Late Wednesday night (later than I had planned!) I grabbed Preston and we headed off for his MRI and his 23 hour EEG.
We drove and stayed at a hotel that was about 10 minutes away from the hospital. We decided it would be easier than me trying to drive there the morning of and freaking out on the road, which is what would have happened.
The price was right on the hotel, but the skeeve factor was off the charts. We settled in at about 11:00 pm and went to sleep.
Needless to say, I didn't sleep well. I woke up just about every hour. Anyhow, grabbing everything and checking out went pretty smoothly and we were off.
I managed to find everything okay at the hospital, and I may have even been on time. I took advantage of the free valet parking, and then it was more waiting.
Preston was given some Versed around 9:30 am and then he was wheeled off for the MRI. I waited in the waiting room and inhaled a few muffins, because I hadn't eaten breakfast (since Preston hadn't either, I thought it would be mean to try to eat in front of him or to sneak food). A couple of times someone stopped by to let me know things were going well.
And then, he was done and I got to see him in recovery. He already had his EEG leads on him. It took a while for him to wake up, and once that happened we went up to his room.
He fell back asleep and so did I. Then, Child Life Services woke us up to see if he wanted to play. Umm, no. Later, when I wanted their help, they were gone for the day.
He drank some OJ and ate some chicken nuggets and promptly threw up. The nurse took her sweet time in helping, so he was already all clean by the time she showed up. Fortunately, I had caught much of it in the fun puke bucket. He then promptly ate a muffin and drank some water.
It got a little rough at 7:00 pm, because he was very energetic and it was hard to follow him around with the leads and everything. By 8:00 I was exhausted and he was getting his second wind. I turned down the lights by 8:45 and prayed he'd sleep. Not quite. He finally fell asleep at 10:45, and I was asleep soon after. He had a very restless sleep, and was tossing and turning and I had to keep getting up to fix his leads so he didn't get tangled in them.
He woke up at 5:45. Nooooo! He did fall back asleep, except he knocked a few leads loose, so someone came in to fix them. So, he then was up and that was it.
After breakfast we had Child Life come in and play with him while I showered. He did very well with them and had lots of fun playing.
Then, it was about another hour of trying to keep him entertained till it was time to take the leads off. He was very uncomfortable and kept scratching at two of the leads.
Then, they came in and did some fun things with a stroke light and a pinwheel. And then the leads were removed. We packed up and headed for his appointment with Dr. Smith to discuss the results.
Basically, no abnormalities were found in the MRI and the EEG was good. So, there was no structural reason we shouldn't see great continued progress. He said that he didn't see why Preston wouldn't be in-line with his neurotypical peers by kindergarten. Which is what I have always said! So, it was wonderful to have a doctor's confirmation of that thought. And it was nice to think I wasn't being overly optimistic or unrealistic.
I finally feel like we can put this issue to rest. We will continue to have yearly appointments and we will keep an eye out for puberty, which is when some kids start to have seizure issues.
All in all, Preston did really well. The nurses thought he was absolutely cute and he was quite cooperative and tolerant of everything they did.
I have to say, I highly recommend Rush and St. Alexius for their seizure/epilepsy program. Their facilities looked top-notch and everyone was very pleasant to deal with. And again, I have to say how much I liked Dr. Smith. I am very happy - not just with the outcome, but the entire process.
And yay - no issues for Preston! We will keep doing what we're doing. I'm so incredibly proud of my little dude for all he goes through. I have the best son in the world.
Saturday, April 12, 2014
Tuesday, April 1, 2014
Where we are
My last post was pretty much a downer, so let's get that knocked off the top of page, and have this one get top billing.
Preston's EEG and MRI was rescheduled. I was starting to get quite anxious about it, so that was good for me and for my ulcers. Ha. Anyhow, he will have the MRI and EEG on the 10th of April, and then we will hang around there and get the results and meet with the doctor a few hours later. I think this will work better than two separate trips. So, hooray for that! It got rescheduled because of some equipment issues we were having.
I have to say, I am quite impressed with Rush and Dr. Smith. (I had his first name wrong in my prior post, so I just fixed that.) And the woman in charge of scheduling and EEG and MRI stuff (I don't have her exact title at my fingertips) is WONDERFUL. It's amazing the difference you feel when you are treated courteously and with respect and even treated just nicely in general.
We are starting the Goleic today. Deep breaths. LOL I am just nervous. It will be fine - better than fine. It will go great.
I also need to retake Preston's ATEC before we start. That's next on my list, after finishing this post.
I found my moodiness and irrational behavior was due to a heavy reaction from a homeopathic remedy I was taking. Apparently, it brought some things to surface a little too quickly. I will resume the remedy, but I want to make sure everything else is stable before that. Whew!
Preston has adjusted really well to the change in his meds. He was a little off for a few weeks, but now he is much better. In fact, we've some great improvements. He's more engaged with us at home. He plays less with the cords and the vacuums and it more attentive. He is doing great with the "regular" kids in preschool. He is also doing better in OT. We still have challenges, of course, but we are getting there. As people told me in the beginning (which I am starting to understand now!)...it's a marathon, not a sprint. As a runner, I have an appreciation of that from the physical "I'm a runner" sense, but now I know what it means from an autism sense as well. Preston didn't get sick overnight. And he won't recover overnight. But, he WILL recover.
We are moving through his clears homeopathically speaking. We are one clear away from all of the things that happened at his birth. I firmly feel we will see some great gains from clearing that trauma. I think the trigger that kicked off his issues were all the antibiotics they fed me in labor. I still feel angry about that.
But, we are moving onward and upward.
Oh, got distracted. New ATEC is 32! Woo hoo!
Preston's EEG and MRI was rescheduled. I was starting to get quite anxious about it, so that was good for me and for my ulcers. Ha. Anyhow, he will have the MRI and EEG on the 10th of April, and then we will hang around there and get the results and meet with the doctor a few hours later. I think this will work better than two separate trips. So, hooray for that! It got rescheduled because of some equipment issues we were having.
I have to say, I am quite impressed with Rush and Dr. Smith. (I had his first name wrong in my prior post, so I just fixed that.) And the woman in charge of scheduling and EEG and MRI stuff (I don't have her exact title at my fingertips) is WONDERFUL. It's amazing the difference you feel when you are treated courteously and with respect and even treated just nicely in general.
We are starting the Goleic today. Deep breaths. LOL I am just nervous. It will be fine - better than fine. It will go great.
I also need to retake Preston's ATEC before we start. That's next on my list, after finishing this post.
I found my moodiness and irrational behavior was due to a heavy reaction from a homeopathic remedy I was taking. Apparently, it brought some things to surface a little too quickly. I will resume the remedy, but I want to make sure everything else is stable before that. Whew!
Preston has adjusted really well to the change in his meds. He was a little off for a few weeks, but now he is much better. In fact, we've some great improvements. He's more engaged with us at home. He plays less with the cords and the vacuums and it more attentive. He is doing great with the "regular" kids in preschool. He is also doing better in OT. We still have challenges, of course, but we are getting there. As people told me in the beginning (which I am starting to understand now!)...it's a marathon, not a sprint. As a runner, I have an appreciation of that from the physical "I'm a runner" sense, but now I know what it means from an autism sense as well. Preston didn't get sick overnight. And he won't recover overnight. But, he WILL recover.
We are moving through his clears homeopathically speaking. We are one clear away from all of the things that happened at his birth. I firmly feel we will see some great gains from clearing that trauma. I think the trigger that kicked off his issues were all the antibiotics they fed me in labor. I still feel angry about that.
But, we are moving onward and upward.
Oh, got distracted. New ATEC is 32! Woo hoo!
Saturday, March 15, 2014
Today's thoughts
Yesterday was rough. Well, this last week was rough. I have had zero patience, and I don't know why. I am frazzled and not the mom I want to be. Not even close.
I have an appointment with Tami on Monday to try to figure out what is going on.
Our appointment went well a few Mondays ago. We added some more supplements, and upped the dosages of some of the things he's already on. And he's been a handful the last week. His sleep has also been restless, which we get to experience first-hand because he comes in to sleep with us every single night. I don't mind it usually, but when he's restless no one gets to sleep well.
I am pretty much taking today off. Everyone else can handle everything. I am going to go out for a run (which will be slow and I will suck), but at least it's above freezing. Well, not yet, but it should be. I need to clear my head and get some anger out.
I need to fill out all of Preston's paperwork for the MRI and EEG. That's coming up pretty soon, as is starting the Goleic.
We are still doing the clears and all of that. Maybe part of my issue is the clears - both Preston and I are reaching really difficult time periods in our timelines. He is getting close to clearing birth trauma and things during my pregnancy. I am clearing stuff from a while back when I was suicidal. So, it seems plausible.
Well, it's warm (compared to the Arctic) outside, and I gotta run.
I have an appointment with Tami on Monday to try to figure out what is going on.
Our appointment went well a few Mondays ago. We added some more supplements, and upped the dosages of some of the things he's already on. And he's been a handful the last week. His sleep has also been restless, which we get to experience first-hand because he comes in to sleep with us every single night. I don't mind it usually, but when he's restless no one gets to sleep well.
I am pretty much taking today off. Everyone else can handle everything. I am going to go out for a run (which will be slow and I will suck), but at least it's above freezing. Well, not yet, but it should be. I need to clear my head and get some anger out.
I need to fill out all of Preston's paperwork for the MRI and EEG. That's coming up pretty soon, as is starting the Goleic.
We are still doing the clears and all of that. Maybe part of my issue is the clears - both Preston and I are reaching really difficult time periods in our timelines. He is getting close to clearing birth trauma and things during my pregnancy. I am clearing stuff from a while back when I was suicidal. So, it seems plausible.
Well, it's warm (compared to the Arctic) outside, and I gotta run.
Not in a good place today
I can't think of any area in my life where autism hasn't robbed us of something.
Like to go out and eat? Not if you're on The GFCFSF organic diet.
Like to delight in and watch your child meet milestones? Ha ha, not with autism. You get to watch everyone else's child meet milestones, while you get to watch your own become more and delayed. More and more behind. And it crushes your soul.
Vacations? Why the fuck would you subject yourself to something like that? That also includes even day trips. When you have a child that is prone to all out running and doesn't listen to directions and has no sense of danger, even the shortest trip is fraught with misery. Grocery shopping? No.fucking.way. Unless you want to abandon your cart in the middle of the store while you try to hang onto a screaming, thrashing demon-possessed child who has the strength of 10 men, it ain't happening. And at the end of it, you still don't have your groceries.
You want more kids? If only it were as easy as that. Another child might also have autism. And...no. That's more sadness than most people can bear. I love children. I love babies especially. But, it's a hard decision and a definite risk. And it hurts so fucking much to watch other people easily contemplate having more, while they go on vacations and homeschool and raise "normal" kids. And go out to eat. And grocery shop. Or, you decide to have more. But, you can't get pregnant around December - because you have a doctor's appointment that you been waiting 14 months for. So, you need to put that off some more. And more. You know how they say there is never the perfect time? Yeah, fuck them.
Take pride in your house? No a chance. Just today a chandelier got ripped out of the ceiling because someone swung from it, after climbing on the dining room table. While I was being irresponsible and eating dinner. I am such an ass - I just wanted one meal today while sitting down.
Money? Forget that. Supplements, doctor appointments, co-pays, therapies, gas to drive to all these appointments, that takes care of any spare money and guarantees you will be charging your credit cards up as well. Spare money? Fuck NO.
Spare time? There is isn't much of that either. And if you do find some, you feel guilty because you're not researching the latest therapy and dedicating 100% of yourself to it all.
Spare time? There is isn't much of that either. And if you do find some, you feel guilty because you're not researching the latest therapy and dedicating 100% of yourself to it all.
Monday, March 3, 2014
I will never tire
This title means a lot of things to me.
What I had in mind at first, is that I will never tire of hearing my sweet baby, Gabriella talk. Today, as she held out her sippy cup she told me, "I need milk in it."
My heart melts every time she speaks. The adorable way she crinkles her nose and says, "Nooo!" (and the slightly demonic voice that accompanies it). When she says, "Go away, Buzzy". When I try to pick her nose and she tells me, "Those my bogies!". I will never get tired of hearing her speak, watching her develop, and watching her grow - as she should. As all children should.
But some kids don't get that chance. How sweet it feels with Gabriella, it is sometimes equally as bitter to watch Preston struggle.
Our neurologist appointment went well. He *listened* to us. He didn't criticize what we were doing. He told us we were doing a good job (which felt good). There was also a medical student in there as well. It was good for him to see real patients who were trying "alternative" treatments and having success in treating autism. All in all, it was a wonderful appointment. Our plan is in a few weeks we are going to get a sedated MRI done up north, followed by a 23 hour EEG. Which includes sleep. Which this doctor said was VERY IMPORTANT.
Did you hear that Dr. Rothman? And the crappy doctors/nurses at OSF Peoria? Autism IS reason enough to warrant this. And, puberty is another time we have to watch out for, because kids that weren't having seizures before, might start getting them at that point. Thank God for GOOD doctors. And Dr. Michael Smith at Rush in Chicago is one of them.
Which brings me to the other meaning of this post's title.
I will never tire of trying to find ways to improve Preston's life. To help him be the best he can be. To help his with his medical issues. Not to "change" him. Not to "fix" him, but to help him be happy and healthy. And there are some days when I am tired and I need a mental break. And I do that. And then when I am ready, I jump right back in the ring and start swinging. For all of the hard work Preston does every day at school and his therapies, I owe him that much.
What I had in mind at first, is that I will never tire of hearing my sweet baby, Gabriella talk. Today, as she held out her sippy cup she told me, "I need milk in it."
My heart melts every time she speaks. The adorable way she crinkles her nose and says, "Nooo!" (and the slightly demonic voice that accompanies it). When she says, "Go away, Buzzy". When I try to pick her nose and she tells me, "Those my bogies!". I will never get tired of hearing her speak, watching her develop, and watching her grow - as she should. As all children should.
But some kids don't get that chance. How sweet it feels with Gabriella, it is sometimes equally as bitter to watch Preston struggle.
Our neurologist appointment went well. He *listened* to us. He didn't criticize what we were doing. He told us we were doing a good job (which felt good). There was also a medical student in there as well. It was good for him to see real patients who were trying "alternative" treatments and having success in treating autism. All in all, it was a wonderful appointment. Our plan is in a few weeks we are going to get a sedated MRI done up north, followed by a 23 hour EEG. Which includes sleep. Which this doctor said was VERY IMPORTANT.
Did you hear that Dr. Rothman? And the crappy doctors/nurses at OSF Peoria? Autism IS reason enough to warrant this. And, puberty is another time we have to watch out for, because kids that weren't having seizures before, might start getting them at that point. Thank God for GOOD doctors. And Dr. Michael Smith at Rush in Chicago is one of them.
Which brings me to the other meaning of this post's title.
I will never tire of trying to find ways to improve Preston's life. To help him be the best he can be. To help his with his medical issues. Not to "change" him. Not to "fix" him, but to help him be happy and healthy. And there are some days when I am tired and I need a mental break. And I do that. And then when I am ready, I jump right back in the ring and start swinging. For all of the hard work Preston does every day at school and his therapies, I owe him that much.
Wednesday, February 12, 2014
Reaching Out
Just a quick Wednesday update on what we are up to...
Buzzy still has this rash that seems to be yeasty in appearance. We are treating it with oral thyme drops. He is still on Lauricidin, GABA, l-methylfolate, folinic acid, l-carnitine, his probiotics, fish oil, methyl B-12 shots, and homeopathy remedies. (Candida remedy is a huge one for him - without it he gets the red ring of fun around his anus. Good times.) I also added the kids NDF Focus, because it something he tested well for. We are going to be adding NAC (n-acetyl-carnitine), but I need to test to see how it does with his other supplements. I think I am going to have to cut out some of the other things to add that one in.
When I look at all of those typed up, it seems like a lot of supplements. But, for kids with autism doing biomed, it's actually pretty manageable. And he's been doing great on them.
We are looking at an April start date for the Goleic. I am excited.
No word on the service dog. Keep thinking positive thoughts. I went and looked at the current ones training, and there was one that just caught my attention. I think he is meant to be Buzzy's dog. I will keep being positive and patient.
On Monday we have our appointment with the neurologist. Positive thoughts, intentions, and prayers for that one as well!
Early March we have an appointment with his MAPS doctor. I am looking forward to seeing where we go from here. Because there is always somewhere to go!
And - irony - after years of dealing with horrible poop from Buzzy - I think he's moved to the other end of the spectrum - he seems to be a little constipated. Yes, irony.
I also applied to be a TACA mentor. I am very excited for this step. I feel I can really help people and look forward to working with families around here. I am planning for the future to start a TACA chapter around here - because one is sorely needed.
I will try to update after the neurologist. All I know is that we will keep doing what we are doing.
Buzzy still has this rash that seems to be yeasty in appearance. We are treating it with oral thyme drops. He is still on Lauricidin, GABA, l-methylfolate, folinic acid, l-carnitine, his probiotics, fish oil, methyl B-12 shots, and homeopathy remedies. (Candida remedy is a huge one for him - without it he gets the red ring of fun around his anus. Good times.) I also added the kids NDF Focus, because it something he tested well for. We are going to be adding NAC (n-acetyl-carnitine), but I need to test to see how it does with his other supplements. I think I am going to have to cut out some of the other things to add that one in.
When I look at all of those typed up, it seems like a lot of supplements. But, for kids with autism doing biomed, it's actually pretty manageable. And he's been doing great on them.
We are looking at an April start date for the Goleic. I am excited.
No word on the service dog. Keep thinking positive thoughts. I went and looked at the current ones training, and there was one that just caught my attention. I think he is meant to be Buzzy's dog. I will keep being positive and patient.
On Monday we have our appointment with the neurologist. Positive thoughts, intentions, and prayers for that one as well!
Early March we have an appointment with his MAPS doctor. I am looking forward to seeing where we go from here. Because there is always somewhere to go!
And - irony - after years of dealing with horrible poop from Buzzy - I think he's moved to the other end of the spectrum - he seems to be a little constipated. Yes, irony.
I also applied to be a TACA mentor. I am very excited for this step. I feel I can really help people and look forward to working with families around here. I am planning for the future to start a TACA chapter around here - because one is sorely needed.
I will try to update after the neurologist. All I know is that we will keep doing what we are doing.
Thursday, February 6, 2014
Ants in the pants
So, Buzzy has been on a tear lately. It completely reminds me of life a year ago. He is back to pushing chairs up the table and getting on the table and standing on it. He's getting into cabinets. He's opening the fridge. He's getting the baby to do all of the same things, and it's starting to drive me nuts. I am getting very frustrated. It feels like "the bad old days". The constant motion and getting into everything is wearing on my patience, and I have been doing more yelling and swearing lately than I'd like.
I am still working on my class with Tami. In fact, I am apparently supposed to work on Preston to clear this frenzied energy from him.
We ordered the Goleic. It should be here next week. I am expecting really wonderful things from it. I am also nervous as hell about it. Something as expensive as it is tends to do that. So, I am only going to think positive things about it, and everything will go well. And we will see great gains. There. The end. LOL
The baby continues to do well. I am going to be calling and scheduling her 2 year appointment with EI. The difference between how she is doing now and how she was doing just a few months ago is amazing.
Now all I need is for the weather to warm up so I can take kids outside to enjoy themselves. I am so done with winter, snow, and COLD.
I am still working on my class with Tami. In fact, I am apparently supposed to work on Preston to clear this frenzied energy from him.
We ordered the Goleic. It should be here next week. I am expecting really wonderful things from it. I am also nervous as hell about it. Something as expensive as it is tends to do that. So, I am only going to think positive things about it, and everything will go well. And we will see great gains. There. The end. LOL
The baby continues to do well. I am going to be calling and scheduling her 2 year appointment with EI. The difference between how she is doing now and how she was doing just a few months ago is amazing.
Now all I need is for the weather to warm up so I can take kids outside to enjoy themselves. I am so done with winter, snow, and COLD.
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