Gigi Update for Down Syndrome Awareness Month 

I haven’t done too much this month in terms of spreading awareness, at least not like last year where I wrote a post a day. So I’ve decided that maybe I’ll give an update on Gigi. I haven’t done that in a while and people often ask me how she’s doing, which I appreciate. I guess that by me telling you what she’s up to these days will spread a little awareness in itself.

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Gigi, who will turn two mid-November, is doing very well! Time has flown by and I’ve enjoyed every second with her. She is adored by her parents and sisters. She has a sweet personality and can be quite sensitive. Sometimes if we get too loud, for example when we laugh with her because of the silly things she does, that bottom lip will start to quiver and she’ll cry. 

Gigi loves to hug…a lot. She is the best hugger out of all of my kids. She often scoots over to me and hugs my leg while I’m making dinner, it’s the cutest thing.

Motor skills-wise Gigi will now army crawl if you put her on her belly and entice her with something exciting like a tower of blocks that she can knock down or some food, otherwise she prefers to just hang out when on her belly. She does not yet have the muscle tone to get on her hands and knees. The low muscle tone is common with Down syndrome and is also preventing her from pulling up, although she tries. She is nowhere near walking at this time and the longest she’ll bear weight on her legs is about a minute, although this is an improvement because recently she wouldn’t bear any weight. For now we are working on all of this with her. We have a special walker, called a gait trainer, which is on loan to us that she practices using every now and then.

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That being said, don’t assume she’s a stationary blob that sits in one place all day. She has been mobile for about a year now as she has figured out the butt scoot. This scoot is her preferred method of getting around and is partly what has prevented her from developing her other gross motor skills. Why crawl or walk when I’m happy getting around this way? Look out if your floors are dirty, or just don’t invite us over because Gigi will butt scoot from one end of your house to the other picking up every bit of dirt with the sides of her legs and your dirty floor secret will be exposed.

So where before when she was an infant and I couldn’t really “tell” that she has Down syndrome, looking at her gross motor skills now I can say for sure that she definitely does have Down syndrome (ha ha). In other words the differences are becoming more and more noticeable. At the end of the day I reassure myself that she’ll hit the milestones eventually.
On the plus side, where Gigi is lacking in gross motor she has made up for in fine motor. I won’t go into a lot of detail there but she does very well feeding herself finger foods, she turns pages nicely, stacks up to 4 blocks, and so on.  Gigi also has a great attention span. 20161007_084805.jpg Her therapists often comment in amazement on how well she can focus on a task.

Gigi loves to hang out with her sisters. She loves to imitate – brush hair, try to put on her shoes and clothes, talk on the phone, use hand sanitizer and best of all, clean! I’ll give her a wet paper towel and she’ll wash the floor and the walls and sometimes her belly.

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She can tear the house apart very quickly going from one cabinet to the next taking everything out of its place. Some people may refer to their kids as a tornado but I like to refer to her as a hurricane – a little more slow moving but just as damaging. She loves to put things on shelves she can reach and stuff things into random spaces. She loves loves loves books.

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I’m not sure if she enjoys traveling but she tolerates it well. We took her all over this spring and summer from as far south as D.C. to as far north as Maine. She did amazing on a recent trip to Florida.

Her pacifier is her tongue (how convenient). Her lovey, or security blanket, is my hair (how annoying). Speaking of hair, hers is freakishly long. This has nothing to do with Down syndrome, it’s just long.

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Gigi is still breastfeeding. The child that many doctors told me may not breastfeed because she would be born with Down syndrome will not give up nursing. I never expected it to go this long. She refuses bottles. She learned the straw over a year ago but refuses that along with any kind of cup. I’m not sure if there is a sensory issue with water or thin liquids but we’re hopefully going to get answers when we see a speech pathologist who specializes in pediatric feeding disorders in November. The fact that I am Gigi’s primary source of hydration is stressful.

I’d say she has three words – mama, da, and up. She says “moo” if I ask her what the cow says and she says “boc” if I ask her what the chicken says. She knows over 30 signs and has learned most of them from the Signing Time DVDs that we show her. Sometimes, if I need a break, I put the DVD on and she watches intently. As I mentioned, her attention span has always been something that therapists were impressed with. She watches the DVD and I’ll make dinner. As a result, she knows more signs than me. There have been occasions where I’ve asked her if she knows the sign for something, she’ll make a sign and then I’ll Google it to check and wouldn’t you know she was right. So she’ll make the sign if I ask her to or she’ll spontaneously make the sign if I’m just talking to her and say the word. We’re working on having her actually use the sign to ask me for something.

Health-wise we’ve been so lucky. Other than her respiratory illness back in January that landed her in the hospital for almost 2 weeks, things have been uneventful. As we head back into cold and flu season I’m getting a little more on edge. The hole in her heart seems to be getting smaller and as I mentioned in a previous blog post it now looks like there will be no need for surgical intervention and her next visit to the cardiologist won’t be necessary until she is around age five. Her visits to specialists in general are getting less frequent. We went to the pediatrician’s office just the other day for our flu shots and it felt strange because we hadn’t been there in months. I hope we keep at that pace!

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Medical appointments have decreased but therapies are still very busy. Gigi has physical therapy (PT) and speech therapy (ST) weekly for an hour.  She has occupational therapy (OT) and a visit with a developmental specialist every other week for an hour. She’s recently graduated from her weekly 1.5 hour playgroup with early intervention that I attend with her to a 2.5 hour drop-off where I hide outside the room and listen for her crying or sit in the car or at Starbucks and wait for the therapists to call and tell me to come pick her up because she’s fallen asleep. She’s only attended this group for 4 weeks at this point and it’s exhausting and overwhelming for her. She cries when I leave her but stops right away. Then she may cry on and off her and there. Socially she’s improving every week and made much progress from the first week where according to the therapists, she sat by herself with her head down and sucked on her tongue. I haven’t worked in a year but am glad I can take the time off to attend these therapies with her.

On a fun note, Gigi has a new friend in the neighborhood who was born in June extra special like her. Her name is Mae and she lives only about 3 or 4 blocks away and we’re so excited to have met Mae and her family.  img_6614.jpg

Well now you’re all caught up on how Gigi is doing and what she’s been up to. Other than having therapy appointments being a little delayed did I mention anything very out of the ordinary? That’s the point!  

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5 thoughts on “Gigi Update for Down Syndrome Awareness Month 

  1. Great article. Gigi is definitely a product of all the wonderful familial are she gets. You are a fab family and she is so lucky to have you guys. And vice versa. I love her pics from this article.

    Liked by 1 person

  2. She is amazing. I didn’t even know your blog existed. It’s such a wonderful way to spread awareness because unless I walk in your shoes everyday, I’d have no idea what it’s like to raise a baby with DS. I was amazed how efficient she is in scooting, my babies never conquered that like she does. She is such a blessing from God!

    Like

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