No more vomiting for Ben

Ben hasn't had any more vomiting since yesterday. So I am happy to report that it must have been a one time flukey thing. It was probably related to his thick secretions. Maybe it is time to start his allergy medicine up again.

Ben's favorite things

So Ben has two favorite things right now - daddy, and mommy's shoes! Yes, you read that correctly, it isn't mommy - but it is her shoes (just the right size and weight for little hands, I guess). No matter where I put my shoes, Ben finds them, grabs them up and enjoys licking the dirty soles.

And Ben has also developed quite the attachment to his dad. Whenever daddy is home, Ben wants to be right beside him (daddy rough houses with Ben and he loves it). If daddy sits on the couch, Ben rolls over to him and puts his arms up to be picked up so he can sit with him. If daddy is on the floor, Ben rolls until he is bumped right up next to him. If daddy walks by and doesn't take Ben with him, he cries until he comes back into the room. And when daddy leaves the house, Ben cries and cries and cries for about 30 minutes! It is so cute that Ben loves his daddy so much.

Hopefully this isn't a repeat of last year

Ben had a really rough morning today. After the nurse left at 7:00 a.m., Ben had two large vomits. The second one got all over his trach ties and some vomit came out of his ears. Good thing he's still on his antibiotic ear drops! Poor guy.

Because Ben still has an intact nissen (the top of his stomach is tied tight), he really isn't suppose to vomit easily. And when he does vomit, it isn't easy for him to do and it seems quite painful. He has been tolerating his new feeding schedule for the past two months, so I wouldn't think that was it... but about a year ago, the same thing started happening. Just one day he started having trouble tolerating his feeds - first he threw up a few times in the morning, then it progressed to an additional few times in the afternoon and before long, he was vomiting over 20 times a day. He ended up spending about 2 weeks in the hospital on an IV and even after multiple tests, they never found out what was causing it. All we knew was that once I switched him to this crazy feeding schedule of eating 11 hours a day, it stopped. Now he is eating 9 hours a day and getting those extra two hours of freedom from being hooked up to the pump has been great!

Hopefully today is just a fluke and not a repeat of last year. So far, he's tolerated the rest of his feeds and has been acting very happy since he's gotten all cleaned up. He has just been terribly junky and needing his trach suctioned every 2 minutes (which is very normal for him after vomiting like that).

It is just so hard to figure out what could be going on. Because Ben eats with a feeding pump, Ben has no control over how much he eats, how fast he eats and when he eats. Because he doesn't talk, he can't tell me when he's full, when he doesn't want as much food, etc. Also, because Ben eats small amounts almost all day, I don't think he even knows or understands the feeling of being full or being hungry. We just have to play mind reader and do our best based on his cues (which too are limited because of his facial palsy). Ugh, CHARGE just makes things so confusing!

Update for the week

Ben had his urology follow-up on Thursday. So far, everything looks good. In three months, we will find out how the deflux worked for Ben. We are definitely praying for the best.

We are also getting some visitors again this weekend. Ben's Grandma and Grandpa Russo are coming in town today. They should be here any minute and Ben will be able to show off all his new tricks! Next weekend, Mike's friend Todd from Youngstown is coming in town to spend the weekend. Ben is very excited for all of his company.

Hope all is well with everyone. Take care.

Hot new red convertible

Thought you had to be 16 to get a brand new, hot red convertible? Well for Ben, 16 came a little early. He absolutely LOVES his new car and it is so easy to push (the only down side is that you have to carry all of his equipment since it won't fit under the hood - but it is worth it). And it just warms my heart seeing Ben in this little car because I feel like he is such a big boy in it! We also took him to one of his appointments in this car and he was a hit! I think some of the kids thought we were hogging the waiting room toys though... not realizing that we brought it with us.

Audiology Appointment

Ben had his three month audiology appointment yesterday and they put him in the booth with his implant on to see how well he is hearing. They distract Ben with toys and present speech/environmental noises in different decibel levels from a speaker. Once he turns to the speaker for the sound, they light up a toy that sits on top of the speaker as a reward. The kids have to consistently turn to the noise four or five times to be considered as definitely hearing it, not just coincidence. And since Ben LOVES light up toys, he does great in the booth (if only I wore a hat that I could light up when I call him and he looks, he might respond to me talking a little better).

Ben's pre-implant hearing level was 80-90 decibels (right on the border of severe hearing loss and profound loss). This time, Ben was consistently turning to speech sounds at 15 decibels (which is like a whisper). It was amazing and I still can't believe how successful he has been with his implant. Ben never has success with his surgeries. If there is a 1% risk of failure, Ben will fall into that category - so this is why we are so truly shocked, thrilled and in awe of his implant success.

Right now, we are working on Ben learning the names of things (daddy, mommy, cow, dog, toy, etc.) and respond to them with the verbal cue, not the sign or visual cue. We are just so proud of our little guy. If only we could keep his implant on for longer periods of time (he's still pulling it off and when he rolls it still falls off - and he spends 75% of his day rolling).

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.