Thursday, January 12, 2012
Pieces of Us: A Typical Day with Hayden Part 2 : Hyperbaric Oxyg...
Pieces of Us: A Typical Day with Hayden Part 2 : Hyperbaric Oxyg...: Hayden has been receiving hyperbaric oxygen therapy (hbot) for a little over a year now. We started off by driving to Carmel twice a week f...
A Typical Day with Hayden Part 2 : Hyperbaric Oxygen Therapy
Hayden has been receiving hyperbaric oxygen therapy (hbot) for a little over a year now. We started off by driving to Carmel twice a week for treatment. We did 2 hours of hbot while we were there. The drive was 5 hours round trip. When we were about 20 hours into treatment we started to some significant improvement in Hayden. He was gaining new words every day, he was not as hyper, and he was sleeping better. At that point my parents gave us the money to purchase a chamber to have in our home :)
I had been look at chambers and talking to different people and companies to purchase one. The average price specific model I was looking for (Vitaeris 320) was $20,000.00. They are around $32,000.00 brand new and the does NOT include the oxygen concentrator.
I started watching for a Vitaeris 320 on ebay. I found one that the people were located 3 hours away and were willing to deliver, set it up, and instruct us on how to use it. There was also another person that wanted that specific chamber and my plan was to bid at the last minute. Well at the last minute Ebay pulled the listing. I was CRUSHED!! Come to find out it is illegal to sell medication on ebay (oxygen is a medication) and you have to go through the proper channels and have a prescription....yada....yada....yade.
Well if you know me I am not one to let a little red tape stop me ;) I could have gotten a prescription and I could have went through the proper channels to get Hayden's hbot. All that takes time and additional $$$$ and I didn't have a penny or a second to spare.
I contacted the lady immediately and worked out a deal with her. We paid (well my parents) $9100.00 for Hayden's hbot.......what a DEAL!! They delivered it, set it up, and gave us instructions on how to use it. B-I-N-G-O!!!
We have tried a few different protocols on hbot with Hayden, but what works best for him is 1-1.5 hours daily. Hayden is seriously a hot mess with hbot. Brandon or myself get in the chamber with him. Hayden can take snacks, drinks, toys, or whatever else he may want in. The majority of the time we let him have his iPad in the chamber. This is kind of a nice chill out time for all of us. I feel guilty about letting him have his iPad in there, but Brandon and I need down time too.
We have the chamber set up in our master bedroom. Hayden loves his time in the "rocket ship." We have never had an issue with him not wanting to get in or stay in.
I had been look at chambers and talking to different people and companies to purchase one. The average price specific model I was looking for (Vitaeris 320) was $20,000.00. They are around $32,000.00 brand new and the does NOT include the oxygen concentrator.
I started watching for a Vitaeris 320 on ebay. I found one that the people were located 3 hours away and were willing to deliver, set it up, and instruct us on how to use it. There was also another person that wanted that specific chamber and my plan was to bid at the last minute. Well at the last minute Ebay pulled the listing. I was CRUSHED!! Come to find out it is illegal to sell medication on ebay (oxygen is a medication) and you have to go through the proper channels and have a prescription....yada....yada....yade.
Well if you know me I am not one to let a little red tape stop me ;) I could have gotten a prescription and I could have went through the proper channels to get Hayden's hbot. All that takes time and additional $$$$ and I didn't have a penny or a second to spare.
I contacted the lady immediately and worked out a deal with her. We paid (well my parents) $9100.00 for Hayden's hbot.......what a DEAL!! They delivered it, set it up, and gave us instructions on how to use it. B-I-N-G-O!!!
We have tried a few different protocols on hbot with Hayden, but what works best for him is 1-1.5 hours daily. Hayden is seriously a hot mess with hbot. Brandon or myself get in the chamber with him. Hayden can take snacks, drinks, toys, or whatever else he may want in. The majority of the time we let him have his iPad in the chamber. This is kind of a nice chill out time for all of us. I feel guilty about letting him have his iPad in there, but Brandon and I need down time too.
We have the chamber set up in our master bedroom. Hayden loves his time in the "rocket ship." We have never had an issue with him not wanting to get in or stay in.
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| The large tan box is the oxygen concentrator. We use a flow of 8 lpm. The two silver boxes are the air compressors. The air compressors are what inflates and keeps the chamber inflated |
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| A picture of the chamber partially inflated with Brandon and Hayden inside. |
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| Hayden inside playing his iPad and holding onto a car. If you look in the left upper hand corner of the clear window you can see the oxygen tubing. Ideally Hayden should wear a mask to provide a high concentration of oxygen to him, but he won't wear it. |
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This is what the chamber looks like fully pressurized. It only takes about five minutes to pressurize and depressurize.
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Wednesday, January 11, 2012
Pieces of Us: A typical day with Hayden Part 1: Supplements
Pieces of Us: A typical day with Hayden Part 1: Supplements: Hayden is on 21 different vitamins, nutrients, anti-fungals, probiotics, and one inhaled corticosteroid. Some days it is easy to give them ...
A typical day with Hayden Part 1: Supplements
Hayden is on 21 different vitamins, nutrients, anti-fungals, probiotics, and one inhaled corticosteroid. Some days it is easy to give them to him and others days not so much. We use a syringe and mix them with various things to try and make them taste better. Hayden's supplements are all based off of laboratory findings specific for him. As Hayden's gut continues to heal we will be able to back off on a lot of his supplements. I look forward to that day!! I am sure he does too :) There are certain ones that he will have to be on the rest off his life due to his genetic make-up. Hayden's supplements cost about $400.00 a month. So here is Hayden's supplement schedule:
0700 5ml of biotic silver (this is what is killing the yeast and bacterial) mixed with a pinch of organic cranberry juice and diluted with water. I give a syringe full of the mixture and then an additional syringe full of water.
0730 Hayden gets his probiotics, we call them his friendly fighters. The probiotics are to restore good bacterial back into his body. He gets on full capsule of Flora Guard and a half of the pro-dophilus. I mix with a hint of apple juice and water.
Then sometime in the morning time he gets his "drops". Hayden actually likes doing these and opens his mouth like a baby bird for me to drop them in. He gets one drop of vitamin d3, one drop of folinic acid, and a dropper full of b12.
Hayden also take a flovent inhaler as a maintenance medication for his asthma. He gets one puff and then we brush his teeth. I really don't like him on an inhaled steroid but feel that is our only option until we get the inflammation in his body under control. I don't want anymore hospital stays like last spring.
Around noon he gets 5ml of bionic silver again. Given the same way as before breakfast except no probiotics 30 minutes afterwards.
Then between lunch time and dinner he gets the "big" mixture of his supplements. We mix all of these together and don't add anything to them. They taste nasty! We have found it easier on Hayden to just make this straight up and give it to him. Some are gel capsules that we break apart, some are powders that we use a scoop, some are liquids, one is a gel, and two are pills that we crush. This is about 25ml of liquid.
0700 5ml of biotic silver (this is what is killing the yeast and bacterial) mixed with a pinch of organic cranberry juice and diluted with water. I give a syringe full of the mixture and then an additional syringe full of water.
0730 Hayden gets his probiotics, we call them his friendly fighters. The probiotics are to restore good bacterial back into his body. He gets on full capsule of Flora Guard and a half of the pro-dophilus. I mix with a hint of apple juice and water.
Then sometime in the morning time he gets his "drops". Hayden actually likes doing these and opens his mouth like a baby bird for me to drop them in. He gets one drop of vitamin d3, one drop of folinic acid, and a dropper full of b12.
Around noon he gets 5ml of bionic silver again. Given the same way as before breakfast except no probiotics 30 minutes afterwards.
Then between lunch time and dinner he gets the "big" mixture of his supplements. We mix all of these together and don't add anything to them. They taste nasty! We have found it easier on Hayden to just make this straight up and give it to him. Some are gel capsules that we break apart, some are powders that we use a scoop, some are liquids, one is a gel, and two are pills that we crush. This is about 25ml of liquid.
For some reason I do not enjoy crushing these pills. We use pliers to crush and grind the two pills up. Of course it has to be the yellow pills that we crush and they stain everything they come in contact with.
The next two are Hayden's protein powders that we give him to help him gain weight. We mix them with coconut milk. Hayden does not seem to mind these. They have a vanilla milkshake type taste to them. We give these between lunch and dinner. It is 60 ml of liquid total.
Around 5pm Hayden gets 5 ml of bionic silver. Mixed and given the same way as earlier in the day
30 minutes after the bionic silver he gets his probiotics again.
At bedtime Hayden gets another puff of his flovent followed by brushing his teeth. I think that is it :) Some people may view this as extreme and maybe it is. I want to make sure I am doing everything in my power to help my son heal and grow.
Wednesday, January 4, 2012
Pieces of Us: The PoWer of Son-Rise and a determined MoM :)
Pieces of Us: The PoWer of Son-Rise and a determined MoM :): WoW!! I mean WOW!!! What a great day we have had today. It started off with Hayden waking up at 8 am. He is normally up and ready to ro...
The PoWer of Son-Rise and a determined MoM :)
WoW!! I mean WOW!!!
What a great day we have had today. It started off with Hayden waking up at 8 am. He is normally up and ready to rock at 5:30 am so this was a HUGE blessing :)
Hayden had a 3.5 hour therapy session with Carleen this morning and it went well as usual. His legos frustrated him because they wouldn't do what he wanted but other than that it was a good session.
He transitioned to lunch well and did 1.5 hours of hbot with Daddy. He got out we snuggled a bit and then he played monsters with Ruby.
In between this we snuck his vitamins in here and there.
Then Aunt Suzanne came to watch Ruby so I could work with Hayden. We had an AMAZING Son-Rise therapy session tonight. The 2 hour session flew by.
I was better prepared for the therapy session than normal with two specific games planed and I focused on one goal tonight as opposed to focusing on all three of Hayden's goals. The goal that I focused on was to look at me to start or maintain and interaction i.e better eye contact :)
For now on I am going to just focus on one goal per therapy session. This worked a ton better for Hayden!! He gave me eye contact every time I requested except for two times and by the end of the session I didn't even have to ask for it. He just looked me in the eyes with his beautiful big brown puppy dog eyes and eyelashes that grown women envy. When our eyes connect it melts my heart every time :)
Out of the entire two hours of the therapy session I only had to join Hayden in a stim for about 10 minutes total!!
The first activity that I set out was to massage Hayden with lotion. I was truly shocked how much he enjoyed it. We did this activity for a total of 40 minutes, yes you read right 40 minutes!!! I had 40 minutes of pure connection with Hayden and I have to tell you it was AMAZING. I massaged his legs, arms, hands, feet, and belly. I used deep pressure (which is what he prefers), light pressure, tickling, and tapping. I had him request and give me eye contact to continue messaging and what type, and where he wanted messaged. I told him how much I love him, how proud I am of him, and how amazing he is while messaging him. I got tearful while giving him his message and he sat up (he was sitting back on his bean bag so he was at ideal level to make eye contact with me). Hayden sat up and wiped my tear away with his hand. I still can't believe he did this!!!
While messaging Hayden I was having flashbacks of how much he use to despise being touched and not like being messy at all. Here we sat with me messaging lotion all over him and Hayden was LOVING it. I must saying I was LOVING it too :) I tried to get him to message my hands and he said no, massage me!!
Hayden was so calm, relaxed, and still while I massaged him. All of these are things that Hayden is usually the direct opposite of!! LOVE it :)
The next activity I planed was to play with the dry erase dice I recently got him (thanks to a fellow Son-Rise mom for the idea). I wrote things such as tickle, jump high, spin jump, cow, and sheep on it. We would throw the dice and act out what was wrote on it. Hayden wasn't really into this. I think it would work better with pictures on it for us. So for our therapy session tomorrow I will have picture drawn on the dice ahead of time. Here is a picture of the dice. I ordered it off of amazon.
The last activity was rubber banding his cars to the rope connected to his pulley system. Hayden was HUGELY into this activity. I am proud of this activity because I just came up with it while in the room working with Hayden. The best thing about this is Hayden had to have me put the rubber bands on the rope and attach the cars to the rope. I requested that he tell me where on the rope, give me the rubber bands, and help hold the car while attaching it. I got all sorts of eye contact and language out of this activity with out requesting it. We did this activity for about 35 minutes.
We bought all supplies at a local hardware store. We also have buckets that we attach to one end of the rope and ping pong balls that we put in the buckets. Hayden likes to raise the buckets with the pulley and let go so the ping pong balls fly out.
Hayden's Aunt Sheila made him a GEO board for Christmas. You can make all sorts of shapes and patterns with the rubber bands. You can also strum the rubber bands to make music. It is a peg board with bolts and nuts.
I felt so connected with Hayden tonight while working with him. The best part is that we both had fun and enjoyed what we were doing together!! I LOVE the Son-Rise program and highly recommend it!!
What a great day we have had today. It started off with Hayden waking up at 8 am. He is normally up and ready to rock at 5:30 am so this was a HUGE blessing :)
Hayden had a 3.5 hour therapy session with Carleen this morning and it went well as usual. His legos frustrated him because they wouldn't do what he wanted but other than that it was a good session.
He transitioned to lunch well and did 1.5 hours of hbot with Daddy. He got out we snuggled a bit and then he played monsters with Ruby.
In between this we snuck his vitamins in here and there.
Then Aunt Suzanne came to watch Ruby so I could work with Hayden. We had an AMAZING Son-Rise therapy session tonight. The 2 hour session flew by.
I was better prepared for the therapy session than normal with two specific games planed and I focused on one goal tonight as opposed to focusing on all three of Hayden's goals. The goal that I focused on was to look at me to start or maintain and interaction i.e better eye contact :)
For now on I am going to just focus on one goal per therapy session. This worked a ton better for Hayden!! He gave me eye contact every time I requested except for two times and by the end of the session I didn't even have to ask for it. He just looked me in the eyes with his beautiful big brown puppy dog eyes and eyelashes that grown women envy. When our eyes connect it melts my heart every time :)
Out of the entire two hours of the therapy session I only had to join Hayden in a stim for about 10 minutes total!!
The first activity that I set out was to massage Hayden with lotion. I was truly shocked how much he enjoyed it. We did this activity for a total of 40 minutes, yes you read right 40 minutes!!! I had 40 minutes of pure connection with Hayden and I have to tell you it was AMAZING. I massaged his legs, arms, hands, feet, and belly. I used deep pressure (which is what he prefers), light pressure, tickling, and tapping. I had him request and give me eye contact to continue messaging and what type, and where he wanted messaged. I told him how much I love him, how proud I am of him, and how amazing he is while messaging him. I got tearful while giving him his message and he sat up (he was sitting back on his bean bag so he was at ideal level to make eye contact with me). Hayden sat up and wiped my tear away with his hand. I still can't believe he did this!!!
While messaging Hayden I was having flashbacks of how much he use to despise being touched and not like being messy at all. Here we sat with me messaging lotion all over him and Hayden was LOVING it. I must saying I was LOVING it too :) I tried to get him to message my hands and he said no, massage me!!
Hayden was so calm, relaxed, and still while I massaged him. All of these are things that Hayden is usually the direct opposite of!! LOVE it :)
The next activity I planed was to play with the dry erase dice I recently got him (thanks to a fellow Son-Rise mom for the idea). I wrote things such as tickle, jump high, spin jump, cow, and sheep on it. We would throw the dice and act out what was wrote on it. Hayden wasn't really into this. I think it would work better with pictures on it for us. So for our therapy session tomorrow I will have picture drawn on the dice ahead of time. Here is a picture of the dice. I ordered it off of amazon.
The last activity was rubber banding his cars to the rope connected to his pulley system. Hayden was HUGELY into this activity. I am proud of this activity because I just came up with it while in the room working with Hayden. The best thing about this is Hayden had to have me put the rubber bands on the rope and attach the cars to the rope. I requested that he tell me where on the rope, give me the rubber bands, and help hold the car while attaching it. I got all sorts of eye contact and language out of this activity with out requesting it. We did this activity for about 35 minutes.
We bought all supplies at a local hardware store. We also have buckets that we attach to one end of the rope and ping pong balls that we put in the buckets. Hayden likes to raise the buckets with the pulley and let go so the ping pong balls fly out.
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| This is what the rope looked like attached to his shelf with a magnet and pulley system |
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| Close us of the cars attached with a rubber band |
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| The pulley, rope, and magnet. We put foam around the magnet so if it fell it cushioned the impact some. We also have a 25 lbs break aways safety feature. We installed this after Hayden wrapped the rope around his neck and tried to jump off his slide. |
I felt so connected with Hayden tonight while working with him. The best part is that we both had fun and enjoyed what we were doing together!! I LOVE the Son-Rise program and highly recommend it!!
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| Hayden came in after therapy and shared with swing with his cousin Carly! |
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| They were both happy to be swinging together. |
Sunday, January 1, 2012
Hello 2012!!!
WoW!! I can't believe that 2012 is here it seems that 2011 went by very quickly.
All in all 2011 was a great year for us. Hayden has had many ups and downs but steady progress has shined through.
The poor guy was hospitalized twice for asthma, had staples in the back of his head, has warts burned off, and had to be on antibiotics once (only because his old doctor told me his ear drums would rupture if I didn't....I now know better).
His over all general health is the best it has ever been. Hayden grew SIX inches this year and gained FIVE pounds!!!! Woot...Woot....Woot!!! For those that don't know Hayden didn't grow or gain weight from the age of 18 months to 2.5 years old.
Hayden's overall color is improving and the dark circles under his eyes are gone!! His belly is not as bloated as it has been. All of these things are good signs and tell me that his general health is improving.
Hayden went to two different schools and is now in NO school. Brandon and I made the decision to run a full time therapy program out of our home for Hayden that focuses on social skills. The Son-Rise program has been a HUGE blessing to our family and Hayden is making great strides because of it.
He have continued with Hayden's diet, done three rounds of chelation, implemented a new yeast treatment protocol, and hyperbaric oxygen therapy. We have worked very hard at removing television and electronics from Hayden's daily routine. After all it is hard to compete with Hayden's i-pad for Hayden's attention. The i-pad will always win. Same thing for movies and television.....they are way more exciting than I could ever think of being.
We were fired from a pediatric practice because I REFUSE to have Hayden vaccinated (even though his specialist has signed paperwork saying his is medically exempt from vaccinations). I have thought about getting a bumper sticker made that says, "We were fired from our children's pediatrician because we refuse to vaccinate our son who was injured from vaccinations and has a weak immune system." Or better yet a tee shirt that says that. It all worked out for the better, we now have a pediatrician that will not force vaccines on my children.
Here are some memorable movements from 2011:
Hayden accidentally breaking my nose while swinging. Requiring me to have a 2.5 hour reconstructive surgery. Although this worked out well and I got an insurance paid nose job.
Hayden pooping in the middle of the road in front of our mailbox
Ruby peeing in my purse because she was mad at me
Hayden peeing off the top of the play set at the park and landing on Ruby. I told Ruby it was raining ;)
Hayden super gluing the roof of his mouth.....thank goodness he didn't glue his tongue too
Hayden and Ruby locked me out of the house requiring the neighbor to kick our door in
Hayden pooping in the bathroom sink.....took Brandon and awhile for we pin pointed where the smell was coming from.
Hayden clogging the toilet with diaper wipes requiring the plumber to fix it
Hayden drawing nice art work all over the kitchen walls with a RED sharpie
Hayden drinking from the toilet
I think I need to keep better track of these great "memories" I know there are much more than I am listing.
I am excited to see what is in store for us in 2012!!
All in all 2011 was a great year for us. Hayden has had many ups and downs but steady progress has shined through.
The poor guy was hospitalized twice for asthma, had staples in the back of his head, has warts burned off, and had to be on antibiotics once (only because his old doctor told me his ear drums would rupture if I didn't....I now know better).
His over all general health is the best it has ever been. Hayden grew SIX inches this year and gained FIVE pounds!!!! Woot...Woot....Woot!!! For those that don't know Hayden didn't grow or gain weight from the age of 18 months to 2.5 years old.
Hayden's overall color is improving and the dark circles under his eyes are gone!! His belly is not as bloated as it has been. All of these things are good signs and tell me that his general health is improving.
Hayden went to two different schools and is now in NO school. Brandon and I made the decision to run a full time therapy program out of our home for Hayden that focuses on social skills. The Son-Rise program has been a HUGE blessing to our family and Hayden is making great strides because of it.
He have continued with Hayden's diet, done three rounds of chelation, implemented a new yeast treatment protocol, and hyperbaric oxygen therapy. We have worked very hard at removing television and electronics from Hayden's daily routine. After all it is hard to compete with Hayden's i-pad for Hayden's attention. The i-pad will always win. Same thing for movies and television.....they are way more exciting than I could ever think of being.
We were fired from a pediatric practice because I REFUSE to have Hayden vaccinated (even though his specialist has signed paperwork saying his is medically exempt from vaccinations). I have thought about getting a bumper sticker made that says, "We were fired from our children's pediatrician because we refuse to vaccinate our son who was injured from vaccinations and has a weak immune system." Or better yet a tee shirt that says that. It all worked out for the better, we now have a pediatrician that will not force vaccines on my children.
Here are some memorable movements from 2011:
Hayden accidentally breaking my nose while swinging. Requiring me to have a 2.5 hour reconstructive surgery. Although this worked out well and I got an insurance paid nose job.
Hayden pooping in the middle of the road in front of our mailbox
Ruby peeing in my purse because she was mad at me
Hayden peeing off the top of the play set at the park and landing on Ruby. I told Ruby it was raining ;)
Hayden super gluing the roof of his mouth.....thank goodness he didn't glue his tongue too
Hayden and Ruby locked me out of the house requiring the neighbor to kick our door in
Hayden pooping in the bathroom sink.....took Brandon and awhile for we pin pointed where the smell was coming from.
Hayden clogging the toilet with diaper wipes requiring the plumber to fix it
Hayden drawing nice art work all over the kitchen walls with a RED sharpie
Hayden drinking from the toilet
I think I need to keep better track of these great "memories" I know there are much more than I am listing.
I am excited to see what is in store for us in 2012!!
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