So My Question Is:

Ben had his first little accident today. Now that he really rolls everywhere, he is hard to keep an eye on. We keep him blocked in with toys during his feeds so he can't pull his IV pole down... but during his feeding breaks, we let him roam free. He usually doesn't explore too much, but today he was rather adventurous. He rolled from our family room into our kitchen, traveled across the kitchen by rolling on the tile (a first for Ben), maneuvered his way around the island and rolled right up to the doors to our deck. Quite a trip!

Well later in the day, I decided to take Ben for a walk. I was getting his stroller out of the car and left the front door open so I could peek in and see him (because of the trach, Ben needs a set of eyes on him 24-7). I was only going to be outside for a minute. During the few seconds my back was turned to pull the stroller out of the trunk, Ben actually ROLLED out of our front door (over the raised door jam) and dropped onto the welcome mat (it is a step down from our door to the mat too). Thank goodness the mat was there to break his fall. Ben was VERY upset. I looked him over and he looked good - no scratches or anything. I think he scared himself more than anything. I just couldn't believe it. He's never done that before!!! He doesn't even get close to the front door. I've learned my lesson though and I'm going to have to figure out another way to get his stuff ready for the walk (I hate to close the door when I'm out because I'm afraid Ben might pull his trach out/stop breathing/etc. and I won't be able to see him until I physically come back inside). Could it be time to buy some baby gates?
So my question is:
Was this Ben's first attempt at running away from home? Or was he just so excited to go on a walk that he decided to meet me half way? Or even better, did he miss me so much in that one minute I was gone that he had to come and find me?

Proof is in the Picture

Ben's Gramma Mo sent me this picture of Ben's daddy when he was a little boy. I love it! As you can see, this knee bending starts early for those Russo boys. Even Mike's right arm is in the same position as Ben's. If it wasn't for the bottle, these pictures would be identical!

Like Father, Like Son

Ben is showing more and more of his daddy's traits. The other night, when Ben feel asleep he did something I've never seen him do before. He was sleeping with his legs propped up. Mike does this EVERY night and I can't understand how he sleeps like that. To see Ben doing it was just the funniest thing ever. I took a picture and had to share. I guess Ben must think it's pretty comfortable too.

PS. Yes, Ben sleeps with his eyes open - this is due to his facial palsy and he gets frequent eye drops and eye ointment to protect his eyes because of this. However, I like to tell people that he sleeps with eyes open because he doesn't want to miss a thing.

Still Finding Time for FUN!

Yes, Ben's still been finding time for fun. He has learned to balance things on his forehead - it cracks me up! He sits toys or his pacifier on top of his head, pulls he hands down and is like TADAA!! He concentrates so hard while he is doing this. I love it!

Test Results

I got a call from the GI doctor's office this afternoon and they have a final reading on Ben's PH/Impedance Probe. His nissen is still intact and he is doing absolutely no refluxing up from his stomach (the doctor's were surprised to see this - I wasn't because I didn't think that was causing airway damage and was skeptical when they even brought it up). Anything the probe measured came from Ben's mouth down (saliva) - so we have been instructed to do ABSOLUTELY NO ORAL TASTES OF ANY SORT. GI just wants to follow-up with Ben in a few months, but there is nothing surgically or test wise for them to do at this point. Check GI issues off the list.

Now we just need to see what ENT has to say. GI contacted them and discussed the results. Everyone was so sure reflux of some sort (acid reflux, silent reflux, etc) was causing Ben's major airway damage. ENT said once GI got a handle on those issues and fixed them, they would step in. Well, change in plans - any airway issues Ben has is now something ENT needs to address. Personally, I think it is all due to his constant aspiration of saliva. Hopefully this drool procedures fixes that. We have noticed a slight improvement in Ben's secretions (and I do mean slight). We have a follow-up appointment with ENT in a week and a half.

Our Super Star

On a positive note, here is Ben being our little super star. It's hard to stay sad for long when you have this little cutie showing off some of his great skills. We've waited a year and a half to have our baby hear noises. The fact that he now knows his name AND respond to it makes my heart jump every time! Giving Ben sound is the best gift I've ever received. His cochlear implant is a blessing and the best decision we've ever made.

Old photos of Ben

I came across these older photos of Ben scooting around our family room. I thought they were so funny and they show his "unique" method of getting places.

Tough Night

I think the surgery really caught up with Ben last night. He didn't sleep much and spent most of the night crying. He kept our night nurse extremely busy. He is on and off fussy today. One minute he's fine, the next he's fired up! Since I haven't posted pictures in a while, I thought I'd get some up here. Ben still loves the camera! And his cheeks are still extra puffy because of the surgery.

Home and Recovering

Ben got home yesterday around 11:30 a.m. and he is recovering like a champ. He is getting Tylenol for pain, but that's it. His poor little cheeks are so swollen (inside and outside)... he looks like he has mumps. It is too early to tell if the drool procedure worked. Hopefully tomorrow the swelling goes down and he feels even better. Thank you everyone for all your kind words regarding the disappointing news. You have no idea how much your support means to us!

Not the News We Were Hoping For

Sorry for the delay in updating -- like expected, we spent a while in recovery and when we finally got to our room we were very busy with Ben. He is doing fine, just not feeling so great. The doctors (ENT & GI) were a little disappointed with what they saw during surgery. I'll try to do my best relaying the news.
GI-
They took a scope of his stomach and intestines, placed a PH probe, and did some biopsies. They found a problem area in the bottom of his stomach that hasn't been seen before. More than likely, it isn't a new problem... just not something they were able to notice before because it is very difficult to see. Ben has a web of extra skin where his stomach empties. His stomach does empty, but probably not the way it should. A regular barium emptying study (which is what we have had done before to test this) wouldn't necessarily show us what we need to know. We are going to have a different kind of xray test done to find out more. Based on those results, they will decide what needs to be done. More than likely, Ben is going to have to have a GI surgery to correct this. Also, GI wasn't able to place his PH probe in his nose. It is now in his mouth which is VERY rare and uncomfortable. They had arm restraints on Ben after surgery so he wouldn't pull out the probe. We took those off right away because it was just too upsetting to Ben. We were better off just trying to keep a close eye on his hands. He is doing much better with it this morning than we expected. We are suppose to hit a button and log every time he either gags (which was pretty frequently considering the tube is in his mouth), vomits or coughs. Needless to say, we are counting down the hours until that can come out!
ENT-
Ben's nose is once again COMPLETELY closed with bone and tissue. This is so disappointing! Ben has had so many awful surgeries to open his nose and only to find out that it is closed right up and he is going to have to go through this again. For the time being, ENT is leaving his nose alone until we can figure out these GI issues (this is why Ben's PH probe couldn't go down his nose). They also looked at his airway and it was a mess. His upper airway is much, much worse than before. Something is destroying his airway (they are suspecting it has to do with silent reflux, his stomach not emptying properly and his failure to swallow his own secretions or anything else). Hopefully the drool procedure will help some (too soon to tell if it is working). We have also been instructed to do absolutely NO oral feeds. Because of Ben's uncoordinated swallowing, this is only making his airway worse. And finding out what is going on with GI will hopefully help. They want to put Ben under general anesthesia every three months to follow the progress of his airway. His ears were also in pretty bad shape. We are going to have to see ENT every 3 weeks and have his ears cleaned out. This is very important to stay on top of or his cochlear implant could become infected. At least this doesn't have to be done under anesthesia.

With all this being said, Ben's trach is likely going to be in for a while and he will have some additional surgeries in the near future. As always, we take one step forward and 10 steps back. Just doesn't seem right that Ben has so much to deal with -- so many things wrong. But at the same time, I'm just so amazed with him that he is doing so well in spite of all he has wrong.

Thursday Morning Surgery

Ben is all set to have surgery Thursday morning at 8:30 a.m. He will be staying over, but will be home on Friday if all goes as planned. He surgery is slotted for 2 hours and 10 minutes (a short one for a change). He will be having a drool procedure (snipping 4 of his saliva ducts), his nose looked at and dilated if needed, a larger trach put in, his airway scopes and GI will be placing a PH probe in his nose for 24 hours to see if any of his stomach contents are traveling back up (we hope not). We are hoping that Ben has a speedy recovery and isn't in much pain afterwards. If the drool procedure works, we might not need to suction Ben every 5 minutes like he needs now (they did say his secretions may be worse after the surgery for a little bit - sometimes it takes a little while for the body to adjust). We have also been told that census in the hospital is VERY high right now and we might have to wait longer than normal in recovery until we are able to get a room and we might not get to go to the floor we want.

Ben's world is opening up!

We just had an amazing weekend with Ben. On Friday, it was beautiful here. It was the first time I was able to take Ben out for a walk in a long time. Because of his facial palsy, Ben always has so much trouble with the sun. Friday, the sun was so bright his sunglasses didn't give him enough protection. He was fussing and trying to hide his head in the stroller. I finally decided to put my sunglasses on top of his hoping that would help. It did and he just looked adorable. I took a picture with my phone so I could share. He is just too funny because he didn't mind them being on AT ALL! We also went swinging and down the slide for the first time (of course he layed down the slide). The slide really cracked Ben up. It was kind-of a scared laugh though.

Ben is also making HUGE progress with his implant. I got chocked up many times on Friday because Ben was hearing things I never thought he would hear or even respond to. He was noticing birds churping, hearing cars drive by (and following them as they drove past) and turned to watch geese fly over us. It was such a big moment for us!

We also had Ben's Aunt Theresa and Uncle Rich in town visiting for the weekend. It was great to see them.

Ben is lifting his head

Ben is really starting to lift up his head when he is on his belly. He really didn't do this a whole lot before and if he did, it wasn't very high and was really quick. Recently, when he is rolling he will roll until he is stopped by a piece of furniture or a wall. When he does this, he gets onto his belly, pushes up his head and looks around. He gets pretty high too. This will really help Ben develop his head control since he still has some trouble with it. Not to mention it cracks me up! I love seeing him looking around. Of course when I try to put him on his belly and keep him there, he doesn't like it... it has to be on his terms. Kids with CHARGE tend to be very stubborn and Ben is no exception. I'm hoping this is the first step in learning how to crawl. All of Ben's movement is making it very difficult though with his feeding schedule. He is hooked up to a feeding pump (and can't go far) 11 hours a day. And he's figured out how to roll out of the barriers I've set up for him. After his surgery on March 15, we look at adjusting his feeds.

Aural Rehab

Ben had his first Aural Rehab appointment this week (to work on his sound detection with his cochlear implant). Ben is starting to do some great listening and will turn to a lot of environmental noises - even his name after I call it five times. Aural Rehab is the first therapy service that Ben gets that doesn't do home visits... so we had to take Ben over to Children's outpatient. We have a standing appointment every Tuesday at 2:00. Let's just say that Ben much prefers therapy at home. He is starting to get a little apprehensive about being at the hospital. When he got to therapy we put him in this little desk chair, which he wasn't too sure about. He then hit his head on the back of the chair and he started crying. It took a little bit to calm him down and he ended up doing his listening therapy on my lap. Because of the chair incident, his mood wasn't the best and any time the therapist got close, touched him or showed him certain toys, he started to cry. Ben always just takes a little time to get use to new people and things -- especially when they are out of his comfort zone of home. Some of the toys she used with Ben we have at home, so we are going to try and do the same activities she did so next time, Ben knows what to expect. We've noticed that Ben is really starting to have an opinion about toys. Some toys we get him, he isn't sure of them and he will hide his face from them. Others he grabs right away and plays with them. Grandma Deb has taught me to take those toys he doesn't like and just set them by him while he plays. Amazingly enough, after a week or so he will warm up to them and start playing with them. For whatever reason, I think Ben just visually perceives certain things as unsafe. The therapist was great with Ben and gave us lots of ideas for home. She is going to be a big help.

Busy Week

This week was a very busy one for us. Ben had many, many doctor's appointments at Children's. I'll just fill you in with a few highlights:

Eyes - Ben was due for his 6 month check-up and since he just had a brain cat scan that showed his ventricles were a little larger in size, the opthamologist decided to dilate his eyes and look at Ben's optic nerves. The eyes are usually the first place that show increased pressure in the brain - and Ben's optic nerves looked great. What a relief.

Development - We also saw Ben's Developmental Pediatrician, who is WONDERFUL! She just plays with Ben, asks lots of questions about what he is or isn't doing. I really look forward to these appointments because she is so knowledgeable about CHARGE and developmental issues. She thought Ben was doing some great stuff. Developmentally, Ben is probably in the 9-12 month range, but he is continuing to make progress... so we are happy about that. She did agree with Ben's pediatrician that Botox injections would probably help him out. Botox can be given to people who have a lot of tightness that is inhibiting their daily functions (Ben's legs are so tight, he has trouble sitting up because he can't straighten them). She explained that Ben's tightness is probably due to the stroke he had right before he was born. The part of his brain that is around the damaged area is responsible for muscle tone. His brain is probably telling his muscles to be tight even though they shouldn't be. From what I know about botox, they give injections into the muscles on a regular basis and then cast those muscles in a fashion that really stretches them out. Botox basically relaxes the muscle and allows it to be stretched. We now have an appointment with Rehab the end of the month.

We are also trying to get a new PT. We have been without for a while since we have had trouble finding one that we felt was a good fit for Ben. Through a referral, we found a private PT who is amazing. She did more in her first meeting just gathering information than all PTs combined. The only problem, she isn't in our insurance network. We are praying it works out. Ben really, really needs a good PT.