Improving

Eye appointment went well. Pressure is still 15 - which is good. A lot of the blood has been absorbed. If all keeps on going as it has been, we have only three more critical days of sedation, keeping the head elevated, "bed rest", constant dilation of the eye, daily appointments and close watching to avoid any touching/hitting of the area. I am now starting to breathe a little easier. The possibility of Ben loosing his vision in his better eye (the eye he sees distance with) has shaken us to our core.

Eye Update - After Dr's Appointment

His eye bleeding has gone down, along with his pressure - which is now actually within normal range (15). Still having to keep him sedated and on "bed rest". Will go in tomorrow for another pressure check. Doctor was ok with Ben not wearing the metal eye shield considering we couldn't keep it on. He just needs someone sitting right next to him at all times to prevent him from rubbing, touching or doing any hitting to his eye area. Still doing both drops and the one every two hours - but now only during waking hours which is much better.

Thank you so much for all the prayers and well wishes! One day down...hopefully not too many more to go. And thank you especially to my mom for helping (and our nurses too). We couldn't be getting through this without them.

Eye Emergency

Here is a run down on the situation with Ben. Excuse any typos or mispellings...just wanted to get this out ASAP and when I had a minute of Ben sleeping.

We have no idea how Ben's eye got injured or when. Could of happened many ways because he throws toys and hits his forehead hard with his firsts when angry/frustrated - could have hit his eye instead. Anyway, I noticed on Wednesday his eye was bloodshot, but nothing too major. Yesterday it was stlll bloodshot and actually looked a little swollen. I thought maybe his allergeries were bothering him. Then around 6pm yesterday, I noticed his iris looked half filled with blood. I called our doctor on call and as I was describing it to him, I looked at Ben's eye again and now it was completely filled with blood and you couldn't even see his pupil and it seemed to be giving him a lot of pain. I won't bore you with the 6 hours in the Emergercy Room at Childrens or all the tests they had to perform. Ultimately, we were told he had a hyphema - eye trauma that causes bleeding in the eye. We had two options, admit him, put this metal cheese grater looking patch on him and keep him sedetated and follow him for the next 3-5 days to make sure pressure didn't get worse in his eye OR take him home, keep him sedated, on bed rest and put same patch on and bring him in daily for eye pressure tests, including on the weekend. The main reason they are wanting the daily tests with optho is because he can't tell us if it starts feeling worse or hurts him. And the eye patch is because they are extremely worried about him hitting his eye again and causing a rebleed, which could ultimately cause him to go blind in that eye. They know the options aren't good fpr a disabled child who doesn't understand, but they kept on stressing the severity of the situation not giving us any other options. We choose option 2 because Ben is deathly afraid of the hopstial and I didn't want to put him through that. As far as the patch, he wouldn't keep it on for even 5 seconds AFTER being on a strong dose of Valium AND it being around midnight and he was exhausted. He just kept on ripping it off. We ended up taking him home without it on and I'm committing myself, our nursing, my husband, my mom and anyone else around him to be watching him and sitting by him 24-7 to grab his arm if he tries to hit his head. He is also getting two different kinds of drops, steriod drops which have to be given every 2 hours around the clock - which even if he wore the patch, taking it off every 2 horus to apply drops isn't exactly easy. The other drops are strong dilating drops to keep his eye dilated so it doesn't have to work and cause more bleeding. And the hospital wasn't allowed to send us home with Valium so we had to find a pharmacy to fill that RX when we got home after midnight. We will get a call this morning on when we need to go to clinic to get checked out today. I'm thankful we have one day of going to clinic instead of having to wait in the Emergency Room like we will on the weekend. I'm so worried they are going to insist he be admitted once they learn he hasn't been wearing his patch. Oh, and time frame to get better is anywhere from 5 days to weeks.

HOLTER Results

Good news! Ben's HOLTER results are very similar to the HOLTER he had two years ago. Which means his heart isn't slowing down any in giving the rescue beats he needs every minute or so. We don't need to go in for a follow-up test for another year.

Sensory Room

There is a sensory room at Ben's school that he gets to go to for 15 minutes a day. It is called the Rainbow Room. And the thought is that after spending five minutes at each station, the child will be more focused to do his school work. Curious about what the Rainbow Room looks like? Below are short videos of Ben at each station. After seeing the videos, you will understand why Ben LOVES going here!
At this station, Ben is in a vibrating beanbag with these spaghetti string lights to play with.

This one, he is in a ball pit with light up balls.


And the last one, he is laying in a moon shaped chair with a weighted blanket on him playing with this light strand. And don't worry about the germs with his licking of the toys. All items in here are created to be antibacterial.

Ben's Spring School Picture

While We Wait...

Still waiting on the test results from Ben's heart HOLTER. As soon as I hear, I'll post the news...hopefully the good news. In the meantime, Ben has found entertainment in this new ball he got for Easter from his Aunt and Uncle. It has brought much joy to his life and kept him entertained for hours on end...which is nice considering all the rainy weather we have been getting.