  Then I got her shoes out to go outside with the toddlers and I said, “Quail, Can I see your foot so I can put your shoe on?”  and she lifted her foot hi in the air for me.  We went next door and spent about 5 minutes outside and then about another 15 in the toddler room.  She played with block with them and I tried to work on some two-step commands with her “Quail, put the block down.  Quail, stack the block.”  She was pretty distracted though.  She also said “baby” in reaction to another toddler playing with a baby doll next to her.  She did pretty good in there, but still looks over for support when she gets overwhelmed.  Then, we cam back to Ms.Patti’s room.  I tried to work on her wheelbarrow excersize, but she wasn’t feeling it today.  We did some crawling over my leg instead.”

And then a few days later:

9/20/10: “She pulled herself up to standing without any help today! When I first got there, she crawled over to me to say hi, then she crawled over to the red toy bucket and just pulled herself up like she’s done it 100 times.  She tried again a minute later and didn’t quite get it, but she was close.  Then we went out to the playground with the toddlers and she went on the swings and down the slide (with a little help) and got to say hi to Zuzu on the other side of the fence. We spent about 20 minutes outside with them and then came back to Ms. Patti’s room.  I had her sit up on the block and we read a book twice.  She signed “book” when I asked her to say book.  Then I worked on having her reach for puzzle pieces and tried to get her to put them in the puzzle.  She was more interested in hitting them together though.  I also tried to work on two-step commands with the cups.  “Put the cup down. Stack the cup” She stacked one cup on top of another once, but wouldn’t put the first block down when asked.  Then, I had her sitting up on the big ball and moved her from side to side and front to back.  She did really well with this and didn’t need that much support from me.  Next, I had her crawl over my leg for puffs.  She did this about 5 times and signed “please” for puffs.  Then, I tried the wheelbarrow with her with help from Ms. Patti distracting her with puffs.  She stayed up for about 15 seconds 3 times.