What's Going On?

Ben has been having trouble tolerating his feeds when he wakes for the day. It has been a struggle on and off (more on than off) for the past three weeks. He starts gagging, has tons of secretions, starts sweating and vomits a few times. After the episode, he is lethargic for a few hours and then springs right back to his old self. I have tried everything I can think of to help and am often asking myself "What is going on?". We can't have him vomiting like this every morning for many reasons. First, he can't afford to lose the weight. Second, his nasal passages are open for the first time ever after too many surgeries. When Ben vomits it comes out his nose and ears too and I'm so worried the vomit is going to cause scaring in his nasal passages and close them off again. Thirdly, Ben's cochlear implant was implanted differently than a usual implant and is exposed in his ear. Because of this, we have to be very careful about any ear infections in fear it will infect the implant that leads right to his brain. And last but not least, it is just heartbreaking to watch him struggle every morning and feel so awful. Nobody should have to go through that.

It just so happens that two other little CHARGE kiddos we know are admitted in the hospital for the same feeding issues right now - just more severe than Ben's episodes because theirs continue all day and ours subside after the morning (although yesterday he had trouble in the afternoon too, but I'm hoping that was a one time thing). And they haven't found anything to help or gotten any answers either.

I've been trying to manage it at home and with a few phone suggestions from Ben's doctors, but am now at the point that it isn't improving (actually yesterday after following some suggestions from the GI Nurse Practitioner Ben started doing worse). I have no choice but to start scheduling Ben for the visits with his docs and have him endure the tests that I'm sure they are going to want to run. I'm dreading it because Ben is terrified of the hospital (can't say I blame him). Last time this happened, Ben ended up spending two weeks admitted and a dozen tests run and nothing provided any answers. There is nothing worse than putting your child through all that to not find out anything.

If anyone has any input or suggestions, please let me know. I'm starting to wonder if over a certain period of time, a child can develop an allergy/sensitivity to their food. Has anyone experienced that or checked into that?

It must be in the genes!

Shortly after my last post, I recieved an email from Mike's mom with two pictures. One was of Mike in a metal tub just like Ben and the other was of his mom in the same tub. I couldn't belive it! I've never seen these pictures before so what are the odds that my mom would have a tub just like theirs and we put Ben in it!

Maureen (Mike's Mom) - Youngstown, Ohio

Mike - Youngstown, Ohio

Ben - Tipp City, Ohio

Our Life... Captured By Pictures

For Memorial Day, Ben participated in the "decorate your ride" parade in Tipp City, Ohio. Grandma Deb really tricked out his wagon!

Ben using his pony walker to leave preschool and walk to my car. He really came a LONG way this school year with his walker! (And I hope he continues in the fall considering he refuses to go anywhere in it at home.)

Who needs a pool when you have a metal tub?!? Seeing him in this just cracked us up and reminded me of something you would see in the "Little Rascals".

There is an all-inclusive handicap-accessible park about 15 minutes from our house. We drove there to check it out and Ben really loved the swings. Actually, it was the taste of the swing piece by his face that he really seemed to love... he licked it clean and then some!

I couldn't resist myself. For Father's Day, I had a "Bigger Cheese" shirt made for Mike to match Ben's "Big Cheese" shirt. I know it is cheesy (he he), but I thought they looked super cute!

Wheelchair & accessories has been APPROVED!

GREAT NEWS! We just learned that Ben's wheelchair and all the necessary accessories have been approved by our private insurance. The chair is being ordered as we speak and once it arrives, we will have an appointment with the supply company and Phystical Therapist at Children's Hospital to make all the adjustments so it fits Ben perfectly.

Ben's Hawk!

Schools out... Summer is here!

Ben's school ended the beginning of June and he was definitely ready for summer break to start. The last week of school, Ben was getting very upset when we turned down the street school was on. Although he got over it pretty quickly, he refused to do much actual "work" while in school. Sounds just like a typical kiddo, huh? Both Mike and I went to school with Ben on his last day for the end of the year party. And all I can say is Ben went out with a bang... and not in a good way. He decided to pull a stunt that hasn't been done in a while, let alone EVER done outside of the house! He pulled his trash out at school! In Ben's defense, his intention was to only pull off his artificial nose that sits on his trach but it was stuck on pretty tight and Ben got more than he bargained for when he gave it a strong tug. He really scared us and getting the trach back in wasn't easy because Ben was panicking himself. We all learned a lot from that incident and god was definitely looking out for him that day by having it happen on the only day both Mike and I were there in addition to his nurse.

On a more positive note, we learned that Ben will be getting an Interpreter in addition to his nurse and one-on-one aid next year. His speech therapist really thought his sign language was taking off so much that he would benefit greatly from an Interpreter. The therapist and teacher didn't want to say anything to us about getting one until they got approval from the Special Ed Director and actually hired one. They were worried it wouldn't be approved because no child in Preschool in our school district has ever had an Interpreter. Well it was approved and someone was hired. I'm so excited and can't wait to see how much Ben learns next year.

We are also still waiting on complete insurance approval on Ben's wheelchair. The chair itself was approved, but they need more documentation for the accessories... and those are just as important as the chair (like getting a shelf for his medical equipment, an IV pole for his tube feeds, etc). I'm hoping the fact that they approved the chair is a good sign for the rest of the stuff. Just ready for the chair now and tired of waiting.

Ben is in week 5 of his 6 week Hippo Therapy (which is 30 minutes once a week) and he is having his best session ever. Not crying at all, even the first session and actually riding the whole 30 minutes - with the help of dad holding on one side and the therapist on the other, of course. And he gets so excited when we pull into the parking lot. He is just totally loving it and it warms my heart to see it. He really has come so far.

And last but not least, Ben is supporting a new summer do... a MOHAWK! And the mohawk has given Ben a new feisty attitude. Guess I have no one to blame but myself. Picture to follow in the next few days.

Well that about sums everything up. Sorry it has been so long since I've posted. Life just gets in the way :)

Things Have Been Going Well...

I'm happy to report that things have been going well with Ben. He just saw GI and Endocrine this week and both were happy with his growth. Ben's really had a growth spurt lately and he's finally GROWN OUT of his 18-24 month pants. He's now moved up to a big old 2T! And wearing a 3T in tops... and we don't have to roll the pant legs or sleeves anymore. What a big guy! He's following his own curve on the growth chart too, so that's good news. Even though he is only the third percentile for height and 10th for weight, as long as he doesn't fall off his curve they don't plan on doing anything. Ben is also going to get one huge dose of Vit D (50,000 IU) every three months to help him maintain his Vit D since he has had trouble in the past with it and it may be causing his low bone density.

Ben recently got fitted for a wheelchair and we are excited to get it. I was shocked to hear that the wheelchair fitting team at Children's Hospital thought he was mentally ready for either a manual wheelchair that he pushes or a power chair. But since the manual wheelchair doesn't have storage for his medical equipment and he's never been in one to see how he does, we weren't ready to go with that option yet. And the power chair requires ramps in the house, van, etc, we weren't ready for that either. We decided to go with something we push for now and in about 3 years get him one of the above. In the meantime we can work on both options with a therapist so he'll be ready for one or the other when the time comes. Not only will his wheelchair make him a star at wheelchair soccer and the envy of all his friends b/c of the highlighter green color and glow in the dark feature, it will also make life much easier for us. We are praying insurance covers 100% of the cost of the chair because if it has to go to Waiver for approval, they are running on a 336 day turnaround... which is crazy to me. It would take about three months if insurance pays for all of it. The chair Ben is getting is called a Zippy (which makes it sound motorized, but isn't). Below is a pic.

Hippo Therapy is starting up again in May and we are looking forward to another good 6-week session.

I have also started selling my handmade greeting cards/stationary/invitations/birth announcements. If you ever need anything, keep me in mind. My website is http://www.mylittlescrapstore.com/

This has been a great thing for me because I'm able to make a little something while still being home with Ben. And I find creating cards a great way to express creativity and escape from the stresses of life.