Where We Are At: Family Update

I’ve been spending a lot of time working with the kids on their specific therapy treatments and reflecting on their development.
They are all so different from each other, which I guess is an obvious statement to make, but still, I’m really blown away when I spend time thinking about it.
I also foolishly thought that having a “typical” child would some how be easier or less stressful than having Eli. Isn’t that silly? Perhaps it’s because literally everyone you speak to 100% believes that having a child labeled as “special needs” means your life is harder automatically. And maybe for some people it is (not even taking into account medical needs, etc). But Eli is exactly what we expected when we dreamed of having children. He’s like his daddy- smooth, calm, easy going and sweet. He’s not hard or more work or difficult. He seems perfectly typical to me!
Most of the stuff that stresses me out is mommy stuff- making sure I’m getting him what he needs. Keeping up with therapies/development/milestones and making sure he’s healthy (thyroid, CDC, growth…etc) has become a part of our lives more than I ever anticipated. That doesn’t feel like a burden to me.
Truth be told, though, all three of my children have “special needs”. They each need different things. There is no mold that they all fit into. And I’m happy to make sure they are getting what they need ;)
I’m even more happy to be home full time offering these things.

So what are we working on now?
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Eli- Feeding had suddenly become a challenge. He thinks when it’s time to eat that he gets dinner and a show- so we are working on him focusing on eating and mommy not singing so he will eat supper…lol He is so active now, walking all over the house and too busy to be bothered to do anything he doesn’t want to do. He will tell me he is hungry, I will prepare food at our normal eating times, and once he sits down, he doesn’t want it anymore. Even favorite foods. So I’m working on stressing less about his eating, and letting him decide how he feels about that- without singing…since that seems to be the only way I can get him to eat unless he is starving.
I’ve also moved his meal times later and that has helped a ton.
His walking is improving, and he met his goal of walking 25ft unassisted. We have now moved to working on going outside and to the park. There are so many things he can get into now- climbing and sliding, and exploring. I’m so proud of him for this huge milestone and he’s so much happier with his new independence.
His speech is starting to pick up. He is babbling all the time, signing like crazy too. Recently he has just started to imitate sounds. Mind you, this is only when he wants to do it…but his favorite word as of late is “dada”. lol of course.
Eli will see his new Osteopathic doctor this month which I am excited about. She gave him an adjustment- I’ve really enjoyed working with her and we are looking forward to the positive benefits of using her services. We also plan to have a doctor look at his past thyroid history just to make sure there isn’t anything else we can do about the subclinical hypothyroidism diagnosis we got a while back. It’s so difficult to find doctors who will actually support that…so we will see how that goes.

Ruby- Communication has been our biggest road block, but she’s just decided that perhaps she would like to try talking. She did start an “ah” conversation with me the other day and now she walks around saying “dada” as if she had always been doing it- that was so cool! Her voice is so sweet, and she is learning so so much!
Feeding has improved greatly. We are also working on using a straw sippy and phasing out the bottle. I’m following this awesome feeding guide, and along with the help of our SLP, OT, and SST we are working on some great stuff for Ruby.

I’m also trying to do some research on CAH. I’m wondering if an adrenal problem could be causing some of our struggles…upset tummy, spitting up, crankiness, sensory dysfunction…it just is a huge part of our lives right now and I want Ruby to be as happy and healthy as possible.
A great list of labs I plan to get checked out can be found here: Down Syndrome Support
In the mean time, we have cut out all dairy and gluten. We have seen a happier Ruby for it. Honestly, I don’t know if I have ever seen her this happy for an extended period of time before. I know she loves it and so do we.
Now that she is a year old, she is walking, talking and happier than ever. So proud!
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Wyatt- We are working on tummy time and talking. He is a tummy time pro now, and he;s falling into a nice routine as he grows and his alert times change.
Eli and Wyatt are very similar. They are both very easing going, sweet and smile easily. As infants, they were both very chatty (though Eli’s speech has dropped off and then fluxed as he has grown). Wyatt is super social and does exactly what our SLP have been trying to get E and R to do for months/years. When he starts talking, he waits for you to respond and make sounds back at him. It becomes a conversation. And if he stops, you can make a sound and he will start again. It’s really amazing and considering I spend all day feeling like I talk to myself, it’s kind of nice to see this speech development.
Anyway, Wyatt is working on sleep training too, which will hopefully mean more sleep for me…hopefully.
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There’s my update! Summer is nearly over, and I’m keeping busy with the kids and my photography. Blink, and it all changes. In fact, I started this post 4 weeks ago…and since I just now got to post, I had to make many changes to what I said the kids were doing. These three are changing all the time! ;)
Yay for boring family update hehe ;) we are busy and I like it this way.

http://barrentobeautiful.wordpress.com/2014/05/23/am-i-enough/

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2 Responses to Where We Are At: Family Update

  1. vandeblogger says:

    Daniel was definitely our easiest baby! I’m not sure what people expect of babies with Down syndrome, but he certainly wasn’t harder than our others.

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