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!

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...