Wow, William woke feeling soooo much better today! He was chatty, alert, active and ready to start his day. Yesterday we weren't sure if we would be able to make it to church today, but there was no doubt when we saw how good he was feeling. The Doc yesterday did say that after a day of the prednisone he should be much better. Thank God!!!
Will had a difficult night last night. At 3am he couldn't stop coughing and gagging. His temp was 100.7. So we gave him some pedicare, motrin and a few puffs of his inhaler. He stayed up till about 4:30. Tim says he heard him coughing all night with some rests inbetween. This morning at 9:30 his breathing was really labored, so I gave him a few shots on the inhaler. By 10:30 he didn't seem any better so we called the drs. Luckily there is a walk in clinic that is open everyday. On the way to the office I sat in the back with him. Each inhale seemed like a gulp and each exhale came with a moan/hum. They took us right back when we told them he was having breathing trouble The nurse took his info and when the physicans assisant came in she said he was retracting. His ribs were showing each time he sucked in a breath. The muscles in his neck were also sucking in. Which meant we was working way too hard to breathe. She said he needed to get over to the ER. We could drive him or the ambulance would take him. After she said that he could eventually get fatigued and quit breathing, we decided to take the ambulance ride. Before we left she gave him some oxygen and part of a breathing treatment. William didn't want to get in the ambulance, but he did and didn't ride on the gurney, but in a seat. Once at the hospital he was given two breathing treatments and a dose of prednisone. We also got a prescription for a nebulizer for home. It should work better than just the inhaler. We were there for a few hours. My brain is fried. I can't remember the rest of the details. I don't know why he has 'reactive airway diesese' now. It just doesn't seem quite fair. on top of everything else we worry about him, now we have to worry about if he's breathing right. I know it's stupid to get into the 'why me or why him' mentality. I'm just a human mother that sometimes slips into destructive thinking. Anyway, we now have an inhaler, a nebulizer, and more prednisone. He fell asleep on the way home.
So, this is how my son looked when he left for school this morning. He didn't start out with this in mind for a costume, but it eventually progressed into the headbangers ball / breakfast club / 80's look you see here. Kinda scary how 'real' it looks! Ok, he can have his fun at school today - but then he needs to transform back into the straight laced A student. :) Oh, BTW - we used a straightening iron on his hair, gave him Nikki Sixx like black lines, the shirt is one I saved from a high school boyfriend (yes, he actually wore it), that's my red flannel, tim's bandana around his wrist and he's wearing a necklace that says 'guns and roses'. HAHAHAHAHAHA!
William did really well today. A couple of really nice techs were working with us. First they did some measurements and marked on his scalp while he sat in my lap. They put some toothpaste like stuff on the marks on his scalp, then stuck the little electrode type things with wires on.
In order for them to stay on good, they had to wrap his head with a bandage. I wasn't sure how he would take that since it had to be wrapped under his chin too. But he was OK.
The testing actually only ran for 20 minutes. They turned out the lights in hopes that he would fall asleep. I guess that's where the sleep deprivation comes in. He never fell asleep and every time Tim tried to turn off the cartoons, he got really restless. So we just tried to get him to close his eyes. The last thing they did was flash a bunch of lights at us.
The bandage came off and he got a sucker. After the wires came off the tech tried to wash some of the goop out of his hair. He hated that and we really only got a little out. He was more than ready to leave.
On the way into the lab Will spotted the vending machine with the powdered donuts. We used the donuts as a motivator through the whole process. Each time he didn't want to do something all we had to say was, 'do you want the powered donuts?'
After all that we headed to his OT appt with Dustin. When he came out and greeted Will he said, 'Hi Dustin! Do you like my beautiful hair?!!' That was pretty funny because he hair was pretty jacked up , but we didn't make a big deal out of it!
He's really going to work on some things that will be a challenge to William.
He had a great time and went along with everything Dustin wanted to do. He didn't suck his thumb, flick his fingers or come cuddle up to me the entire time.
This activity was a lesson in trust. Will kept saying, 'hold on! Don't let go!' and Dustin reassured him that he would hold him the whole way down. He did and Will went down two times.
He crashed out on the way home and took a big long nap. Tonight I was able to get him into the bath and gently wash all the goop out. :0) We will find out the results of the test in a couple of weeks when we see the neurologist.
It's a quarter to ten and all the kids are still awake. It's not really an accident. One of them actually is supposed to be up still. The older two are just taking advantage of the situation. ;) One of the instructions for William's EEG is to be sleep deprived. So we have to put him to bed two hours late and get him up two hours early. Tonight I tried to explain to him what we will be doing tomorrow. He's at a point where I can explain a future event and I feel like 'something' is getting through. At least he will have some idea tomorrow when we don't put him on the bus, but drive him downtown to the hospital. He's doing pretty good lately. Friday we got him a mini trampoline to jump on. It's one of the recommended OT activities. We had one a long time ago that he really liked. The OT guy we saw said it has to do with joint compression. Anyway, he likes it - and so does Autumn!
So, just when you think you are at the end of your rope, God steps in and shines a ray of light through your window. We had our first appt with the occupational therapist today. His name is Dustin and he seems really nice and knowledgeable. We were there for an hour and Will did not stop the whole time! He slid down the slide in a bunch of different ways, swung on a cool square swing and played around while we gave Dustin some backround history. I learned a lot just from being there and talking with him. Will has not had any OT and this is going to be so good for him and me!
I feel like I've hit another huge mountain to climb when it comes to Will and his treatments. For awhile we were just cruzing along on flat ground. I will not accept that there is not ONE pediatrician in the Treasure Valley that would be supportive of our choice of therapies. The dr we spoke with today was a total shmuck. So, autism goes in waves,huh? It gets better on it's own? Really? So when will my six year old get better at pooping in the toilet and not his pants? At the moment I am waiting for Will to clean up a giant poop mess in the bathroom. I bathed him tonight and put on fresh clean underware and pj's. Oh, did I mention that I bathed him because he had already pooped in his pants? So he does it again. This time it's his turn to clean himself. I calmly took him to the bathroom and waited for him to clean himself. He did it and his only complaint was that he had to take another shower. The sad part is, the poop doesn't seem to bother him.
In the past month we have:
called 911 because of breathing issues,
given inhalers and steriods,
continued the process of starting his home IBI program with therapists,
continued on with his supplements (when he wasn't sick or barfing),
two evaluations with a speech therapist,
two visits with another ped who doesn't believe biomed works,
had numerous conversations and emails with his resource teacher about behaviors and plans to help him and develope an IBI program,
had to pick him up from school because of an 'unusual tantrum',
considered the possibilites of seizures,
made an appt for an EEG and ped neurologist,
became aware of the fact that he suffers from sensory integreation dysfunction,
and tommorw I finally have an appt for him to be evaluated by an OT.
Really - is it too much to ask for a freaking pediatrician who will support me and my efforts??????
It's not his fault and I don't hold resentment towards my son. I am angry at the system and the 'people in charge' who don't seem to give a crap. I often wonder what they would do if it were their kid. What if that were their list above? I don't care about that list. It's not to feel sorry for myself or to look like a hero. I'd do it all again in a heartbeat. I'll do it forever because that's what a mom does. And I'll continue to say 'thanks for your time' and move on. Because I don't have time to deal with closed minded A-holes. And because I love my son.