8iRWeiXjcKj9kUz5Tebo4_k_FtY Life with Two Special Needs Children: April 2012

Wednesday, April 25, 2012

New Post on Private Blog

I have a new post on my private blog.  If you want to read it, please let me know and I will send you an invite!

Monday, April 16, 2012

Ultimate Blog Party 2012

I am joining the Special Needs section of the Ultimate Blog Party 2012.  Please join me and check out some other special needs blogs!

Ultimate Blog Party 2012

Thursday, April 5, 2012

World Autism Day (April 2nd) and the Reason I'm Trying to Get the Word Out

When I scheduled Caleb's EEG, I wasn't even thinking that the day that we were scheduling it for was World Autism Day.

Sunday night we stayed up until about 2:30 a.m. because I just couldn't stay up any longer and needed some sleep so that I could drive to the hospital, since Tony had to stay at the house to get Cassidy on the bus.  Caleb couldn't eat Monday morning due to the sedation, which made things start on a rough patch, but I thought we were over it by the time we got to the hospital.

We got checked in and waited for the registrar to come and get us.  She never came out of her office, but called for us from her desk.  We went in, verified his insurance information and she printed the arm band.  As I was trying to talk quietly to Caleb about which arm he wanted his arm band on, the registrar came from around the desk and leaned down and immediately started reaching for his arm.  I was trying to tell her that she needed to wait, but she just kept coming and Caleb started screaming and kicking.  I was trying to restrain him, but with my shoulder still being very sore, it was quite difficult.  Another registrar came in and just grabbed his arm, which caused Caleb to kick her.

The lady that checked us in came in and told them not to worry about it, just to call upstairs and tell them that he refused to put it on and to attach it to the paperwork.  She said that she would walk us upstairs, even though I knew exactly where we were going, since we've been there so many times!

As we were walking down the hall, Caleb started refusing to move.  I got his arm and told him he was coming with me.  He tried hitting and kicking and I and the hospital employee had hold of his arm.  We were walking toward the elevator and saw a hospital security officer.  The person walking us asked the officer to come with us.  He started following us and Caleb turned his head and started spitting.  I covered his mouth while holding his arm and the officer took the other arm.  When we finally got in the elevator, Caleb was still spitting and trying to kick.  The officer pinned him up against the wall of the elevator.

When we finally got to the PICU area, Caleb was screaming and kicked the officer really hard in the leg.

By the time we got to the PICU room, another officer was there.  He ended up taking over for me and I just lost it.  I had flashbacks to the time that we had to try and readmit Caleb to the psychiatric hospital the day after he was admitted and he had to be restrained by three grown men because he was so out of control.

One of the nurses asked me if I wanted to rescheduled.  Are you kidding me?  I actually laughed at her and told her, "No!"  I went on to explain that if he got away with not getting the procedure done that day, we'd have even more problems the next time we came in.  I was on the phone with Tony when she asked me that!

I even told Caleb at one point that if he didn't start calming down and stop hurting people, I would make them tie him to the bed, like we had to do the day he was admitted to the PICU a couple of years ago because the psych hospital that had just released him after cutting one of his meds in half wouldn't readmit him!  

We made it through the initial exam without too much incident, but then came time for the IV insertion.  It took seven of us, the child life specialist, me, two officers and three nurses, to hold him down for the IV.  While it has taken us upwards of four people to hold him down before, it just goes to show you that he is getting so much stronger and I have no idea what the future is going to hold.  Tonight I heard a wonderful speaker at our church's women's event and one thing that stuck with me is that although it is important to think down the road, we do need to live in the here and now and not worry about the future, because number one, God knows the future, and nothing we do to worry about it can change it.  So for right now I choose to live in the here and now and continue to try and educate people and make sure they hear me and listen before trying to get into my child's face!

Wednesday, April 4, 2012

Post on Other Blog

I finally had a chance to do the post I was wanting to do on my private blog.  If you want to read it, please message me with your e-mail address and I will send you an invite.

Sunday, April 1, 2012

Caleb EEG #10 or #11 (I've Actually Lost Count!)

Caleb is having an EEG tomorrow and we are working on "Operation Keep Caleb Up" tonight by watching Star Wars Phantom Menace.  Caleb is a HUGE Star Wars fan, but the time that we tried to watch the original first Star Wars, he freaked out the instance that Darth Vader came into the picture.  He found the prequel trilogy that we have and he wanted to watch it yesterday with his worker.  I told him that he needed to watch these with mommy and daddy.  So tonight seemed the best time as any to watch at least one of them.

In the past we have had to keep Caleb up for 24 hours; however, I do not think we're going to last that long tonight.  I am exhausted and will need to drive one van to the hospital, since Tony has to get Cassidy on the bus.  Tony will then come to the hospital.  That way he will also have a vehicle so that in case we get delayed due to Caleb not waking up quick enough from the sedation that they use like last time, he'd be able to come home and get Cassidy off the bus.

So please pray for us as we head to the hospital in the morning for Caleb's EEG.  This is actually just to make sure his medicines are working, since it's been a year since his last EEG, so we're not really expecting anything out of the ordinary.  I did talk to his doctor's office and they're going to do some labs through the IV since they will be sedating him and that way I don't have to have an 80+ pound child squirming on my lap to try and get labs!  Score one for Mom!!!!!