Letters to my Loves

Sisters

Sisters

Dear Loves,
When Zuzu was born we read and read and read. When will she smile? When will she roll over? When will she sit up? Why hasn’t she said Momma yet? When does she stop saying Momma over and over and over? That is how we learned about the milestones in your lives- the typical ones that everyone celebrates at least.
 Through this learning we were able to see some of your many budding gifts Zuzu dear. You are bright, inquisitive, extremely caring and physical. You have a determined spirit and are generous in sharing your love with those around you. You walked at 11 months, you said Momma at 7 months (actually you cried it in one of your many “middle of the night to cool you down because you have yet another fever from an ear infection” baths. You crawled at 6 months, sat at 4 months. You filled up your potty chart at school with pink stars at 2 years. You slept through the night at 8 weeks on the nose (and started waking each night again at 4 months on the nose). You became a big sister for the world to see at 2 and a half years. 9 months before that is when you really became a big sister. Since that time you have blossomed and we have seen milestones the likes of which we never anticipated from a 2 year old. You would sing the in-utero Quail to sleep and cover my burgeoning  belly with a blanket. You named your sister Baby Quailee and would tell her small shape that you loved her and couldn’t wait to meet her. You would stand quietly by while I barfed each morning, either holding my hair back or munching on a pack of gummy bears you had served yourself and then ask me if I was all better. You witnessed my hormonal fits and “blew away my crankies” and then asked if I was happy now.  You stayed your first night without us in the loving care of your Gramma and told her how your Momma was at Baby Quailee’s house (aka the hospital). You welcomed her home that first night out of the hospital with the generous words, “I love you Baby Quailee, you’re my best friend I ever had”. And you bowled us over with your grace and good nature as you watched your sister nurse your Momma and sat quietly by and then unprompted took her hand in yours to comfort her.  What an incredible spirit for such a little soul.
And now with with you dear Quail we don’t feel the need to read the week by week reports of expectations. We are able to sit back and watch as your feathers unfurl at your own pace. We watch hopefully into your nest for signs of a smile and rejoice when you giggle with a simple tickle.  Our best game to date is to put you, dear Quail; on your belly and watch you push your arms up and over as you figure out how to get out of serving tummy time. We revel in your contemplative gaze as you wait for us to look at you and then burst into an eye-crinkling smile once we’ve made eye contact. We lean in for a kiss as you chortle your vowel recital to us in the early morning light.  We shop for new toys to hand you as you practice bringing your hands to midline and smooth hand to hand transfers. We bend down to cheer you on as you grab your small foot to hoist it up to your rosebud of a mouth. Each day is a milestone as you continue to stoicly gain your 1/2 oz of weight blowing us further and further away from the stormcloud of potential open-heart surgery.  We rejoiced as you have moved from eating from a syringe, to an SNS system, to a Soothie Bottle, to a Dr. Brown’s to the start of nursing directly. The weekend I was able to nurse you to sleep at 6 months for the first time is one of our proudest moments to date.
You both, dear Loves, have given us the sweetest of memories in your short lives with us.  We will continue to celebrate your  milesstones- from pooping in the potty, to sitting independently, to your first dance recitals.  From first teeth, to swinging out over the slide at the park before going down, to your first tea party. From first days at daycare, school, dance class and trips on the airplane. From first bites of cereal to pouring a glass of banana juice “my own self”. From the first delicately laid out fall-on-the-floor tantrum, to your wise advice to me that, “You make people sad when you are frustrated Mommy. You need to be nice to be a good Christian.” From both of your blessedly steady growth curves to your burgeoning show of memory as the nurse comes into to give you your 15 month vaccinations and you wail at the mere sight of her with that awful tray.
We are so very blessed to have so many special moments together already and can’t wait to see what the future holds each day anew.
Love, Momma   

Fave-O-Lit Friday

Baby Ballerina

Baby Ballerina

 

 

 
Special Blessings, Special Vocabulary
 
By: Kimberlee Kadar-Kallen 
 
Kimberlee Kadar-Kallen is mother to Eliza, born with Down
 syndrome and AVSD. Eliza spent her first months in heart
 failure until her heart repair. But now at almost four years
 of age, she is thriving as a homeschooled child alongside
 her six siblings. Kimberlee blogs at Pondered in My Heart.
 
When a family first receives the news that they may have a
 child with Down syndrome, they are likely to encounter some
 new vocabulary not previously part of their everyday
 lexicon. Over time these new, unfamiliar words lose their
 cumbersome feel and become a comfortable part of everyday
 life, much like an unyielding new pair of shoes softens and
 grows familiar. I thought I would explain some of these
 terms and what they have come to mean for our family.
 
Nuchal fold – This is the delicious area of skin at the
 back of the neck that is extra thick and soft and smooshy in
 children with Down syndrome and therefore the perfect place
 to snuggle, nuzzle, bury-your-nose-in and cuddle your sweet
 baby. Michael says it’s his favorite spot to kiss Eliza.
 
Trisomy 21 – Trisomy means there are three copies of each
 chromosome instead of two, and it has been discovered that
 cuteness is located on the 21 st chromosome. Be prepared for
 unprecedented levels of cuteness, even if you have many
 other children who you think are cute.
 
Hypotonia – Sometimes referred to as poor muscle tone, what
 this really means is that all of Baby is super soft and
 cuddly. Synonyms for this condition are smoosh-ball,
 teddy-bear, snuggle-puss, honey-love, and so forth.
 Squeezing and hugging Baby is a frequent and irresistible
 temptation.
 
Short stature – Children with Down syndrome are typically
 short in stature due in part to short limbs. This just means
 parents and other loved ones will have abundant opportunity
 for exercise in the form of deep knee bends.
 
Speech therapists- This is another word for siblings. These
 are the children who will spend countless hours teaching
 your child with Down syndrome to talk and speak clearly.
 They will mimic sounds, invent oral exercises, play word
 games, demonstrate proper mouth movements, repeat key
 phrases, practice letters and numbers and loads more ad
 infinitum. Some therapists have unique methods such as
 requiring the client to say, ‘Guard, release the faun!’ in
 order to have the car sear unbuckled or repeating unusual
 words like ‘gastrovascular’, but you have to just put up
 with their quirks.
 
Developmental delays – What this really means is that for
 once you don’t have to say, ‘Oh, they grow up so fast!’ The
 delight of babyhood and toddlerhood is prolonged and there
 are ever so many more moments of it to savor. Baby will grow
 and learn in a slow and gentle manner and there will be
 plenty of opportunities to practice cheerleading along the
 way. You will also marvel and appreciate each little
 milestone that you may have taken for granted in all of your
 other children.
 
Congenital heart defect – This is really one of several
 code phrases for an intensive training course in learning
 the true meaning of Jesus, I trust in you. This training
 involves great spiritual growth and opportunity for
 deepening and greatly magnifying one’s prayer life. There
 may even be a special retreat involved where one can really
 progress in prayer. The special code term ‘open-heart
 surgery’ is often used for this unique retreat that takes
 place in a hospital.
 
Special needs child – All children are special and all
 children have needs. Both of these facts can sometimes be
 taken for granted, but that is less likely with special
 needs parenting. This child will force you to see things
 more closely to the way God sees things, which is very, very
 contrary to the way the world sees things. The ‘special
needs child’ instantly and unequivocally obliterates the
 blather of the world’s view of life. Each and every life is
 a precious gift from His hand, of equal value in His sight,
 and the special child makes that especially clear, every
 moment of every day.

Momma Monday- Momma went to the Beach!

Botany Bay

Botany Bay

 

 

The Happy Little Family just returned from a lovely weekend at Edisto Island with The Gahan Family to the wonderful news that Auntie Deb is engaged! We are thrilled to welcome our new Uncle Greg to the family and look forward to meeting him this weekend!

 

We’ll get back on the bloggin track soon…baby beach pictures to come!

Gratitude Journal

 

Paradise

Paradise

1. a 6 month old baby successfully nursing for the first time

2. Kathy

3.nice audiologists helping to identify potential problems early

4. the gift of being able to nurse your small ones to sleep

5. kitty-cat pink jammies

6. a smile keeping you company in the middle of the night

7. good friends, good food, a good time for all-especially the kiddos

8. pink tutus

9. silliness

10. sweetness amongst sisters

11. tylenol and coffee helping a migraine

12. kissing the soft fontanel on a baby’s head when you get to feel her heartbeat quicken in response

13. small ones asleep early at night

14. a small meal and drink shared with just Lovey

15. Middle of the night inspiration

16. Baby Ballerinas

17. Red velvet cupcakes

18. pink ice cream cones with gummies mixed in

19. A toddler taking the time ahead to tell you they have to poop

20. competent ENT

21. ear tubes

Zuzu

Summer Happiness

Summer Happiness

 

Zuzu is going to start taking classes this fall. She is signed up for swimming and dance class and she is ecstatic. Of course being the wildflower she is- she is ecstatic about everything! I’m a little worried about how class-time will go- if she will cooperate and fall into line or continue to do her version of the silly-willy-nilly dance as inspired by Zoe of her Zoe Dance Moves DVD. She’s been practicing nightly for Ms. Fain. I guess time will tell and if it is too soon or she is too young to start classes we’ll try again in a few months. In the meantime she is tickled pink to be signed up like a big girl for both dance and swimming with her pals from her little school.

She is the kindest little big girl. Last night I came home with a headache and told her this. She informed me that we keep the ice-packs and the Popsicles above the refrigerator and I could get them if I want. This morning she woke up and asked if I was still sick and before I could reply let me know that I can always stay home with her and she’ll take me to the doctor. It’s nice to be taken care of.

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!