Comings and Goings

I love Fridays!

I love Fridays (and Sundays) because everyone is home, there's always something good to eat, everyone catches up and spends time together.

I also love Fridays because our new (well, not so new anymore) home PT comes to visit Christian and she is stellar. Today she noticed a huge difference in his eyes and actually looking at things and people rather than looking through things. She said he was much more attentive and aware of his surroundings. I knew all of this, but I like when other people, especially therapists, offer these unsolicited findings.

Changes are coming...next week will be our last week of outpatient therapy. This is the therapy we have to physically go to outside of the home Monday-Thursday. Let me explain.

I'm about to have another baby (as if I hadn't mentioned this 100 times) and so next week is going to be our last week of outpatient therapy before I went on "maternity leave" from running around to appointments. I was planning on returning in mid January, but only to the OT program. However, we won't be returning to any of the outpatient therapies for the time being and this is why...

The PT we visit on Wednesdays is very young and just starting out. I haven't noticed too much effectiveness when she works with Christian. She does stuff I do with him at home and he's never really taken to her. He's always pretty fussy with her and so it was time to stop going. She also tag teams with the ST and the OT we see at home specializes in feedings anyway so we don't really need to go back to the outpatient ST at this point.

As for the OT program, there are two ladies we see. The OT on Thursdays is actually the main OT and she's going on maternity leave until April. No biggie, it wasn't too disappointing. The OT we see on Mondays and Tuesdays is actually an assistant (although she's been doing this work for like 20 years). The main OT told me the assistant can't work with Christian while she's gone because she's not "comfortable" with Christian being so "medically fragile" and not having as much of a medical background as the main OT. This was disappointing because we really liked her. Christian took to her and she was really knowledgeable. I don't know if this is coming from her, the main OT, or the policy they have. And I'm a little confused because they don't do anything with Christian except for their job - they work him out. They don't suction him, change his trach, etc. so it doesn't make much sense to me, but whatever. After thinking about it, it's for the best for the following reasons...

I was explained by the Early Interventionist that there is a difference between home therapy and outpatient therapy in that outpatient therapy is more of a medical setting following medical doctrine and criteria. While home therapists incorporate real life and family into their therapies. At first, I was like - whatever, I just want all the services. But now I've seen the difference and it's absolutely true. Our home therapists are A.W.E.S.O.M.E. They're "comfortable" with kids who are even on a ventilator, in other words, more "medically fragile" than Christian. They push Christian, they challenge him, and he reacts to them much differently, especially being at home. The outpatient therapies are more careful with Christian, they're not really into too much experimentation, and, in comparison, the home therapists are like, "Sure, why not!"

So this is the end (for now) of our outpatient therapy. I'm comfortable with this transition. When those therapists return, I can always call and make appointments, if needed. It's not off limits, but with Thanksgiving break being so calm for Christian without having to run around (he now hates bumpy car rides and cries when we have to go over speed bumps), I had a different perspective. He could use a break from going non stop, but this isn't over.

For the rest of the year, Christian will have two therapies a week but I'm arranging more in home therapy. I like the idea of having different therapists because different therapists bring out different qualities in Christian and it's nice to get feedback from several different points of view. I think Christian thrives more in his own environment.

More on progress - I'm not sure if this is progress, but I guess it is. Christian's become more sensitive with his hearing. For example, when our dog started barking, Christian cried. This is what he used to do before the accident, too. Not sure if it correlates to the same feelings, but something scared him and he showed emotion about it. He did the same thing when I sneezed behind him and he didn't know I was there. I'm calling it progress.

Christian has also been extremely receptive to tasting. He's now "tasted" mashed potatoes, yogurt, smoothie, orange, apple, and today he sucked on a pear. I'm not pushing this issue at all because, honestly, it's not on the top of my priority list for things I want him to do. But his OT was excited and we're going to do some more tasting next week. I'm just letting Christian lead the way. When he's ready, he's ready. This doesn't surprise me, though. Christian has been a good eater since birth. The OT also said we would see physical signs of him aspirating if it was happening. There's been nothing in his trach (but he hardly has any secretions anyway), he doesn't choke, and he hasn't been sick. So I'll update as we go!

And...I don't want to speak to soon, but...Christian has dramatically reduced his vomiting! SHHHHH! Don't say it out loud! But he's actually holding a majority of his food in! This is so huge! I'm so afraid that he'll go back to throwing up again but if he does, we're professionals at vomit clean up so we'll handle it. Anyhow, I'm really enjoying this new eating milestone and hopefully it will last.

So what do I chalk this sudden change up to? VITAMINS! Seriously, it's the only thing that correlates exactly with when Christian started holding food better and his attentiveness and vision changes occurred. Specifically the fish oil and magnesium. You can never pin point this stuff because we're always trying new things all at once, but I distinctly remember a change after we started the vitamins.

So that's where we're at folks. Christian is about to become a big brother soon and I can't wait to have them both to hold. I can't wait to be able to move around more, to actually get up and down and give Christian stretching and therapy without breaking a sweat.

I've got some things brewing for the spring that I'm going to keep under wraps for now, but stay tuned!

Happy Friday!