Surgery is over and Ben is home...

and he is recovering from the anesthesia like a champ. This could be his best post-op yet (it's nice not having anything cut while under). His ears were cleaned, two deflux injections were given (we are crossing our fingers that these worked and will find out in three months after some tests) and his airway was scoped. Unfortunately, his airway is still in really bad shape and they haven't seen any improvement since the drool procedure. Because of this, they have decided not to do any airway reconstruction until he is at least 3, but more likely 4 or 5.

First trip to the Zoo!

Yesterday was beautiful out and Ben didn't have any appointments, so my mom (Grandma Deb) and I decided to take Ben to the Cincinnati zoo (tickets compliments of Mike's work). The animals were a little too far away for Ben to notice, but my mom and I had fun... and we got lots of good pictures for scrap booking. It happened to be the time of year for "Zoo Babies" too. We only saw about four babies, but they were pretty darn cute! We stayed for over four hours and Ben was good as gold the whole time - even sneaking in a 20 minute nap when it was time for us to grab lunch. This was the first time we took Ben to the zoo to see the animals, but I'm sure it won't be the last. I can't wait until he is able to sit on his own and we can ride around on the train.

Grizzly bear scratching his back

Polar bear... not as white and big as the ones on Lost!

The only thing Ben was interested in was this waterfall
Tiger resting

Ben sat all by himself... SO HUGE!

We have worked and waited a year and a half for Ben to sit on the floor independently... and today he did it! I can't even begin to convey how exciting this is for us. Ben has such tight hamstrings and groin muscles that he struggles sitting and HATES doing it (this is due to the tone issues he has from his stroke).

We FINALLY found a PT who is so wonderful and taught us to start working with him sitting indian style, right leg over left (all the other PTs told us he really had sit long legged and not to work on indian style). Ben was gradually getting better and better but could only sit for maybe 2 seconds before he fell. This morning I tried once and he did better than normal so I went ahead and put on a show to distract him and sat him down. He sat for 20 minutes all by himself!! It was amazing and brought tears to my eyes. We got to show off for Grandma Deb too because as she walked in the door, Ben was still sitting on his like a big boy watching his show. Towards the end of the 20 minutes, we had to prop pillows around him because he would lose his balance and tip over.

This is by far Ben's biggest accomplishment! I was starting to get really worried about his sitting because our Rehab doctor said that if he isn't sitting independently by the age of two, studies show his chances of ever walking are slim to none. I owe this all to our PT, Kristen. Without her right over left indian style technique, we would still be working on a method that just doesn't work for Ben.

Surgery is on for Friday, June 8

Ben's surgery is still on for Friday, June 8. Ben's urologist isn't able to do the deflux injections, but Dr. Minevich is (another Urologist in the group). Because there will now be three surgeons in the OR, the time was pushed back to 2:00 p.m. to allow more OR time. In addition to the injections, Ben will also get his ears cleaned out (they are always infected) and an airway scope. I am curious to hear if his airway has made any improvements since the drool procedure. If all goes as planned, Ben should be home early evening.

Ben is officially becoming a little boy with a temper. I don't know if the terrible two's are kicking in early or what, but he seems to have an opinion about everything these days. He wants to do his own thing all the time and does not like anyone making him do ANYTHING (this is very difficult considering we have to work with him so much for listening, ot, pt, speech, etc.). When he gets mad, he pumps his fists up and down super fast in unison... we call them his fists of furry. I think he is just starting to get frustrated because he has so much energy, wants to do more and is limited to rolling because that is all he knows how to do. He doesn't want his trach to be suctioned (hits away my hand), doesn't like diaper changes because he has to sit still (fists of furry start pumping) and we are having to be VERY creative in coming up with new ways to keep him attached to his feeding pole (he eats 9 times a day and each feed takes 48 minutes). I only wish there was something more I could do to entertain him! Life would be SO much easier if he didn't have this trach. I could just easily pop him in the car and drive him somewhere... by myself. I think that is the first thing I am going to do when his trach comes out one day - take him somewhere all by myself without having to worry about someone sitting in the back with him because he needs suctioned so much (even with the drool procedure, we still suction frequently).

I managed to get a picture of Ben in the act of pulling on his trach nose. From this picture, it is pretty obvious that Ben knows exactly what he is doing AND from the expression on his face, you can tell he knows he isn't suppose to be doing this either! What a little trouble maker!! I do have to say that as much as I hate this, I love it too because it shows me his brain is developing.

Feeling better

Ben is starting to feel better and his nights have improved dramatically. Seems like all the little Chargers are sick right now too (and some of their families).

We got a call from Ben's urologist on Friday and we don't know if Ben will be having surgery on June 8. He is suppose to have two ENT doctors do some airway scopes and ear cleaning and urology do two deflux injections (one on each kidney canal). Our urologist isn't in surgery that day after all (he was so certain he was). So now we are waiting to see if he wants to do it on another day or if he wants a colleague of his to do it instead since we already have to doc's scheduled. I'll keep you posted.

Definitely Sick

Ben is definitely sick. He has a cold of some sorts and he is handling it pretty well during the day, but at night - it really sends him for a loop. He has tons of secretions and they are thick and yellow. He has having trouble bringing them up himself and just coughs and coughs. Sometimes this hard coughing causes him to vomit. We are giving him regular breathing treatments, lots of saline and cool mist. The one thing that really concerns me with this cold, is that his heart rate is dramatically higher than normal. At night when we hook him up to his oximeter, his normal hr reads between 38 and 60 (very low, but Ben has an arrhythmia and skips many beats). The last two nights, his hr has been between 90 and 140. Once it gets up to 100, he starts panting - even while he is sleeping. I have a call into his cardiologist to make sure he doesn't want to run any tests while he is at the hospital today for a GI appointment. Guess there is still lots of things going around right now.

Something new to cheer Ben up!

Ben hasn't been acting like himself (we are wondering if it is allergies or if he isn't feeling well). It just happens to be a warm and beautiful day out today, so I decided to try something new to cheer Ben up. I took him outside and put him in his swing but instead of a regular old swing ride, I mixed it up... I started the sprinkler and let it soak him while riding in his swing. I couldn't tell if Ben loved it or hated it (Ben's scared expression and his laugh tend to look the same due to his facial palsy). After about 10 minutes of scared/happy, I decided to call it quits because we were both cold. This is when I knew Ben loved it! He was ALL wound up when I put him down. He was rolling around everywhere SUPER FAST and was playing in his exersaucer like it was a jumparoo! I must say, I felt like a kid again getting soaked by the sprinkler and it was quite refreshing! I've left the sprinkler out so we can try it again tomorrow - weather permitted.

(In the last picture, the lines above his eyes are from his sunglasses)