Happy New Year

Happy New Year, friends!

We started the year off with a family dinner and a movie. The adults played cards and the kids watched tv. We were in bed before 11 🙂 ahhh…parenthood.
Our winter break was mostly taken over by The Cold of 2012, but I managed to crochet and have a small bit of social time with friends as well.

Today we had Eli’s vision checked through a program called Infant See. It’s super important for any child but especially those with Ds. I wondered how on earth they could check the vision of an 8 month old but they did! She shined a flashlight in his eyes, used magnifying glasses to peer in there, a d then dilated them to look at the back of his eyes.
She used a special microscope that I’m assuming measured the light in his eyes and allowed her to look back there. But I’m not an eye doctor so who knows? Haha
The verdict? No glasses for now. *whew* she said the pigment in the back of his eyes was barely there but not unusual for someone with blue eyes. It just means he will have some light sensitivity.
She also pointed out that he is far-sighted (more so in his left eye), which I thought was unusual for an infant.
EDIT: right eye- +0.50; left eye- +3.25 both eyes have astigmatism right eye- 0.75/175; left eye- 0.75/39…yikes! Any advice on that? Dr. said it was very typical for an infant? Eye Info
Since he’s young and his vision is still developing it may change but for now she doesn’t need to see him back unless I notice any issues.
If his eyes remain far-sighted in a year from now, we will consider glasses at that point.
She scared me a bit by informing me of common eye problems related to Ds…and said that with far-sightedness I need to watch for his eyes to turn inward. Serious? Ugh…so we will keep an eye on him and pray that his vision improves. But it’s good news so we will take it!

Eli’s sleep study is fast approaching and I’m getting anxious. Please pray that he stays well and tolerates the study. It’s not until the end of the month and lots can change between now and then.
We also have his follow up with his ENT to check how his aids are functioning and evaluate him for tubes. Please tubes!!!!

In positive news, we met with our ECI coordinator who finally gave us the names of our new OT and ST. They were *supposed* to call today or by Tuesday at noon the latest. No word yet but we DO have therapists so yay for that!
EDIT: just scheduled our ST! Yay!!!!
Eli’s doing very well with his therapy. His arm strength is what we work on most these days. His coordination, protection reflexes and fine motor skills for reaching/grabbing/self-feeding.
Tummy time is difficult because of his reflux…and he just in general doesn’t like it…and I’m a weenie who doesn’t like to hear her baby cry.
He’s ready to crawl but his arms are too weak. Which means he’s physically not ready even if he’s cognitively there.
He stands and sits incredibly well. Which reminds me, I need to make some more videos!
The older he’s getting the more his little personality comes out.

He’s head over heals for momma and daddy. <;;3 laughs and smiles so much more now. It's awesome.

The biggest struggles for me these days are milestones…no…I mean other people, and work. I guess what I mean by other people is its one of two things right now. Either they want to know why he isn’t doing “xyz” (“Oh! He’s 8 months now! Does he have teeth?…crawl?…have words?…) or they want to diagnose him because he’s not super happy baby with them like he is with momma and daddy, so something must be wrong with him. Lol heck…he may refuse food from Barry but later take it from me. Or fight a nap when I try to put him down but fall easily into sleep with Barry. He’s a turkey. He knows his parents.
This momma has to learn that people mean well or just have no clue…so don’t bite their heads off.
And work. Well. I love it. It was my life. And I’m tired of complaining about missing out on my new life. So I just stopped. But it’s still there nagging at me. So I’ve committed that one to prayer and I’m giving it to God. I need to be ok with whatever happens for the 2013-2014 school year. God has plans and I can’t pretend to know what those are.
A friend of mine texted me this today: Thinking about you today. I know it’s rough going back to work when you want to be home with your sweet Eli. I am praying for a rush of pure joy for you today 🙂 Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything. (James 1:2-4 NIV)

Kept my smile all day. 🙂
So I will leave you with that and petition you to continue to pray for our little man. We have lots of doctors appointments in the next 6 weeks that will potentially improve Eli’s life dramatically.


12 Replies to “Happy New Year”

  1. Your little guy is so handsome. Glad he is doing so well. I had my baby girl in October and she has down syndrome too. Thank you for sharing!

      1. Bailee is doing great! She has AV Canal defect, but has been very healthy. She has lots of follow up with her cardiologist and is working on gaining weight. She will need open heart surgery to correct the defect. I feel so blessed that she is doing so well. I will keep Eli in my prayers!

      2. That is wonderful news!! I will keep little Bailee in my prayers as well. We have tons of friends who have new whole hearts and are doing wonderfully 🙂 Do they know when her first surgery will be?

      3. Thanks for the prayers. We had a cardiology follow today at UT Physicians. She is starting on medication and increasing calorie intake. We should know more about when surgery will be scheduled at her next follow up in 4 weeks. She weighs 10 lbs now! Hooray!

  2. Let’s talk about that eye appointment–I know it’s scary when they start talking about ALL of things that could happen. Owen had a pretty good astigmatism (mostly likely due to genetics of his parents who both have them!) and was far sighted as well. When we went back 6 months later, both had gotten better. When we went back for his 2 year check up, both had gotten so much better that we don’t have to go back until he turns 4 (which is this May). So I would say just keep up with the appointments and know that things have a way of changing and quickly.

    I totally understand your feelings about other people and their inquiring minds or know it all attitudes (I recently wrote a post on it myself!). It will unfortunately continue to happen mostly because people who aren’t living this life don’t understand it. Yes, we can ignore it or smile and move on or try to educate people. For me it just depends on exactly what was said and whether I feel like the person is worth even bothering with to be honest. I am sorry that you have to deal with that, but i always found when my kiddo was younger that if I said something to the effect of “he will get there/do that/have those in his own time”, people would either leave me alone or ask about Down syndrome and how it affects milestones.

    I will continue to keep Mr. Eli in my prayers as well as his mom and dad. You are doing a great job and just based on his pictures I can see that he is an amazing little guy!

    1. Thank you so much my friend 🙂
      I am hopeful that Eli will have the same thing happen for him. We already have the aids so I don’t even know where glasses would fit on his little face anyhow! lol

      ugh people suck sometimes, dont they? lol But you are right I work hard to be positive and respond appropriately dependnig on the person. *sigh* I just get down about it sometimes.

  3. Little Eli is so cute!! Good luck with all of your appointments over the next 6 weeks! This is a wild and crazy ride, isn’t it? 🙂

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