Wee little update…

April 29th, 2012

…on our wee little Verity!

Less than two months until she’s two years old!

She’s wearing eighteen-month to 2T clothes now, but she seems so petite to us in contrast with Katie.  She’s still wearing a size three shoe, while Katie’s feet have gone from a size two to a size five.

To think I worried that Verity was overweight when I got home with Katie!  Back then, even weighing a pound and a half less than she does now, Verity looked so huge and chubby next to her frail sister.

Remember this video?

 

More than a month ago, Verity learned to put herself up to a standing position from the floor, balancing on those tiny feet.  I hope to capture it on video some day soon.

Now she’s learning to shift her weight to one foot or the other, so that she can learn to walk.

“Dance, dance, Veri-ty, back and forth, side to side!”

We’re curious to see what comes first, her second birthday or her first independent steps.

 

For months now, she’s been able to put her glasses on quickly without help, and it is the cutest thing to watch her tiny little hands doing it!  I’ll have to capture that on video also, one of these sunny days.

We can fold the glasses and put them into her lap, and she’ll open them up and turn them until they’re in the right position, then put them on.  If they don’t go on perfectly the first time, she’ll try again as many times as she needs to.  We are so proud of her perseverance.

She is so very far-sighted that the glasses enable her to see the world around her, and she likes that.  Most of the time she ignores her glasses, but she whips them off and pitches them in a flash if they’re dirty…

…or if she’s irritated about something else, as if to say, “That’ll show you!”  Uh, yes…we’re working on that one.

 

Hmmmm, let’s see…

She wakes up bright and cheerful in the morning, but refuses to open her eyes until she decides it’s time to stop sleeping.  She will even lie there talking with her eyes still closed.

She knows what a potty is for and is exceedingly proud of herself when she uses it.

Speaking of which, her constipation issues caused by her low muscle tone were so persistent that in addition to probiotics and dietary measures which weren’t effective enough, we now give her fruit-flavored sodium docusate liquid.  Commonly known as Colace, and also given to her sister Katie.

Both she and Katie have had constant upper respiratory congestion since I stopped giving them my own milk.

Verity does like her almond milk smoothies.  (We’re still not giving her dairy products.)  We’ve discovered that almond milk is very simple to make with the proper tools.  I add a pinch of salt, dates, and a little vanilla.

We also give Verity vitamin D, fish oils, ginkgo, and grapefruit seed extract.

She’s increasing her sign language repertoire, and it’s not stopping her from progressing with verbal speech.  She is willing to attempt to mimic many words, but doesn’t usually use them without encouragement.  It gives me great joy every time she imitates a sound or word.

Her little body is meltingly soft and there are no better hugs than Verity-hugs.

When she needed help refining her pincer-grasp, at the suggestion of her occupational therapist we began putting her puffs or raisins into a mini muffin tin.  Ideas that work are the best!

She can accurately stack the rings on her ring-stacker, and carefully build block towers.

She’ll pick up her socks and try to put them on her feet, and loves to help put her shoes on.  She puts her feet into her pant legs and helps to pull them up.  She knows that barrettes and hats are to put onto heads.

 

She can put a hat properly on her own head, and says “hat” if she notices someone else wearing one.

She defies the persistent stereotype that people with Down syndrome are always happy and love everybody.  She can be grumpy with the best of them, and gives the evil eye to strangers that get too close to her personal space.  She shows no propensity for habits of indiscriminatory affection.  Far from it.

 

A specialist who works with children with disabilities recently spent some time observing her, and then asked me, “Does she have any delays?”

Delays?

Yes, we definitely see her delays and difficulties in learning.

I picture her brain as if it’s surrounded by two hollow balls, one inside the other, both with holes that have to be lined up correctly in order for something to get from the outside in.  We can easily tell when the holes are misaligned, and she’s just not receiving the information.

It’s just as easy to tell when everything’s lined up so she can take it all in.  When that’s the case, her response time is quick as lightning.

We have to work to get her attention, and then give her input, input, input, in the way she can best understand it.  We also make sure she and Katie get their ginkgo every morning, as this makes a noticeable difference in their ability to focus.

 

But in so many ways, Verity is just like the nine other toddlers we’ve had.

She is playful, inquisitive and on the move, gets into things and makes messes, is determined to let her voice be heard, puts all kinds of things into her mouth, throws all her stuffed toys out of her crib, loves being read to, has to be watched so she doesn’t crawl up the stairs, doesn’t like to hear the word “no” unless she’s saying it herself, and makes us laugh every day.

 

I was face to face with her, demonstrating the hard “G” sound.  She had recently said it for the first time, in the word, “Go!”

I exaggerated the sound, showing her what my tongue was doing back there, repeating it again and again.  I told her, “Verity do it!  Verity say, ‘G, G, G!'”

She watched my antics solemnly, giving no other response.

After a good five minutes of trying to no avail, I went on good-humoredly to brush her teeth and wash her hands and face.  Then thought I’d try again…

Mama:  Verity…

Verity:  G, G, G!

 

You are such a little doodle-bug, Verity.  And I love you so much I can hardly stand it.

 

As I handed you to Daniel this morning, he said, “It’s hard to believe some people wouldn’t want her!”

 

 

 

 

 

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36 Responses to “Wee little update…”

  1. Kara says:

    She is such a precious little love. WTG Verity! 

  2. Kim says:

    Verity is doing very well!  I love your description of Verity and her glasses.
    I would love it if you would share what Ginko you use.  We also notice a difference when Charlie takes Ginko, but what we have tried is so very bad tasting and hard to hide in food, that most of the time we don’t even try.
    Blessings!
    K

  3. Verity is so adorable- my girls all clamor to see her pics! What a great update!!! Things are crazy busy here- I’m going to update our family blog with the adoption blog address today, Lord willing (just in case you’re interested). As always, we are praying for y’all, and thank our great Heavenly Father for you! :)

  4. Grumpy says:

    She’s beautiful – thank you for sharing her with us!

  5. Susanna says:

    Colleen, of course I’m interested! Are you kidding? I just checked in a little while ago hoping for an update! Looking forward to seeing that new blog!

  6. Susanna says:

    Kim, it’s Neutraceutical Sciences Institute brand standardized ginkgo biloba extract, 120 mg per capsule. We order it with our other supplements from vitacost.com every few months and pay a flat shipping rate. Verity started out with one capsule, but a couple of months ago, she was acting like she wasn’t getting it at all, so I added a second capsule daily and that worked.

    I put the contents of two capsules into each girl’s breakfast bottle. (Neither one actually drinks a bottle, but I still use the bottles/lids for mixing.) I haven’t tasted it, but it smells pleasant to me, like the sun on dried meadow grasses, or red raspberry leaf tea, and Verity drinks it without hesitation. But then, I’ve been putting it into V’s milk since she was a few months old, so maybe that is helping? Not sure, but if you want Charlie to have it, I hope you can find something that works!

  7. Holly F. says:

    I have several things to say and not enough time so I’m going to bullet it:

    1.  Please share how to make almond milk.  We spend a fortune on buying it.

    2.    Trent LOVES hats.  He will try to snatch hats off of stranger’s heads.  People buy and give him hats all the time.  We have a bunch hanging on a rack so that when he points and says, “Hat” there is always one available.

    3.  Trent has a tremendous propensity for indiscriminate affection.  We were shopping yesterday and he touched everyone he could get his hands on.  Tried to kiss, hug, or high five everyone.  It is sweet but not a good habit to form.  It is a fine line to walk to teach him to do otherwise.  I don’t want to stifle his sweet heart.

    4.  Way to go with the glasses!  I love that she puts them on correctly and enjoys wearing them.

    5.  She is absolutely precious, beautiful, too cute for words!  And Daniel is very handsome.   
         

  8. Susanna says:

    Holly, it’s good to hear from you!

    We bought a “well-loved” commercial-grade Vitamix drink machine on the internet for a decent price, way cheaper than a new one. We also invested in a nut milk bag that looks just like this: http://www.amazon.com/Nut-Milk-Bag-New-Improved/dp/B00158U8DU

    Our close neighbor (and my friend) works for Weaver Nut Company (https://www.weavernut.com/), and we bought our whole years’ supply of almonds through her during their anniversary sale. We bagged them in gallon-sized zip-lock freezer bags and are storing them in the freezer.

    We soak the almonds for several hours or overnight in enough water to cover them. Drain off the water and process them as follows: Place one cup of almonds in the blender jar with four cups water, several pitted dates, a pinch of salt, and a dribble of vanilla. No need to peel almonds. Blender on high for several minutes, then pour through nut milk bag or cheesecloth into gallon-sized pitcher. Repeat, using the ratio of one part almonds to four parts water, until all almonds have been processed. We hang the nut milk bag on a cupboard handle, with the pitcher sitting on the counter directly below it. After most of the liquid has passed through the bag into the pitcher, we squeeze the remaining pulp as dry as possible. Homemade almond milk doesn’t last for even a week, so we make this in smaller batches of 2 cups of almonds each time. They swell with soaking, so there are more than 2 cups when we’re ready to blender them.

    You can google for recipes using almond pulp if you can’t bring yourself to use it for compost and don’t have a bachelor brother who eats just about anything. :)
    Does all this make sense? It is simpler to do than it may appear. Please let me know if you have any more questions you think I may be able to answer. :)

  9. Daniel, I couldn’t agree with you more.  Verity is just precious!
     

  10. Mandy says:

    Verity is doing so well-what a cutie!

  11. Dawn Wright says:

    WAY to go Verity!!!!  She is not quite as old as our two youngest (they are a month apart one born at the end of Feb…one at the end of March.)  She is doing great!!!  So fun to hear of her progress :)  And she is soo very cute!

  12. Jill says:

    Just curious about Verity’s small feet.  Is it a DS side effect, is it pituitary, or something else?  My niece was born blind with many issues, like 3 sets of teeth, overactive pituitary, etc.  She was about the size of a 10yr old at about age 4.  They were able to slow it down some.  She is still tall and now overweight due to lack of exercise at age 22.  But I was curious as to what would cause Verity to have such petite feet.
    Verity is so precious, curious and such a joy to read her updates.  Thanks for taking the time to share!

  13. Anna T says:

    Dear Susanna, Thanks for the update on Verity, WTG Verity!!  We’re waiting for the word “no”, Jacob’s ST feels that it will be coming soon.  He shakes his head “no” quite nicely, LOL!!  Thanks also for the information on gingko and that it’s making a difference — yea, I made a note and may need to place an order.  Jacob drinks Goat’s milk (you may find a nearby farm that is reasonable with regards to price?)? Such a delight to read an update on Miss Verity and I agree 210% with Daniel : ) !!  Love,  Anna 

  14. Sandra says:

    Yes, Daniel, it is very, very hard to believe!  She is doing SO well!

  15. Susan says:

    Love the photo-sequence of your busy little Verity loving her kitty! What a sweet-natured, pretty tortie (as well as a sweet-natured, pretty Verity, of course). It’s good to read about what a spunky little personality Verity is becoming – those little feet are going to go far. 

    Best wishes,

    Susan in Ky
    Cousin to 2 from EE    

  16. Ginger says:

    Love the story of how she wakes up in the morning. Very funny to imagine!
    I liked your explanation of the two holey balls in the brain. When referring to our adoptees’ lack of age-appropriate knowledge (they can do things other kids can’t do, but they also can’t do things everybody their age can do)– we call it swiss cheese brain. We also say they have “trap door days” where info they know seems to just fall out of their heads and they don’t know it for that one day. But it’ll be back. ha!
    So interesting the way the brain works, isn’t it? 

  17. Susanna,  Could you tell me about the Ginkgo?  What does it do for the girls and how did you learn about it? 
    I ask because I’m wondering if it might be helpful for Deacon and for Christiana when she comes home.   

  18. Leslie says:

    She is just adorable!  I would love to hear more about the Ginko too!  Thank you for sharing!

  19. Jane says:

    Susanna, what a wonderful (hardly wee!) Long update about Miss Verity.  She is so beautiful and has so much going on!  What a delight to read all about her growth, her antics, and the love she receives from all of you.  Sending you all lots of love from California…

  20. Becky K. says:

    One of these days Miss Verity and I will be friends, I hope.  So far, I am just another face at church that looks at her and smiles.  I remember Chelsea as a young girl being frustrated at the “adoration” she received when we went to church.  LOL  Can’t imagine why that was a problem but that is how it seems Verity feels about those of us she has yet to get to know.  Nonetheless, I find her completely adorable and smart, smart, smart!  I’ll bide my time until the day she is ready to be friends.

  21. Deanna says:

    I love getting my weekly smiles from Miss Verity!

    She’s adorable!  And those photos of her in the red shirt!  Be still my heart!  I agree with Daniel – How could anyone not want her! 

  22. Susanna says:

    Leslie and lisa matthews, I was convinced to try ginkgo after reading about it on one of my favorite blogs, Hannah’s Shenanigans.  I have a lot of respect for Beth and think Hannah is AMAZING. http://hannigans.blogspot.com/  

    When I read that Hannah’s family saw ginkgo have an immediate and positive effect on her cognitive processing abilities, I googled for more information (something like “ginkgo and down syndrome”), and didn’t find any reason NOT to give it to Verity.   We too see a palpable effect on her mental alertness, which in turn helps her to learn.  :)

    lisa matthews, I’ve only read about ginkgo in conjunction with Down syndrome, so you may want to look into whether it has been used to help children with autism and/or other issues, like global developmental delays or FAS.  I’d be interested to hear what you find out!

  23. Amy says:

    Oh I love miss Verity! What a cutie patootie! I have never used ginkgo or other supplements with our children with DS. Honestly, I would get so confused with all the different things that were suggested, and never knew what/if I should even try things. I am wondering now if I should try and see? Should I talk to my pediatrician first? Are there possible negative interactions with medications they currently take? All of them take prescription medications for thyroid, ADHD, etc.

  24. Elli Zurowski says:

    Adorable! She is such a doll.:o) I love the part about the glasses and also giving the evil eye…..she reminds me of our Jeremiah – cracks me up when I hear the ‘ol “People with Down Syndrome are always so loving and happy!” phrase. Haha! Thank you for blessing us with the opportunity to share in the joys and experiences of your family. It is such a pleasure to be included!

  25. Shana says:

    Do you recommend any reading on using supplements with Down syndrome?  I heard about it briefly a while ago, but it has never come up in our DS circles or with our physicians.  Any tips on what to use / why, would be appreciated. :)

  26. Holly F. says:

    We also give Verity vitamin D, fish oils, ginkgo, and grapefruit seed extract

    Are these all capsules that you break open and put into a drink?  Or already in liquid from with a dropper.  And do you add all of them to the girls’ morning drink?  Or do they take some from a dropper?

    I take fish oil capsules and often burp the nasty aftertaste.  I can’t imagine breaking it open and putting it in food/drink. 

  27. Holly F. says:

    Also, do your other kids take the same supplements?  If I put Trent on the supplements, I may as well put my other kids on them too…lol.

  28. Paula says:

    Can you please e-mail me.  I have formula for Pleven and would like to be put in touch with someone that can get it there.  I live in Texas and could ship it to someone that is going.  Thank you
     
    These precious Angels are heavy on my heart.  While I would love to get over there and bring a little one home, I can not.  We would not qualify.  I feel so deeply about these children.  My heart aches to love them , hold them and show them how life should be.  I appreciate any assistance you can give me in getting this to the children.

  29. Debbie says:

    big thanks for your wee update!
    i love verity’s little piggie tails!

  30. So good to read an update about Verity!  She has grown so much and looks like such a cutie.
     
    Lord willing we will meet you all on the weekend!!!  :)

  31. Susanna says:

    Paula, emailed you…

  32. Susanna says:

    Holly F, the vitamin D and fish oils are softgels that Verity chews up. She’s been getting them since she was a few months’ old, so I guess it’s just part of her life. The ginkgo is a powder inside a capsule that I shake up with her breakfast smoothie. The grapefruit seed extract comes in a thick liquid that I squeeze into every bottle I make for the girls–about 4 or 5 drops per bottle.

    No, the other children don’t have the same health vulnerabilities that Verity and Katie do, so we don’t give them the same supplements. :)

  33. Susanna says:

    Shana, there are so many sites and opinions out there, and many of them contradict one another. After reading and researching a couple of years back, including on this blog– http://gotdownsyndrome.blogspot.com/ –we decided to focus on areas of potential health vulnerability or weakness, and target those within what seemed to us to be reason. For instance, knowing that people with Ds may have a lowered immune response, we give them foods and supplements that may help support the immune system. We also target areas we know they as individuals are weak in. Verity’s D level was low at one year, and I’d recently read about Ds and vit. D on this blog– http://downsyndromeupupupandaway.blogspot.com –so with Dr. Strauss’s approval, we began a higher dose of D for Verity. We try to strike a balance between overkill and ignorance. :)

  34. Susanna says:

    Amy B, emailing you, my friend! :)

  35. Susanna says:

    Jill, the size of Verity’s feet is probably related to how tall she’ll be, as it is for our other children. We have a son who is well over 6 feet tall and wears size 15 shoes. :) As you know, it is very common for people with Down syndrome to be short, and we expect Verity will be, too. I personally am grateful that the extra chromosome gave her petiteness (including a petite nose, unlike her mother’s!), and think it gives her extra cuteness appeal. :)

  36. Kenna says:

    The photos of Verity and the cat are wonderful!!  And I have to agree… I can’t believe ANYONE wouldn’t want a child like her.  They’ve obviously never had the joy of a person with Down syndrome in their life!

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