Instead of a "report card", Holden receives an IEP update every 9 weeks. Here it is, in a nutshell:
Goal: Holden will master the skills needed to effectively communicate.
Comments: Holden can independently mand for juice, movie, cookie, raisin, bubbles and beads using sign language and vocal approximation. We require him to sign because his vocal approximations are not clear enough for his teacher to understand what he is asking for. His prompted mands are chips, candy, pins, beads, fish and cake. He has mastered "mama" from the Kaufman Speech Praxis and is working on 3 more words. He is also working on increasing his vocal approximations of mands "movie", "candy", "cookie", and "juice". He is a star at motor imitation having mastered 9 objectives this nine weeks.
Goal: Holden will improve fine and/or gross motor skills.
Comments: Holden has done exceptionally well climbing up and down the step stool to wash his hands and rinse his toothbrush. He is already learning now to pinch the clothespins to get them on the cup and should master this objective in the next nine weeks. Holden can string 5 beads on a string and we will now work on stringing smaller beads on thinner string.
Goal: Holden will improve cognitive skills.
Comments: Holden is very compliant now, he occasionally will tantrum when asked to sit down or blocked from doing his "stimmy circles", but that is no more than 2-3 times a week. Holden has mastered matching 3 items in a field of 3 and is working on several more objectives. Holden responds appropriately when told to "come here", "get a chair", "put away your toy", and "line up at the door" with minimal prompting.
Goal: Holden will improve personal-social skills.
Comments: Holden sits for the entire circle time with minimal reinforcement and participates in at least 50% of the songs and fingerplays. He sits at the table and tolerates playing alongside the other students. He will occasionally become interested in a toy another child is playing with and touch it or move it, but if offered his own toy, will not tantrum to get it.
Goal: Holden will improve daily living skills.
Comments: Holden has made great progress with the backpack routine. He comes in the room, takes his backpack off, attempts to hang it on the hook (he is offered little assistance), unzips with help and then takes out his lunch box and walks it over to the shelf where it goes. Will will start potty training the next 9 weeks.
1.20.2009
a little less suck-age
I had an appointment with our DAN last week regarding Holden. We went over his OAT, bloodwork, and French test. The OAT showed very high markers for yeast (surprise, surprise). His French test showed elevated levels of Mercury and Lead (again, surprise, surprise). His bloodwork showed low zinc, normal liver function, and something else very interesting to me...he's NOT protected against Polio. Hello vaccines!! He was vaccinated against Polio, but apparently it did no good.
Seeing the test results, I just don't understand how people can dismiss the biomedical treatment for autism. How much more scientific evidence do you need that our kids systems are off? More so than typical children? Doesn't that mean anything to the medical community?? I don't get it.
Anyway, off my soap box. Our next plan of action is to start Zinc (1 cap per day, 20 mg), Therabiotic Complete (probiotic), and Nizoral. He's been on the Nizoral for 1 week now and there's definitely a difference. He's happier, doesn't seem to be "hurting", and his eye contact and socialization has increased. We started Zinc just yesterday, so nothing to report yet on that...as well as the new probiotic. I'll do the challenge test in the next few days. Then, 2 weeks later, we're to do an EDTA + DMSA challenge test. Our next appointment is February 23rd, where we'll discuss the challenge results and determine which chelation agent to use and how it will be administered. I'm hoping for at least twice monthly IV's, at least. The other 2 weeks, we will use suppositories.
Honestly though, it all depends on the costs of each. We want the most effective, obviously, but we have to choose the most effective that we're able to afford. I'm VERY anxious to start chelating on a regular basis though. He will be 4 in April and I have such high hopes for him by his 5th birthday. I've heard chelation takes anywhere from 12-18 months to be most effective.
On another note, Zoe and Jackson are doing great. Zoe amazes me everyday with all she's learning and the words that come out of her mouth! Good and bad. Jackson is 17 and a half months and seems to be developing completely normal thus far. He's pointing to pictures, labeling, very social, great eye contact, talking, talking, and more talking. I'm hopeful that he will be spared any developmental delays. In the meantime, we will continue to NOT vaccinate him.
More later!
Seeing the test results, I just don't understand how people can dismiss the biomedical treatment for autism. How much more scientific evidence do you need that our kids systems are off? More so than typical children? Doesn't that mean anything to the medical community?? I don't get it.
Anyway, off my soap box. Our next plan of action is to start Zinc (1 cap per day, 20 mg), Therabiotic Complete (probiotic), and Nizoral. He's been on the Nizoral for 1 week now and there's definitely a difference. He's happier, doesn't seem to be "hurting", and his eye contact and socialization has increased. We started Zinc just yesterday, so nothing to report yet on that...as well as the new probiotic. I'll do the challenge test in the next few days. Then, 2 weeks later, we're to do an EDTA + DMSA challenge test. Our next appointment is February 23rd, where we'll discuss the challenge results and determine which chelation agent to use and how it will be administered. I'm hoping for at least twice monthly IV's, at least. The other 2 weeks, we will use suppositories.
Honestly though, it all depends on the costs of each. We want the most effective, obviously, but we have to choose the most effective that we're able to afford. I'm VERY anxious to start chelating on a regular basis though. He will be 4 in April and I have such high hopes for him by his 5th birthday. I've heard chelation takes anywhere from 12-18 months to be most effective.
On another note, Zoe and Jackson are doing great. Zoe amazes me everyday with all she's learning and the words that come out of her mouth! Good and bad. Jackson is 17 and a half months and seems to be developing completely normal thus far. He's pointing to pictures, labeling, very social, great eye contact, talking, talking, and more talking. I'm hopeful that he will be spared any developmental delays. In the meantime, we will continue to NOT vaccinate him.
More later!
1.12.2009
today sucks
I try pretty hard to get around the self-pity stuff when it comes to Holden and autism. For the most part, I'm motivated, dedicated, and optimistic for his recovery. Every once in a while, there are days when things don't seem to be going right. I think this process has really taught me to be "in-tune" with him...what he's feeling, if he's hurting, happy, etc. And today, my gut tells me that something's just not right with him. He's been off anti-fungals, probiotics, and MB12 shots for almost 2 weeks now. It's really taking a toll on him, I can tell. He's not sleeping. He's crying, as if he's hurting. He's holding his stomach. And I know that if he could just TELL me how he feels, he would tell me that he's a mess inside.
I have an appointment with our DAN today at 4:30. I have to get him back on track. I need my boy back.
I have an appointment with our DAN today at 4:30. I have to get him back on track. I need my boy back.
1.07.2009
New Year
Happy New Year! Late, I know, but I haven't had much time to post any updates.
My mom was here for 2 days over the holidays. I can't tell you how much help it was to have her around. And of course, the kids loved it.
Holden's been going through a "rough patch" I guess you could say. He ran out of his anti-fungal (Sporonox - which I think was making him worse anyway!), and we also ran out of our probiotics (bifido-complex). We had an appointment with our DAN scheduled for December 29th, so I decided to wait until the appointment to discuss possibly changing his anti-fungal and to find out if we needed to start something for clostridia. His OAT test, French test, and bloodwork are all back, so I assumed we would be making some changes based on the results. Well, they had to reschedule our appointment to January 12th. And I haven't been able to reach the doctor since before Christmas...so he's had some rough days. I'm assuming the kid has yeast like crazy now, being off anti-fungals all together for a few weeks. His tantrums have been horrible, he's had trouble falling asleep (not like him), he's stimming like crazy. He has gotten a little better over the past 3 days or so. I started him on S Boulardii from Whole Foods last Friday. I don't know if it's making a difference. Maybe. His behavior seems better and he seems happier overall. He's sleeping a little better. Hopefully next week, after his appointment, we can start him on a new anti-fungal, and whatever else he needs. I also hope to start ongoing chelation treatments again. Not sure yet if we'll do IVs or suppositories (again). I would like to do IVs, but it's so traumatic for him, and I need to see what our insurance will pay. This is all soooo expensive, it's tough. But much needed.
Zoe's good. 9, going on 16. I'm just waiting for her to hate me everyday, instead of just every other day.
Jackson's developing normally, or so it seems thus far. He loved Christmas, and all the lights. He's talking up a storm, and I love it! Hate the screaming, but love the talking and laughing and interacting with us.
Here are a few pictures from December. Holden LOVES the camera now.
My mom was here for 2 days over the holidays. I can't tell you how much help it was to have her around. And of course, the kids loved it.
Holden's been going through a "rough patch" I guess you could say. He ran out of his anti-fungal (Sporonox - which I think was making him worse anyway!), and we also ran out of our probiotics (bifido-complex). We had an appointment with our DAN scheduled for December 29th, so I decided to wait until the appointment to discuss possibly changing his anti-fungal and to find out if we needed to start something for clostridia. His OAT test, French test, and bloodwork are all back, so I assumed we would be making some changes based on the results. Well, they had to reschedule our appointment to January 12th. And I haven't been able to reach the doctor since before Christmas...so he's had some rough days. I'm assuming the kid has yeast like crazy now, being off anti-fungals all together for a few weeks. His tantrums have been horrible, he's had trouble falling asleep (not like him), he's stimming like crazy. He has gotten a little better over the past 3 days or so. I started him on S Boulardii from Whole Foods last Friday. I don't know if it's making a difference. Maybe. His behavior seems better and he seems happier overall. He's sleeping a little better. Hopefully next week, after his appointment, we can start him on a new anti-fungal, and whatever else he needs. I also hope to start ongoing chelation treatments again. Not sure yet if we'll do IVs or suppositories (again). I would like to do IVs, but it's so traumatic for him, and I need to see what our insurance will pay. This is all soooo expensive, it's tough. But much needed.
Zoe's good. 9, going on 16. I'm just waiting for her to hate me everyday, instead of just every other day.
Jackson's developing normally, or so it seems thus far. He loved Christmas, and all the lights. He's talking up a storm, and I love it! Hate the screaming, but love the talking and laughing and interacting with us.
Here are a few pictures from December. Holden LOVES the camera now.
12.12.2008
"kooooool"
That's Holden-speak for "school". When we turn down the road that his school is on, I always ask him "are you ready to go to school?" So this morning, in the same place I usually ask - he beat me to it. He said "koooooool", and smiled. Spontaneous!
When we dropped of Zoe at "kooool", he said "bye-bye sissy".
Our next DAN appointment is December 29th. My mom will be in town, so that'll be nice to have her there with me. We'll discuss his latest blood test results, OAT results, and French test results. Then we'll decide on which chelation we need to use and if it will be suppositories or IVs. I'm leaning towards IVs, but we'll see what Dr. Rao thinks.
He's been doing okay, however, I'm beginning to think that the Sporonox he's taking for yeast is bothering him (in a negative way). I only give it every other day now, and it seems that on the days he gets it - in the evenings - he's VERY stimmy and very grumpy. More prone to tantrums and stims. I'm considering taking him off all together, but would like the OAT results before I do that; so that we don't have to go through another major die-off phase.
He loves: being tickled by daddy, his sister's keyboard, and the Christmas lights.
He hates: his little brother taking things from him, us stopping his stims, and not getting what he wants (pretty typical huh?!).
More later.
When we dropped of Zoe at "kooool", he said "bye-bye sissy".
Our next DAN appointment is December 29th. My mom will be in town, so that'll be nice to have her there with me. We'll discuss his latest blood test results, OAT results, and French test results. Then we'll decide on which chelation we need to use and if it will be suppositories or IVs. I'm leaning towards IVs, but we'll see what Dr. Rao thinks.
He's been doing okay, however, I'm beginning to think that the Sporonox he's taking for yeast is bothering him (in a negative way). I only give it every other day now, and it seems that on the days he gets it - in the evenings - he's VERY stimmy and very grumpy. More prone to tantrums and stims. I'm considering taking him off all together, but would like the OAT results before I do that; so that we don't have to go through another major die-off phase.
He loves: being tickled by daddy, his sister's keyboard, and the Christmas lights.
He hates: his little brother taking things from him, us stopping his stims, and not getting what he wants (pretty typical huh?!).
More later.
12.05.2008
DTaP
I haven't had time to post much lately, but will update this weekend on Holden's progress. Things are good though for the most part. Moving along, slowly but surely.
Also, we received his French test back, but am waiting on someone to tell me what the hell it all means.
I had to post this though about the DTaP vaccine. This is straight from the CDC and Department of Defense:
http://www.vhcinfo.org/subpage.asp?page=vaccines/vaccine_dtap
So, yeah. Wow, finally they're admitting that autism is an "adverse event" from this vaccine. What do you know?! We're not all crazy!!!!!
Also, we received his French test back, but am waiting on someone to tell me what the hell it all means.
I had to post this though about the DTaP vaccine. This is straight from the CDC and Department of Defense:
http://www.vhcinfo.org/subpage.asp?page=vaccines/vaccine_dtap
So, yeah. Wow, finally they're admitting that autism is an "adverse event" from this vaccine. What do you know?! We're not all crazy!!!!!
11.21.2008
I think I love Holden's School
But, I'm afraid to say it out loud for fear of jinxing it!!!
For the past few days, when he's done with dinner, he's been bringing me his plate. The first time he did it, I said "Oh, you're all done?" and he handed it to me. Then, the 2nd time, I realized there was something to this. So, for 4 days in a row, he's brought me his plate when he's finished with his dinner. He will LOOK at me and say "done". It's not that clear, obviously. But I know what he's saying.
His teacher told me tonight that they make him pick up his plate after lunch and throw things in the trash. He has to pick up after himself and put his things away. So, he's learning, AND generalizing things to the home environment.
When I picked him up from school today - they told me the school had a pep ralley for the Dallas Cowboys at the end of the day. She said it was very loud, kids screaming, singing, etc. I asked how he did with that and she said he was great! That he loved it. He sat on their lap and smiled through the whole thing.
After school today, he was soooo social. He watched the Wiggles and sang with them. He danced and jumped up and down and made animal sounds when they did. He smiles and just looked happy. He kept coming up to me and saying "hiiiiiiii!", and he would look me in the eye and smile and wait for me to say "hiiiii!" back.
Today. Was an awesome day. I do have to add that I started MB12 shots again last night. He had been off of them for a few weeks. I have no idea if it has anything to do with it...but, I have to make notes of anything we do differently. Any changes we make. We've also been on Culturelle for about a month now. And this may be too much info, but he's had normal poops for an entire month!!
I can only pray that this will continue...
For the past few days, when he's done with dinner, he's been bringing me his plate. The first time he did it, I said "Oh, you're all done?" and he handed it to me. Then, the 2nd time, I realized there was something to this. So, for 4 days in a row, he's brought me his plate when he's finished with his dinner. He will LOOK at me and say "done". It's not that clear, obviously. But I know what he's saying.
His teacher told me tonight that they make him pick up his plate after lunch and throw things in the trash. He has to pick up after himself and put his things away. So, he's learning, AND generalizing things to the home environment.
When I picked him up from school today - they told me the school had a pep ralley for the Dallas Cowboys at the end of the day. She said it was very loud, kids screaming, singing, etc. I asked how he did with that and she said he was great! That he loved it. He sat on their lap and smiled through the whole thing.
After school today, he was soooo social. He watched the Wiggles and sang with them. He danced and jumped up and down and made animal sounds when they did. He smiles and just looked happy. He kept coming up to me and saying "hiiiiiiii!", and he would look me in the eye and smile and wait for me to say "hiiiii!" back.
Today. Was an awesome day. I do have to add that I started MB12 shots again last night. He had been off of them for a few weeks. I have no idea if it has anything to do with it...but, I have to make notes of anything we do differently. Any changes we make. We've also been on Culturelle for about a month now. And this may be too much info, but he's had normal poops for an entire month!!
I can only pray that this will continue...
10.29.2008
Doctor Visit
Today, Holden saw Dr. Rao for the first time. I spoke to the doctor last week about Holden's case, and today was his first visit. Aside from having to wait F-O-R-E-V-E-R, it went well. We discussed continuing chelation but are going to wait until we receive the lab results back. They did bloodwork today, and also an IV push of glutathione, NAC, and Vit C. He tolerated it really well - I was so proud of him! He cried, but once she got the needle in, he just sat and watched and ate his cookies. I have to send off an OAT test to check for yeast, a Neurotransmitter test, and the French test. Our next appointment is the 1st week of December. We'll discuss the results of everything and start chelating again. I'm anxious to get started again. We just finished another 2 months using EDTA suppositories about 2 weeks ago. I can always tell a difference in his attention, focus, eye contact, etc...when we're chelating. Then we stop, and it seems to all go away again. It's like the universe is playing some sick game with us. But, I know in time - we'll have him back to STAY.
He's also doing well in school. They call him their little "miracle 3 year old", and his teacher says he's doing great so far. He has some tantrums when made to sit at the table and "work", but he gets over it. Yesterday, I picked him up and he had on a cute t-shirt (that was too big) over his clothes that said "Fun Run". She said they had an event and he participated. He had a little certificate in his backpack folder that said he completed 4 laps. I asked her if he really ran and she said yes, that he had a blast running around with them. How cute is that?!
So, Dr. Rao asked me to keep a log over the next 2 weeks. Just write things down I notice since the IV today. We may need to do it every 2 weeks if he does really well with it.
More later....
He's also doing well in school. They call him their little "miracle 3 year old", and his teacher says he's doing great so far. He has some tantrums when made to sit at the table and "work", but he gets over it. Yesterday, I picked him up and he had on a cute t-shirt (that was too big) over his clothes that said "Fun Run". She said they had an event and he participated. He had a little certificate in his backpack folder that said he completed 4 laps. I asked her if he really ran and she said yes, that he had a blast running around with them. How cute is that?!
So, Dr. Rao asked me to keep a log over the next 2 weeks. Just write things down I notice since the IV today. We may need to do it every 2 weeks if he does really well with it.
More later....
10.12.2008
in like flynn
FINALLY. We have a house. We've been living with my brother-in-law, his wife, and their 6 month old for 2 months. And the house we lived in ... not so big. So, yeah, 4 adults and 4 kids, enough to drive you nutty! We found a place about 5 miles away and moved in this weekend. We don't have furniture yet, as we sold every thing we had before we left Florida. I found a couch on craigslist for $75, sleeper sofa. For now, it's me, Zoe and Jackson on the sleeper sofa. Dietrich and Holden in the bedroom on a cot-like pad on the floor. It sucks, yo. But, not near as much as it sucked trying to live in someone else's house with kids!
Holden's doing great in school. The first week, he cried every day when I dropped him off. Then by the weekend, he became "himself" again. Then on Monday, he cried worse than ever! By Tuesday, he was saying "HI!" when we pulled into the school. Wednesday, Thursday, and Friday ... more of the same. Smiles, and walking to class with his teacher after telling me "bye-bye". I love that kid!
Although he's doing wonderful in school, and still doing great in therapy (ABA), at home he's much more withdrawn. It's hard to watch. Yet, I know that it's just the changes that's going on. He's processing a lot...too much for him. And, although he can hold it together for 8 hours M-F, and then at therapy on Saturdays from 9:30-12:30 ... any other time, he's very withdrawn and to himself. I try to tell myself that he just needs 'decompression' time, and that all of this is so new to him. He's just having a hard time processing. I hope it's better, and soon.
With all that said - tonight, he climbed up on the sleeper sofa with me. Took the wooden train he has and I started saying "chugga chugga chugga chugga chugga chugga chugga chugga ... chooooo choooo", and would tickle him. After 1 time, he climbed up next to me and said "choo choo!". So, I did it again. He loved it! I love when he engages us. It really makes all this so worth it.
Holden's doing great in school. The first week, he cried every day when I dropped him off. Then by the weekend, he became "himself" again. Then on Monday, he cried worse than ever! By Tuesday, he was saying "HI!" when we pulled into the school. Wednesday, Thursday, and Friday ... more of the same. Smiles, and walking to class with his teacher after telling me "bye-bye". I love that kid!
Although he's doing wonderful in school, and still doing great in therapy (ABA), at home he's much more withdrawn. It's hard to watch. Yet, I know that it's just the changes that's going on. He's processing a lot...too much for him. And, although he can hold it together for 8 hours M-F, and then at therapy on Saturdays from 9:30-12:30 ... any other time, he's very withdrawn and to himself. I try to tell myself that he just needs 'decompression' time, and that all of this is so new to him. He's just having a hard time processing. I hope it's better, and soon.
With all that said - tonight, he climbed up on the sleeper sofa with me. Took the wooden train he has and I started saying "chugga chugga chugga chugga chugga chugga chugga chugga ... chooooo choooo", and would tickle him. After 1 time, he climbed up next to me and said "choo choo!". So, I did it again. He loved it! I love when he engages us. It really makes all this so worth it.
10.02.2008
school
I have to take a minute and brag about Zoe, first. She got her progress report today - which is the 1/2 way mark to her 1st report card. She has 5 A's, and 1 B!! I'm SO proud of her. Grades like that after a move like we've done recently, staying with family, her sleeping on the floor in a sleeping bag for 2 months, and dealing with her little brothers in the same room! I think we can all learn from her.
Holden started school this week. Today was his 3rd day. He's been placed in a "Communication Skills" classroom with other kids with autism. There are 5 kids in the class, 1 teacher who is a behavior analyst, and 2 aides. Holden is the youngest kid in there, as they can range from pre-school up to 5th grade. Today when I picked him up she called him her "miracle" 3 year old. She said in 7 years, she's not seen a 3 year old do this well the 1st week. This is what his report for today said: Holden put large and small pegs in a pedboard, copied actions on the Wiggles video & ate 2 helpings of turkey breast at lunch. I can't really explain how good it feels to read something so .... normal.
Holden started school this week. Today was his 3rd day. He's been placed in a "Communication Skills" classroom with other kids with autism. There are 5 kids in the class, 1 teacher who is a behavior analyst, and 2 aides. Holden is the youngest kid in there, as they can range from pre-school up to 5th grade. Today when I picked him up she called him her "miracle" 3 year old. She said in 7 years, she's not seen a 3 year old do this well the 1st week. This is what his report for today said: Holden put large and small pegs in a pedboard, copied actions on the Wiggles video & ate 2 helpings of turkey breast at lunch. I can't really explain how good it feels to read something so .... normal.
9.23.2008
head, shoulders, knees and toes
Holden's finally settling in after the move. He's doing great, actually. I always hesitate to say "great", because I know by now that these "great" episodes are usually followed by a regression at some point. But, for now, I'll take it and relish in it!
He seems to be talking more. He has some spontaneous language now. He will come to me and say "joo" for juice. Or "cookie" for ... well, cookie. He will tell/ask me to "o-pen" things for him. He'll try his best to say "fly" when he wants us to "fly" him in the air. I can tell him we're going bye bye and turn off the TV and there's no tantrum. He will get his shoes (almost always independently), put them on and go to the door. He's repeating EVERYTHING he's asked to now. In therapy, and at home.
He loves loves loves to sing. I'll catch him doing the hand motions and singing Twinkle Twinkle Little Star a lot. The only thing that's really understandable is "twinkle", but I know he's singing it. I taught him Head, Shoulders, Knees and Toes last weekend. I sang it 3 times and then he started doing the motions with him. Now he'll say "head", "knees", "toes"...but he's not so good yet with "shoulders".
Body parts - he can/will now identify on command: head, nose, ear, mouth, tummy ("tum-tum" as he puts it), and toes.
When I ask him at night if he wants me to rock him to sleep, he'll look at me - smile, and say "rock".
When we pick up Zoe from school, he will smile the biggest smile and say "HI!!!" to her. She just loves this, of course.
He's bringing me things. Which may not sound all that impressive. But, he's never brought me anything...except maybe the remote. He'll bring me his juice cup and take my hand, look me in the eyes, smile, and say his version of "thank you", and hand it to me. I just smile and say Thank you! back and he'll go get a block, or toy, or whatever else he can find to bring to me. Which is great that he's enjoying the social interaction with me.
And the biggest, most impressive accomplishment over the last month...he'll now kick a soccer ball! Independently, for the most part. Dietrich's been taking him to the soccer field nearby and we used a little ABA type reinforcement to get him started. He loves to be thrown in the air...so, we would tell him to kick the ball and sometimes help him do it, and then Dietrich would pick him up and throw him hight in the air. We've faded out the reinforcer and he will just kick the ball now...and have fun doing it! This is really cool to see, since it's something we worked on a year ago and didn't get anywhere. At all.
He's discovered his reflection. In everything. Store windows, ovens, toasters, etc. etc. etc. Because he's such a visual kid, it can be pretty distracting for him. So we're working on that. The paper shredding has diminished a lot lately, but he continues to flip through the yellow pages of the phone book a lot. I just tell everyone that he's memorizing it for me so I don't have to go online and look up numbers all the time.
He seems to be talking more. He has some spontaneous language now. He will come to me and say "joo" for juice. Or "cookie" for ... well, cookie. He will tell/ask me to "o-pen" things for him. He'll try his best to say "fly" when he wants us to "fly" him in the air. I can tell him we're going bye bye and turn off the TV and there's no tantrum. He will get his shoes (almost always independently), put them on and go to the door. He's repeating EVERYTHING he's asked to now. In therapy, and at home.
He loves loves loves to sing. I'll catch him doing the hand motions and singing Twinkle Twinkle Little Star a lot. The only thing that's really understandable is "twinkle", but I know he's singing it. I taught him Head, Shoulders, Knees and Toes last weekend. I sang it 3 times and then he started doing the motions with him. Now he'll say "head", "knees", "toes"...but he's not so good yet with "shoulders".
Body parts - he can/will now identify on command: head, nose, ear, mouth, tummy ("tum-tum" as he puts it), and toes.
When I ask him at night if he wants me to rock him to sleep, he'll look at me - smile, and say "rock".
When we pick up Zoe from school, he will smile the biggest smile and say "HI!!!" to her. She just loves this, of course.
He's bringing me things. Which may not sound all that impressive. But, he's never brought me anything...except maybe the remote. He'll bring me his juice cup and take my hand, look me in the eyes, smile, and say his version of "thank you", and hand it to me. I just smile and say Thank you! back and he'll go get a block, or toy, or whatever else he can find to bring to me. Which is great that he's enjoying the social interaction with me.
And the biggest, most impressive accomplishment over the last month...he'll now kick a soccer ball! Independently, for the most part. Dietrich's been taking him to the soccer field nearby and we used a little ABA type reinforcement to get him started. He loves to be thrown in the air...so, we would tell him to kick the ball and sometimes help him do it, and then Dietrich would pick him up and throw him hight in the air. We've faded out the reinforcer and he will just kick the ball now...and have fun doing it! This is really cool to see, since it's something we worked on a year ago and didn't get anywhere. At all.
He's discovered his reflection. In everything. Store windows, ovens, toasters, etc. etc. etc. Because he's such a visual kid, it can be pretty distracting for him. So we're working on that. The paper shredding has diminished a lot lately, but he continues to flip through the yellow pages of the phone book a lot. I just tell everyone that he's memorizing it for me so I don't have to go online and look up numbers all the time.
8.15.2008
it's been a long time!
I haven't been able to post much. We moved the weekend of August 1st. We're now in Carrollton, Texas (DFW area). Staying with my brother-in-law and his family, so getting online is pretty scarce for me right now. Hoping and praying with all I have that we can get into our own place soon. But, for now, we'll deal.
Update on Holden. Last time I wrote, we had just done a challenge test. Those results showed elevated lead (again), and some mercury - although not elevated this time. We had a doctor's appointment the day we left Florida and Dr. Berger suggested that we continue with the suppositories. We are going to do another 2 month round of suppositories, then a challenge test, and we'll see where to go from there. At that point, I'm planning to start IV chelation. I knew it would be too hard to do that when we had just moved.
Speaking of the move. The first week was pure HELL for us. Holden came down with a stomach virus the night we left Florida. We drove straight through, and he puked straight through. It was horrible. Once we arrived, it just went from bad to worse for him. Although he slowly - and I mean VERY slowly started to feel better physically - he was having a really hard time with a new place. Everytime we would drive up into the driveway, he would cry. Everytime I tried to bathe him, he would cry. He cried pretty much constantly for the first week. He wanted nothing to do with us, except for when we left the room. Then he would chase us, as if he was afraid we were leaving him in a strange place. Slowly, he began to get better, and now that we've been here 2 weeks - he seems to be adjusting. No more crying. No more than usual, anyway. I'm beginning to see my happy little boy again.
The first Saturday we were here, we had to take him for bloodwork to check his levels. Most importantly, his liver function. He's on sporonox everyday, so it's important to make sure his liver is functioning as it should be. We're awaiting those results.
We also stopped the TD Glutathione cream. Instead, we moved to Glutathione suppositories. He gets one everyday. And, every other day, he's getting the EDTA as well. So, every other day, he gets 2 suppositories. Thankfully, he doesn't really fight me anymore. Poor kid. I think he just knows there's no use in fighting me on it...it's going to happen anyway. He does really well on IV Glutathione, so I'm really hoping he responds well to the suppositories too. I think he will. Last night was our 1st EDTA suppository for this 2 month run. He seems to be okay so far today. I am making sure to supplement the extra minerals, as well as the Taurine. Hopefully that will help.
We have an appointment with a place in the area called The Woodall Foundation for Kids on Tuesday. They will do a Speech eval, as well as an ABA eval. He'll be receiving services through them, but I'm not sure how many hours quite yet. We got his discharge summary from Quest Kids in Orlando and it was great to read (see). Here's an excerpt:
During his time at Quest, Holden acquired an abundant amount of new language and gained numerous age-appropriate skills. his vocal repertoire developed from babbling to and 3 to 4 one-syllable letter sounds to 2 to 3 syllable word approximations and nearly 20 letter sounds and combinations. he acquired several new mands, vocally as well as with manual signs. Holden also learned new gross motor imitations including clapping hands, stomping feed, and holding his arms out in various positions. Holden acquired the receptive identification of several body parts, and correct responses to some intraverbals including animal sound sand appropriate vocals for play. The most notable amount of improvement was made in the area of object imitation. Over the last eight months Holden's rate of acquisition also showed tremendous progress. He went from acquiring approximately 7 new skills each month to nearly 12 per month. Holden is a very bright little boy who made magnificent progress in a very short amount of time.
So, it felt great to read that and realize that I'm not crazy. My son is improving. It may be slowly, but we knew there was no quick-fix when we started this journey.
More later!
Update on Holden. Last time I wrote, we had just done a challenge test. Those results showed elevated lead (again), and some mercury - although not elevated this time. We had a doctor's appointment the day we left Florida and Dr. Berger suggested that we continue with the suppositories. We are going to do another 2 month round of suppositories, then a challenge test, and we'll see where to go from there. At that point, I'm planning to start IV chelation. I knew it would be too hard to do that when we had just moved.
Speaking of the move. The first week was pure HELL for us. Holden came down with a stomach virus the night we left Florida. We drove straight through, and he puked straight through. It was horrible. Once we arrived, it just went from bad to worse for him. Although he slowly - and I mean VERY slowly started to feel better physically - he was having a really hard time with a new place. Everytime we would drive up into the driveway, he would cry. Everytime I tried to bathe him, he would cry. He cried pretty much constantly for the first week. He wanted nothing to do with us, except for when we left the room. Then he would chase us, as if he was afraid we were leaving him in a strange place. Slowly, he began to get better, and now that we've been here 2 weeks - he seems to be adjusting. No more crying. No more than usual, anyway. I'm beginning to see my happy little boy again.
The first Saturday we were here, we had to take him for bloodwork to check his levels. Most importantly, his liver function. He's on sporonox everyday, so it's important to make sure his liver is functioning as it should be. We're awaiting those results.
We also stopped the TD Glutathione cream. Instead, we moved to Glutathione suppositories. He gets one everyday. And, every other day, he's getting the EDTA as well. So, every other day, he gets 2 suppositories. Thankfully, he doesn't really fight me anymore. Poor kid. I think he just knows there's no use in fighting me on it...it's going to happen anyway. He does really well on IV Glutathione, so I'm really hoping he responds well to the suppositories too. I think he will. Last night was our 1st EDTA suppository for this 2 month run. He seems to be okay so far today. I am making sure to supplement the extra minerals, as well as the Taurine. Hopefully that will help.
We have an appointment with a place in the area called The Woodall Foundation for Kids on Tuesday. They will do a Speech eval, as well as an ABA eval. He'll be receiving services through them, but I'm not sure how many hours quite yet. We got his discharge summary from Quest Kids in Orlando and it was great to read (see). Here's an excerpt:
During his time at Quest, Holden acquired an abundant amount of new language and gained numerous age-appropriate skills. his vocal repertoire developed from babbling to and 3 to 4 one-syllable letter sounds to 2 to 3 syllable word approximations and nearly 20 letter sounds and combinations. he acquired several new mands, vocally as well as with manual signs. Holden also learned new gross motor imitations including clapping hands, stomping feed, and holding his arms out in various positions. Holden acquired the receptive identification of several body parts, and correct responses to some intraverbals including animal sound sand appropriate vocals for play. The most notable amount of improvement was made in the area of object imitation. Over the last eight months Holden's rate of acquisition also showed tremendous progress. He went from acquiring approximately 7 new skills each month to nearly 12 per month. Holden is a very bright little boy who made magnificent progress in a very short amount of time.
So, it felt great to read that and realize that I'm not crazy. My son is improving. It may be slowly, but we knew there was no quick-fix when we started this journey.
More later!
7.20.2008
challenge test
We're done with the first 2 months of chelation. So, yesterday, we did a challenge test. We haven't done one of those in about 3 months. We used a 750 mg. EDTA suppository. I had forgotten how hard the challenge tests are on him. For the first 3-4 hours after I gave him the suppository, he wanted to do nothing but sleep. You could tell he just felt horrible. His little cheeks were red and flushed. He wasn't interested in anything, really. Just wanted to lay down, or be held and rocked.
BUT, about 6 hours after I gave him the suppository, he was a different kid. After dinner and bath, he danced and jumpped and ran around and smiled and hugged us. He was happy, full of dimples! He even said a 3 word sentence: "I want beebee". He would say it before, but mostly just with prompting. Last night, he said it independently - a few times.
We noticed similar behavior after he had some IV's a few months ago. It lasted for a few days after the IV's. This morning, it seems to be going back to normal. He's ripping up his paper and walking around the house, feeling the walls. His 2 favorite things to do.
You know, even if it was just for an hour or 2, it's so worth it - seeing him act like he did last night. When he does that, you can see HIM. You can tell he's in there somewhere. And if we could just get him out, we would see the real him more times than not. That's the goal...so we'll keep plugging away.
BUT, about 6 hours after I gave him the suppository, he was a different kid. After dinner and bath, he danced and jumpped and ran around and smiled and hugged us. He was happy, full of dimples! He even said a 3 word sentence: "I want beebee". He would say it before, but mostly just with prompting. Last night, he said it independently - a few times.
We noticed similar behavior after he had some IV's a few months ago. It lasted for a few days after the IV's. This morning, it seems to be going back to normal. He's ripping up his paper and walking around the house, feeling the walls. His 2 favorite things to do.
You know, even if it was just for an hour or 2, it's so worth it - seeing him act like he did last night. When he does that, you can see HIM. You can tell he's in there somewhere. And if we could just get him out, we would see the real him more times than not. That's the goal...so we'll keep plugging away.
notes from therapy
Friday's notes:
Therapist 1:
-Great job with upside "down" today. The thumbs up is still hard, but his pointing looked amazing. Object imitation was correct every time! Echoics were pretty good today. "A" was wonderful. He was more verbal than I've ever seen him! A lot of singing along with the movie.
Therapist 2:
-Super smiley today. Great job with mixing up all different object imitations. Independently led me to the ball pit room! Great "up" and "go". Lots of independent signs for raisin. Needed help with the vocal. Worked on interspersing labeling juice v. ball v. beads.
Inappropriate behaviors:
None!
Therapist 1:
-Great job with upside "down" today. The thumbs up is still hard, but his pointing looked amazing. Object imitation was correct every time! Echoics were pretty good today. "A" was wonderful. He was more verbal than I've ever seen him! A lot of singing along with the movie.
Therapist 2:
-Super smiley today. Great job with mixing up all different object imitations. Independently led me to the ball pit room! Great "up" and "go". Lots of independent signs for raisin. Needed help with the vocal. Worked on interspersing labeling juice v. ball v. beads.
Inappropriate behaviors:
None!
7.14.2008
one day at a time
I have always been a worrier. I worry about everything under the sun. Most of the time, I worry about things that haven't even happened yet. I worry about things that "could" possibly happen. I worry about the future.
One thing living with autism has taught me is to just take one day at a time. Live for today, concentrate on today, celebrate all of today's moments, and not worry about what tomorrow will bring. It's hard for me, because, like I said, I've always been a worrier!
Here's an example. We're moving to Texas. My husband's switching jobs. He's being laid off from his current job, but we're not exactly sure when. He's interviewing in Dallas at the end of this week and hoping he gets an offer. Before Holden's diagnosis, if I were in this situation, I wouldn't be sleeping. I would be worrying. Worrying about WHEN exactly we were moving. Worrying about imposing on my brother's twin brother and his family (because we will be staying with them for the first few weeks we're there, until we find a place). I would be a mess. BUT, lucky for me, my son's diagnosis has taught me that it doesn't help to worry. It doesn't help to not sleep. It doesn't help to worry about things that just haven't happened yet.
I've mentioned this before, but, when we first got the diagnosis a little over a year ago, I didn't sleep or eat or do much of anything for 2 solid weeks. I lost 11 lbs (and was 2 months pregnant), cried 23 out of the 24 hours in a day, and had dreams about my son and his future for the 1 hour out of the day that I did sleep. I worried about him having friends one day, going to birthday parties, going to the prom, having a girlfriend, a job, a family.
Then another mom told me something that stuck with me and still does to this day. She said "Forget what you're feeling. Forget that you're upset. Forget your feelings, for now anyway." She said that I have to focus ALL of my attention and efforts on Holden's recovery. That I have to be strong, at least for the next few years, while we go through this journey. She couldn't have been more right...
And, little did I know that it would teach me patience and to relax when it comes to everything in my life. So, that's what I try to do.
One thing living with autism has taught me is to just take one day at a time. Live for today, concentrate on today, celebrate all of today's moments, and not worry about what tomorrow will bring. It's hard for me, because, like I said, I've always been a worrier!
Here's an example. We're moving to Texas. My husband's switching jobs. He's being laid off from his current job, but we're not exactly sure when. He's interviewing in Dallas at the end of this week and hoping he gets an offer. Before Holden's diagnosis, if I were in this situation, I wouldn't be sleeping. I would be worrying. Worrying about WHEN exactly we were moving. Worrying about imposing on my brother's twin brother and his family (because we will be staying with them for the first few weeks we're there, until we find a place). I would be a mess. BUT, lucky for me, my son's diagnosis has taught me that it doesn't help to worry. It doesn't help to not sleep. It doesn't help to worry about things that just haven't happened yet.
I've mentioned this before, but, when we first got the diagnosis a little over a year ago, I didn't sleep or eat or do much of anything for 2 solid weeks. I lost 11 lbs (and was 2 months pregnant), cried 23 out of the 24 hours in a day, and had dreams about my son and his future for the 1 hour out of the day that I did sleep. I worried about him having friends one day, going to birthday parties, going to the prom, having a girlfriend, a job, a family.
Then another mom told me something that stuck with me and still does to this day. She said "Forget what you're feeling. Forget that you're upset. Forget your feelings, for now anyway." She said that I have to focus ALL of my attention and efforts on Holden's recovery. That I have to be strong, at least for the next few years, while we go through this journey. She couldn't have been more right...
And, little did I know that it would teach me patience and to relax when it comes to everything in my life. So, that's what I try to do.
6.25.2008
marathon
I was talking to another mom today at therapy. She was telling me that during the first 3 months of her son's chelation, she wasn't sure she was doing the right thing. She said he had some behaviors he wasn't having prior to chelation, and that other behaviors that he previously had, actually got worse. Now that she's 6 months into chelation, she's glad she stuck with it as he's making great progress and she's excited about the possibility of his "recovery".
Another mom on a message board I belong to made a comment about how this isn't a sprint, but a marathon. That some kids will have to undergo chelation for years before they are well enough to be considered toxic-free.
We've been doing chelation for not even 2 full months yet and I'm already telling myself that I can't expect too much at this point. Holden's making progress, whether it's directly related to the chelation, or the therapy, or the multiple supplements, or the anti-fungals, who knows. I do know that 6 months ago, getting him to imitate anything was nearly impossible. Now, he will watch the Wiggles, or Sesame Street, or another video - and attempt to do what they're doing. Most of the time, it involved music and dancing. He loves music. He will also "do" most anything you ask him to do, if you show him first. We haven't graduated to actual one-step commands on much yet though. He will clap if you tell him to clap, and he'll put his arms up if you say "arms up". But, most of what he does, you need to do first. It's progress, nonetheless.
For the past 24 hours, he's been extremely stimmy. Wanting paper. He will shred it into long strips and then drop it...pick it up, later, rinse, repeat. He'll do this until we step in and redirect him. The redirection only lasts for a few minutes though, and then he's wanting his paper back. I gave him the EDTA suppository last night around 11:30pm. So, this morning, I've given him some charcoal to see if that will help with his focus. We'll see if it helps.
It's so hard to watch him go through this battle and know that you can't do anything (very much of anything, anyway) to help him feel better. I hope and pray that one day he will be thankful and not resentful that we've put him through all of this.
Another mom on a message board I belong to made a comment about how this isn't a sprint, but a marathon. That some kids will have to undergo chelation for years before they are well enough to be considered toxic-free.
We've been doing chelation for not even 2 full months yet and I'm already telling myself that I can't expect too much at this point. Holden's making progress, whether it's directly related to the chelation, or the therapy, or the multiple supplements, or the anti-fungals, who knows. I do know that 6 months ago, getting him to imitate anything was nearly impossible. Now, he will watch the Wiggles, or Sesame Street, or another video - and attempt to do what they're doing. Most of the time, it involved music and dancing. He loves music. He will also "do" most anything you ask him to do, if you show him first. We haven't graduated to actual one-step commands on much yet though. He will clap if you tell him to clap, and he'll put his arms up if you say "arms up". But, most of what he does, you need to do first. It's progress, nonetheless.
For the past 24 hours, he's been extremely stimmy. Wanting paper. He will shred it into long strips and then drop it...pick it up, later, rinse, repeat. He'll do this until we step in and redirect him. The redirection only lasts for a few minutes though, and then he's wanting his paper back. I gave him the EDTA suppository last night around 11:30pm. So, this morning, I've given him some charcoal to see if that will help with his focus. We'll see if it helps.
It's so hard to watch him go through this battle and know that you can't do anything (very much of anything, anyway) to help him feel better. I hope and pray that one day he will be thankful and not resentful that we've put him through all of this.
6.20.2008
not just good, but a GREAT day (so far)
Holden had been a bit whiney and just kind of "spacey" last week. I always know that once he goes through something like that, he always comes out on the other side with improvements. It's just waiting through the low times that gets to me. Yesterday, my mom showed up for a few days to stay with us. He hasn't seen her in a month or so. When she walked in, he went straight up to her, hugged her and sat in her lap for at least 10 minutes. Just hugging and loving and kissing her. Today in ABA, his therapists were SO happy with him. He was asking independently for raisins, to "sing", to be bounced on a bouncy ball, to be tickled, etc. Also, 2 of his therapists were having a conversation while he was watching a movie and one said to the other "his shoes (he had on crocks) are on backwards". They both kept talking about his program and she said the next thing she knew, he was taking off both shoes - switched them to the right feet - and then put them back on. Crazy. Apparently not only did he hear them, but he comprehended what they were saying too.
He's loving "If you're happy and you know it" right now. Here's a link to the video I shot on Friday:
We've been doing EDTA chelation suppositories since May 11th. Maybe, just maybe, they're beginning to help!? Whatever it is, I'll take it!
He's loving "If you're happy and you know it" right now. Here's a link to the video I shot on Friday:
We've been doing EDTA chelation suppositories since May 11th. Maybe, just maybe, they're beginning to help!? Whatever it is, I'll take it!
6.13.2008
Wii
We love the Wii in our house. Especially Zoe. Anyway, yesterday, Zoe and one of her friends were doing Wii Fit. They were doing Yoga poses, and I looked up to see Holden looking at her, then the tv, then her, and smiling. Then he started trying to do the pose, too. Gross motor imitation, yay!!!
I was doing the step aerobics with Wii Fit and he was trying to step with me. Again, most imitation! He's been doing great with that lately.
He's also saying the sounds of the letters with Leapfrog's Letter Factor DVD. He's had it for months now, but he's just starting to do all the sounds. I've decided to let him watch this one at least twice a day...
Suppository day today. Although I hate putting him through it, I also look forward to suppository days because I know it's helping.
I was doing the step aerobics with Wii Fit and he was trying to step with me. Again, most imitation! He's been doing great with that lately.
He's also saying the sounds of the letters with Leapfrog's Letter Factor DVD. He's had it for months now, but he's just starting to do all the sounds. I've decided to let him watch this one at least twice a day...
Suppository day today. Although I hate putting him through it, I also look forward to suppository days because I know it's helping.
6.05.2008
life
I can't believe it's been a month since I've posted. Sometimes I don't know where the time goes. Really.
Zoe's last day of school was yesterday. I can't believe she's a 4th grader now. I swear, she just started kindergarten!!! Hopefully she'll have plenty of friends to hang out with this summer so I don't have to drag her to therapy every day. Sometimes she doesn't mind, but for the most part - she'd rather be playing. Can't blame her. I'd rather be playing, too.
Jackson's all over the place now. He wants to walk, but he's just not quite there yet. I took him for his 9 month checkup yesterday (although he's almost 10 months). He's in the 60th percentile for height, but only 25th for weight. Overall though, he's meeting all of the developmental "milestones", so that's the most important thing at this point. Oh, and he wants me ALL.THE.TIME. Seriously, he's a big mama's boy. Which I guess makes sense - he's with me 24/7.
Holden's doing...okay, I suppose. We've been doing the EDTA suppositories since May 11th. He's tolerating them well. We've recently started Carnitine and Biotin. He's been extremely stimmy lately. Lots of visual stims, and some verbal stims as well. He's always been a visual kid, but lately, it's much worse. But, he seems to be doing well at therapy. Some whining during transitions, but who doesn't whine during transitions? I know I do.
They've worked in a potty break into his program at Quest. They take him to the potty every 30 minutes now (for the 2 hours he's there) and make him sit on it. They sing songs, he sits and does the hand motions to the songs while he's on the potty. Last week, I got him to actually PEE in the potty twice - both times were 1st thing in the morning. So, maybe he won't be so far behind on the potty training after all. We'll see.
I can't remember if I posted about this before or not - but he's also finishing songs now. Filling in words to songs like "Twinkle, Twinkle Little Star", "ABC's", and "Itsy Bitsy Spider". He'll also try to count along with you when you count. At therapy last week, they did a small circle time with 3 kids. All around Holden's age. All with 1:1 therapist with them. They sat, had a book read to them and then had to answer questions...such as "Where are your eyes?", etc. I didn't see the 1st circle time. His therapist said he had some trouble at first...cried for a few minutes, but then settled down. The 2nd time, I sat in. I was really pleased with what I saw. He sat and did Mr. Potatohead - and followed simple directions, like, "put his eyes on", or "put his shoes on". It was nice to see. If someone would have asked me if he would/could do that, I would have probably said no. But, now I know he can! We're going to incorporate some of that into things at home, too. So, hopefully he'll just get better and more comfortable with it.
More later!
Zoe's last day of school was yesterday. I can't believe she's a 4th grader now. I swear, she just started kindergarten!!! Hopefully she'll have plenty of friends to hang out with this summer so I don't have to drag her to therapy every day. Sometimes she doesn't mind, but for the most part - she'd rather be playing. Can't blame her. I'd rather be playing, too.
Jackson's all over the place now. He wants to walk, but he's just not quite there yet. I took him for his 9 month checkup yesterday (although he's almost 10 months). He's in the 60th percentile for height, but only 25th for weight. Overall though, he's meeting all of the developmental "milestones", so that's the most important thing at this point. Oh, and he wants me ALL.THE.TIME. Seriously, he's a big mama's boy. Which I guess makes sense - he's with me 24/7.
Holden's doing...okay, I suppose. We've been doing the EDTA suppositories since May 11th. He's tolerating them well. We've recently started Carnitine and Biotin. He's been extremely stimmy lately. Lots of visual stims, and some verbal stims as well. He's always been a visual kid, but lately, it's much worse. But, he seems to be doing well at therapy. Some whining during transitions, but who doesn't whine during transitions? I know I do.
They've worked in a potty break into his program at Quest. They take him to the potty every 30 minutes now (for the 2 hours he's there) and make him sit on it. They sing songs, he sits and does the hand motions to the songs while he's on the potty. Last week, I got him to actually PEE in the potty twice - both times were 1st thing in the morning. So, maybe he won't be so far behind on the potty training after all. We'll see.
I can't remember if I posted about this before or not - but he's also finishing songs now. Filling in words to songs like "Twinkle, Twinkle Little Star", "ABC's", and "Itsy Bitsy Spider". He'll also try to count along with you when you count. At therapy last week, they did a small circle time with 3 kids. All around Holden's age. All with 1:1 therapist with them. They sat, had a book read to them and then had to answer questions...such as "Where are your eyes?", etc. I didn't see the 1st circle time. His therapist said he had some trouble at first...cried for a few minutes, but then settled down. The 2nd time, I sat in. I was really pleased with what I saw. He sat and did Mr. Potatohead - and followed simple directions, like, "put his eyes on", or "put his shoes on". It was nice to see. If someone would have asked me if he would/could do that, I would have probably said no. But, now I know he can! We're going to incorporate some of that into things at home, too. So, hopefully he'll just get better and more comfortable with it.
More later!
5.09.2008
aaaand more slacking
I can't believe it's been as long as it has since I've updated. Sometimes my days get away from me and before I know it, it's time for bed and to get up and start it another day all over again.
We had an appointment with Dr. Berger on the 1st. We reviewed all of the recent labs. There were some red flags for mitochondrial dysfunction, so he's suggested we have the remaining labs done to confirm. I haven't been able to do that yet, but plan to take him in on Monday.
Other new things: We started Biotin - 1/2 cap twice a day. This is to help with the yeast issues, hopefully. We lowered his Sporanox to 4 ml. from 8 ml. and are hopeful that with the addition of the Biotin, we can keep the yeast monster away. So far, so good. We're going on the 2nd week, and I haven't seen any bad/negative behaviors which would indicate that Mr. Yeast Monster doesn't want to stay away. We're also going to start Carnitine after I get the remaining bloodwork done. This will help his Carnitine levels, which were SIGNIFICANTLY low. I've heard from some moms that supporting the mito dysfunction has been a saving grace for them - and they've had some great progress. I'm hoping for the same, obviously. We also started ongoing chelation. I've been waiting for this to happen, so I'm glad it's finally here. It took almost a year. We started biomed in May 2007, and started ongoing chelation in May 2008. So yeah, a year. Wow. We decided, based on his challenge tests, to use EDTA suppositories. He gets 1 every other day, 350 mgs. each. After 8 weeks of this, we will stop for 1 week and do another challenge test with a 750 mgs. suppository. I'm hopeful, but I know it's a long road and expect to be chelating for months, possibly years.
As for how he's doing, he's been doing great actually. Here's a recent note from therapy:
- Programs: Probed a lot of gross motor, fine motor & object imitation skills as well as some 1 step instructions to add to his program. Great discrimination with identifying eyes, nose, head. Stack blocks was better today with different blocks and transferred well to the blocks I was using yesterday.
-Communication: Independent mand for "go" ("toh" and sign) when leaving the bathroom this morning. Lots of independent "m-ooo-eee" and the end of session (for "movie"). Needed prompts in the beginning. Echoics sounded very good.
-Inappropriate Behaviors: 0 1st hour, and 0 2nd hour. (YAY!)
-Potty Information: Sat on potty for 2 minutes while playing with slinky. Then changed wet diaper. Pulled up pants independently.
So, he continues to progress. Slowly but SURELY. He's trying to sing along to songs now, too. He will try singing songs on TV, and will also fill in words to "Itsy Bitsy Spider", "Old McDonald", and "ABC's". He's asking independently for "paper".
The chelation is tough, on me and him. I hate having to give him suppositories every other night. Add in the MB12 shots ever 3 days, and I'm always having to mess with his little bottom! I just hope he thanks us one day. More later.
We had an appointment with Dr. Berger on the 1st. We reviewed all of the recent labs. There were some red flags for mitochondrial dysfunction, so he's suggested we have the remaining labs done to confirm. I haven't been able to do that yet, but plan to take him in on Monday.
Other new things: We started Biotin - 1/2 cap twice a day. This is to help with the yeast issues, hopefully. We lowered his Sporanox to 4 ml. from 8 ml. and are hopeful that with the addition of the Biotin, we can keep the yeast monster away. So far, so good. We're going on the 2nd week, and I haven't seen any bad/negative behaviors which would indicate that Mr. Yeast Monster doesn't want to stay away. We're also going to start Carnitine after I get the remaining bloodwork done. This will help his Carnitine levels, which were SIGNIFICANTLY low. I've heard from some moms that supporting the mito dysfunction has been a saving grace for them - and they've had some great progress. I'm hoping for the same, obviously. We also started ongoing chelation. I've been waiting for this to happen, so I'm glad it's finally here. It took almost a year. We started biomed in May 2007, and started ongoing chelation in May 2008. So yeah, a year. Wow. We decided, based on his challenge tests, to use EDTA suppositories. He gets 1 every other day, 350 mgs. each. After 8 weeks of this, we will stop for 1 week and do another challenge test with a 750 mgs. suppository. I'm hopeful, but I know it's a long road and expect to be chelating for months, possibly years.
As for how he's doing, he's been doing great actually. Here's a recent note from therapy:
- Programs: Probed a lot of gross motor, fine motor & object imitation skills as well as some 1 step instructions to add to his program. Great discrimination with identifying eyes, nose, head. Stack blocks was better today with different blocks and transferred well to the blocks I was using yesterday.
-Communication: Independent mand for "go" ("toh" and sign) when leaving the bathroom this morning. Lots of independent "m-ooo-eee" and the end of session (for "movie"). Needed prompts in the beginning. Echoics sounded very good.
-Inappropriate Behaviors: 0 1st hour, and 0 2nd hour. (YAY!)
-Potty Information: Sat on potty for 2 minutes while playing with slinky. Then changed wet diaper. Pulled up pants independently.
So, he continues to progress. Slowly but SURELY. He's trying to sing along to songs now, too. He will try singing songs on TV, and will also fill in words to "Itsy Bitsy Spider", "Old McDonald", and "ABC's". He's asking independently for "paper".
The chelation is tough, on me and him. I hate having to give him suppositories every other night. Add in the MB12 shots ever 3 days, and I'm always having to mess with his little bottom! I just hope he thanks us one day. More later.
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