Video Swallow Study...Again

We've learned that part of moving to Fargo and a whole new set of providers/therapists for James has meant re-doing a lot of things we've already done. One of those is a video swallow study. James has had, I think, 3-4 of these done in the past at Marshfield. The last was probably about a year ago.


What is a video swallow study? Pretty much the idea of it is to make sure that what James is eating is safe for him. Sometimes kids with CP have weak muscles in their mouths and the food/drink goes places that aren't safe and they can end up aspirating and getting pneumonia from it.


So Wednesday morning James I headed to the X-Ray department at Sanford. We got in the fluorscopy room where things were going to happen, and thankfully James didn't freak out. He saw his speech/feeding therapist and he got the biggest grin on his face!! The way they do the study to give him food and fluids that have barium in them and as he eats/drinks they take a video that's like and x-ray and they can watch where in his body the food/drink goes. So they replaced his Pediasure with the barium liquid and added some barium on top of a cracker for him and also got him Stage 2 baby foods with barium in it. We had to move James from his own chair to a Tumble form chair (we used to have one when James was smaller) that sat on top of some chair they use for adults. I was a little nervous that at that point James would get upset, but he was still happy as a clam. Usually around a lot of new people in a hospital environment he gets pretty anxious-I'm so proud of how well he did. They did have me feed to help with that but also because the technique of feeding him is just as important-not that other people can't feed him and it wouldn't be safe. They just wanted to see what "normal" was like for James.


First we gave him the bottle and he did great but wasn't getting a large amount of fluid at a time (expending a lot more calories to get his food). They we tried the baby food. He did great with that as well, he got larger amounts of this with less calories expended-too bad baby food doesn't have a lot of calories in it. Then we tried a saltine cracker which he also did just fine with.


Overall the findings were what I expected-that James is just fine and safe to eat what he usually eats. They suggested maybe trying a faster flow nipple for his bottle and see if he can handle that to help with the amount of calories he burns while taking his Pediasure.





Wednesday also meant therapy for James. He started with speech/language therapy. He did great as always. They are currently working on making choices using eye gaze. They give James two choices and when he looks at one in particular they count to either 3 or 5 and once they hit that number James gets his choice (bubbles or a car or a ball usualy). If he doesn't have a steady eye gaze with either option he doesn't get either one. Next came speech/feeding therapy. Again, he did really well and was a good mood. They are working on some new textures of food like thicker applesauce. Last was Occupational Therapy. Recently I started sending James back by himself (Elliot and I used to go with him) and he does so much better without me!! In OT they are working on moving things from hand to hand and reaching for objects across his body.

We recently decided to stop Physical Therapy. At James' 6-month assessment he had actually decreased in his range-of-motion meaning that what we were doing wasn't really helping him. We'll reassess this decision at our next CTC clinic.

In other news we'll find out on Tuesday how close we are to getting and iPad for James! He uses on at school and I'm told that it is highly motivating for him. He's always loved my iPod Touch. With the iPad we'll be able to use it as a switch (he hits a button and it'll say what we've programmed it to say, or it'll make a specific noise, or when he hits it we'll do something for him etc). We can also use it for communication-there a lot of amazing apps out there for this-the key will be to find one that we can make simple enough for James and one that he'll be able to understand.

All in all....he's busy, he's happy, he's healthy, he's safe. We're happy with that.

"Only God Could Hear Me"

I realize I just posted earlier tonight, but as always I'm searching for communication devices and came across this video on YouTube. It's about an hour long, but well worth the time. I definately broke down a couple of time, because it shows everything that I could ever hope for James to achieve. The 4 people they feature have severe cerebral palsy and talk about their relationships with God and the ability to communicate with other people using a device called MinSpeak.

http://www.youtube.com/watch?feature=endscreen&NR=1&v=2r9pvtNTx4k

Happy Holidays

As always I'm behind. The holidays brought so much to do for our little family. I of course worked some overnights throught Christmas but we were still able to make a trip to DL to spend with my family. James got some great toys to help him work! One of his favorites is this puzzle with the really large knobs. He can actually pull the pieces out by himself (which is actually one of our Occupational Therapy goals). Of course the little boy in the pictures isn't James-I borrowed the picture www.beyondplay.com where we got some great toys for James for Christmas. He's been spending a lot of time on his tummy playing with his puzzle and with a magna doodle that he and his little brother got from their nanny, Morgan. He also got some new PJs, movies, bubbles from Santa and some little dishes that he loves to hold on to. Some of his other favorites came from his teachers and therapists at school-he got coloring crayons and mickey mouse coloring books! He was pretty excited about those. For his ornament on the tree this year He even got a Mickey Mouse from Hallmark. James was able to really enjoy watching Christmas this year. He wasn't as interested in opening presents as in the past but he still had a smile on his face most of the time.

CTC Clinic

In true fashion I'm still playing catch-up. Awhile ago (about 1 1/2 months) James went to his first CTC clinic (Coordinated Treatment Center). It was very similar to the Special Needs Clinic we attended in WI but a little different. Because James sees the outpatient therapists at Sanford on a weekly basis our day was shortened because we didn't need to visit with the OT, PT or speech therapist. Another difference was that we saw a pediatrician in addition to the physiatrist and nutritionist. What did we learn.....not too much new but a few modifiactions were made. His baclofen dose was increased due to the fact that he's lost some range of motion recently. So far this difference seems to have helped. It mostly seems to depend on the time of day and who's working with James as to how tight his muscles really are.

The big ticket item for CTC clinic was our visit with the nutritionist. It seems that this is a never ending cycle for James. He's lost about 2 lbs since we've moved to ND. We don't think his calorie intake has decreased but that he's burning more calories because he's going to school 4 days a week plus his time in his stander at home and his outpatient therapy. The nutritionist thinks that we're maximizing all of his caloric intake options. So we're down to a goal/ultimatum type decision. We have 6 months (from early November) to get James to gain a minimum of 1.5-3 pounds. We're doing all we can....please pray that James can increase/maintain his weight! If we don't reach our goal we will more than likely have to make the painful decision for James to get a feeding tube :(.

All in all it was a pretty good visit.

Trip to Williston

We took a quick trip to Williston to visit my brother and his wife and all James and Elliot's cousins. Elliot, Austin and Avery all celebrated birthdays. James had a great time seeing all the kids and snuggling with his aunties and Grandma K.

He especially loved laying on the floor next to his baby cousin Lucas! His eyes just lit up and he broke out in his big gorgeous smile!

Catch-Up-Halloween

It's time for me to play catch-up. We've had a busy couple of months at our house. I'll start with Halloween!! The week before Halloween we were able to take James to a Halloween party for kids with physical disabilities! How awesome was this party?! James and his little brother Elliot dressed up and were able to go and play games and eat and see all the mascots from businesses around town. Each registered child got a gift certificate of some sort-James got $20 to Toys R Us and we purchased him Open Season 2 and a Mickey Mouse movie. (If you didn't know, Open Season is James' favorite movie. He laughs at it non stop and will watch it all day if you let him! I think we've decided that any movie with talking animals in it is funny to James). James dressed up as Captain America and even won some bubbles-that just made his day!

Medicaid Frustrations

I had a tough week this week. I learned this week, that all time James has really not been on Medicaid. I started getting bills from Sanford for James' outpatient therapy and his prescristions were all requiring copays. Come to find out, his Medicaid never started because they never got his screening saying that he was disabled etc (as if there's any question). After an additional 5 phone calls I learned that we had done the legwork, just hadn't enrolled James in waivered services. I wish someone would have told me!!! All this time we've been acruing bills and here we thought they'd all be covered by Medicaid. Sometimes I decide that this whole system is not so bad to navigate and then a week later I find out I'm completely wrong! So now I've gotten more paperwork to fill out and hopefully no more problems after that.

I did learn however that MA will probably cover and iPad for James! He's been using one at school and has been quite successful. 5/8 times he will correctly identify and object when they show him 3 pictures!! How amazing! We were all so excited, his teachers, therapists and he even got to show off for the director of special services! We love that he's progressing and loving school. He even has school pictures coming up!