Monday, March 21, 2011

Just In Case You Were Wondering...

Yes, we’re still alive and kickin’. It’s been quite an eventful month and the past 2 weeks have been full of appointments and best of all, MILESTONES!!
...Waiting to go into surgery...
First of all, Austin’s Adenoidectomy went really well. He also had tubes put in his ears. You would’ve never known he’d had surgery, but he did have a fever last week due to some sort of virus.
Austin had a swallow study today. We had to go Downtown (Dallas) to Baylor of Dallas Hospital. We had a really nice Speech Therapist who evaluated Austin. He drank out of his straw cup like a big boy! Based on the swallow study, everything looks okay. No aspiration, which is good. However, she did notice that liquid and food sometimes gets “stuck” in the pockets. Don’t ask me what this means, because it’s definitely not my specialty. Apparently, he gets the food out of the pockets on his own. This might explain why he doesn’t want to take a lot of his bottle at once or even at all. All of this has to do with the low tone. He will eventually build up his oral motor muscles, but for now she recommends Speech/Oral Motor/Food Therapy. So, I guess we can add another therapy to our list. I’m all for it! Our schedule is super busy and it seems like we’re always going. The speech therapist also recommended weaning completely from the bottle. This will be easy because Austin’s basically weaned himself…he does still get a bottle at night though. That will soon be replaced with a sippy straw cup of milk. Oh, what will I do with all the extra counter space once the bottle rack is retired? The possibilities are endess ;-)

In addition to Occupational Therapy, we’ve started Private Physical Therapy at Children’s on Tuesdays. This means that Austin is receiving Therapy twice a week, which is awesome.

As most of you know, I’d been very concerned with the fact that Austin wasn’t sitting independently. He would constantly arch his back and “fling” himself back. I’m happy to say that Austin is officially an independent sitter. I can leave him in the sitting position and not worry that he’ll “fling” himself back. He’s also able to get into the sitting position on his own when I put him on his tummy and vice versa. How did this happen? Well, I started sitting in front of him, instead of behind him. It turns out, he’s not interested in flinging himself back when no one is there to catch him.
...sitting like a BIG boy at our Mommy and Me Class...

The Milestones keep coming…he is also drinking from a straw! Like I said earlier, bottles are about to be a thing of the past.

Austin has been having episodes of his body going almost stiff and crossing his eyes. They only last for a matter of seconds. I wasn’t sure what to think…but my mom brought up the fact that it might be seizures. I spoke to Dr. C about it and she said it could just be a behavior or it could be a seizure. She referred us to a neurologist and they worked us in for a Sleep Deprived EEG on Wednesday. In case you’re not familiar with what a Sleep Deprived EEG is, let me fill you in. Basically, they want Austin to sleep during his EEG. Therefore, they recommend no more than 4 hours of sleep the night before. I laughed out loud when I read that. First of all, if Austin’s tired, there’s no such thing as keeping him awake. He’ll sleep anywhere. I can’t distract him with video games or other activities like I could with an older child. I’m just going to keep all the lights on and try to keep him up as late as possible on Tuesday night and wake him up extra early on Wednesday morning. Don’t ask me how I’ll keep him awake on the ride over there…it’s about 20 minutes away. This should be interesting, to say the least. I’m hoping these episodes are simply a behavior and not related to some type of seizure. That’s scary.

Austin’s annual thyroid test came back a little high, but not too terribly high. Dr. C referred us to a Thyroid Specialist at Children’s to get it checked out. We have an appointment next week. This comes as no surprise because Thyroid issues are common amongst children with Down syndrome. I’m just thankful it wasn’t alarmingly high, so I think they’ll just retest and go from there.

It’s nice to finally sit down and update. I feel like I’ve been neglecting this poor blog. Today is National Down syndrome Day! It’s a wonderful day to remember how thankful we are for that extra chromosome and all the beauty and goodness it brings.

“Because of you, I love a little more. Because of you, I take time to give an extra hug goodbye. Because of you, I live today, before I worry about tomorrow. Because of you, I will fight harder and longer for what I know is right. Because of you, today, I am me”

Here’s a FACT (one of my favorites) :
There is a wide variation in mental abilities, behavior and physical development in individuals with Down syndrome. Each individual has his/her own unique personality, capabilities and talents. In other words, people with Down syndrome are not all the same; just like individuals in the typical population are not all the same.

“Having a child with Down syndrome is like taking the scenic route. You still get where you are going. It may take a little longer, but it will be well worth the trip!”

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