Out to pasture…

Well, it’s about time for the girls to go out to pasture. By the time all is said and the crying is done, it will have been about 45 months of milk making. I still have some torn feelings about this. There is still a huge part of me that feels weird about The Quail only getting 15 months of breastmilk and Zuzu getting 45. But we had a lot of issues to work through with the Quail and we are still working on those. I’ll talk more later about the Quail’s eating and drinking strides. She’s made some real ones.

My goal was to make it through her surgery and once she was recovered from that I would slowly wean off of the pump and nursing. I’m so incredibly grateful to Zuzu. If she wasn’t such a dedicated comfort nurser I realize I may not have even been able to produce milk for the Quail for 15 months while working full-time. It’s an incredible gift from Zuzu. One neither of them can understand or appreciate now. But I know. And I appreciate it- the increased immunity, cognitive ability, oral-motor strengthening and weight gain while we nursed during the first 9 months. What a gift that liquid gold is. Realizing just how many barriers our sweet Quail had blocking her from thriving- the expectation of  limited growth associated with Down syndrome, the moderate ventricular septal defect and the duodenal stenosis leaving her with a pen tip sized opening to push her food through. The hypotonia and motor planning difficulties making it even more difficult to activate the strength needed to push that food through the opening and nourish her little cherubic body. It’s all a miracle that she has thrived. If life hadn’t happened in exactly the order and on the timeline that it did, many sadder outcomes could have been our reality.

But they weren’t our reality- and we are so blessed. And it’s time to give the girls a rest. Till next time…

Zuzu Day: The first dance…

 Our little ballerina twirled away in her first recital on May 15! That morning practice was at the recital hall- a hall mind you, that seats 4oo. Having never done this before I thought that seemed a little extravagant for a child’s ballet recital. We were to arrive 30 minutes prior to curtain and we wondered on the way over what we would do for that 30 minutes while we waited. Well- it turned out we would use it finding a seat! The hall was packed! That morning when we arrived for practice Zuzu was feeling a little shy and showed that she is indeed my little apple seed as she stood in line on stage leaning over and whispering to me in the front row that she had to go potty. Again, and again, and again. She made it through though and was a real trooper. That morning we learned that dancers bring their teachers gifts to the final recital practice. Ooops.

That evening after we dropped her backstage and found seats next to some folks we knew we just soaked in the Quail’s enjoyment of a night out on the town. Going to shows, storytime, pottery painting; anything that requires sitting still and listening for longer than 30 seconds has just not been our ideal as a family. Zuzu is a free spirit. She likes to run and holler and leap and play. So it hadn’t occurred to us how much the Quail might enjoy this setting. She sat proudly on our laps greeting each neighbor that sat down with a smile and a wave. When the house lights came down and the stage lights started circling she was delighted. The sparkly costumes gleamed, the girls glowed and the Quail clapped and cheered along with everyone else.

When Zuzu’s class came on it was definitely one of the big “awwwwwww” inducers from the crowd. There is nothing cuter than a stream of 3 year olds decked out in their glittery tutus. Although Zuzu was a little more focused on her steps this evening she did spend a fair bit of the time with her hand shielding the lights from her eyes so she could locate us better. Unfortunately due to our arriving only 30 minutes prior to the show we were in the nosebleed section and couldn’t actually locate us.  She was darling nonetheless. All the little fishies did their swim, swim, swim. And when it was over she came flying into our waiting arms and exclaimed the two prominent thoughts on her mind:

1. “I couldn’t find you anywhere! I looked and looked and looked while I was on stage!” We know Zuzu.

2. “Where are my flowers? Katie has her flowers!” We’re sorry Zuzu, we didn’t know, but we will next year!

She actually glowed with pride after the show was over!We’re sad to see the dance year come to an end. Zuzu was one of the youngest in her class and we worried if she would have the discipline to make it through the fairly focused class. But her teacher is a wonder. She’s been teaching for 54 years (yes, that’s right- 54- you do the math!) and has those children in line, in order, in step and on time. Maddie loved it and although she was incredibly shy about showing us what she learned, she obviously worked hard this past year. We’re so proud of our little prima!

Quail Day: Signing Time

 

The more sign made a reappearance last thursday during EI! We had it months ago and then for some reason it seemed to disappear and little to no signing has continued other than the basics of up-up. Monique thought most likely it has to do with the movement towards crawling. She said children tend to get quieter and even appear to regress when they are working on major motor milestones. She said she has known many speech therapists who won’t work with children until they are walking because of the expectation that children won’t talk much until after they have mastered walking. Well, during EI Jodie was ticklin the belly of the baby and she was giggling out loud. When Jodie stopped the Quail’s eye’s trained on her in anticipation of more. When Jodie asked if she wanted more, sure enough the little fingers came together at midline, again and again and again. So very sweet. There were also a number of standing up, leaning in goopy, open-mouthed kisses after multiple requests to “Give Momma a Kiss”. It’s my favorite therapy to practice. And don’t get me wrong- that therapy is all mine!

Quail Day: Sucking up

That’s our girl dutifully tucking in her chin while she sucks up kefir in her honey bear! Way to go Quail! We’ve been thickening her breastmilk with a variety of foods- mangos, prunes, pears, cinnamon to coax her into complying with Sarah Rosenfeld Johnson’s straw hirearchy. We regularly lecture on the virtues of the chintuck and the importance of it during drinking to her overall health. But try explaining the physics of a straw to a nine-month old. It’s been slow going. The beauty of the flexi-straw in the honey bear is our ability to squeeze some of the liquid up into her mouth. We’ve been working on it since October. We’ve gotten good lip closure and she greets that bear like it’s Yogi Bear come to life when she spies it in any corner of the room. But it wasn’t going much beyond our squeezing the liquid up. And then we realized that Zuzu’s favorite drink was the right consistency for the honey bear- and better yet- Earthfare Grocers sells drinkable plain whole milk yogurt! We added it and voila…she sounded like Maggie Simpson…suck…suck…suck. After one or two more tries with me appling a tiny bit of pressure she managed to start sucking it up without help. We’re still working on straw positioning in her mouth and her not leading into the drink with her tongue. But there is still much happy drinking doing on at our home!

Quail Day: Great Feets/Feats & Juggling Acts

Life is full of balancing acts right? How to get enough attention to all who need it? Well synergy fell into our nest this past weekend as a braincell or 2 of mine perked up and suggested I spend time petting and brushing Chula  Cat at an adequately safe distance from the Quail. The Quail is a big fan of the Chula Cat. Nothing gets her wings flapping and her eye’s trained as hawk’s eyes on her target as our dear Chula Cat. And Chula Cat since she has arrived in our lap has been slowly letting us know she would like to be more, albeit safely, centered into the mix. The latest milestone we have been working hard towards is the elusive crawl. Mark the PT suggested it looked like the Quail may skip it and go to standing and walking in the next year, which is fine if that is what is to be. But we would like the crawl to happen if at all possible. I was inspired by this family’s bribe to get their lil one to crawl. But while Cheetos would definately get Zuzu and Lovey motoring across the room, I’m less convinced it would work with the Quail. For Zuzu she started first going backwards, as had her Momma, and then eventually forward when the telephone was in site. I felt less sure about the appropriate motivational tool for the Quail until Chula Cat happened into a therapy session with us this past weekend and voila, amongst a lot of wings flapping, feathers and fur flying we had backward motion! Fly baby fly!

ps: No cats were harmed in the production of these shots.

Happy 1st Birthday Quail!

Saturday we had the Quail’s first birthday party at our home! It was lovely and sweet and a good showing of our dear local friends joined in the festivities. The day was not without it’s follies: the tiny tiara was lost before it could even be worn, the cupcakes were turned upside down  by a certain 3 year old in her eagerness to share, about half of the invitees were unable to attend. The birthday girl was at her refluxy-prime from the beginning and asleep when her guests arrived and that certain 3 year old later “helped” her sister unwrap her gifts before a certain Momma could write down who the giftees came from. But all-in-all it was a lovely day. The weather was beautiful, the house was clean, the children were chipper, our dear Justine was engaging, the pizza’s were on time, the balloons and singing and frosted-Italian-creme-violet-topped-masterpieces all made the Birthday girl smile and chirp with joy! And the girls in their matching green party dresses were as lovely as the early spring day itself!

Thanks to everyone who helped out! We love you all and feel so blessed to be part of such a rich communityof friends and family!

Gratitude Journal: In honor of a year with the Quail

1. Making Zuzu into an awesome sister

2. Being an awesome sister yourself

3. the little hands sweeping behind you gesture you make when you are excited

4. the way your arms go up and you get all wiggly in anticipation when one of us put a receiving blanket over our shoulders

5. the courage you gave me as a mother

6. making us into a family

7. bringing me back to the kind of person I’ve always been

8. your confidence in your rightful belonging in our hearts, our family, our lives and on my hip

9. showing me the beauty in your unique face and way of being

10. your giggles, grins and gripping little hands

11. the community you bonded us too

12. your Buddha belly

13. your calm wise gaze

14. the way you follow your sister and cat around the room

15. your ability to have your cake and eat it too (you insist on being held by one of us and then immediately focus on the other)

16. for showing me there is more than one way to parent a child

17.  the reminder that we all have abilities and gifts

18. your joy and exuberance as you accomplish each developmental milestone

19.  the way you nuzzle into our necks when we hold you

20. the soft cooing sounds of you telling us what’s on your mind

21. our future- I can’t imagine our lives with anyone other then you, exactly how you are. I can’t wait to see and be with the person you are becoming and already are.

I can’t believe a year has flown by already dear girl. We all love you to itty bitty pieces and know that you are perfect exactly as you are. You make us so proud and we look forward to many, many family days together in our lives. We have so much to show you and do with you. We have learned so much about life, love and humanity already in this brief time together. This world is getting better every day- and we promise to continue to make it a happy, safe place for you to be able to spread your wings in. You are such a beauty. Thank you for gracing and blessing our lives.

Quail Day: Chief Standing Bird

We have a standing baby! I was checking in on little LC and watching some of the video footage of her and thought we might try their neet standing trick going up from sitting on a little stepstool. And I’ll be a monkey’s uncle (or a little bird’s mama!). It worked!  I’m not sure exactly what it was that made it sooooo very easy to get her to push up to standing but it was an awesome feat. And my eager display of pride made it a quick favorite of the Quail. After a few times of trying that we went ahead and started from laying down, to letting her pull up on my hands to sitting and then to pull up to standing! Brilliant! At PT on monday we showed off our new trick and happily impressed our PT. I was complaining that when Jodie (EI) gets the Quail in standing she just pops her up from her lap, but when I try she usually ends up with a faceplant deep in the rug and less than pleased. So we practiced and right away he noticed that the issue was the position of her feet and the need to have them planted firmly on the ground before applying a slight pressure to her thighs to “pop” her up off my lap. Easy-peasy- once I realized what the problem was. As he pointed out- it’s stuff like that, that keep him with a job! She was even able to stand bracing herself at a bench and also over a basket and soon enough forgot about the new feet of standing and moved back into playing like she does it from that angle all the time! We’re so proud!

Zuzu Day- Momma, but I don’t know how to read…

…is a refrain oft heard around our house these days. When Zuzu was a baby I was a tad obsessed over the need to establish a reading routine so that books would be an important part of her little world. When she was barely days old I would set her in the swing and swiftly read 3 night-time themed books to her  each evening; dutifully showing her the pictures. She didn’t yawn in response, or kick and giggle, or really show any apparent response. Then as the days progressed I switched to a routine of reading chapter children books to her while she nursed. I liked the Norman Rockwellish image of reading to her about Peter Rabbit or Paddington bear. Again- really not much of a response that was obvious- until she reached the point where she would grab the book from my hands and attempt to nurse it rather than me. This grew frustrating and as she hit that 5-6 month mark where I could no longer read, talk on the phone or watch TV while nursing because she became more engaged in it than the task at hand I gave up actively establishing a reading routine at bedtime. We did still have tons of board books around though and the first book she memorized was Sandra Boynton’s Moo, Baa, La, La, La which had lovingly been provided as part of a welcome package of favorite baby toys by Celina and Lisa’s families from St. Louis. At an early age that could still be recorded in months, rather than years when you recited, “The cow says….” she would happily cluck off the animal sound portions till she could “read” the entire book her ownself. This expanded to Barnyard Dance, and on and so-forth as she slowly established her favorite selection of little board book stories. Between the second and third year when her daycare became more of a preschool structure she began her role as teacher, imitating Miss Chrystal at school and lining either us or her animals and babydolls up for her reading to us as the teacher. The first book she did it with was a darling book that we had ordered from the Scholastic Books program at school that had obviously been read at group time the day it came in. That night when I tried to read it to her she was insistent on taking it from me and assuming the teacher role yet again as she sad there jammy-clad instructing us on the book  she named “Foxes” for the little fox family on the cover.

We eventually did establish a bedtime routine of 3 books while nursing and then off to sleep. And after the Quail joined us we continued in a less structured fashion of storytime as she would bring books over to where we sat with her baby sister and read them to her. But something changed in the last month or so. She began responding to the request that she “read” a book with an upset tone and even a few tears because she has realized she doesn’t know how. No longer willing to run through the motions we have began to attempt to instruct her in a somewhat bumbling effort. We are slowly returning to a nighttime routine of books before bed and books together upon awakening.

So in addition to being surrounded by books, (yes I still obsessively by them from thrift stores, Ross stores and anywhere I see them for less than a $5 bill.); we are now surrounded by letters. We use Starfall.com, the Leapfrog refrigerator letter and now word building products and her favorite shows to watch include the likes of Super Why, Wordgirl and Word World. I remember one day at the grocery store months ago when she suddenly gazed up at the Pharmacy sign and declared with delight, “Momma there’s an A!” as the letters of the alphabet came slowly into focus for her. I also remember nights on end of asking her the colors of the toys in her bath and the slow switch from sly, grinning guesses to accurate naming of the dolphin and ducky family hues.

And it appears we are entering a whole new realm of independence as entire words begin to come into focus for her in the same fashion. Each night as we put dinner together she uses her alphabet magnets and asks Lovey to help her spell words. She has mastered the art of sounding out C-A-T and tells us she has no desire to spell DOG. But would like to know how to spell, happy, hiccup, rocket, Annie, June, playground and spider. So we meet her requests unquestioningly and come up with pitiful English language lessons of the likes of, ” Well happy is one of those special words that has 2 consonants in it”.  We can only hope she doesn’t repeat our haphazard lessons as insistently to her teachers as she sometimes is with us as she reminds us to use our happy manners because they will make us happy.

I think maybe she makes us happy.