Back from Conference

Mike and I are back from the CHARGE Conference and the whole experience was amazing! We learned so much, met some of the families we follow via the listserv/blogs, met some new families and met parents whose CHARGE child is now in heaven. We also had the opportunity to have breakfast with the founding father of CHARGE Syndrome. For the first time ever, we felt like we were surrounded by people who just "got it" and words can not describe how great that feels.

I'm glad we waited to go to the conference until Ben was past a lot of his major medical surgeries. Two years ago I think it would have been too overwhelming and emotional for us. Life with CHARGE is so complex and involves so much - and the conference is a reminder of that. Families have to manage so many major medical issues that doctors don't see very often, let alone all combined in one person: muscular and skeletor issues, neurological problems, feeding issues, deaf/blind obstacles, balance problems, airway issues, behavioral problems, autistic tendencies, sleeping problems and more.

The conference armed me with new information and research from experts in our field to take to our doctors/teachers to help with all the above issues. Some of what we learned contradicted what we've been told from doctors. One major thing we've learned is that Ben IS probably considered deaf/blind even though his vision issues aren't severe. But the issues he has combined with his hearing loss are enough to qualify us for services. Also, we were told not to give up on Ben walking one day (despite what the Ortho doc said). At the least, give him until 10 years of age before starting to equip our house wheelchair accessible. And at 10, if he is still showing the desire to walk, continue to give him more time. That was worth the trip in itself!

We are very grateful to the CHARGE Foundation for the scholarship they give first time attendees to cover the conference fee. That was a huge help! In 2011, the conference will be in Orlando, Florida. We are going to start saving now! The next trip we would like to bring Ben.

Exploring the House

Ben has been doing great lately. He made the switch to full feeds with ease and we have been keeping very busy with lots of guests and picnics.

Today, Ben started doing something he hasn't done since he leg break in December of 06. He started expoloring the house! He has been scooting EVERYWHERE and this time, he is doing it with much more curiosity. He really studies everything and notices things he hasn't noticed before. It is so great to see him wondering (by wondering I mean on the floor and on his back of course) and really getting into things the way a little boy should.

His favorite activity today (and there were a lot to chose from) was unrolling the toilet paper. He made his way into the bathroom and was reaching really hard for the roll. The tippy top of his fingers were the only thing that could touch the roll. I let him keep on reaching because his arms are so tight and it was a really good stretch. After enough touches with the tips of his fingers, his dream came true! A square of toilet paper flung over and he snatched it up and gave a big pull. Needless to say, he unraveled the whole roll and had a great time. We will be keeping the door closed to the bathroom in the future but I had to let him have his fun this one time :)

This Thursday through Sunday, Mike and I will be heading to Chicago for the CHARGE Syndrome Conference. I am SO looking forward to it but also very nervous. This will be the first trip Mike and I have taken in 4 years. My mom will be here watching Ben - thanks mom, what would we do without you!

Still in the process... and still going well

Yes, good news! We are still in the process of switching Ben's formula. He is going to jump up to full strength tomorrow and it is going well so far. Some minor bowel issues but nothing a little decrease of his daily laxitive can't help - we hope. It has been a pain free transition!!

So far, so good...

I hate to even write anything in fear of jinxing myself, but so far Ben has tolerated the first step in switching his formula for two days. Today I plan on trying a 50/50 mixture and sticking with that through Sunday. Thank you to everyone for your kind words of support! I'll keep you posted...

Switching Formula

We are finally switching the baby formula Ben gets via his feeding tube to a toddler formula. Both GI and our Pediatrician have been wanting us to switch for a year now, but the timing was never right.

I didn't want to do it during a school week because I was afraid he would miss so much school if he had trouble tolerating the new formula. The process of switching him over takes about a week if all things go well since we have to mix the two together and step up gradually. So I had intentions of switching him during Christmas break. But then he was so sick with pneumonia and the flu the whole time it was out of the question and unsafe to switch then. Plan B was Spring Break, but ENT decided a scope was in order and I didn't want his airway looking bad if he didn't tolerate the new formula. So here we are in July and Ben has his annual GI appointment on July 10 (I've already rescheduled two times because I didn't have him on the new formula yet).

I knew I HAD to have him switched over by this date and I couldn't cancel his appointment again. It gave me a deadline and I really needed a deadline because I've been putting it off as long as possible (I have major anxiety over changing his food). Last year when we tried to switch, it was awful. After just receiving 1 ounce of the new stuff mixed in the old stuff, Ben got violently ill for 24 hours (that is how long it took to get e1 ounce out of his system). I think both Ben and I are still traumatized from that day. Not to mention Ben has so much trouble with feedings and rates anyway and we are FINALLY at a point where he doesn't vomit or retch except when sick. And it took us about 2 years to get here... so why mess with a good thing, right?! Well, I guess his baby formula doesn't provide the nutritional breakdown he needs at his age... so food change here we come (we are trying a different formula this time though and it is suppose to be more hypoallergenic/broken down than the last kind).

Today through the beginning of next week was as good a time as ever to start the process because neither Ben or I had any appointments. Today from 12 pm - 3:30 pm he had a little bit of the new stuff, some water (which he has also never had before) and mostly his regular baby formula. I'm happy to say, so far - so good! Tonight will be the true test because he eats from 8 pm - 8 am. If that goes well, on Thursday we will try a 50/50 mix (including water) and so on and so forth. I'm really hoping for smooth sailing! It kind of makes me sad to think about the fact that Ben is almost 4 and has never had anything but non-dairy, hypoallergenic baby formula (Allimentum). He's had pea sized tastes of pudding, ice cream and a few stage 2 baby foods, but nothing really that his body has had to digest. He doesn't get to enjoy some of the simple pleasures of life, such as eating.

Who Needs a Pool?!?!

It has been perfect pool weather here in Cincinnati - 90's and sunny! For my enjoyment, I turned our hot tub down to 88 degrees and started using it to cool off and relax on those hot afternoons. Today Mike and I purchased Ben a pool floaty to use in the hot tub. I figured if I found it relaxing, so would Ben... and he sure did!!

We had to be very careful to watch that water didn't get close to his ear openings (to prevent infections with his cochlear implant) or his trach (because if water got in his trach it would be like drowning since it goes straight to his lungs). It was a two person job but well worth it!

Hippo Therapy - Week 2

Words cannot express how tickled I am about Ben's 2nd week of Hippo Therapy. He did AMAZING and actually enjoyed it. He wanted to get on the horse this time (he rode the pony Dixie) and rode around and around for 20 minutes without fussing once. And the lack of fussing meant he didn't have extra secretions so we didn't have to suction at ALL during the ride! I was beaming the whole time and couldn't believe my eyes. I'm sure I sounded like a broken record because I kept on saying "I just can't believe how great he is doing".

The best part is that after I decided he had enough (he could hardly keep himself upright even with myself and the OT holding him up) and we took him off, he cried and tried to reach for the helmet to put it back on. He wanted more!! Truly amazing and such a difference from the first week. I am so proud of him and he shows me time and time again that I should never doubt him.
Ben has two more sessions left - they are Monday night at 6:40 p.m. - and I hope the next two go as well as this one. We will try to get him in for the fall session (the 1st summer session is full and the 2nd session is during the time when Ben has his testicle surgery so we won't be doing that one).