Ellee's early summer fun

Here is what Ellee has been up to so far this summer.

Playing in the muddle (mud puddle) with her friend Ben

Feeding Katie breakfast

Playing dress up with Katie

Being a spider monkey at the park

Playing in the rain

Making a mess with felt stories

Creating a rock collection

Fishing with Daddy

Reading to Katie

Building a coral reef

Just being an adorable sweet sister

PT, Tummy, Pinchers, & Sitting

Katie is doing very well with her physical therapy. It is very helpful to have someone who knows Katie and her abilities and can immediately see her improvements over time and knows what needs to be worked on next.

Katie loves tummy time and spends about 97% of her time on the ground or in bed on her tummy. Her physical therapist is THRILLED. I have always heard about how important tummy time is for physical development, but she stresses that it is huge. Children that do not tolerate tummy time, even typical children, are often delayed in their crawling and walking.

Katie is a little delayed in independent sitting. The range for typical children is 5-8 months with most able at 6 months to hold themselves in sitting position for a few seconds. Katie is improving but today she turned 8 months and I wouldn’t yet call a few seconds of independent sitting (although I think it could be any day now). We are working with her by giving her a lot of practice in supported sitting both in her high chair and on the ground with support from my legs or light support on her shoulders. Today she held herself in sitting by holding my fingers.

I talked with her therapist about her sitting delay. Her therapist said if she could choose between all the things she is doing on her tummy vs her sitting she would choose her tummy activities. She said that sitting will come and not to worry. She said sitting is a more passive process. Once babies are able to sit sometimes they become so passive they have to be ‘forced’ back on their tummies to start moving.

Here are some pictures of her tummy activities that her therapist loves (and some things we need to work on).

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Left-arm strength and twisting: she is much stronger on her left side. 

 

Right-arm strength with good knee bend: notice how much weaker her right side is compared to the first picture. We need to make her do this more often to strengthen it up. 

More left-arm strength but her hand needs to be palm down.

Double handed toy reach

Right hand fine grasping (pincher) practice with left arm support

Left hand fine grasping (pincher) practice

Just a cute one 

 

 Another cute one

 

One more cutie, with both arm support

Katie-isms!

At the moment, her primary form of communication is blowing raspberries and she has been doing so for months.

In the last two weeks I have started hearing babbling vowel sounds. Usually these sounds are slipping into a very long exhaling aaaa, like: “aaaadaaaaaamaaabaaaalaaaa” etc. Sometimes we get long running repeats like: “mamamamama” or “bababababa”

• Mama
• Dada 
• Baba 
• Lala 
• Wawa 
• Nana

On four occasions I have heard a “Mama” without any sounds before or after. Of course I acted like a goon and gave lots of praise and hugs.

Ellee-isms

• “My butt needs to be panted” (her pants had slid down a little climbing into the car seat)
• “We need to go ice-creaming” 
• “I’m drinking water like a camel” 
• She has a song about punctuation which says: Punc, Punc, Punctuation. Ellee sings it as “Hug, Hug, Hugtuation”

Last NY Cardiology appointment

Today we went to Syracuse for Katie’s last appointment with Dr. Egan (her pediatric cardiologist). He has followed her since her pre-natal diagnosis over a year ago. He is a great doctor and we are very sad to say good-bye. He has assured us the doctors in Dallas are great and we will be in good hands. I am still anxious about finding her a new doctor who will take as much time and care with her.

Katie is doing great. Her heart murmur is getting quieter. The right ventricle heart muscle was thicker from overworking prior to surgery but is now completely thinned out and normal size. All indications suggest she will not need another surgery (but they never say never). She will be monitored about once a year for the rest of her life.

Diagnosis Anniversary

It has been quite a year. One year ago today we got the call that we were having a baby girl with Down syndrome. Today we have our precious, 6 month old, smiley, playing, mobile, giggling, super duper heart, wonder Katie.

Just after Katie’s diagnosis I read a website written by parents reflecting months (or years) later about what they wished they had known the day they received their child’s Down syndrome diagnosis. Find it here from the National Down Syndrome Congress. No specific quote stuck in my mind but the general message that I remember was: worry less, she will look like you, there are tons of similarities and only a few differences, life is full of joy, the love is deep.

Worry less: Once I really started reading about Down syndrome I didn’t worry about the Down syndrome itself, adults with Down syndrome can hold jobs, drive, and get married. Some adults need assistance but not intensive intervention. However, I did worry quite a bit about the possible health complications. The health problems faced by each individual with DS are a wide spectrum, a few face many, a few face none, and most face one or two. Katie has only faced a heart defect which was fixed surgically. Katie could develop other problems down the line but that could be said for any child. We will watch Katie as we watch Ellee and deal with the future as it comes. There is no need to worry any more than a parent worries about every child.

She will look like you: I hear this regularly and it makes me so happy. Ellee’s looks favor my husband and Katie’s looks favor me. Katie has 47 chromosomes but they are all from Mike and me. She has our looks, our genetic strengths and genetic weaknesses; just like Ellee does. She is our child and we get to walk her life’s journey by her side and see who she will become. She is not ‘something different’ from us; rather, she has a little bit extra!

There are tons of similarities and only a few differences: So far with Katie the only difference beyond a few superficial physical characteristics (beautiful almond eyes, crease in the palm of her hand, bent pinkie fingers, smaller body, and flatter facial profile) is her heart defect. Beyond that, she is a baby and does EVERYTHING a 6 month old baby does. She is healthy, strong, and happy. She rolls around the room, studies faces, plays with toys, sleeps a lot, eats a lot, giggles, blows raspberries, babbles, chews her toes, sucks her fingers, and cries when she needs help.

Life is full of joy: We have a happy, healthy, cuddly, baby who looks deep in our eyes, pats our cheek, smiles and nuzzles our neck. Every single day is full of joy.

The love is deep: The Down syndrome has in NO way changed how we love Katie. We love her the same way we love Ellee, the same way every parent should love their child, with our whole heart unconditionally. Katie loves us the same way every baby loves their parents, with her whole heart unconditionally.

A year later, a wonderful year later, I would not change anything about Katie, I would not change anything about how we handled this year (except worrying less!). I cherish every day and look forward to the future with our little family.