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Yearly Archives: 2010
Fave-O-Lit Friday: Kimya Dawson
Is to wake up right next to you
Second thing that we have planned
Is to kiss both of your hands
Third thing that we’ll do today
Is look you in the eye and say
I love you sweet baby, I love you sweet baby
I love you more than anything
Then we’re gonna change you
Then we’re gonna feed you
Then we’re both play peek-a-boo
Then we’re gonna read to you
Then you have more milk and have some water
And we’ll smile at you and tell you we’re so glad that you’re our daughter
Then you’ll fall asleep on daddy’s lap
We’ll watch MacGyver while you take a nap
When you wake up we have more plans
Say good morning baby and kiss your hands
Then you’re gonna make a pee
In your little green potty
Then we’re gonna eat our lunch
Mash avocados for you to munch
Then you’re gonna nurse again
Then we’re gonna call our friends
Then we’ll dump out all your toys
Singin’, dancing, make some noise
Then we’re gonna take a walk
Down the street to the park
We’ll play on the see-saw, play on the slide
You’ll get tired and rub your eyes
Then we’ll go home for more nursing and sleeping
Bouncing and nursing and waking and peeing
Crawling and bouncing and dancing and hitting
Nursing and peeing and kisses and seeing
You’re an amazing human being
You’re an amazing human being
You’re an amazing human being
You’re an amazing human being
Then we’ll all cuddle in our bed
You’ll nurse to sleep, we’ll kiss your head
Good night sweet baby, I love you sweet baby
I love you more than anything
Good night sweet baby, I love you sweet baby
I love you more than anything
The first thing in our list of things to do
Is to wake up right next to you
Second thing that we have planned
Is to kiss both of your hands
Third thing that we’ll do today
Is look you in the eye and say
I love you sweet baby, I love you sweet baby
I love you more than anything
I love you sweet baby, I love you sweet baby
I love you more than anything
I love you sweet baby, I love you sweet baby
I love you more than anything
Quail Day: Home & Heart
Cardiology check today…
Well the word on the street is we will most likely be paying a visit to our friendly cardiac team in Charleston SC when the Quail reaches 3-5 years old. She has a ventricular septal defect that is membranous and moderately sized. She may have an atrial defect as well- that is unlcear and while if it was the only thing they wouldn’t be talking about repairing it, if and when they do go in they will repair that as well. It appears there may be a flap over it and he used another term- which escapes me right now to describe what it could be.
But the VSD has had some tissue growth around it since birth. Originally our cardiologist said that the tissue growth was a good sign that the hole may be closing itself. The tissue growth essentially forms what looks like a windsock on echocardiogram. So with this growth the size of the hole itself is not what matters. In fact if the tissue wasn’t there we most likely would have needed her to have open heart surgery already. The end of the windsock is what they refer to and measure as the effective hole. That is the size that allows blood to go back the wrong way. And the size of that hole is only 3-5 mm…they think. He said repeatedly to not be shocked if the hole either the one in the septal wall or the effective one ends up being much larger. He’s good at explaining things in lay terms and used the example of trying to take a photo of a sheet that is blowing in the wind and has a hole in the middle. Then try to guess the size of that hole based on the accuracy of the photo. With the wind blowing the sheet around it is hard to tell the actual size of the hole.
For the last couple of visits it hasn’t appeared that there has been new tissue growth and the effective hole has been measuring 3-5 mm. There is still a chance it will close on it’s own- so he isn’t willing to say for sure yet that she will need it. We’ll have a couple more visits to check it out But if she remains as she is, and so far she has had consistent findings at her appointments thus far; the plan will be to go in and close the defect when she is 3-5 years old. He said things would be much more smooth (that probably isn’t the right word), but it’s’ better for her to be a little older to go through the surgery. On the other hand. adults with Down syndrome have a fairly high frequency of developing pulmonary hypertension between their 20-40s and closing the hole could have a positive effect on that. I’m not clear if it would prevent it all together or cause it to be milder. I often find myself nodding along feeling perfectly confident in what I think I understand then when we leave and Lovey and I start discussing it we find we both had slightly different understandings. At any rate; it’s due to that possibility that would be the reason to go in and do the repair when she’s little- not too little, but not too old as to cause any unnecessary trauma mentally or emotionally for having gone through it.
I’m a good midwesterner transplanted here in the south. For me it’s mentally easier to accept this as a worst case scenario- that indeed OHS is in her future in a few years and be delightfully surprised if the hole closes on it’s own and she doesn’t need the repair. I’d rather that, then to hear optimistic bullshit, that is put out essentially to make me feel better and not worry all the while he would know that she will need the surgery.
The good news of the day is that her past bout of illnesses over the last 3 months didn’t do any damage to her heart. He thought they sounded like bad luck that she got sick and not cardiac related. He said he didn’t see any real reason why she shouldn’t be in her little school. He said the Ds and her heart condition aren’t more likely to cause her to get ill- it’s just that when she does catch something she will act or be sicker in response to something like a cold then a child that doesn’t have those 2 issues. And it may be harder for her to fight off an infection so they may last longer. I was glad to get that affirmation after the last few months leading me to think we should invest in a timeshare in the hospital pediatric ward!
So that’s all for now- it’s time to go put the small ones to bed and be grateful to have everyone here and together. I think I might also go ask Lovey if he heard the doctor say the same thing I think I heard!
corner view: Holiday
If you go back to the middle of December you will see Holiday pictures of our festivities. It was a much quieter, subtle time then originally intended. We had every intention of spending the Christmas holiday in the Midwest with Gramma and Grampa. We had been planning for months. The plane tickets purchased, the Christmas Dresses ready and waiting, the tree set to be decorated and we had begun reading children’s books about Christmas, winter and snow. And then along came life…both girls were sick and Zuzu was technically contagious until the day after Christmas. So we cancelled our travel plans and settled in to be merry in our own home. Our friends and family were sweet enough to expedite their dresses and giftees for the girls and dear friends invited us to spend Christmas Day with them nearby. The girls are young enough that they weren’t too disappointed. They were excited to see their tree get decorated, to don their dresses here and open packages and wish family and friends a Happy Christmas over the phone. Zuzu asked Santa for a candy cane, Andy Williams sang Jingle Bells, there was freshly grated nutmeg for the eggnog. Christmas Eve we had a family dinner and read Twas the Night before Christmas together before bed. Christmas Eve morning we remembered to pick up the bobka and stollen from The Village Baker. The stockings were hung and filled by Santa Claus with the likes of chocolate and musical toothbrushes. Zuzu, ever the pragmatic soul, was pretty concerned by the lack of toothpaste in her stocking to go along with the brush. Lovey noted this was the first Christmas ever that he did not receive toothpaste in his stocking as well. Santa duly noted his lapse in judgment and practical gift giving. Last year we noted the need for a new holiday movie to entertain Zuzu while we prepared breakfast. What a difference year makes- she managed to entertain herself with her stocking pretty and what-nots and we barely heard a peep out of her all morning. After our long-winter’s naps we headed over to our friends for dinner and dessert. We whole-heartedly enjoyed their company and cooking as always. The girls were excited to play togther in their holiday dresses and we were happy to relax while they entertained themselves. The rest of the weekend was a series of cleaning up, late mornings and lots of naps. Oh and listening to repeated messages from Orbitz about the cancellation, after cancellation of each and everyone of our flights other then the initial one out of town. Apparantly, had we been on our flight as planned, we would have spent a good, long visit in Minneapolis- with no way to get to our final destination and no way to return home via planes, trains or automobiles. We are sad our health and weather didn’t provide the happy, family, white Christmas with extended family, but we are grateful for our little group being together and finally on the mend.
The photos above were the 2 centerpieces of our holiday. One group of my on-line friends whom I have had the good fortune to bask in the wisdom of since 2005 had an ornament exchange. I had the luck of the draw in getting to give to dear Marlo- whom I had the pleasure of actually meeting in person earlier this summer during a trip to Lovey’s family’s home. I had a wonderful picture of her lovely daugher and Zuzu walking together and had it turned into an ornament. I couldn’t have thought of or provided a more meaningful gift for one of these wonderful momma’s if I had rigged the draw myself! The ornaments above were only half of an extremely loving and thoughtful package provided by sweet Joanna in Canada. We had the privilage of sharing maternal time- our youngest small ones were born within weeks of each other. Her oldest- who is a little older then Zuzu was the MC for the gift giving extravaganza and chose a most excellent purple sparkely ornament for Zuzu as it is her signature color. Upon opening the package, Zuzu informed me, ” Oh good, my friend Kitty-ara gave me my favorite color purple entament” Translation:” Chiara gve Zuz a purple ornament! The Quail recieved…yup you guessed it- a Quail ornament- so glittery, charming and lovely- much like the quail herself! For Lovey and myself there was pure Maple Syrup from a local farm- which I might add is one of Lovey’s primary food groups- and for me some vampire fiction- as Joanna knows of my obsessive reading of the Twilight Saga shortly after The Quail’s birth. I feel so blessed to have such a thoughtful friend who knows us so well- yet bizarrely hasn’t even actually met us in person!
It was a lovely holiday and I can already feel the plans weaving in my settled brain for next year!
Come join in the festivities around the world via corner view as hosted by our lovely Jane:
jane, ladybug-zen, ian, bonnie, esti, sophie, cele, modsquad,caitlin, joyce, ani, kim, natsumi, epe, kaylovesvintage, trinsch, c.t., jeannette, outi, ritva, francesca, state of bliss, jennifer, dana, denise, cabrizette, bohemia girl, isabelle, amber, a girl in the yellow shoes, mister e, janis, kari, jgy, skymring, elizabeth, allison, lise, cate, crescent moon, erin, otli, ida, caroline, lisa, dorte, kimmie, la lune dans le ciel, nicola, malo, vanessa, britta, april, b, kyndale samantha, karen, kristina, goldensunfamily, sophie, janet, mcgillicutty, aimee, sunnymama, jenell, britta, juanita, pamela, inna, daan, myrtille, cris, ibb, jodi, gillian, travelingmama
Zuzu Day: Cold!
Momma Monday
I haven’t had time to ponder my resolutions. Life has been more day-to-day focused in the new year. The Quail is home and better. It turned out to be bronchiolitis rather than pneumonia both this time and last. I’ve just been trying to puzzle through the last few months and work out in my own mind how big a deal all of her illnesses have been or amount too. I don’t want to over-react, nor of course under-react. Since she’s been born she has been generally healthy. She got sick with a fever and virus last May for the first time and was given breathing treatments as it settled in her chest and she had some wheezing. That worked and she was fine until she got her first ear infection in august. The infection itself cleared up fast with antibiotics but the fluid lingered for a good 6 weeks and she actually failed a hearing test during that time due to the fluid. Zuzu had ear infections straight from 7 months-13 months at which point we had tubes put in. Zuzu would get so ill with them: high fever, vomiting, then thrush and diarrhea from the antibiotics. No symptoms for a week then at each check- up there would still be fluid or signs of a new infection within a week or two and so we would start a new round of antibiotics and begin the cycle again. It was tiring and frustrating. Once she got the tubes she still had a handful of infections but by comparison- not nearly as ill. She was in daycare too and it seemed to coincide with the point in which she became more independent and could crawl and grab toys and slobber on other kidlets. So here we are again- only with the Quail the virus seems to go down into her chest rather than up into her ears. The first time she got quite ill and required an emergency room visit was in November when on the weekend her fever spiked- she was treated for the flu since her lungs and ears were clear and her fever was spiking a second time. Pneumonia followed that. She finished up her H1N1 and seasonal flu vaccines shortly after that.
Then in December there was a huge commotion with the drug manufacturers in trying to get her RSV vaccination. It finally got straightened out and came into the pediatricians office literally the same day she showed symptoms of RSV. She was hospitalized for breathing difficulties a day or two later. When she went in to the ER they said RSV, dehydration and pneumonia. Later it got clarified that it was brochiolitis, not pneumonia- which often will follows RSV. As soon as she was fever free for 24 hours she was able to get started on that vaccination regimen. We kept her home extra long after that stay just to be safe and give her adequate time to recuperate. Well then a few days after returning to daycare we noticed all of us felt sick. The Quail started a small fever a couple of weekends ago but it was there only a day and then went back to normal. On Wednesday the breathing difficulties started again. It was the chest retractions that really signalled us. She was fine- playful, cheerful and good as gold that night when I picked her up from school, then an hour later the fever started and well- the rest is written.
Since then we’ve had a couple of comments and questions about whether or not she should go to school. This is the part where I start to puzzle. It’s important to me that she be given the same opportunities as her sister. I love that she goes to the same little school as her sister and has the same teachers who love her as they loved Zuzu. I love that she plays with the same little kids and when I pick her up each night I see the same little ones playing near her. Our early intervention staff has said that she sees kids that have Down syndrome doing well in a daycare setting- that the socialization they get there is something they can’t be taught other places.
But along with that socialization comes germs. That would be the case with each and every play group, class, outing or daycare we would take part in. When we asked one of the doctors in her practice about what we can do to minimize illnesses effects on the Quail the response was, “Keep her at home”. I just don’t think that is a reasonable option. They were saying not to go to any crowded areas- including the playground, the store, daycare, etc…I admit, I’m tired and nervous these days. It’s a hard cold and flu season all the way around with the surge of H1N1 in addition to the usual suspects. Problem is I can’t predict the future. We went through this with Zuzu and now she has a hardy constitution and rarely gets sick. But that is really just in the last year. She went through her fair share of illnesses to get there. The doctors point was that the immune system will be stronger and more equipped to handle all of this when the Quail is older. I just don’t like the idea of isolating her. And to me- that’s what it sounds and feels like. I know lots of SAHM moms do an excellent job of socializing their children and I admire that. I don’t know that that would be my shining glory. We’ve also had others ask about putting her in a “special daycare” that focuses on children with disabilities. The idea of this feels antiquated to me. Having grown up with a sister with profound mental retardation that lived a good bit of her life in an institution- I just have a hard time only seeing the positives that this kind of setting can offer. I’ve spent my education and a good portion of my adulthood advocating for community integration. While we do tend to treat our therapies as separate events from our lives by scheduling a time in our day to work on, say; gross motor, or feeding therapy-it’s because our days are so blissfully chaotic and we don’t want the day to go by without some time devoted to each development issue we see specialists for- and it easily could. So far we’ve managed that alright. Some weeks better than others, but that’s life.
My hope is that we’ll get through this cold and flu season on a new medication regime that will keep her little air passages open and prevent her from getting so very sick. I admit I don’t like her being on a steroid- and especially having to give it twice a day so that one dose is before bedtime. Have you seen a tired baby hopped up on steroids at the end of a long day? Not fun for anyone. Although to be fair- she exudes bubbliness and playfullness mostly- so it amounts to her laying next to all of us and kicking and rolling over and grinning and calling out to us rather than settling in for her long winter’s nap. So it’s not all bad.
We’ve hired a lovely pediatric nursing student to stay with the Quail today and tomorrow to give her some extra rebound time and we’ll try going back to school on Wednesday and hope that all will be well. We had OT and PT today. She did excellent in PT- really much more stable and supporting herself in sitting and they were able to get her into crawling position with her portioned over a bolster for support. Good pivoting on her tummy for toys as well. OT was another story. We are getting better lip closure for feeding. Much less of her peas and pears returned to us. She loves when we use the Z-vibe spoon and smiles at her honeybear- although a good portion of that falls out of her mouth as well. Her positioning is not good though and we are looking at how to adapt her sitting to ensure a 90-90-90 degree angle for feeding. But her little legs don’t bend at the knee in our seats. We are starting SRJ bubble-blowing protocol to try to build up lung capacity as well. This therapy everyone is excited about- and by everyone I mean Zuzu and the Quail- the Quail shrieks in delight as all the bubbles I don’t manage to catch on the wand go ambling past and Zuzu leaps and bounds to try to catch them, hollering, “Do me, do me”. I try to tell her to not jump in the middle and she can have a turn- but that is like asking a golden retriever puppy to not jump up when you are holding his favorite toy!
We’ll just keep puzzling through and see how things go. I’m oh-so-glad for southern winters right now though- they are brief and not nearly as severe as the midwestern ones I was raised on.
Gratitude Journal
2. new beginnings
3. Flylady
4. Six O’Clock Scramble
5. Mary Oliver
6. Fitday.com
7. a roasting chicken lieing in wait
8. sweet potato rolls rising in a sunny window
9. Twelth Night
10. Gerber Daisies
11. Lovey making Eggs Benadict!
12. Two parents- so one can stay with the toddler, while the other runs to the ER with the baby
13. Zuzu getting her doctor kit to see if she is alright
14. Being able to nurse one, even when I can’t the other
15. cuddles with a sick baby
16. Summer and Connie’s help!
17. Renee’s help!
18. Sue’s chicken noodle soup!
19. Zuzu telling me when she grows up she’ll have 10 babies- boys and girls!
20. Zuzu telling when she grows up she’ll be a princess, and a doctor, and a teacher, and a mommy…but mostly just a princess
21. sleep
22. my dear family and friends sweet words, thoughts, offers, prayers, food, hugs, child-holding and well wishes- much love and gratitude
23. hospital collard greens
24. a baby excitedly eating my face
25. opening my eyes to sunshine, smiles and giggles
See what I saw Saturday
Fave-O-Lit Friday
Saying Goodbye to Very Young Children
They will not be the same next time. The sayings
so cute, just slightly off, will be corrected.
Their eyes will be more skeptical, plugged in
the more securely to the worldly buzz
of television, alphabet, and street talk,
culture polluting their gazes’ dawn blue.
It makes you see at last the value of
those boring aunts and neighbors (their smells
of summer sweat and cigarettes, their faces
like shapes of sky between shade-giving leaves)
who knew you from the start, when you were zero,
cooing their nothings before you could be bored
or knew a name, not even you own, or how
this world brave with hellos turns all goodbye.
The Quail- Deja’ Vu
Back we go…The Quail is checked back into the hospital as of last night. I swear she was better! January 2nd our entire HLF noticed a scratch in our throats and some fatigue in our limbs. Lovey seemed to be hit the hardest with the newest cold, followed my the Quail then me. Lucky for us Zuzu had such a rough first year as well germ-wise that she has a tough little constitution now and other then the bout with RSV in December hasn’t really been sick in over a year. We took TQ to the doctor last saturday to check and there was no wheezing, ears were clear and temp was back to normal by sunday. It had only gone up to 99.9 and then immediately worked its way back down. Yesterday when she came home from school she fell asleep on the ride home and woke up cranky- our first sign. Then spit her peas and pears back at us, shoved her bottle away and commenced to crying. Her temp was 99.1. After an hour of bouncing her and checking every oriface multiple times she seemed to be breathing harder with more chest retraction so I ran the nebulizer- after which she promptly through up her sweet potatoes from lunch. Lovey took her back to the hospital ER and by then her temp was 102.1 and the doctors heard wheezing. Oxygen sats dropped to 89 while she was sleeping but generally hovered around 94 so they did a quick chest X-ray, confirmed a new pneumonia and checked her back in. Lovey stayed overnight with her and I stayed with young Dr. Zuzu. In the midst of getting The Quail out the door, Zuzu dug out her doctor kit and started listening to her own heart. Sweet thing.
The check this morning showed that the wheezing was gone, oxygen sats and temp were back to normal. They’ll keep her today and reevaluate. In the meantime, Lovey gets the hospital spa treatment today, I’ll be hearding the toddler and pounding the payment for offers of food and baby holding. If you see me coming- just smile and offer a hug!










