Overdue Update

Ben's world has been keeping us busy and out of trouble.

MEDICAL UPDATE:
I'm happy to report that his vomiting issues has subsided with the switch to the new formula "EleCare". However, he still hasn't regained the weight he lost during those months of vomiting and has actually lost even more since the vomiting has stopped... which is puzzling. His GI doc now wants to add a high calorie, protein-free nutritional supplement called "Duocal" to his diet. This can be mixed in with his current formula and will add additional calories. We will start this next month.

Ben will also need a test called an "Upper GI " to make sure that he doesn't have a slipped hernia above his Nissen (the surgery he had at 4 months that wrapped the upper part of the stomach around the esophagus and stitched in place to prevent reflux). This could have been the cause of his past vomiting and the reason why Ben still has so much air in his stomach that needs vented during his feeds.

Ben had an eye exam which showed that his vision has worsened and we can't hold off on glasses any longer. One eye is near sighted and the other is far sighted. Seeing how Ben does with glasses should be interesting. We are only going to have him wear them during school hours since he sits up most of the time and when sitting in his high chair at home. Trying to get him to wear glasses when scooting around on his side will just be too difficult and the eye doc agreed that it wasn't worth fighting him and having them broken. Wearing them outside won't work either because he needs a double layer of darkness (we put sunglass clip-ons on his sunglasses) and can't obtain that without getting prescription sunglasses too and insurance only covers one pair. Will definitely post a pic of Ben in his new glasses when they come in.

SCHOOL UPDATE:
School is going really well. Ben is in morning preschool again this year, has the same teacher, the same one-on-one aid and our two day nurses are the same. This made the transition very painless. The only addition to the team has been the interpreter... and she is wonderful too. At first, Ben seemed really interested in all she was doing and was trying to mimic her. Most recently, he has become stubborn with his signing and is refusing to do any. I think he is just trying to be difficult to see what he can get away with.

RECREATION:
Ben is still loving his car rides, playing on the mats in our garage, going for walks and swinging.

His wheelchair soccer season has started up again and he has been enjoying that. This year he is able to give "high fives" and that has been a big hit! Personally, I love being around so many families/kids that understand and get Ben and his needs. It seems to be the place "he fits in" the most. They are also a great resource for any questions regarding making adaptions to house, bath and car too. Since Ben is the youngest, they have already done what we are in the beginning stages of planning.

Horseback riding starts in October.

And last but not least, I think we have adjusted well to not having night nursing every night and I enjoy being with Ben when he wakes up with the roosters (5am is his standard wake-up time). But we have been lucky with only having a night or two a week open. Come October, I will have a 9 night stretch of no nursing when our main night nurse is on vacation so I may sing a different tune then. :)

Bike Trailer

Riding in the bike trailer has become one of Ben's FAVORITE past times.

Some of his other favorites are car rides, going on walks (he doesn't care what you push him in), swinging, playing in the garage sensory table and shopping (YAY for me!). Ben pretty much enjoys anything that requires him to be outside. He is definitely all boy!

Ben's Fifth Birthday!

Because of Ben's recent vomiting problems (yes, up until last week we have still been dealing with them) and the cancellation of night nursing (now only on certain nights), we decided to cancel Ben's family birthday party. We celebrated at home with some gift/card opening (a favorite of Ben's) and cupcakes. Since Ben doesn't eat by mouth, we gave him free reign to play in his food. He LOVED it! Can't believe my amazing little guy is FIVE now!!

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.