Momma Monday- Quail Alert

Quail Thoughts

Quail Thoughts

I was going to start this as a pity post- that’s how it felt at the time I started it. Thursday was the start of a round of “routine” 6 month check ups for the Quail. I’m not sure if it varies by area. But here our Early Intervention program and our geneticist recommends the following check ups every 6 months for the first few years:

thyroid check

hearing evaluation

vision evaluation

geneticist evaluation

On top of those we have of course the standard 6 monthwellness check with her pediatrician and ongoing cardiac evaluations and echo-cardiogram monitoring. It’s time to review her IFSP. We are starting physical therapy and she is currently in occupational therapy for feeding/nutrition therapy. And we are getting a referral for a speech evaluation. Oh and did I mention she has her first ENT evaluation tomorrow as well?

It’s a lot- and yet- it’s so good and easy and she is generally healthy. It’s when all the appointments happen to lump together like that that I notice the little “extra”. But in reality- our first year with Zuzuwas not easy either. She was a high needs baby- no actual colic- just not wanting to be put down-and she was frequently ill with one infection or something like thrush or diarrhea in response to the antibiotic that treated the primary infection. So we are not newbies to the need for frequent medical treatment. But I digress.

On 8/20/09 the Quail had her pediatric wellness check. This also served as a followup to her ear infection in her left ear earlier this month. She had been treated with10 days of amoxicillian  and the infection was gone. This is only her second, “treated” respiratory type ailment. She also had an URI in the beginning of June but at that time they treated it more like asthma with a nebulizer with albuterol and prednizone. The wheezing in her chest healed then and hasn’t returned so there haven’t been any other URI since then until the EI in the beginning of august. At her wellness check she weighed in at a wopping 14 lbs 9 oz, 26 inches and a head circumference of 16.5 inches. Which for a baby that has Ds is huge. Her height shot up to the 75% on the standard charts! Her head and weight remain happily around the 42% on the standard charts (which is what she has averaged since birth). Again I think genetics comes into play here (Zuzu was always around the 90th% in her measurements). She did spike a fever of about 101.5 the day after her vaccinations but as with the previous 2 times she has had a fever it dropped back to normal the next day.

On 8/26 she had her vision and hearing evaluations. Her eye dr (and this service was paid for by Babynet) said he detects no current problems with her eyes/vision. He recommends she come back in a year.  The hearing tests didn’t go quite so swimmingly and this is where the original pity-party part of the post (say that 5 times fast) comes in. Her left ear still has fluid in it- no infection seen- just fluid- so the audiologist recommends she go get an ENT evaluation. Lovey is taking her tomorrow to the wonderful ENT who put tubes in Zuzu’sears. He had already warned us the need for tubes runs in families (and also typically in kiddos with Ds). Well she still has fluid in her left ear from the earlier EI. So they couldn’t get any sort of adequate reading off of that ear. Her right ear is also showing signs of a hearing loss. And that is what was more concerning. She did pass the newborn hearing screen and the audiologist said that she can most likely hear at a conversational level but is not hearing soft sounds such as consonants which can hinder speech development. They did the tympanogram, OAE and the sound boothexam. Later this month we’ll go back to attempt the ABR. I say attempt because this involves making a baby go to sleep on command. While it is good she doesn’t have to be put under for the test it will be a neat trick to get her to go to sleep on our will. Sort of like herding cats I imagine. We have a 2 hour time slot to work our magic and were given suggestions like keeping her awake and hungry in the morning so she can then eat and conk out when we get there. A dear friend has volunteered (or more accurately been commandeered) to ride along on the trip and keep poking and telling hilarious stories in the back seat to keep our dear Quail awake and alert. We really won’t know until that test is done if it is a severe or slight hearing loss. I say this is no longer a pity party because a dear group of online friends were so positive and supportive upon hearing this and reminded me how much medical technology has improved and how this is really a fairly fixable issue to have. And sure enough our lovely audiologist told us she wouldn’t hesitate to put hearing aides on the Quail should she need them. Here’s hoping they come in purple polka-dot!

On 8/27 we had our regular OT and PT appointments. PT went swimmingly- we noticed when she was on her back and a toy she wanted was placed near her head, in her line of sight she would lift her little top leg and make the motion to roll her Buddha belly over. She already does well going front to back. Thus as mentioned in a previous post tummy time has become more exercise for us in repeatedly flipping her back to do her neat trick again. And then came the real miracle of the week, my 6 month old baby- nursed to sleep for the first time! We didn’t do a feed and weigh. At each OT appointment thus far she has spent more time exercising her lungs then her oral-motor area. So Kathy said she would not polk the baby prior to nursing and I was to just come in and attempt to nurse. I tried a new position- which will surely set me into PT if I have to do it long- and we were off! The Quail seems to have great proprioception needs. It seemed my holding her on the boppy pillow and her trying to feel stable and nurse at the same time was too much, but when I leaned over her and let her body be sandwiched between my body and a firm surface she was much more accepting. This hasn’t been fool proof- and I still have to use parts of her Dr. Brown’s bottle to get her to latch on but it is a huge improvement and gives me hope that this little Quail may become a nursing champ one day as well!

Next up- more PT and the Geneticist.

Oh- and lastly- she isn’t really blonde- I think that’s why this picture is so cute to me!

 

ps- The Quail is going to get tubes. Hopefully this will spare her much illness and help her hearing!

Gratitude Journal

Not too crabby

Not too crabby

 

 

 

 

 

 

1. The new Children’s Museum in Greenville, SC

2. Prairie Home Companion

3. Barley’s Taproom

4. Tubby time with the small ones

5. quick steamed veggies in the microwave with butter and basil

6.Zuzu’s calling the television PBS

7.An unexpected pearl of wisdom from an unsolicited source-Thanks Will!

8.Non-sequetor comments from toddlers, “Mommy the polar bear doesn’t want you to drink all the coffee”

9. Heartfelt invitations from toddlers, “Mommy- you can come to the bathroom with me if you want to”

10.Leaning over the co-sleeper to spy a baby grinning up at me

11. The Clemson University Farmers Market

12. Older boys at Chik-fil-A helping Zuzu to overcome her “feeling scary” at the thought of going in the play area

13. Sisters

14. the sleepy smell of my family resting

15. the healing powers of echinacia & garlic

16. modern technology making healing easier

17. warnings to get something checked

18.mail-order flowers!

19. invitations to spend time with friends

20.Fresh baked Beach Bread

21.knowing people who care enough to take their day to help a new friend in need

Letters to my Loves

Family time

Family time

I promise to reach for balance in my life and yours.

 Dear Loves-

 This promise will probably always be a work in progress. I resolve to keep doing the work. Mallika Chopra talks about the pull between mothers that go out of the home to work and those that quit the workforce to stay home.  I feel the need to find balance in so many areas of our lives. Balance between work and home life, friends and family, me-time and a time for others, and most recently between focusing on the Down syndrome part of our worlds versus just focusing on you dear Quail.

There are many families that have parented a child that has Down syndrome before us. Since you have come along I’ve found out just how common it is. I’ve read about the families of Charles de Gaulle, Charles Darwin and Dr. William Sears. Dr Sears talks about both online and in his Baby Book about parents trying to find a balance between diving head first into the world of special needs and focusing their families life on that versus focusing just on their child and fitting their child into the mainstream of their families already existing life. I’m honestly still not sure where I fall with this balancing act to date. But I do know that we will continue to reexamine what you need, dear Quail, as well as what we all need individually at different times in our lives together. I intend to take my lead from you as you develop and show me what you need. I expect to sometimes speak for, sometimes with and sometimes- well- most of the time to let you speak for yourself.  Our world is constantly changing, evolving and I hope improving in its acceptance and tolerance of issues that not everyone’s family faces. I know my mind has broadened just by virtue of you and your sister’s short but sweet lives. I thought I knew so much as I started compiling my parenting library before I’d even spent a day with either of you. Now in your dear presences I can see how much I still get to learn! I’m grateful you help me know that and are so forgiving as I try.

In the choice to work outside the home there are so many factors to consider as well. I always, always ache for more time with my family. I also know that work is a part of a healthy and productive life. I work not just so we have income and stability but also to show both of you little girls that we are each responsible for our own lives. While we work together as a family and we take care of each other- both your dad and I are strong, smart, independent and capable people who have strengths and gifts that we share with each other, you dear girls and our community and world at large. I see working as a privilege. I see especially in you; sweet Zuzu, how what I do- every little thing- sinks into your brain as you develop your worldview. I see it in how you talk, how you play, and how you respond to the routines in your life. Women have fought for centuries for choice in their lives. With every generation a little more has been achieved. I want to instill in both of you a sense of strong independence and capability. I want you both to feel capable of knowing and taking care of yourselves as adults. And for our family at this time that involves you both going to your little school while your Dad and I go to work. It is because we love you both so much that we live our lives this way. It is because we see ourselves as your role models and your world. I see how you have blossomed under the watchful of eye of your kind teachers dear Zuzu- how much you imitate what you see at home and at school. I listen to you chatter about your friends and your day and what you have learned already at such a young age- and I am so very proud. I want these same experiences for The Quail- I want her to have every opportunity that you have and I know that her being accepted and part of her community that she lives in begins early and with our providing the effort to make her a part of it.

Which brings me to the balancing act of friends and family. How much time we spend with just ourselves versus with those in the wonderful community in which we live and learn. We are so very blessed to have so many wonderful people in our lives; both far and wide, in real life and on-line, in the town and region in which we live and all around the country and globe. Our family we were born into lives all over the country; in South Dakota, Wisconsin, California, Washington just to name a few. We are blessed to live in a time when air travel is able to take us to see them and bring them to us. We live in a time in which this is a natural part of the cycle of our year. It is so hard though- we want to share every holiday and special occasion with all of them and what we have to settle for is so infrequent. Fortunately as technology improves we are able to find new ways to keep in touch and know one another. In the same breath we want to establish family life, love and tradition in our own home- to create for ourselves the memories that your Dad and I cherish from our own dear childhoods- family trips, holidays, meals, gardens, routines as simple as watching a program or reading together.

And then of course there is finding the balance of me-time versus time for others- both friends, family and work time. I used to not feel such a need for it, but the more overloaded with tasks and activities I get the more I notice the need to know to know there is me-time on the horizon to do things like photos, read, watch TV, listen to radio shows, cook, plan our families future, dream, go out to eat, shop, go to the library, garden, take a lavender bath, play and talk to friends and family. I find myself getting up earlier and earlier to try to fit bits of these favorite activities into my already jam packed life. I have to find the balance between getting enough of a taste of time for me so that I look forward to more and don’t feel so guilty in doing it. So that I’m not neglecting the tasks that need to be done and the activities that I love. There has to be enough of a balance that I am able to have presence of mind- that I’m here present with my family and soaking in every minute and not thinking of what I still need or want to do and ending up not paying attention to what is right in front of me. As time goes on I find creative ways to do this. Ways like right now when I’m sitting at the computer in the early morning light thinking, smiling, watching the sun come up out of the office windows while I drink a cup of soy-milk coffee from the beans our dear Kathryn brought us with her recent visit to meet you girls. I can enjoy this precious moment because I know that we have a beautiful day ahead of us full of activity and fun. That in a few hours we’ll meet your friend Hayden and his mommy- who has become a dear friend to us; at the community pool so that we can get some exercise in our day before returning home to nap and cook for another group of precious friends- all friends who you girls know from our community. We’ll get adult time with the parents and you kidlets will get to play together. Of course the other thing that enables this fragile moment in the early morning light is the fact that as I type your Dad is sleeping in because he was up during the night feeding the Quail while I took a turn sleeping. The fact that one of you is up nursing with me now and the other is sleeping soundly. I know soon the nursing will finish, the heartbeats will stir and everyone will wake. The daily chaos of family life will begin to move us through our day- sometimes getting to do what we planned and sometimes breaking from that routine to do what is most pressing at the moment. That is also a balancing act that we work through daily. How to stay with the routine and how to be flexible with our plans and days.

I am so very blessed to have all of these things to balance in my life- from Dear Lovey who I share my daily blessing with so intimately, to you dear small ones, to the friendships that have blossomed both in real life and online in the last year to our devoted and steadfast families both near and far away. From the jobs we go to daily, to the plans we dream of. I promise to remain flexible and open as our families needs grow over the years we are blessed with and shift the balance in a way to continue to search for harmony in all of our lives together. I know what is right for our family now is not right for other families or even our own in the future. It is easy to just look for other peoples’ or cultures’ world view that validate your own. But my goal for us is to not judge others choices in how they live their loving family lives but to learn and grow and listen to our own collective family heart.

 Love, Momma

Fave-o-Lit Fridays: HOW TO BUILD COMMUNITY

 

 

 

Zuzu's favorite literature

Zuzu's favorite literature

 

 

On fridays I’ll put up some of my favorite poems, essays, sayings, lyrics, etc- and in honor of the lovely welcome from my new blogging community and specifically the wonderfully warm welcome into the community of families touched by Down syndrome since The Quail has come into our lives I’ll start with this oldie but goodie!

 

From a Karen Kerney watercolor. This beautiful poster is a collection of simple suggestions that will help restore our eroding sense of community. Virtually everyone can do most items.Text reads…

 

Turn off your TV
Leave your house
Know your neighbors
Look up when you are walking
Greet people
Sit on your stoop
Plant flowers
Use your library
Play together
Buy from local merchants
Share what you have
Help a lost dog
Take children to the park
Garden together
Support neighborhood schools
Fix it even if you didn’t break it
Have pot lucks
Honor elders
Pick up litter
Read stories aloud
Dance in the street
Talk to the mail carrier
Listen to the birds
Put up a swing
Help carry something heavy
Barter for your goods
Start a tradition
Ask a question
Hire young people for odd jobs
Organize a block party
Bake extra and share
Ask for help when you need it
Open your shades
Sing together
Share your skills
Take back the night
Turn up the music
Turn down the music
Listen before you react to anger
Mediate a conflict
Seek to understand
Learn from new and uncomfortable angles
Know that no one is silent though many are not heard.
Work to change this.

 

The Quail- Here & Now in all her Glory

sweetness & light

sweetness & light

The Quail is now 6 months old. She is 26 inches long and 14.9 lbs. Her head is 16 1/2 inches in circumference. She is our little butterball and we are so proud. The main thing that will determine if she needs open heart surgery to correct her moderately sized, membranous VSD is her growth. Children that have Down syndrome typically grow slower and smaller then children that don’t. There is a separate growth chart that they are measured against because of this. In The Quail’s case we have been blessed- she has maintained her weight growth at 43% on the standard charts. At her 6 month well-check appointment last week her height shot up to 75% on the standard charts! If she can continue this for the next 6 months most likely she will not need surgery in the next year. We are certainly hopeful, and more importantly our cardiologist is cautiously optimistic that this will be the case. So much so that he was willing to schedule her next visit 3 months out.  The Quail is currently involved in therapy. Our main issue to work on with her all along has been feeding issues. While she came home from the hospital in the standard amount of time, it was taking approximately an hour and a half every 2-3 hours to get 1 oz of food in her, via a syringe or SNS system. She wasn’t able to suck milk out of a bottle without most of it running down her little chin. Over the first few weeks she gained enough strength to eat from a Soothie bottle (just at the point when I thought I might pass out myself from trying to get her to eat any faster!) but not the Dr. Brown’s bottles that we had used with her sister. In the last few months we have transitioned to a Dr. Brown’s bottle in hopes that it would help with her continuous barfing. It helped some, but not enough. It’s funny- I have acquaintances who are in the process of weaning their 6 month old babies. I on the other hand am still trying to see if I can get The Quail to nurse. I know most  people would advise to let it go by now- but I’m convinced that her ability to nurse can only help her in later food and speech issues by working those muscles that can’t get worked another way. We had been seeing a speech therapist since about 2 months who would monitor her progress and was quite pleased in her ability to drink a bottle in about 20 minutes without her oxygen saturation dipping. When I finally asked again and for the final time for her give us exercises that would help her learn to breastfeed, I was told there weren’t any. A friend of a friend of a friend was able to give me the name of an OT that helped them to work through nursing issues with their child. So we contacted her about a month ago now and when I told her what our SLP had to say, her response was- that teaching children to breastfeed is what she gets paid to do. She also mentioned the guru Sarah Rosenfeld-Johnson and her emphasis on strengthening oral-motor muscles. Ironically the SLP never once mentioned her. So now we go 2 times a month to learn new exercises and see what we can do. Obviously starting this, this late in the game is going to be a hindrance; but as long as I have a decent milk supply I figure why not try. So now The Quail happily looks forward to all of her daily oral-motor exercises up to the point in which I attempt the real deal- at that point she chooses to exercise her lung muscles.

The Quail started smiling at 2 months old. She is a fairly serious and thoughtful little soul- but the smiles are now easy to come by and we work our little proverbial butts off trying to get a giggle out of her. To date, Lovey is the only successful one, but I have to say there is nothing I have enjoyed more then watching people hear this and proceed to step up to the challenge.

 The Quail exudes calmness, understanding, attachment, wisdom and joy. She exercises her hand to mid-line control by taking our faces in her tiny palms and pulling them to her mouth so she can lick us or tell us, “Ahh-goo”. She will also hold her bottle with both hands if she is particularly hungry and her sister has been attempting to feed her in such a manner that equates with the bottle being taken out of her mouth every 5 seconds. Her absolute favorite toy or joy in the world is us. Toys hold little interest for her but she is big on watching and being with us. You set her in another room and go off to do something else and she is not likely to let you leave her there long before she’ll start hollering. Her next favorite toys right now are her bunny lovey, a nursing necklace, plastic chain links hooked together, receiving blankets to cuddle, her monkey ball, any teether or hand she can sink her gums into and a tiny piano that we use for sit-prop play.

She expertly rolls from tummy to back and is quite skilled at using this maneuver to get herself out of tummy-time. She can prop herself on her elbows and is working on propping up on her hands. She is working on staying on her side to drink her bottle, nurse and play but again is quite adept at getting back to her back. We still swaddle her to sleep at night and I am continually amazed at how a little baby with supposed low-muscle tone manages to wriggle her swaddled body down and sideways a foot or more routinely. But she does it.

The Quail goes to the same daycare as her sister and also like her sister, is a little bit in love with Ms. Kelly her teacher. When Lovey drops her off in the morning her little face lights up and she kick, kicks, kicks her little joy-filled legs- which also by the way is good exercise!

She has also had a PT evaluation in the last month because the OT pointed out that she isn’t activating her abdomen muscles and she tends to lay frog-legged. We’ll be trying hip-helpers to strengthen her little dinner roll thighs. The OT also thought that the weakened abdomen muscles was contributing her her frequent barfing. She is not being treated for reflux like her sister was at this age because her weight gain is steady and she is what they call a happy-spitter- she doesn’t arch and scream and refuse her bottle. We’ll see what the PT has to offer.

And our dear Jodie- our EI also comes one time a week- sometimes to daycare and sometimes to home to also give us activities to do with The Quail. The Quail also grins and talks to her as does her sister.

All in all it’s been the sweetest 6 months of our little lives and we are so very blessed to have become a family of 4. Thank you dear Quail- much love

Zuzu- Here & Now in all her Glory

 

Dear Zuzu will be turning 3 in less then two months. To date she is 35 lbs and over 36 inches. She loves pink, baby dolls, doing somersaults and flips on her Daddy. She absolutely has to be included in absolutely everything we do. If I tell her I have to go to work, her response is either, “Me too!” or “No- you can go back to sleep with me”. She is extremely physically active and agile. She is definitely our monkey and proud of it. Things like story time at the library are so not her speed. Things that require sitting for longer then 45 seconds and listening attentively are so not her speed. Things that involve doing what the grown-ups are doing, shopping, taking a trip, talking, dancing, laughing, playing in the water- that is her speed.

When Zuzu crawls into bed at night with us she hoards things. We might wake up with a cup, a phone, a baby-doll, a robe, a sweater, a couple blankets, her mo-mos,  knuffle bunny or a teletubbie. The latest love is a tiny book on mushrooms and toadstool identification from Kew Gardens in England. She has to “read” it until she falls asleep and will often wake in the morning still holding onto it.

She LOVES Jingle Bells; preferably Andy Williams version and will hop around until it’s over, Van Morrison, Astral weeks isn’t bad either. Also Betty Swain- Make Me Yours. She has a couple of kids music albums- one she calls Down by the Bay and one she calls Hello- that she likes too- but in terms of grown up music the others rate.

Absolutely every animal and baby doll have been put in time out in our house by her. When asked what their offense was- they usually hit or bit her.

She loves Word Girl, Curious George, Super Why, Clifford the Big Red Dog and Martha Speaks. She refers to television as a whole as PBS. If you try to sing along to the theme song with her she will hold her finger to her lips- shush you and say, “No me” and continue singing along.

She used to pretend to cook while we did- using our kitchen apparatus- you know- back when she was a little girl- now if we are cooking or washing dishes she drags a chair over and insists on helping. She’s a good mixer! When it is time for a meal she will sometimes set out gummies or goldfish for everyone.

When we are out in public and have to use the restroom, there is much discussion needed. First time she asks to go- she won’t go- she’ll just check out the scene. The second time she probably will. The first order at hand is whether it is a big or a little potty. The next issue is whether it is a loud or a quiet potty. If it is a quiet and little potty she’ll go without too much trouble. Otherwise much negotiation ensues. She usually asks me to go first and then in all her familial pride bursts out with a, “Good job Mommy!”. And will usually announce- “ewwwww, Mommy poopy”. When in fact that is not the case.

6 months into it, she is still the most excellent big sister and is utterly in love with her baby sister. The Quail is the first and last thing she thinks about each day and will frequently tell her she “yuvs” her and hugs and kisses the dickens out of her. The Quail for her part tolerates this affection and will sometimes smile back. She is good about giving The Quail a new toy as she realizes the toy she has been longing to play with is in her baby sister’s clutches. She runs to check on her if she hears a peep from her. She loves to help feed her and is pleased as punch to come tell me that, “My baby stister woke up on her own!” (uh- sure she did). She recently told my mother that we are getting more babies.- Maybe not yet- but I know she is hoping for them.

Her favorite turns of phrase of late: “It’s ok Mommy”, “Cousin I said so”, “Good bye-bye” “Good night-night”, “Probably” , “Wellllllll, actually” and calling pineapple either pumpkin or apple pie. “I’m gonna blow your crankies away- Now you happy!” “Mommie- you make people sad when you are frustrated”, “Mommie- you have to be nice to people who are trying to take their shoes off on the bed”.  And she is quick to congratulate us-“Good Job Mommy!- Good job (insert mundane task here- pumping, eating, sleeping, going potty)” “Neh-neh tastes like Heaven Mommy”,

And of course the standards- she knows her colors, shapes, numbers and ABC’s.

That’s our wildflower to date-aren’t we lucky!