Cochlear Implant Confusion

Our CHARGE kiddos sure keep us guessing, don't they?! Ben hasn't been wearing his cochlear implant AT ALL since he was sick this during the winter. For the past month, we have been working on Ben wearing his implant while it is turned off to get him use to having it on so it could at least be programmed. On Monday, we had our first appointment to remap his implant since he stopped wearing it. It also happened to be with the new CI Audiologist. He was wonderful and had a lot of background information because he use to work with both adults (who can tell him what the implant is doing and feels like) and kids (who can't always tell you).

He tested the electrodes on the implant and they showed signs of not being stimulated (no surprise there, he hasn't been wearing it). He then went through five different electrodes and got some high/low thresholds. From that, he remapped/reprogrammed Ben's implant. We are basically starting all over at a very low volume to get him use to it again. What he hears will be a very soft whisper and we will gradually step up. Ben was happily wearing his implant in the office after the new programming. I was thrilled! When we got home and after Ben's nap, I tried the implant again. Ben was fine when I put it on UNTIL I actually turned it on. He then pulled it off and started crying. He acted like he was in major pain. He wouldn't let me even get close to him after that with the implant in my hand. So confusing! It was like he got a shock when it was turned on. We talked to the Audiologist and we are stumped. We are going back in next Monday to try again. Could the implant sound different when hooked up through the computer (which is how it was in the office) vs how it sounds running on battery at home?

Family Photos

Thank you Jen for taking these! We love them and you did a great job.
(Below are some of my favorites)

(My brother was using a stick to get Ben's attention. It did, but then Ben started throwing a fit until he got the stick. The stick then became a photo prop)

(This picture makes me laugh because Ben pulled off his trach valve and stuck it on his finger for the photo and was quite impressed with himself.)

High Thyroid Function

I got the results back this morning from Ben's blood work. His thyroid function test came back high. It said he was 3.3 and the normal range is 1-2. Additional blood tests are now being ordered, but I'm hoping one of our blog readers can offer some insight. Do any of your kiddo's with CHARGE have high Free T4? Did you have to start treatment? Is this "normal" for CHARGE kids? Anything you can offer is appreciated!!!

On a side note: took bandages off (boy did it hurt and oh my goodness are those things sticky) and the incisions look good.

Time to Remove the Bandages

Today is the day we are suppose to take off Ben's bandages. They haven't budged a bit, so I'm not sure how to tackle their removal. I'll do my best to make it as painless as possible though.
And other than needing some Tylenol during sleep time, Ben is acting like his old self. What a tough cookie he is!

School starts on September 8 and I'm excited to get him back into the swing of things. We have found a day nurse for Monday/Tuesday and I think she is going to be a perfect fit. Ben warmed right up to her, so that's a good sign. He wanted her to tickle him :)

What a Difference a Day Makes

Ben has been recovering wonderfully. Friday morning seemed to be the worst of it and he has continued to improve since then. What a difference a day makes! Thank you everyone for all your prayers and well wishes.

Home for the Hospital

Ben's surgery today was a success. They were able to do everything in one procedure. It took about an hour longer than expected, but Ben did great while under anesthesia. We are home from the hospital now (my mom is here to help us take care of Ben since we opted not to have a night nurse tonight). We really pushed to go home since we knew Ben would be more comfortable. His pain level right now is pretty bad though. They ended up doing an open procedure instead of laproscopic after inserting the scope so he has 6 different incisions. Since Ben doesn't tolerate Tylenol with Codeine, we are only left with the option of giving him regular Tylenol and Advil combined since we are home and anything stronger could hinder his breathing. I hope I made the right decision bringing him home so soon.

All of Ben's Favorites

We had a very low key birthday for Ben this year. We opted not to have a party for him since he has surgery this coming Thursday and we didn't want him catching any bugs that would cause surgery to be canceled. Instead we decided to do everything that Ben enjoys on his special day (actually, it was the day before AND the day of).

My mom was down on Saturday to keep me company since Mike had to work that morning. We started the day with a little TV time (Handy Manny).

We then took Ben to the grocery store to ride around in the cart (as always, the completely wiped down and sanitized cart - not taking any chances). A big favorite of Ben's though!

He then got a ride on his 3-wheeler. He hasn't ridden this since last year and I still have to walk beside him to make sure he doesn't fall over, but he is so much stronger this year. He sits up so big and tall now!

Then, we took him for a LOOONNNNGGG walk in his wagon and got to enjoy rubbing some cars on his way (also a favorite). We happened to walk by a great garage sale too and got Ben some clothes, a Halloween costume and toys at a really good price.

When Dad got home, Ben was treated to some "tickle time". Dad gives the best tickles and gets Ben howling with laughter. I have to remind Dad to give Ben breaks to catch his breath.

We then had some cake and ice cream, opened gifts and put him down for a nap. For a kid who doesn't eat anything by mouth, Ben sure grabbed up the spoon and stuck it in his mouth. I couldn't believe it!

Today we did a lot of the same. Ben really seemed to enjoy his day(s). Thank you everyone for all your birthday wishes!!

Too Many Appointments = Too Much To Handle

Ben has had WAY too many doctor's appointments since last week and I've learned that we just can't do so many so close together in the future. Not only is it too emotionally difficult for Ben to go through so many different tests/exams/etc., it's too emotionally difficult for me.

I'm stressed for him and on edge because he keeps on getting so upset, which in turns causes him to try and pull out his trach (yes, the joys of the trach). Then when I'm given the results from the doc, the news seems to take a bigger tole on me (if it isn't good news, which it hasn't been). I think I can only handle one or two negative results a month and those results CAN'T be communicated on back to back days or in the same day. So I'm now trying to do a juggling act of what appointments to schedule and what ones to put off for a little longer. And trying to avoid as many hospital visits as possible during the cold/flu season. It is just so hard when you have 18 different specialists wanting to see him so often!

Today's first appointment was with Opthamology and Ben's vision has gone from no nearsightedness to pretty significant nearsightedness in one year. We also got a bone density Xray. Haven't heard those results yet.

Ben is still scheduled for Urology surgery on August 13. I'm dreading it and the date seems to be creeping up on me. Our original surgeon has gotten really ill and we now have someone else doing the procedure. We met with him yesterday and he gave us a detailed case by case scenario of what could happen based on what he sees (this surgery is to bring down his testicles which are more than likely in his stomach). I didn't realize that this procedure might have to be a two-step surgery based on how things look. I have full faith in the new surgeon and I'm praying for a straight forward one-step surgery. Please keep Ben in your prayers on the 13th.

We are also looking for a new day nurse to go to school with Ben on Monday and Tuesday morning. School is only 3 weeks away and we don't have any candidates yet. I just need to take a deep breath and regroup!

On a positive note, Ben will be turning 4 this Sunday!! I can't believe it was already 4 years ago that we started this journey with Ben. Ben enjoys opening gifts so I'm looking forward to watching him tear some paper. I also ordered him a Handy Manny cake and he will get some tastes of that (I hope he tries a lot of cake because I ordered a pretty big one for just Mike, Ben and I). The one gift I can't give him that he needs the most though is to stay healthy before his surgery!