I have sooooo much I want to post! But I am feeling swamped with many, many things I want to do, including normal home things! Today we’re going to pick strawberries, get Razzie’s nails trimmed, buy fireworks, go to the bank, wash the dishes, make dinner, make a phone call, maybe go to a one-man-band at the library…. and maybe blog and read and rest? We are doing good at sleeping at night and staying awake in the daytime. Mornings are alert but the last couple days are hard to remember through a fog. Afternoons and evenings are harder. Just a few more days, though and jet lag will be history.
I wanted to make some notes on Jordani while they are more fresh on my mind.
Watery eyes – both his eyes seem to have intermittent drainage problems. His eyes were clear and the skin not puffy, but this is noted in his health file and we observed his eyes “crying” during visits. Usually, just one eye at a time.
Sucking fingers – the space between his fingers is red and raw with sores from sucking on his fingers too much. Putting socks on his hands looks like it will be a good temporary solution, since he didn’t try to take them off for over an hour during a visit. We expect him to suck on his fingers a lot during the first month or so of transition in our home. After the fear recedes and he becomes more familiar, we expect this behavior to become a bedtime-only behavior… we’ll see. I hope he doesn’t have any fungus issues on his hands.
Eating/texture – Dancho, with his mouth open, seems to have a very shallow mouth/palette. Maybe it just looks this way, because my girls have a very narrow top palette and his is wide. His bottle nipple rests all the way back, right in his throat when he eats and he has no concept of using his tongue to move foods around his mouth. When we put a baby puff snack in his mouth he stuck his tongue out and tried to get it off. When we pushed it further back in his mouth, he stuck his fingers in his mouth to help him make the swallowing motion and he did “eat” them. I think our first line of action on his untrained tongue and mouth will be to intermittently throughout the day pop a small, sweet snack or liquid into his mouth and let him learn to manipulate it. I think Anna will love to be his snack-giver… especially if she gets to eat some of it.
We are going to try and find a long nipple for his bottles like they use at the orphanage, so that we have a fallback… a way that is familiar for him to eat so that he at least is getting his regular meals. We don’t want to shock him into a feeding strike if we can help it.
He does not sound like he is aspirating liquids. I hope this is the case! 🙂
Crawling/walking: I don’t think this will be an issue. Being around siblings on a clean floor with random toys strewn about… I think the natural interaction every day with us will be all the motivation he needs to become proficient in these.
Therapy – Unless we have health concerns, we will not be putting Jordan into therapy for some time. His daily social health and family integration will be plenty for him to be doing for the first months or year. At his age, simple guided play will be plenty of therapy. We may consult a therapist (or friend) to get ideas on helpful play for kids with Down Syndrome. First, though, he needs to learn a little cause and effect (mimicking with Mama), object permanence (peek a boo!), trust, safety, and family.
Ok, there’s more, I’m sure – but it’s time to dress the kids for berry picking!
Ok, so Jackie’s pediatric occupational therapist dealt primarily with eating issues when Jackie was an infant. She gagged and would not eat solid foods. I would definitely consult an OT for all of his eating issues. It is better to have an expert on your side then wing it and teach him mistakes. In my experience they take a lot longer to unlearn mistakes and bad habits then typical kids. She would also help you with ideas for the finger sucking later on. I think it is wise to let him keep this comfort for a few months.
Food that has been thickened is easier to swallow than cheerios and such. They make a special thickener just for this purpose. This would be a great way to introduce his throat muscles into swallowing. Remember, this is not just about texture, this is about using muscles he hasn’t used before. They need to be flexed and stretched slowly, just like starting a new exercise program. Introduce texture through toys. I could go on and on….. but I won’t. 😉 Love you all! So happy to see you last night!
Hollie, I thought of you when I wrote this post. I was hoping you would chime in! Thanks for the information!
I forgot to add Jordan’s ears (and possible need for tubes) to the list. And sleep apnea, which we talked about the other night. 😀
You are such a good mama to him already!