How we are passing the time...

We along with most of the midwest received an awful snow/ice storm earlier this week. Ben has been off school since Tuesday. He has been a tad bored just staying in the house, so we decided to make use of the snow tube we received for Christmas. The prep time to take Ben out into the snow took 10 times longer than the actual snow ride. Mike and I took turns pumping up the tube with a bike pump (Mike's work was closed on Wednesday due to the weather). This was after we were both sore and tired from chiseling the 2” of ice of the driveway. We kept on saying, “Ben had better like this” the entire time we pumped up the tube. Then, it took me a good 15 minutes to get him and all his stuff ready for the snow ready. It took longer than normal since Ben would cry every time I took one of his attachment items from his hands (which happens to be the light up stick and sign language cards today) to put on an item of clothing. Ben refused to wear his mittens so I grabbed the closest thing in the garage (a comforter) and threw it over him to keep his hands warm while he held on to his light up stick and cards (yes, he took them on the ride too).

Ben started fussing at first, but once we took off he was fine. Mike did most of the pulling but after 5 times around our backyard, he was beat (it wasn't easy walking in the snow and pulling the tube especially after the shoveling work out). I took Ben around once and then we decided to call it a day. I think we spent 10 minutes outside. LOL! But, Ben did seem to enjoy it and the pictures/video is priceless. My favorite quote of the sled ride came from Mike. As he was going around the house, he yelled “I can’t see him over the blankets, so if he flips out the back let me know.”

And ignore me and my mistake about the date. I'm still in December mode!

Ben's Friend Ella

In previous posts, you may recall me referencing a sweet little friend Ben has in his class. Her name is Ella and she is adorable. Ben and Ella just so happen to ride the same bus too. Whenever I carry Ben onto the bus in the morning, Ella always says "HI BEN." Last week, his afternoon driver asked if I thought Ben and Ella would enjoy sharing a seat. I thought that was the best idea I've heard in a long time. On Tuesday, they shared a seat on the way home. I'm happy to report Ben was a perfect gentleman and Ella seemed tickled to be sitting with Ben. I'm so happy that Ben has a friend and someone looking out for him. Aren't they adorable together?! If only they were both looking at the camera in the same picture.

Usually don't post...

I usually don't post much regarding the legal/governmental hoops we have to jump through on a regular basis because we have a Special Needs Child. It really is exhausting and time consuming. Recently, it has become a nightmare!!!

We are still awaiting payment for Ben's leg injury. I honestly do not understand why it has become such a mess. His therapist was more than cooperative, wanting her insurance to pay his medical bills and we thought it was a simply matter. Boy was I wrong and boy has it turned into a mess. I'm calling attorneys and spending hours talking to them. Everyone is confused and not one attorney understands all aspects in play. What makes it complicated is that Ben has Medicaid and can't have more than $2000 in his name or he will lose benefits. If he even loses Medicaid for one week, he has to go back on the Ohio Home Care Waiting List... which many of you may remember took us years to get. They money to pay the hospital bills for his leg injury can't be paid directly to the hospital or our private insurance (which would make the most sense)... they have to be paid to Ben for us to then pay. And a trust would be set up in Ben's name by the court to do so (with me serving as his legal guardian and a guardianship would need to be set up).

If this trust is set up; even though the money would be paid towards bills, Ben would lose his waiver spot. To avoid this, we could set up a special needs trust to put the money in, but this would cost us thousands of dollars... which we don't have and would be a totally waste to pay for a temporary account to use to pay the bills. Any attorneys who specialize in Disability Law we have talked to, doesn't know anything about personal injury settlements and vise versa. Nobody is able to help. I'm really at a loss. And should we have to pay for an attorney even though we have settled and all we want is our bills paid related to this injury??

On another note, I received a form from Ben's doctor that we requested. On the form is a spot for diagnosis. In addition to CHARGE Syndrome, they had Cerebral Palsy listed. WHAT??!! This is news to me! Although we know Ben had a stroke at birth and had some muscle tone issues related to that, I've never know they considered him as having CP. After talking to the doctor and him explaining that basically what he had happen at birth and the muscle tightness he has is under the umbrella of CP, it still really hit me hard. I don't know why, but it did. I guess CP was an additional label/disability I wasn't prepared to add to Ben's list of challenges. It doesn't change anything now, I just makes me worry more about his future ability to walk. I have hopes of him walking one day, but now I worry I'm not being realistic. First the leg break to set him back so much that he still won't bear much weight on it, then finding out his hips aren't in the socket completely (which I'm still not sure isn't related to his leg break) and then finding out this new diagnosis. It's just so much for Ben to overcome.

On a good note, the cyst they found on Ben's spleen has diminished in size.

The Wheels on the Bus...

Ben rode the bus home from school today (he didn’t ride it to school because I didn’t want to ruin his day if he hated it). He had a window seat and the whole bench by himself – his nurse sat in the bench seat behind him. As luck would have it, the bus that dropped him off had dark tinted windows just like our car so he didn’t need his sunglasses! How perfect is that?! His drive home driver (a different person picks him up) was super nice. She actually lives in our subdivision and she said she’s seen me walking Ben during the summer. The bus stopped out front, I got on and picked Ben up and carried him inside. His nurse carried all his medical equipment and backpack. He was peacefully looking out the window when I got on and didn’t even notice me. It was so funny when I got on the bus because it looked completely empty other than our nurse. The little preschoolers aren’t tall enough to see over the seats. But once you start walking down the aisle, you see their little bodies buckled in next to the window. So cute!! There were about 12 on the bus with Ben and he was one of the last stops. It brought tears to my eyes to see him sitting in the seat looking out the window.

Happy New Year

Happy New Years everyone. Hard to believe 2009 is going to be here tomorrow.

On January 5, Ben will be back at school. He is going to be starting to ride the school bus once he goes back. Pretty exciting, isn't it? For preschool, only the special need kids have the option for busing. They ride the bus with only other preschoolers. A typical preschooler can ride the bus if they live on the same street as a special need child and are willing to walk down to their house. I was a little hesitant at first because I knew Ben wouldn't tolerate waiting outside for the bus. But, Ben's teacher called and asked if we had him ready but inside, would they stop and wait for us. They were very accommodating. So, the bus will pull up at approximately 8:45 a.m. and wait for us. I will then carry Ben to the bus and his nurse will carry his equipment (suction machine, trach bag and backpack). There will be a carseat on the bus for him to ride in. I'm really excited and hopeful that Ben enjoys the ride. On the first day, he will just be riding the bus home. If all goes well, he will start riding daily after that.

Quick Update

Hi everyone,

Hope you all had a Merry Christmas. We did. For the first time since Ben's birth, we had a nurse on Christmas Eve and Christmas night. What a nice treat! It was wonderful not having to cut our time together short to rest up. And we got so many nice gifts from each other, our families and our wonderful nurses. Ben even participated in some of the gift opening (with the help of Pap Pap). It was a Christmas to remember forever! This coming weekend, Mike's mom, sister, brother-in-law and nephew are coming to visit and celebrate a late Christmas with us. We are looking forward to it.

Ben is on Christmas break from school until January 5. We have two appointments during break. One is a renal ultrasound tomorrow to follow-up on the cyst they found on his spleen three months ago. The second is an opthamology appointment on Friday. Just the normal annual eye dilation to check the peepers.

Below are pictures of my favorite Christmas gift. Santa surprised me/Ben and left it under the tree. I told Santa once about a little Lazy Boy I saw another CHARGE boy in and he remembered!

Pap Pap Tom or Pap Pap Tim??

You know how they say everyone has a twin somewhere out there in the world? We've thought for a while that we've found my dad's (Ben's Pap Pap). Dr. Timothy Johnson provides on-air medical analysis for "World News Tonight," "Nightline" and "20/20." He has also provided commentary on medical problems and answers for viewers of ABC News' "Good Morning America". He has an uncanny resemblance to my dad and his mannerisms... so much that it is spooky seeing him on TV.

We went to my parent's house today and my mom thought it would be funny to print and laminate a card of Dr. Tim to see if Ben could tell the difference (remember, Ben LOVES my dad and spends most of his time either staring at him or a picture card of him, so he should know better than anyone else the real Pap Pap). Well, not only did Ben not notice the difference between the two, he developed a love for the new "impostor" Pap Pap card. Ben is now carrying around a card of Dr. Timothy Johnson everywhere. It is too funny!

You be the judge, are Tom (Pap Pap) and Tim (the Doctor) twins separated at birth?