Wednesday, November 10, 2010

"What's new?" Wednesday

Calvin continues to have OT every other Monday morning. S. came out this week, along with the Birth To Three Teacher J. They were able to point out Calvin's gains since the last time seeing him: turns head to follow an object or face 180 degrees on both tummy and back, turns towards noises, smiles more, hands hold object and bring it toward/in mouth, and holds head up longer in both tummy and sitting position. I also told them that Calvin is latching for nursing. These latches are not perfect and break often, so there is more work to come. I still worry about aspiration which will play into our future. I admit that I am really tired of the bottles. Bottle feeding is a lot less convenient than nursing. You can be a lot more lazy with nursing! I am tired of leaving and having a check-list to go around Calvin's feedings: meds, Guar, bottle, milk, pump parts, pump, bag it all and don't forget it! Nursing checklist: baby and mom. Plus, you can nap-nurse which I miss. I do not get to nap hardly at all because once I get the boys down and feed Calvin, I have to pump and then there's not much time before the cycle begins again where with nap-nursing, you can lay down and fall asleep and baby can take care of feeding himself! How awesome is that? Okay, I need to get back to reality. You can tell I'm hoping pretty badly to get there and next week's surgery may be just the ticket.

So, I was reading on the online Ds board and one commenter mentioned about 50% of the babies polled on there were home from OHS in 6 days or less. I am hoping and praying for that to be the case. I have been pretty stressed about next week's event. No surprise, I know. It is just a pain to have your baby over an hour away and in a position where you are not the primary care-giver. AND, it is hard on me (and others) to have a stressed out schedule with the other 2. All this said, the biggest hardship will be Calvin's well-being.

Okay, back to optimist-land...it's almost here, which means it's almost done! No more meds. Oh, Grandma JoJo brought to my attention last night that one thing she read about Guar (what we use to thicken Cal's bottles) is that it should be discontinued atleast 2 weeks prior to surgery as it can impact glucose levels! WHAT?? We are in trouble if that's the case. Please say an extra prayer about that one. I am not sure what to do. Joe says "stay the course". I might be calling the cardiologist today but the problem is he probably won't know...then the nutritionist? Maybe I'll call her, too. Then what? We have to thicken...Figuring everything out for Calvin has been a chore since day 1. That is what is not fair about having a child with Ds. It is not fair to the child mainly. It's pretty amazing to think how easy going and generally happy he his. He must trust he is well taken care of.

Well, back to bed. Enjoy the pics. I happen to think the 2nd to last picture of Calvin has angelic lighting.




"I'm tired!"




4 comments:

  1. 3:40am! Whoa sister! I know you must have been up pumping but man... tires me out just thinking about all you do in your day and then seeing the time of your post!

    Anyways I have been trying to keep up with reading about everyone. It's hard to with school work, and life in general.

    Anyways, I got pretty caught up in the last hour or so and wanted to say Hi :) and that I appreciate all the pictures and posts to stay updated. I really like the pictures of Nolie in Cal's seat in this post!! :D :D CUTE!

    Well I'm in class :/ better get back to my Photoshop project!

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  2. love the new pics. Call the co that makes the guar & ask. Depending on what they say, call the surgeon.

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  3. Just found your blog and have enjoyed reading through it. Calvin is such a sweet boy. I will be praying for you all with his surgery coming up.

    BTW, just reading about pumping and bottle feeding made me groan as I remembered going through that. But, it was totally worth it! Hopefully Calvin will pick up nursing after the surgery!

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  4. What a cutie-pie he is, Ilisa! :)

    You'll all be in my prayers on Monday!

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