Ben Is Catching On To Sign Language - Kind Of

We continue to sign to Ben every day and for the longest time, the only sign he did back to us was "up" - and he used it when he wanted picked up. We have been working really hard on a lot of other signs, but specially the sign for "more". I noticed about a week ago that Ben was doing this shirt flick sometimes when I asked him if he wanted more. Ben's therapists have told me to be on the lookout for any signs that he seem to be using consistently even if they aren't the real sign (kids sometimes develop their own signs and as long as we can figure out what they mean, we can communicate with them). I'm happy to report that Ben's shirt flick has now consistently become his sign for more. He even does it when he wants more without me initiating it. It's GREAT! I feel like I am finally starting to communicate with him in some way. The only downside is that people who don't know us might think Ben is telling me off when he signs his version of "more".

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Some Great Progress

Ben has been making some great progress lately. He is spending more time on his belly playing with his toys... which is HUGE for him. He hates belly time because up until recently he wasn't able to do anything once he was on his stomach and I think he also didn't like the feel of the trach being pushed on. Now he is strong enough to prop himself up for short periods of time and play with his toys. I feel like he is getting much closer to being able to push up into sitting on his own.

"I can even balance on one arm."

"Come on mom, just take the picture already!"

Not The Wake Up Call We Were Hoping For...

This morning, our nurse woke us by pounding on the door and hollering for help because Ben's trach had come out. This is something that we were trained to handle, knew could happen, but thankfully hasn't happened - until today (this instance is a perfect example of why Ben needs a trach and CPR trained caregiver or nurse by his side 24 hours a day, even when he is sleeping). As soon as I heard the words "trach out", I darted from my bed and ran into Ben's room - Mike was right behind me and for those of you who know what a heavy sleeper Mike is can appreciate how amazing it was that his fatherly instinct overrode his heavy sleeping habits.

As soon as I approached the hall, I could hear Ben struggling to breath - I don't think I will ever forget that noise. It was louder than I would have thought and it sounded like someone having a bad asthma attack. His trach was lying in his bed next to him with his trach ties attached, Ben was starting to turn blue and he was thrashing around in a panic. I grabbed the trach and restrained him the best I could and pushed it in. I asked the nurse to suction and she said the catheter wouldn't go in. Ben was now dusky gray and lethargic. I checked the trach and realized it wasn't in right. I tried again and got it in this time - thank you God! The nurse suctioned while I held the trach and Mike pulled out the oxygen. Luckily, we have a high flow oxygen meter in case of emergency and we started give him 8 liters of O2. We didn't need to give Ben CPR, he was able to come back with the high flow oxygen. He needed O2 for about an hour, but was able to get back to room air after that.

This incident was a reminder to us of how precious every day with Ben is and how quickly something horrible can happen - and not due to neglect or anything on our part... just due to the fact that Ben has to wear a trach to survive and with wearing an external piece of medical equipment to breathe, life or death accidents can happen at any minute. I'm so glad our nurse didn't waste any time and just ran in and got us because she figured we could handle the situation the best. Our hearts go out to those families who have lost loved ones because of accidents with the trach. It only takes a few seconds for a trach to slip out and not all kids make a noise to let you know it is out.

This morning was a reality check for us that maybe we needed. I always take Ben's suction and emergency trach bag with me when we go out - but I don't always take his oxygen... now I will. I am now going to insist any day nurse who may be alone with Ben do a trach change with me so they can see how Ben's trach goes in.

We have no idea how Ben's trach came out. Either the Velcro on his ties got caught on his shirt and pulled apart, or Ben's little busy fingers found them. Either way, we are keeping a even closer eye on him.

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Learned Something New

Ben has learned something new today and I think it is hysterical! He has figured out how to pull his arm out of his shirt... and does so over, and over, and over. Ben chews on his shirt sleeve (he started doing this when we began weening him off his pacifier) and holds onto the end of the sleeve with his teeth and then voila', he can pull his arm out! Is he one smart cookie, or what?! Now he just needs to learn how to put it back on.

Thanksgiving Day

For Thanksgiving, we went to my brother's in-law's for the day (thanks for having us Ron and Noreen). We had a great time, enjoyed a wonderful meal and were happy to spend a day with family. Ron and Noreen have a really cool basement with a beautiful bar, lots of TVs, pinball machine, slot machine, real train crossing lights/alarm and an ambulance siren. It is definitely an adults playground!


Ben took a liking to everything their basement had to offer, but was especially fond of the slot machine. It didn't take long for him to figure out how to push the buttons to make it spin and as soon as the machine started spinning Ben started cracking up! He stood there and kept on pushing and laughing until he was too tired to stand (for Ben, this is about 5 minutes on his feet).


So, when Ben's trach comes out... no Disney World for him, we are going to Vegas baby!

Ben's Sleeping Style

Ben has a whole crib to utilize while he sleeps but for whatever reason, he wedges himself right up to the bumper pad. He wouldn't dare leave an inch to spare either! This is a time when I am thankful Ben has a trach... if he breathed through his mouth/nose, this might be a problem.