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.
Monday, March 3, 2014
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.
Monday, January 20, 2014
Finding Gratitude in Bad Days
Well, not overall bad. Just bad news. Not the end of the world, but it's tough to swallow.
We have paid a lot of money out of pocket for Buzzy's therapies. Over $2000 in the last 9 months. So, to find out today we owe at least $930 more is a very tough pill to swallow. And then there is still the weekly bills from preschool we will be paying as well (add another $350 on top of that). Plus the co-pays for his therapies - $90 weekly for social skills, speech, and OT. If ABA has a co-pay as well (which I suspect it might) that's now another $150. A week.
Typing it out is making it worse.
However, it is only money. My son is here with us and healthy (and getting healthier every day) and happy. Avonte Oquendo's family can't say the same. Avonte is a 14 year old boy with autism that disappeared from his school in October, and it looks as his body has been found based on the clothing on it. His picture has been on Facebook and I have followed his story, praying for a positive resolution. Such a sad, sad case.
So, it really is only money.
We have paid a lot of money out of pocket for Buzzy's therapies. Over $2000 in the last 9 months. So, to find out today we owe at least $930 more is a very tough pill to swallow. And then there is still the weekly bills from preschool we will be paying as well (add another $350 on top of that). Plus the co-pays for his therapies - $90 weekly for social skills, speech, and OT. If ABA has a co-pay as well (which I suspect it might) that's now another $150. A week.
Typing it out is making it worse.
However, it is only money. My son is here with us and healthy (and getting healthier every day) and happy. Avonte Oquendo's family can't say the same. Avonte is a 14 year old boy with autism that disappeared from his school in October, and it looks as his body has been found based on the clothing on it. His picture has been on Facebook and I have followed his story, praying for a positive resolution. Such a sad, sad case.
So, it really is only money.
Saturday, January 11, 2014
The Spiritual Side
I am really excited about a few things today. Well, one of them is on-going, but whatever. It's all exciting.
First off, it's my birthday. And the baby was singing happy birthday to me! She said "happy birthday to mom happy birthday to mom". It was the cutest thing ever and just about made me melt. This is the same baby who didn't have even one word not that long ago. I am just so excited for all of the progress she's been making.
I also started taking a class from Tami. It's about energy healing and working with "awesome kids" which is what she calls kids with autism. It's about a month long, and I have to say even after only 3 days, it's been so helpful and wonderful. I also have an appointment with her tonight, and I am excited to talk about the muscle testing I have been doing and seeing if I am doing okay with it.
I have started meditation as well, and I think that is helping, too. I also am going to be taking a Reiki I class in February. I have so many plans for improving myself and helping my family heal. I am glad to have found this new path and new direction to take with my family.
------------------
Well, it's now Saturday, and I started this post on Wednesday. Oops! Anyway...
I have noticed so many positive changes in myself since I have started all of this. I used to yell. A lot. And swear. A lot. I had a short fuse. And was short on patience. I am working on all of those aspects with the help of some intentions I set during this course and with the meditation. I firmly believe now that further healing for everyone has to start with me. I was so hyper-focused on Buzzy, that the baby and everyone else sort of fell to the wayside. I am now trying to make sure everyone is being cared for.
Obviously, I am (as we all are) a work in progress. I am not perfect. I will never be, but I am happier with who I am as a person now. And as we are going through this journey, I have noticed more energy and I even have started to sing along again to the radio, which is something I used to love to do, but hadn't felt like it in a long time.
I can't wait to see what the next week brings to us!
First off, it's my birthday. And the baby was singing happy birthday to me! She said "happy birthday to mom happy birthday to mom". It was the cutest thing ever and just about made me melt. This is the same baby who didn't have even one word not that long ago. I am just so excited for all of the progress she's been making.
I also started taking a class from Tami. It's about energy healing and working with "awesome kids" which is what she calls kids with autism. It's about a month long, and I have to say even after only 3 days, it's been so helpful and wonderful. I also have an appointment with her tonight, and I am excited to talk about the muscle testing I have been doing and seeing if I am doing okay with it.
I have started meditation as well, and I think that is helping, too. I also am going to be taking a Reiki I class in February. I have so many plans for improving myself and helping my family heal. I am glad to have found this new path and new direction to take with my family.
------------------
Well, it's now Saturday, and I started this post on Wednesday. Oops! Anyway...
I have noticed so many positive changes in myself since I have started all of this. I used to yell. A lot. And swear. A lot. I had a short fuse. And was short on patience. I am working on all of those aspects with the help of some intentions I set during this course and with the meditation. I firmly believe now that further healing for everyone has to start with me. I was so hyper-focused on Buzzy, that the baby and everyone else sort of fell to the wayside. I am now trying to make sure everyone is being cared for.
Obviously, I am (as we all are) a work in progress. I am not perfect. I will never be, but I am happier with who I am as a person now. And as we are going through this journey, I have noticed more energy and I even have started to sing along again to the radio, which is something I used to love to do, but hadn't felt like it in a long time.
I can't wait to see what the next week brings to us!
Thursday, January 2, 2014
Quick Update
I just wanted to post a quick update. I am trying to minimize my time on the internet in general, which actually means I should have more time to devote to this blog. I want this as a decent record of what I've been doing, so perhaps I need to post on it more.
Here's what's going on supplement-wise: We stopped the hourly dosing (8 times a day) of worm killers. I felt it was time to stop. Call it intuition, whatever. We also were told by our energy healer (Tami) to stop the goldenseal a while back. So, we did. We have added GABA. I spoke with Tami tonight about Buzzy, and we stopped the chlorella. We kept the B-12 shots, the Barlean's fish oil, l-carnitine, and the folinic/l-methyl-folate pills. We are increasing vitamin D. And those are the only supplements he's on. Which, for a kid with autism, is like nothing. We will be adding Goleic in about a month or two. We are also doing homeopathic remedies - cinnamonum, clostridia, and borrelia. Also, we're continuing with Rudi and going through his clears. We started a clear tonight for the one dose of Zantac he took as an infant. Oh, I forgot! We're adding Lauricidin for him for detox.
Buzzy is continuing to do well. He has more speech and is more verbal at school. He's been off school for the past few weeks, but will be going back on Monday. He's still had some therapy almost daily, but that's it. He's got a nasty, which I am going to be clearing up with some thyme essential oil. That didn't go well tonight, because I put on too much. I will go easy on it tomorrow night. He's been drooling more, which Tami said was due to pesticides. Which makes sense - we started letting him eat some pairs my husband bought from his FFA. Which aren't organic. Ugh.
I asked about foods to avoid with the Buzz. We got tomatoes, lard (LOL, just rendered some a few weeks ago), phenols, and pesticides.
So, we are getting more interactive play with him and he really seems to enjoy art and craft type things. (I painted with the littles a few days ago, and they really enjoyed it.) He doesn't care about vents anymore. He's day potty trained. He can take off all of his clothes. He can pull his pants and underwear up and down. He can put his shirt on. His speech is still garbled, but if he slows down his enunciation is clearer. He is starting to sing - he sings "Twinkle Twinkle Little Start" and "I'm a Little Teapot". He is starting to play pretend with things, as well. He is spontaneously giving hugs and kisses. And he really loves his baby sister.
Speaking of baby, she is continuing to make progress and do really well. We have an appointment with Tami coming up for her. Her rashes are coming back, but we started a new clear tonight (it looks like her birth is the clear) and we haven't been good about spraying her with lavender. And we need to get her to take some thyme orally, but that hasn't been working out. So, we will see what's going on with her in a few days. She is starting to play pretend as well. She likes fingerpainting. She also (as long as she is half-naked) will pee on the potty all by herself. We just need to work on having her wear undies, and then we are on our way. That and getting her to poop on the potty. I am just so happy with her progress. She really is a spitfire, and usually such a delight.
Well, it's late and I need to get to bed. That's all I've got. This time.
Here's what's going on supplement-wise: We stopped the hourly dosing (8 times a day) of worm killers. I felt it was time to stop. Call it intuition, whatever. We also were told by our energy healer (Tami) to stop the goldenseal a while back. So, we did. We have added GABA. I spoke with Tami tonight about Buzzy, and we stopped the chlorella. We kept the B-12 shots, the Barlean's fish oil, l-carnitine, and the folinic/l-methyl-folate pills. We are increasing vitamin D. And those are the only supplements he's on. Which, for a kid with autism, is like nothing. We will be adding Goleic in about a month or two. We are also doing homeopathic remedies - cinnamonum, clostridia, and borrelia. Also, we're continuing with Rudi and going through his clears. We started a clear tonight for the one dose of Zantac he took as an infant. Oh, I forgot! We're adding Lauricidin for him for detox.
Buzzy is continuing to do well. He has more speech and is more verbal at school. He's been off school for the past few weeks, but will be going back on Monday. He's still had some therapy almost daily, but that's it. He's got a nasty, which I am going to be clearing up with some thyme essential oil. That didn't go well tonight, because I put on too much. I will go easy on it tomorrow night. He's been drooling more, which Tami said was due to pesticides. Which makes sense - we started letting him eat some pairs my husband bought from his FFA. Which aren't organic. Ugh.
I asked about foods to avoid with the Buzz. We got tomatoes, lard (LOL, just rendered some a few weeks ago), phenols, and pesticides.
So, we are getting more interactive play with him and he really seems to enjoy art and craft type things. (I painted with the littles a few days ago, and they really enjoyed it.) He doesn't care about vents anymore. He's day potty trained. He can take off all of his clothes. He can pull his pants and underwear up and down. He can put his shirt on. His speech is still garbled, but if he slows down his enunciation is clearer. He is starting to sing - he sings "Twinkle Twinkle Little Start" and "I'm a Little Teapot". He is starting to play pretend with things, as well. He is spontaneously giving hugs and kisses. And he really loves his baby sister.
Speaking of baby, she is continuing to make progress and do really well. We have an appointment with Tami coming up for her. Her rashes are coming back, but we started a new clear tonight (it looks like her birth is the clear) and we haven't been good about spraying her with lavender. And we need to get her to take some thyme orally, but that hasn't been working out. So, we will see what's going on with her in a few days. She is starting to play pretend as well. She likes fingerpainting. She also (as long as she is half-naked) will pee on the potty all by herself. We just need to work on having her wear undies, and then we are on our way. That and getting her to poop on the potty. I am just so happy with her progress. She really is a spitfire, and usually such a delight.
Well, it's late and I need to get to bed. That's all I've got. This time.
Wednesday, December 4, 2013
Dodging a Bullet
I am not terribly sure anyone reads, this...so all the better for my crazy update. [First off - I believe in our energy healer. I am not going to offer caveats any longer like "I know this sounds crazy" and "I know some of this sounds weird..." It is what it is. I believe in it - I believe in her. I feel she has an amazing gift, and I am thrilled to know her and have her working to help my kids.]
I am reasonably sure I mentioned we started seeing an "energy healer" to help us guide our interventions.
Yesterday, I had an appointment (our first one) for the baby. Who will be 2 on Valentine's Day, but she's still my baby, so there.
She has a bizarre rash on her diaper region - they look like little pustules. And a spot of them that developed where she had gotten a scratch. So, those were definitely on my mind when I was talking with our healer. And her speech, in general. She's gotten so much better, but I just wanted to see what was going on.
And the things she told me left me speechless and in tears.
Our healer said the baby told her she "was supposed to have autism".
I felt my heart fall out of my chest at that moment. Everything I've suspected and feared and why I was so determined to have her see Buzzy's doctor - all of those things. THEY MATTERED. And not only that, they MADE A DIFFERENCE. All the things I've done differently - having her follow the GFCF diet, stopping her vaccinations, trying to do things differently for her...taking her to Buzzy's doctor. All of that...it made the difference.
The biggest thing - that our healer said "flipped the switch"...were the methyl B-12 shots. I knew they helped her speech. I knew they were amazing. I just didn't realize they were THAT amazing. I am so glad I tried them. They didn't really do much *wow* kind of stuff for Buzzy, but I am so glad we decided to do them. Our healer commented that our doctor was wonderful - and I am beginning to think maybe our doctor has a similar gift in terms of intuition and how to best heal kids. I see her on Monday. I am going to thank her, and I am probably going to cry. And I don't care.
Our healer also suggested some other simple things to do with the baby that will help her along. I am going to be omitting a few supplements, adding back another, and using some more essential oils.
Buzzy and I have our appointments tonight with our energy healer. I am looking forward to hearing what she has to share with us.
Oh, and that nasty rash? Parasite exit wounds. (Barf!) Spray them with lavender, and it will be all good. And, they look better already after only about 2 sprays today.
I am reasonably sure I mentioned we started seeing an "energy healer" to help us guide our interventions.
Yesterday, I had an appointment (our first one) for the baby. Who will be 2 on Valentine's Day, but she's still my baby, so there.
She has a bizarre rash on her diaper region - they look like little pustules. And a spot of them that developed where she had gotten a scratch. So, those were definitely on my mind when I was talking with our healer. And her speech, in general. She's gotten so much better, but I just wanted to see what was going on.
And the things she told me left me speechless and in tears.
Our healer said the baby told her she "was supposed to have autism".
I felt my heart fall out of my chest at that moment. Everything I've suspected and feared and why I was so determined to have her see Buzzy's doctor - all of those things. THEY MATTERED. And not only that, they MADE A DIFFERENCE. All the things I've done differently - having her follow the GFCF diet, stopping her vaccinations, trying to do things differently for her...taking her to Buzzy's doctor. All of that...it made the difference.
The biggest thing - that our healer said "flipped the switch"...were the methyl B-12 shots. I knew they helped her speech. I knew they were amazing. I just didn't realize they were THAT amazing. I am so glad I tried them. They didn't really do much *wow* kind of stuff for Buzzy, but I am so glad we decided to do them. Our healer commented that our doctor was wonderful - and I am beginning to think maybe our doctor has a similar gift in terms of intuition and how to best heal kids. I see her on Monday. I am going to thank her, and I am probably going to cry. And I don't care.
Our healer also suggested some other simple things to do with the baby that will help her along. I am going to be omitting a few supplements, adding back another, and using some more essential oils.
Buzzy and I have our appointments tonight with our energy healer. I am looking forward to hearing what she has to share with us.
Oh, and that nasty rash? Parasite exit wounds. (Barf!) Spray them with lavender, and it will be all good. And, they look better already after only about 2 sprays today.
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