Friday, December 22. 2006
The (Long-Awaited) Peanut Report...
Well, it has been about six months: but here, for your perusal, is the latest edition of The Peanut Report. So much has happened; I scarcely know where to begin. Some milestones have been reached, and some hurdles surpassed. Logan has been home from the PICU for about 13 months now, and barring some minor issues, has done rather well for himself. We have made many, many good friends, close acquaintances, and numerous people from varied walks in life, in general.
Authors note* There is a large body of people I would like to thank on Logan's behalf. I have added hyperlinks primarily to express to you- the reader- an opportunity to see what is meant by "varied," above. Of course, I also hope to impart useful information, pique your interest, and (shamelessly) “plug" the folks who have done so much for a little man (whom some of them have never even met).
…And Mount Washington for example, has a web cam mounted in the observatory at the summit - fun AND a learning experience!
Logan has received no small amount of attention, in the last six months. Last summer, he was involved in the local MDA telethon, which showed him several times on TV. Prior to this Deb and I were invited to speak at a local radio station, WTPL 107.7; we spoke in some detail regarding the MDA, Spinal Muscular Atrophy and Logan in general. This radio interview came at an opportune time; we specifically addressed the MDA telethon and asked listeners to donate as much as they were able, to the Muscular Dystrophy Association.
We were able to film footage for the telethon right in our own home, thanks to WMUR TV Channel 9,
our local news and television station. We had initially planned to get footage in our backyard; however, as it was unduly hot, the news crew set up in our bedroom, which was air-conditioned. The crew was accompanied by our friend and contact from the local MDA, Miss Amy Rohleder. Everyone seemed to enjoy Logan's company, and it was a pleasure to meet and interact with the whole team, although Logan was a bit of a Grumble-Bum, to use an Aussie friend’s phrase. Well, sometimes he can be a prima donna, just like the rest of us. Perhaps it was due to the lack of a dressing room, though he did rate pretty high billing...
Another wonderful event of the summer was brought about by one of Debs acquaintances, through her job. A gentleman by the name of George, age 71, works for the Crowne Plaza Hotel, chauffeuring guests and flight crews to and from the airport. He sees Deb often, and is always asking after Logan. He and several of his friends took it upon themselves to climb Mount Washington on Logan's behalf. By doing this, George and his friends raised money towards a van, which we are attempting to get equipped for Logan. They are not the only folks interested in helping Logan's cause, but they are by far, some of the more memorable people working on this project. Mount Washington, for those of you not familiar with it, is one of the more inhospitable mountains in the Appalachian range: it is not unusual for the weather to suddenly take a turn for the worst, and numerous people have lost their lives on this mountain by not being properly prepared. If my memory serves, George makes this climb annually; this year, however, he dedicated it to Logan.
Southwest Airlines has also taken an interest in The Peanut. We have received cards, letters, and a care package containing stuffed airplanes, inflatable
airplanes, and a Little Golden book. The pilots (which George taxis to and from the airport) are all very interested in Logan, as well. They get updates as to his well-being from George, as well as Deb, and know him by sight, due to all the pictures passed around. Although I rarely fly, and have no personal experience with Southwest Airlines, I can attest to the fact that the people we have met go a long way in biasing my opinion of this company: if the employees set the standard, then Southwest has got plane-loads of heart. Plus they have no problems parking their planes at Logan, International. Hee-hee!
My Little Man is, apparently, easy to look at. He is the co-subject of three calendars, currently, as well as several articles of clothing. The above picture of Logan, Deb, and me, was the picture selected by two of the three. The Moore Center, which is the parent company of Easter Seals, has Logan featured for the month of July in their 2007 calendar. Although he was born in June, it works out well, as July is my birth month, and seeing that picture on my birthday is all I could ask for, and more.
.
Pulmonetic Systems, a division of Viasys HealthCare, distributes an annual calendar through their Profiles in Courage program, and 2007 features Logan in the month of December. While, once again, this is not his birth month, there are two pictures on the page, one of which being him in his Santa hat, and he makes an adorable little helper.
Pulmonetics also had our friend MJ Purk, as Miss. June, in her 2006 Graduation Robes- “WAY TO GO, MJ!” MJ, I might add, is another hero of mine; for her perseverance, her academic achievements, to date, and the size of her heart. To do what she and her caregiver, Ms. Brenda Hansen, does with B4SMA is the magic of human kindness. It is to my understanding that MJ had a big part in the SMA Support Calendar, 2007. This is a montage calendar, with Logan‘s picture amidst a bunch of his peers’ photos. I might add that MJ also offers me hope; that my son will do as well as her, and be as prosperous with who he is.
Another little project, which Pulmonetics undertook, was printing a line of sweatshirts for the Apria Biomed Division (the people that repair and service Pulmonetics machinery), which were handed out at their annual "thank you" banquet in Chicago. All the Apria representatives were given the sweatshirts, which feature a 5" x 7" picture of Logan on the back, and bearing the inscription "Maintenance... For Life!"
Pulmonetics, I might add, sent us a few of these sweatshirts for, I believe, revenge against Logan's cuteness. (This, I might add, failed utterly; he is even more adorable, while wearing the sweatshirt sent to him!) If you, or someone you know, uses a Pulmonetics respirator, or Bi-pap equipment, IMHO (in my humble opinion), you have a company that treats their clientele with respect and take a healthy interest in their well being. I trust my Son’s health and well being to his vent, and I do not feel that trust to be misplaced.
In the year and some odd weeks Logan has
been home, he has (knock on wood) done very well, all things considered, with no major or insurmountable issues. He has had issues with reflux and emesis, although with time and experience, these events have become few and far between. I have my suspicions that he is just like the average bear, in that he is two, and can be an extraordinarily funny. When "voicing" his demands, or being denied, he may not use words per se, but he certainly gets his meaning across... "Do it or else, Dada." More often than not, I am forced to give in; not because I am a pushover, but because I feel bad when I laugh at him for putting on such a good performance. After all, how upset could he honestly be, if I can get him to give me a satisfied "Yes", after I mention the magic word, "SpongeBob"? I never fail to be amazed at his level of comprehension, for being a 2 1/2 year old.
VERSA FORM!
This was just recently a topic which came up with Logan’s Occupational Therapist and me. I also noticed one of the topics in my online Chat Group, SMA Support, was about positioning for the little guys/ girls. I also happen
to be a raving lunatic regarding this topic. I cannot say it enough; Versa Form has worked SO well for Logan. His OT came over yesterday for her regular visit, asked how his back was doing, and was VERY surprised- he has a nearly flawless skin tone. Every once in a while, we get a minor pressure sore, (well, he does, but you know where I'm coming from) but he gets enough postural change, and at least 3 full tub baths (as opposed to bed baths) per week, minimum, followed by a "cocktail" rubdown, of his nurse's devising (Ken and Logan in photo shown here). PLUS, although I haven't tried it yet, (I plan to soon!) the versa form can be used in the bathtub. This would be nice, as his bath-chair sits too high in the water (comes up to his navel, where high tide meets the overflow drain), at it's lowest setting. My only regret is not getting 2 of the full sized ones, instead of a "half mattress" and a next sized down....I like the smaller one in addition to the half mattress, but he is growing like a weed! The half mattress is as big as I have seen them available; this is my only real complaint.
I use a pillow as a wedge while forming the Versa Form, to increase or decrease the degree to which he sits up. I also use whatever is handy, like Stuffies, another pillow, our cats, etc, in order to help contour the thing for "good posture", and the “back” can incline as high or as low as Logan needs, depending on his secretions. I can also get Logan on his side, without undue pressure points to his shoulder or ribs, and although I still need something adequate for between his legs, his lower hip sits snugly and aligned on the Versa Form. After pulling the air out of the mattress, the Stuffies, pillows, etc., can be pulled out from under the mattress, and it is good to go. The whole thing can then be placed in a bed, “Papa-San” chair, the floor (although we do not generally use the floor), or wherever Logan can go, really.
SMA Support, as well as the O’Neils, and several other folks, on and off Chat, have gotten Logan into some styling Wheels. He now has a Kid Kart stroller/ wheelchair, which has the space, as well as durability, to carry both Logan and his equipment. Laura Stants, to who like so many other wonderful people, I am forever indebted, is the founder of this online support group, and so much more. She makes sure all the kiddos out there have what they need; from Cough assists to pulse oxymeters; more importantly, she provides information AND moderation for our little “Chat Family”, and inspires some (most? all?) of us to be everyday heroes, like herself. (Thanks, Laura) As a matter of fact, it is SMA Support that I personally use for my charity of choice, when using Goodsearch as my search engine.
If you’re not using Goodsearch, by the way, get with the program. It is currently the only search engine that I am aware of, that actually donates money towards the charity of your choice. Not Google, or Ask Jeeves, or any of those. It’s only a penny a search, but they add up! I must do a buck a week, at least. Use it; donate to SMA Support, or the MDA, or the Cancer Society, or even the ASPCA- whatever!
We have found a van for Logan, and are currently undergoing the process of getting it modified, in order to service his needs. Lift, tie-down mounts, etc. We are holding a fund raiser in Derry, NH, hopefully towards the end of January, and are selling several different things to help raise funds; for both the van, and the lift.
Logan has his own line of custom wear, for sale. Bracelets, as you can see in the picture here; they are black and blue, with white lettering, which stands out quite well. These are both the same style, albeit, different sizes, so they all say “LOGAN” on one side, and “CURE 4 SMA” on the other.
We custom designed T-Shirts for Logan, as well. The back of the shirts are pretty much the
license plates on the Jeep Deb drives, with Logan’s birth month and year for the registration stickers. The front was drawn up by Brian at FatCats Screen Printing, on the West Side of Lovely, Scenic Manchester, NH. He hand-drew the results with a picture of Logan to go by, and I think the picture does my boy justice. Shirts are available, as shown here, in white; adult sizes S to XXXL, youth sizes on request.
Bracelets are $3, T-Shirts $15, and we are tentatively looking at getting sweatshirts made. Deb and I got one apiece, to “try them on for size,” and liked them considerably. They have the same graphics, but are an ash grey color, as seen
on Deb, here. Unfortunately, the actual costs are higher, as they are heavier material, hooded, and have the pocket through the front. We will be taking orders for those PRIOR to having them made, as they will be $25-$30 apiece depending on size. Inquiries or orders may be placed at
logansrun888@gmail.com
I am also looking into getting some Tie-Dyes made for spring, same logo NH License Plate on the back, with something new on the front. Who says your kids can’t have style, just because they have a handicap? Buying a bunch of good quality T-Shirts in bulk, from FatCats, and holding a local dyeing party would be fun enough in itself; then FatCats will take the dyed shirts back to do the graphic work.
*** INTERNATIONAL NEWS FLASH ***
“AUSTRALIA TIMES”: Ms. Julie Cini has had a 6 lb, 9 oz little girl, Zarlee Rose, 9:25am on December 13th. Several people have asked how that was coming; apparently all is well, Mom is beaming. Send congratulations, etc, to the SMA Association of Australia, and say “Hi” to my Mates, while you are there. We are still proud members of the SMAAA. More details to follow, as they become available.
THIS little beastie is our newest addition to the family. Please note, from where you sit the smell of brimstone is probably mild. His name is Pixel, and enjoys being eaten by our Welsh Corgi, Nixon.
Really.
It is incredibly funny, how they look like a war is in progress, but sleep curled up together. This picture is of Pixel sleeping with Sam, an older cat of ours.
As this is becoming lengthy enough to bind and publish, I want to close this Report with warm regards to everyone that receives it;
whether it is sent directly to you, or forwarded 
to others, MERRY CHRISTMAS, and have a SAFE and HAPPY NEW YEAR! …I look forward to sending out a post-Holiday Report, and would love to hear from anyone, regarding Logan, this Report, or anything you would like to bring up. Whatever you do for the Seasons, we hope you all have a ball!
From all of us, here at Logan Central; Deb, Sean, Alicia, Logan, and me, to all of you- HAPPY HOLIDAYS!!
Authors note* There is a large body of people I would like to thank on Logan's behalf. I have added hyperlinks primarily to express to you- the reader- an opportunity to see what is meant by "varied," above. Of course, I also hope to impart useful information, pique your interest, and (shamelessly) “plug" the folks who have done so much for a little man (whom some of them have never even met).
…And Mount Washington for example, has a web cam mounted in the observatory at the summit - fun AND a learning experience!
Logan has received no small amount of attention, in the last six months. Last summer, he was involved in the local MDA telethon, which showed him several times on TV. Prior to this Deb and I were invited to speak at a local radio station, WTPL 107.7; we spoke in some detail regarding the MDA, Spinal Muscular Atrophy and Logan in general. This radio interview came at an opportune time; we specifically addressed the MDA telethon and asked listeners to donate as much as they were able, to the Muscular Dystrophy Association.
We were able to film footage for the telethon right in our own home, thanks to WMUR TV Channel 9,
our local news and television station. We had initially planned to get footage in our backyard; however, as it was unduly hot, the news crew set up in our bedroom, which was air-conditioned. The crew was accompanied by our friend and contact from the local MDA, Miss Amy Rohleder. Everyone seemed to enjoy Logan's company, and it was a pleasure to meet and interact with the whole team, although Logan was a bit of a Grumble-Bum, to use an Aussie friend’s phrase. Well, sometimes he can be a prima donna, just like the rest of us. Perhaps it was due to the lack of a dressing room, though he did rate pretty high billing...Another wonderful event of the summer was brought about by one of Debs acquaintances, through her job. A gentleman by the name of George, age 71, works for the Crowne Plaza Hotel, chauffeuring guests and flight crews to and from the airport. He sees Deb often, and is always asking after Logan. He and several of his friends took it upon themselves to climb Mount Washington on Logan's behalf. By doing this, George and his friends raised money towards a van, which we are attempting to get equipped for Logan. They are not the only folks interested in helping Logan's cause, but they are by far, some of the more memorable people working on this project. Mount Washington, for those of you not familiar with it, is one of the more inhospitable mountains in the Appalachian range: it is not unusual for the weather to suddenly take a turn for the worst, and numerous people have lost their lives on this mountain by not being properly prepared. If my memory serves, George makes this climb annually; this year, however, he dedicated it to Logan.
Southwest Airlines has also taken an interest in The Peanut. We have received cards, letters, and a care package containing stuffed airplanes, inflatable
airplanes, and a Little Golden book. The pilots (which George taxis to and from the airport) are all very interested in Logan, as well. They get updates as to his well-being from George, as well as Deb, and know him by sight, due to all the pictures passed around. Although I rarely fly, and have no personal experience with Southwest Airlines, I can attest to the fact that the people we have met go a long way in biasing my opinion of this company: if the employees set the standard, then Southwest has got plane-loads of heart. Plus they have no problems parking their planes at Logan, International. Hee-hee!My Little Man is, apparently, easy to look at. He is the co-subject of three calendars, currently, as well as several articles of clothing. The above picture of Logan, Deb, and me, was the picture selected by two of the three. The Moore Center, which is the parent company of Easter Seals, has Logan featured for the month of July in their 2007 calendar. Although he was born in June, it works out well, as July is my birth month, and seeing that picture on my birthday is all I could ask for, and more.
.
Pulmonetic Systems, a division of Viasys HealthCare, distributes an annual calendar through their Profiles in Courage program, and 2007 features Logan in the month of December. While, once again, this is not his birth month, there are two pictures on the page, one of which being him in his Santa hat, and he makes an adorable little helper.
Pulmonetics also had our friend MJ Purk, as Miss. June, in her 2006 Graduation Robes- “WAY TO GO, MJ!” MJ, I might add, is another hero of mine; for her perseverance, her academic achievements, to date, and the size of her heart. To do what she and her caregiver, Ms. Brenda Hansen, does with B4SMA is the magic of human kindness. It is to my understanding that MJ had a big part in the SMA Support Calendar, 2007. This is a montage calendar, with Logan‘s picture amidst a bunch of his peers’ photos. I might add that MJ also offers me hope; that my son will do as well as her, and be as prosperous with who he is.
Another little project, which Pulmonetics undertook, was printing a line of sweatshirts for the Apria Biomed Division (the people that repair and service Pulmonetics machinery), which were handed out at their annual "thank you" banquet in Chicago. All the Apria representatives were given the sweatshirts, which feature a 5" x 7" picture of Logan on the back, and bearing the inscription "Maintenance... For Life!"
Pulmonetics, I might add, sent us a few of these sweatshirts for, I believe, revenge against Logan's cuteness. (This, I might add, failed utterly; he is even more adorable, while wearing the sweatshirt sent to him!) If you, or someone you know, uses a Pulmonetics respirator, or Bi-pap equipment, IMHO (in my humble opinion), you have a company that treats their clientele with respect and take a healthy interest in their well being. I trust my Son’s health and well being to his vent, and I do not feel that trust to be misplaced.
In the year and some odd weeks Logan has
been home, he has (knock on wood) done very well, all things considered, with no major or insurmountable issues. He has had issues with reflux and emesis, although with time and experience, these events have become few and far between. I have my suspicions that he is just like the average bear, in that he is two, and can be an extraordinarily funny. When "voicing" his demands, or being denied, he may not use words per se, but he certainly gets his meaning across... "Do it or else, Dada." More often than not, I am forced to give in; not because I am a pushover, but because I feel bad when I laugh at him for putting on such a good performance. After all, how upset could he honestly be, if I can get him to give me a satisfied "Yes", after I mention the magic word, "SpongeBob"? I never fail to be amazed at his level of comprehension, for being a 2 1/2 year old.VERSA FORM!
This was just recently a topic which came up with Logan’s Occupational Therapist and me. I also noticed one of the topics in my online Chat Group, SMA Support, was about positioning for the little guys/ girls. I also happen
to be a raving lunatic regarding this topic. I cannot say it enough; Versa Form has worked SO well for Logan. His OT came over yesterday for her regular visit, asked how his back was doing, and was VERY surprised- he has a nearly flawless skin tone. Every once in a while, we get a minor pressure sore, (well, he does, but you know where I'm coming from) but he gets enough postural change, and at least 3 full tub baths (as opposed to bed baths) per week, minimum, followed by a "cocktail" rubdown, of his nurse's devising (Ken and Logan in photo shown here). PLUS, although I haven't tried it yet, (I plan to soon!) the versa form can be used in the bathtub. This would be nice, as his bath-chair sits too high in the water (comes up to his navel, where high tide meets the overflow drain), at it's lowest setting. My only regret is not getting 2 of the full sized ones, instead of a "half mattress" and a next sized down....I like the smaller one in addition to the half mattress, but he is growing like a weed! The half mattress is as big as I have seen them available; this is my only real complaint.I use a pillow as a wedge while forming the Versa Form, to increase or decrease the degree to which he sits up. I also use whatever is handy, like Stuffies, another pillow, our cats, etc, in order to help contour the thing for "good posture", and the “back” can incline as high or as low as Logan needs, depending on his secretions. I can also get Logan on his side, without undue pressure points to his shoulder or ribs, and although I still need something adequate for between his legs, his lower hip sits snugly and aligned on the Versa Form. After pulling the air out of the mattress, the Stuffies, pillows, etc., can be pulled out from under the mattress, and it is good to go. The whole thing can then be placed in a bed, “Papa-San” chair, the floor (although we do not generally use the floor), or wherever Logan can go, really.
SMA Support, as well as the O’Neils, and several other folks, on and off Chat, have gotten Logan into some styling Wheels. He now has a Kid Kart stroller/ wheelchair, which has the space, as well as durability, to carry both Logan and his equipment. Laura Stants, to who like so many other wonderful people, I am forever indebted, is the founder of this online support group, and so much more. She makes sure all the kiddos out there have what they need; from Cough assists to pulse oxymeters; more importantly, she provides information AND moderation for our little “Chat Family”, and inspires some (most? all?) of us to be everyday heroes, like herself. (Thanks, Laura) As a matter of fact, it is SMA Support that I personally use for my charity of choice, when using Goodsearch as my search engine.
If you’re not using Goodsearch, by the way, get with the program. It is currently the only search engine that I am aware of, that actually donates money towards the charity of your choice. Not Google, or Ask Jeeves, or any of those. It’s only a penny a search, but they add up! I must do a buck a week, at least. Use it; donate to SMA Support, or the MDA, or the Cancer Society, or even the ASPCA- whatever!
We have found a van for Logan, and are currently undergoing the process of getting it modified, in order to service his needs. Lift, tie-down mounts, etc. We are holding a fund raiser in Derry, NH, hopefully towards the end of January, and are selling several different things to help raise funds; for both the van, and the lift.
Logan has his own line of custom wear, for sale. Bracelets, as you can see in the picture here; they are black and blue, with white lettering, which stands out quite well. These are both the same style, albeit, different sizes, so they all say “LOGAN” on one side, and “CURE 4 SMA” on the other.
We custom designed T-Shirts for Logan, as well. The back of the shirts are pretty much the
license plates on the Jeep Deb drives, with Logan’s birth month and year for the registration stickers. The front was drawn up by Brian at FatCats Screen Printing, on the West Side of Lovely, Scenic Manchester, NH. He hand-drew the results with a picture of Logan to go by, and I think the picture does my boy justice. Shirts are available, as shown here, in white; adult sizes S to XXXL, youth sizes on request. Bracelets are $3, T-Shirts $15, and we are tentatively looking at getting sweatshirts made. Deb and I got one apiece, to “try them on for size,” and liked them considerably. They have the same graphics, but are an ash grey color, as seen
on Deb, here. Unfortunately, the actual costs are higher, as they are heavier material, hooded, and have the pocket through the front. We will be taking orders for those PRIOR to having them made, as they will be $25-$30 apiece depending on size. Inquiries or orders may be placed at logansrun888@gmail.com
I am also looking into getting some Tie-Dyes made for spring, same logo NH License Plate on the back, with something new on the front. Who says your kids can’t have style, just because they have a handicap? Buying a bunch of good quality T-Shirts in bulk, from FatCats, and holding a local dyeing party would be fun enough in itself; then FatCats will take the dyed shirts back to do the graphic work.
*** INTERNATIONAL NEWS FLASH ***
“AUSTRALIA TIMES”: Ms. Julie Cini has had a 6 lb, 9 oz little girl, Zarlee Rose, 9:25am on December 13th. Several people have asked how that was coming; apparently all is well, Mom is beaming. Send congratulations, etc, to the SMA Association of Australia, and say “Hi” to my Mates, while you are there. We are still proud members of the SMAAA. More details to follow, as they become available.
THIS little beastie is our newest addition to the family. Please note, from where you sit the smell of brimstone is probably mild. His name is Pixel, and enjoys being eaten by our Welsh Corgi, Nixon. Really.
It is incredibly funny, how they look like a war is in progress, but sleep curled up together. This picture is of Pixel sleeping with Sam, an older cat of ours.
As this is becoming lengthy enough to bind and publish, I want to close this Report with warm regards to everyone that receives it;
whether it is sent directly to you, or forwarded to others, MERRY CHRISTMAS, and have a SAFE and HAPPY NEW YEAR! …I look forward to sending out a post-Holiday Report, and would love to hear from anyone, regarding Logan, this Report, or anything you would like to bring up. Whatever you do for the Seasons, we hope you all have a ball!From all of us, here at Logan Central; Deb, Sean, Alicia, Logan, and me, to all of you- HAPPY HOLIDAYS!!
Friday, June 30. 2006
6-13-06
6-13-06
The Peanut Report...
Well it has certainly been too long, but I have finally found the time to get another Peanut Report written. A lot has happened, but I will attempt to put it all into this report. I am testing a new program, which allows me to speak, and have the computer type what I say, although it is still not learned my speech patterns as well as I would like. It does learn over time, however, so in the future that should be easier.
SMA notwithstanding, Logan is doing fairly well. Although his secretions do not seem to be any better, they are certainly not worse. Desats are few and far between, for the most part, and other than his low minute volume alarm being deactivated, his vent settings remain the same. For those of you not familiar with his medications, he is still taking Robinul to dry his secretions, vitamin C to help prevent colds, Appearex for his hair and nails, and finally, Poly-Vi-Sol as a multivitamin, in his food. The medications and dosages thereof have remained unchanged since late January.
The little man has been playing with switch toys, thanks to an anonymous donor. He
has a rough time using the switches, but enjoys the toys, when assisted. He has gotten some new books, including several of my old books, such as "Horton Hatches the Egg," by Dr. Seuss, and newer books, such as "The True Story of the Three Little Pigs, As Told by the Wolf." This of course is as amusing for me, as it is entertaining for Logan; perhaps more so. Apparently, the big bad Wolf got a bum rap, or so he claims. He continues to be entranced by SpongeBob Square Pants, and never tires of the antics of undersea life. I'm currently undertaking a project involving the collection of all episodes of said show for him. Following this I'm going to attempt to obtain as much Sesame Street, as I can get my hands on. Perhaps after that, I will work on the old school, Muppet show; that is certainly something I would be as interested in, as I hope would he.
We are also undertaking the project of refurbishing the Kid Cart, which we obtained from the SMA equipment pool. A representative of a local equipment supplier and maintenance
company will be arriving tomorrow afternoon; (Monday the 22nd) in order to determine exactly what is needed to bring the Kid Cart up to specs. We have put him in the chair, in order to get him used to it, and have brought him outside in it as well as used it for one trip to the hospital, for his routine checkup. Hopefully things will go smoothly with its renovations. I had hoped to go to the SMA Walk, in Dracut, Massachusetts, however, between the rain, Logan's chair, not being up to snuff, and Deb having eye problems, once again, it seems we will have to miss out on the action. This is unfortunate, as apparently Debbie's grandmother lives on the road upon which the walk will take place.
As to his Versa Form, I believe I reported it as being a very useful product in the last peanut report. It has however been so long that short of looking it up, I will merely give the full summary of the last several months' usage. These products have exceeded my already high expectations, both in (pardon the pun) versatility, as well as utility. I have been able to use these products with Logan for numerous positions; lying in bed, sitting up, both upright, as well as reclined. I have been able to place him on his side, with minimal pressure on the shoulder, and good posture, for his spine. These products can be made extremely firm, enabling me to carry him in it like a Tumble Form chair. I am also able to leave the valves open, causing the mattresses to resemble beanbag chairs, select any variable firmness in between. Rather than purchased the covers, however, I merely use of folded up blanket, such as Logan's B4SMA blanket, a chuck, and a light cotton blanket on top. These layers provide cushioning, moisture protection, and absorbency, respectively. All said and done, I can nestle Logan in his Versa Form, like an egg in its carton, or a hippie in a groovy bean bag chair. Oh, yes, he seems relatively happy with it as well.
Since I'm showing you a picture of him sitting in his Versa Form, I can also show you
his new Do rag, compliments of Mr. Fisher and family. It is I admit a little early for my shout outs, however, a 2-for-1 picture is too good to pass up. I think he looks extremely cute in it, although it covers up his stylish hairdo. Speaking of new articles of clothing, I was overjoyed yesterday when I received a package from UPS, which had been sent to me by Angela King, from Pulmonetics. Upon opening it, I found a stack of double-sided letter sized glossy handouts, with my article and photos. These are sent out to customers, potential clients, and medical facilities. The package also contained two extra-large sweatshirts, bearing the name and logo for Apria-Biomed over the left breast. What made me extremely pleased to see the sweatshirts, however, was the 6" x 9" photo of Logan on the back, with the slogan "Maintenance for Life." Since I'm already early handing out "shout outs," I would like to send a huge thank you to Miss King, whom we all adore. The health care companies of Pulmonetics, as well as Apria, are companies with which I am extremely pleased; for excellent service, and thoughtful consideration of the client.
In regards to the "Close to Home," section of the Peanut Report, Logan's grandmother (my mother) is doing reasonably well, all things considered. In spite of her surgery and chemotherapy, she is looking very well, which I saw for myself last Friday. She and my stepfather Dan made a special trip up to spoil the Peanut. He did however, all asleep on the two of them, and didn't wake up until five minutes after they left. Goes to show you what a little booger he is. Despite this attribute of his, I have still been spoiling him with season three of Sponge Bob Square Pants, which I recently acquired for him. (Spoiled, spoiled, spoiled, but he is most certainly worth it.) Logan’s Auntie Cyndi, Debbie's sister, was thrown from her horse last week, but with the exception of some cuts, bruises, and a significant concussion, she seems to be OK. Thank someone for small favors; it certainly could have been a lot worse. Finally, since it's close to home, southern New Hampshire is still in joining a severely rainy spring. We have seen news reports regarding mudslides,(not the good kind) flooding to the extent of houses floating off their foundations, and now issues regarding sewer backups and potential damage to the main transport pipe of the sewer system, due to the saturated ground. We're looking into getting a generator, and attempting to find a good electrician to help me change our main service panel. On the lighter side of things, we were receiving a discounted electrical rate from P.S.N.H., a.k.a. Public Service of New Hampshire; however, apparently, the funds for this easement have been exhausted, therefore, our rates are up to normal. Woe is us! Rather than be bitter about this, I try to appreciate the help they did provide. C'est la vie! Our house has not washed away, the floods in my basement have subsided, and Logan is well.
I'm not generally a strict reader of Dear Abby columns, however, both my mother and Debbie independently clipped, one of her articles. At my wife's request, I’m including a poem, written 50 years ago by a Miss Edna Massamilla, of Hatboro, Pennsylvania, the former wife of a pastor, in mother of a child with Down syndrome.
Heavens Very Special Child
"A meeting was held quite far from Earth
it was time again for another birth.
Said the Angels to the Lord above --
"this special Child will need much love.
Her progress may be very slow.
Accomplishment, she may not show.
And she'll require extra care.
From the folks she meets down there.
She may not run or laugh or play.
Her thoughts may seem quite far away.
So many times, she will be labeled.
" Different, helpless, and disabled."
So let's be careful where she sent.
We want her life to be content.
Please Lord, find the parents who.
Will do a special job for you.
They will not realize right away.
The leading role, they are asked to play.
But with this child sent from above.
Comes stronger faith, and richer love.
And soon they'll know the privilege given
in caring for their gift from heaven.
Their precious charge, so meek and mild.
Is heavens very special Child"
I hope you all will find something in this poem.
>
For those of you who are new to SMA support, or interested to learn about SMA, or merely interested in the Peanut Report , and have a correction, contribution, or even criticism, please feel free to contact me with questions or comments. I can be reached logans_run888@yahoo.com, or via Skype at logans_run 888.
For now, however, I believe I'm going to wrap up this Report with a brief paragraph, or so, regarding technical issues, useful sites, and helpful tips.
Re: Skype; this program has been bounced around SMA Support, as well as a number of my contacts and acquaintances. I have been pushing it, not for any benefit of my own, but for the fact is an extremely useful program, and I believe our children as well as our friends and family will find a plethora of uses for it. You can find the download for this program, (free, I might add) at www.Skype.com For those of you who are unaware, Skype out, or the ability to use your computer to call land lines or cell phones, is currently free. I might also add, this free offer is good until 2007. That's more than half the year, free long-distance, in the continental United States, as well as Canada. Sorry to all my other friends and contacts that live outside of these two countries, I am as yet unaware of any special offers regarding you. I will keep my ears out however.
I will also shamelessly plug Goodsearch, a web site which uses Yahoo as a search engine, and actually donates a penny (which does not sound like a lot) for every search you use it for. The more you use it, and the more you get others to use it, the more it adds up obviously. Whether it's $500, $5,000, or $50,000 +, by the end of the year, it's up to you; every bit helps. You can use this site to donate to any charitable organization, which is registered to Goodsearch; I personally use SMA Support, Kokomo Indiana. Simply visit www..Goodsearch.com -- I have this set as my homepage. If you had any problems finding what you're looking for, while using Goodsearch, simply move on to Google or some other search engine, but please make an attempt with Goodsearch first, as they do donate to charities.
I will also mention a pair of video games for mere entertainment purposes. These games are Mystery Case Files Huntsville, and Mystery Case Files Prime Suspects. Everyone I have shown these games to has found them fun and possibly addictive. Both of which are downloadable from reflexive.com. However, they are only demo versions, so if you find them enjoyable, you may be forced to spend a minimum fee for the full game. They do however provide hours of good clean entertainment, and depending on the age of your children, they are excellent puzzles to either help with, or play for themselves. Basically, they are fun for all ages.
I suppose I’ll close for now. I will try to get this Report out more reliably, but no promises; the day to day isn’t as structured as I’d like, and I am not as diligent as I would like to be. I am certain that I have overlooked some topics, which I meant to include this time around; however, I suppose it leaves more for the next issue.
Thank you to everyone, whether mentioned in this report or not; we sincerely appreciate all your efforts and thoughts, and love hearing from you. If there is anything you would like me to add to these reports, feel free to add comments.
Most sincerely,
Matt
http://www.goodsearch.com/Default.aspx
The Peanut Report...
Well it has certainly been too long, but I have finally found the time to get another Peanut Report written. A lot has happened, but I will attempt to put it all into this report. I am testing a new program, which allows me to speak, and have the computer type what I say, although it is still not learned my speech patterns as well as I would like. It does learn over time, however, so in the future that should be easier.
SMA notwithstanding, Logan is doing fairly well. Although his secretions do not seem to be any better, they are certainly not worse. Desats are few and far between, for the most part, and other than his low minute volume alarm being deactivated, his vent settings remain the same. For those of you not familiar with his medications, he is still taking Robinul to dry his secretions, vitamin C to help prevent colds, Appearex for his hair and nails, and finally, Poly-Vi-Sol as a multivitamin, in his food. The medications and dosages thereof have remained unchanged since late January.
The little man has been playing with switch toys, thanks to an anonymous donor. He
has a rough time using the switches, but enjoys the toys, when assisted. He has gotten some new books, including several of my old books, such as "Horton Hatches the Egg," by Dr. Seuss, and newer books, such as "The True Story of the Three Little Pigs, As Told by the Wolf." This of course is as amusing for me, as it is entertaining for Logan; perhaps more so. Apparently, the big bad Wolf got a bum rap, or so he claims. He continues to be entranced by SpongeBob Square Pants, and never tires of the antics of undersea life. I'm currently undertaking a project involving the collection of all episodes of said show for him. Following this I'm going to attempt to obtain as much Sesame Street, as I can get my hands on. Perhaps after that, I will work on the old school, Muppet show; that is certainly something I would be as interested in, as I hope would he.We are also undertaking the project of refurbishing the Kid Cart, which we obtained from the SMA equipment pool. A representative of a local equipment supplier and maintenance
company will be arriving tomorrow afternoon; (Monday the 22nd) in order to determine exactly what is needed to bring the Kid Cart up to specs. We have put him in the chair, in order to get him used to it, and have brought him outside in it as well as used it for one trip to the hospital, for his routine checkup. Hopefully things will go smoothly with its renovations. I had hoped to go to the SMA Walk, in Dracut, Massachusetts, however, between the rain, Logan's chair, not being up to snuff, and Deb having eye problems, once again, it seems we will have to miss out on the action. This is unfortunate, as apparently Debbie's grandmother lives on the road upon which the walk will take place.As to his Versa Form, I believe I reported it as being a very useful product in the last peanut report. It has however been so long that short of looking it up, I will merely give the full summary of the last several months' usage. These products have exceeded my already high expectations, both in (pardon the pun) versatility, as well as utility. I have been able to use these products with Logan for numerous positions; lying in bed, sitting up, both upright, as well as reclined. I have been able to place him on his side, with minimal pressure on the shoulder, and good posture, for his spine. These products can be made extremely firm, enabling me to carry him in it like a Tumble Form chair. I am also able to leave the valves open, causing the mattresses to resemble beanbag chairs, select any variable firmness in between. Rather than purchased the covers, however, I merely use of folded up blanket, such as Logan's B4SMA blanket, a chuck, and a light cotton blanket on top. These layers provide cushioning, moisture protection, and absorbency, respectively. All said and done, I can nestle Logan in his Versa Form, like an egg in its carton, or a hippie in a groovy bean bag chair. Oh, yes, he seems relatively happy with it as well.
Since I'm showing you a picture of him sitting in his Versa Form, I can also show you
his new Do rag, compliments of Mr. Fisher and family. It is I admit a little early for my shout outs, however, a 2-for-1 picture is too good to pass up. I think he looks extremely cute in it, although it covers up his stylish hairdo. Speaking of new articles of clothing, I was overjoyed yesterday when I received a package from UPS, which had been sent to me by Angela King, from Pulmonetics. Upon opening it, I found a stack of double-sided letter sized glossy handouts, with my article and photos. These are sent out to customers, potential clients, and medical facilities. The package also contained two extra-large sweatshirts, bearing the name and logo for Apria-Biomed over the left breast. What made me extremely pleased to see the sweatshirts, however, was the 6" x 9" photo of Logan on the back, with the slogan "Maintenance for Life." Since I'm already early handing out "shout outs," I would like to send a huge thank you to Miss King, whom we all adore. The health care companies of Pulmonetics, as well as Apria, are companies with which I am extremely pleased; for excellent service, and thoughtful consideration of the client.In regards to the "Close to Home," section of the Peanut Report, Logan's grandmother (my mother) is doing reasonably well, all things considered. In spite of her surgery and chemotherapy, she is looking very well, which I saw for myself last Friday. She and my stepfather Dan made a special trip up to spoil the Peanut. He did however, all asleep on the two of them, and didn't wake up until five minutes after they left. Goes to show you what a little booger he is. Despite this attribute of his, I have still been spoiling him with season three of Sponge Bob Square Pants, which I recently acquired for him. (Spoiled, spoiled, spoiled, but he is most certainly worth it.) Logan’s Auntie Cyndi, Debbie's sister, was thrown from her horse last week, but with the exception of some cuts, bruises, and a significant concussion, she seems to be OK. Thank someone for small favors; it certainly could have been a lot worse. Finally, since it's close to home, southern New Hampshire is still in joining a severely rainy spring. We have seen news reports regarding mudslides,(not the good kind) flooding to the extent of houses floating off their foundations, and now issues regarding sewer backups and potential damage to the main transport pipe of the sewer system, due to the saturated ground. We're looking into getting a generator, and attempting to find a good electrician to help me change our main service panel. On the lighter side of things, we were receiving a discounted electrical rate from P.S.N.H., a.k.a. Public Service of New Hampshire; however, apparently, the funds for this easement have been exhausted, therefore, our rates are up to normal. Woe is us! Rather than be bitter about this, I try to appreciate the help they did provide. C'est la vie! Our house has not washed away, the floods in my basement have subsided, and Logan is well.
I'm not generally a strict reader of Dear Abby columns, however, both my mother and Debbie independently clipped, one of her articles. At my wife's request, I’m including a poem, written 50 years ago by a Miss Edna Massamilla, of Hatboro, Pennsylvania, the former wife of a pastor, in mother of a child with Down syndrome.
Heavens Very Special Child
"A meeting was held quite far from Earth
it was time again for another birth.
Said the Angels to the Lord above --
"this special Child will need much love.
Her progress may be very slow.
Accomplishment, she may not show.
And she'll require extra care.
From the folks she meets down there.
She may not run or laugh or play.
Her thoughts may seem quite far away.
So many times, she will be labeled.
" Different, helpless, and disabled."
So let's be careful where she sent.
We want her life to be content.
Please Lord, find the parents who.
Will do a special job for you.
They will not realize right away.
The leading role, they are asked to play.
But with this child sent from above.
Comes stronger faith, and richer love.
And soon they'll know the privilege given
in caring for their gift from heaven.
Their precious charge, so meek and mild.
Is heavens very special Child"
I hope you all will find something in this poem.
>
For those of you who are new to SMA support, or interested to learn about SMA, or merely interested in the Peanut Report , and have a correction, contribution, or even criticism, please feel free to contact me with questions or comments. I can be reached logans_run888@yahoo.com, or via Skype at logans_run 888.For now, however, I believe I'm going to wrap up this Report with a brief paragraph, or so, regarding technical issues, useful sites, and helpful tips.
Re: Skype; this program has been bounced around SMA Support, as well as a number of my contacts and acquaintances. I have been pushing it, not for any benefit of my own, but for the fact is an extremely useful program, and I believe our children as well as our friends and family will find a plethora of uses for it. You can find the download for this program, (free, I might add) at www.Skype.com For those of you who are unaware, Skype out, or the ability to use your computer to call land lines or cell phones, is currently free. I might also add, this free offer is good until 2007. That's more than half the year, free long-distance, in the continental United States, as well as Canada. Sorry to all my other friends and contacts that live outside of these two countries, I am as yet unaware of any special offers regarding you. I will keep my ears out however.
I will also shamelessly plug Goodsearch, a web site which uses Yahoo as a search engine, and actually donates a penny (which does not sound like a lot) for every search you use it for. The more you use it, and the more you get others to use it, the more it adds up obviously. Whether it's $500, $5,000, or $50,000 +, by the end of the year, it's up to you; every bit helps. You can use this site to donate to any charitable organization, which is registered to Goodsearch; I personally use SMA Support, Kokomo Indiana. Simply visit www..Goodsearch.com -- I have this set as my homepage. If you had any problems finding what you're looking for, while using Goodsearch, simply move on to Google or some other search engine, but please make an attempt with Goodsearch first, as they do donate to charities.
I will also mention a pair of video games for mere entertainment purposes. These games are Mystery Case Files Huntsville, and Mystery Case Files Prime Suspects. Everyone I have shown these games to has found them fun and possibly addictive. Both of which are downloadable from reflexive.com. However, they are only demo versions, so if you find them enjoyable, you may be forced to spend a minimum fee for the full game. They do however provide hours of good clean entertainment, and depending on the age of your children, they are excellent puzzles to either help with, or play for themselves. Basically, they are fun for all ages.
I suppose I’ll close for now. I will try to get this Report out more reliably, but no promises; the day to day isn’t as structured as I’d like, and I am not as diligent as I would like to be. I am certain that I have overlooked some topics, which I meant to include this time around; however, I suppose it leaves more for the next issue.
Thank you to everyone, whether mentioned in this report or not; we sincerely appreciate all your efforts and thoughts, and love hearing from you. If there is anything you would like me to add to these reports, feel free to add comments.
Most sincerely,
Matt
http://www.goodsearch.com/Default.aspx
Wednesday, March 1. 2006
The Peanut Report as of 2-23-06
2/23/2006
Back again by popular demand, I have been busy with a whole bunch of projects; Logan’s upkeep and entertainment, installing some new software, and countless other odds and ends. So sorry to everyone that has been writing and asking where we have been, and here is your regularly unscheduled dose.
We had an appointment with Dr. Stokes (Pulm.) last week, and Logan finally got an Rx for liquid Robinul. Can I just tell you all how much easier it is to administer- once you figure out how to get it out of the 2ml phials, which require a draw syringe/ needle. Good thing I’m a clever bugger, as we do not have that type of needle. He seems to tolerate the liquid at least as well, and doing away with the whole crushing and mixing process is invaluable. Thanks to the parents who helped my research in this, and a big thank you to Dr. Stokes for not only doing the research and writing the Rx so rapidly, but for taking all my questions and concerns so seriously; even the trivial ones.
I have, with several talented friends, been working on “business” cards for Logan, as well as myself. This is an ongoing process, as I want our cards to be professional, yet friendly. I also have another friend or two, working on designing the little man an unofficial “Logan-Logo”; unofficial for the moment, at least. I am looking at getting some T-shirts made up for him, and have several designs ready, pending the “pocket-spot logo.” Although I am hoping for my friend(s) to come up with something extraordinary, I would greatly appreciate ideas, suggestions, and “doodles”, as I like to be through in my planning before jumping into production. If I use someone’s work, the LEAST I would do is comp. a shirt with logo and design.
We have been getting artistic; Logan gets a little help, and we do some work on the media long with him, but his talent is only overshadowed by his enthusiasm. I bought him some markers, and his mom bought him some finger-paints, both of which seem to not only please him aesthetically, but look great all over him. He is fun to work with, and it is good physical therapy, as well as something to keep his mind busy. I have scanned some of his artwork into the PC, and will send it out as attachments upon request. (I guess I do requests, huh?) I will try to scan in his finger-painting results, but may have to take photos instead, as they do not sit flat in the scanner.
I have been doing research into Versa Form pillows/ mattresses for the little man’s comfort, as well as his physical AND mental well being. I can think of at least a half dozen reasons why he needs some of these, and I am working on getting his insurance to cover it. Regardless, I will be getting him some, if I have to buy it myself. I have two perfectly (?) good kidneys, and will be willing to part with one for the right price... His doctors, as well as several other medical contacts, have been quite receptive to my feelings on this subject, and should you be curious towards that which I am referring, please see the largest and second largest sizes of Versa Form at this link- http://www.tumbleforms.com/versaformplus.html : the whole site is packed with WONDERFUL stuff for disabled people, so I hope it comes in handy for some, if not all of you reading this.
We have a number of doctors going to write LMNs, or Letters of Medical Necessity, which appeal to insurance providers for their approval for funds. Ms. Toni Vaschon, a contact of ours at the Manchester CHAD, is an AMAZING advocate for Logan, in both special requests like the Versa Form, as well as the more common materials he needs monthly, which Toni is following up on. She does not rest until she knows her “clients” are well taken care of. Logan is either a lucky little guy, or VERY charismatic. (I say both.) His entire medical staff, from the surgeons and specialists, right down to the X-ray techs and phlebotomists, is astounding in their diligence, professionalism, and their tremendous warm regard for our little man. If it were in my power, every medical branch in the world would be as welcoming and professional as Dartmouth-Hitchcock, and the CHAD clinic. We have found our niche for Logan, and it may not be home, but they are certainly not places I fear for my son to go to.
We got a care package from our friends in Oz (Down Under); they spoil us rotten. Do NOT try Tim-Tam chocolate biscuits; they are worse than any addiction imaginable. YUMMERIFIC! Logan was spoiled as well; he now has some new stuffies, as well as his new book that his Dad LOVES to read to him. The package was wonderful, and all the treasures were greatly loved, as are all the Brownlaws. Here is Logan with his Wombat and Koala stuffies.
I am beginning to write. I have gotten my article printed in the New Hampshire Family Voices newsletter “Pass It On”, which can be found at www.nhfv.org , and another article has been written for Pulmonetics, the company which manufactures the respirator Logan is required to use. This article was my first effort at paid writing. It felt good to frame a copy of the check, although were I not going to spend the money on my family and Logan, the cause
was worthwhile enough to do for free, as well. I have, and will continue to write for the MDA, as well; I hope they keep me in mind when they need anything written, whether it is for the local branch, or anywhere they may be found. I have just supplied our local friends at the MDA, with a few photos to aid in their efforts regarding a "Fill the Boot" campaign. Co-hosted by the vast majority of Firefighters in the area...as well as those a bit more distant, I believe, this fund raiser is intended to help support neuromuscular research. I am a HUGE fan of the MDA, and they can be reached at www.mdausa.org so check them out if you have the time, and bookmark them. I have done some other bits and pieces, as well, but I am now undertaking to write stories for Logan. I will be looking to my friend Susan and, perhaps, her future brother in law Thatcher, to do some illustrating for me. Time will tell as to their availability and what not; they do have hectic lives of their own, but I’m persistent.
I have also decided to add a website recommendation to The Peanut Report. I figure if it gets a few positive results, it won’t be for naught. The first official site is a program download which I have pushed to several friends, to date. It is for free communication between computers using internet capabilities, a microphone, and your speakers, or headphones. The link for downloading the program is www.skype.com . Very easy to operate, and I will respond to any specific questions posted to me, including how to contact me via Skype, of course.
For neat little household tips, which I will call “From the Parents” I am passing along a great tip for making syringes last longer. If you are getting them through your insurance, you probably have to make them stretch a bit longer than they like to last, and by some advice from friends and fellow parents, on the SMA Support Chat; I am told that a little denture cleaner is the way to get them clean without harsh or abrasive soaps, and to keep the numbers and marking lines clear, present, and legible, a light coating of nail polish will prevent them from wearing off. I can’t seem to find the originator of the idea, but Ms. Tammy McDanel mentioned putting a little bit of oil (I think mineral would be best) on the plungers to keep them sliding freely. I will be more than happy to accredit the person who came up with the nail polish/ denture tablet idea; write me so I can add your name to chat.
“That a-bd’eah, a-bd’eah, a-bd’eah…That’s All, Folks.” See you in the Funny Pages, and a HUGE Thank you to Mr. Ken Morreale, RN., for making it possible to get this Report done. It is great to know Logan has such a good guy hanging with him to give me a little time to write this and more, without worrying that he is not entertained, or lonely.
That’s My Report, and I am sticking to it…
Father of the Peanut
Matt Watts
Back again by popular demand, I have been busy with a whole bunch of projects; Logan’s upkeep and entertainment, installing some new software, and countless other odds and ends. So sorry to everyone that has been writing and asking where we have been, and here is your regularly unscheduled dose.
We had an appointment with Dr. Stokes (Pulm.) last week, and Logan finally got an Rx for liquid Robinul. Can I just tell you all how much easier it is to administer- once you figure out how to get it out of the 2ml phials, which require a draw syringe/ needle. Good thing I’m a clever bugger, as we do not have that type of needle. He seems to tolerate the liquid at least as well, and doing away with the whole crushing and mixing process is invaluable. Thanks to the parents who helped my research in this, and a big thank you to Dr. Stokes for not only doing the research and writing the Rx so rapidly, but for taking all my questions and concerns so seriously; even the trivial ones. I have, with several talented friends, been working on “business” cards for Logan, as well as myself. This is an ongoing process, as I want our cards to be professional, yet friendly. I also have another friend or two, working on designing the little man an unofficial “Logan-Logo”; unofficial for the moment, at least. I am looking at getting some T-shirts made up for him, and have several designs ready, pending the “pocket-spot logo.” Although I am hoping for my friend(s) to come up with something extraordinary, I would greatly appreciate ideas, suggestions, and “doodles”, as I like to be through in my planning before jumping into production. If I use someone’s work, the LEAST I would do is comp. a shirt with logo and design.
We have been getting artistic; Logan gets a little help, and we do some work on the media long with him, but his talent is only overshadowed by his enthusiasm. I bought him some markers, and his mom bought him some finger-paints, both of which seem to not only please him aesthetically, but look great all over him. He is fun to work with, and it is good physical therapy, as well as something to keep his mind busy. I have scanned some of his artwork into the PC, and will send it out as attachments upon request. (I guess I do requests, huh?) I will try to scan in his finger-painting results, but may have to take photos instead, as they do not sit flat in the scanner.
I have been doing research into Versa Form pillows/ mattresses for the little man’s comfort, as well as his physical AND mental well being. I can think of at least a half dozen reasons why he needs some of these, and I am working on getting his insurance to cover it. Regardless, I will be getting him some, if I have to buy it myself. I have two perfectly (?) good kidneys, and will be willing to part with one for the right price... His doctors, as well as several other medical contacts, have been quite receptive to my feelings on this subject, and should you be curious towards that which I am referring, please see the largest and second largest sizes of Versa Form at this link- http://www.tumbleforms.com/versaformplus.html : the whole site is packed with WONDERFUL stuff for disabled people, so I hope it comes in handy for some, if not all of you reading this.
We have a number of doctors going to write LMNs, or Letters of Medical Necessity, which appeal to insurance providers for their approval for funds. Ms. Toni Vaschon, a contact of ours at the Manchester CHAD, is an AMAZING advocate for Logan, in both special requests like the Versa Form, as well as the more common materials he needs monthly, which Toni is following up on. She does not rest until she knows her “clients” are well taken care of. Logan is either a lucky little guy, or VERY charismatic. (I say both.) His entire medical staff, from the surgeons and specialists, right down to the X-ray techs and phlebotomists, is astounding in their diligence, professionalism, and their tremendous warm regard for our little man. If it were in my power, every medical branch in the world would be as welcoming and professional as Dartmouth-Hitchcock, and the CHAD clinic. We have found our niche for Logan, and it may not be home, but they are certainly not places I fear for my son to go to.
We got a care package from our friends in Oz (Down Under); they spoil us rotten. Do NOT try Tim-Tam chocolate biscuits; they are worse than any addiction imaginable. YUMMERIFIC! Logan was spoiled as well; he now has some new stuffies, as well as his new book that his Dad LOVES to read to him. The package was wonderful, and all the treasures were greatly loved, as are all the Brownlaws. Here is Logan with his Wombat and Koala stuffies.I am beginning to write. I have gotten my article printed in the New Hampshire Family Voices newsletter “Pass It On”, which can be found at www.nhfv.org , and another article has been written for Pulmonetics, the company which manufactures the respirator Logan is required to use. This article was my first effort at paid writing. It felt good to frame a copy of the check, although were I not going to spend the money on my family and Logan, the cause
was worthwhile enough to do for free, as well. I have, and will continue to write for the MDA, as well; I hope they keep me in mind when they need anything written, whether it is for the local branch, or anywhere they may be found. I have just supplied our local friends at the MDA, with a few photos to aid in their efforts regarding a "Fill the Boot" campaign. Co-hosted by the vast majority of Firefighters in the area...as well as those a bit more distant, I believe, this fund raiser is intended to help support neuromuscular research. I am a HUGE fan of the MDA, and they can be reached at www.mdausa.org so check them out if you have the time, and bookmark them. I have done some other bits and pieces, as well, but I am now undertaking to write stories for Logan. I will be looking to my friend Susan and, perhaps, her future brother in law Thatcher, to do some illustrating for me. Time will tell as to their availability and what not; they do have hectic lives of their own, but I’m persistent. I have also decided to add a website recommendation to The Peanut Report. I figure if it gets a few positive results, it won’t be for naught. The first official site is a program download which I have pushed to several friends, to date. It is for free communication between computers using internet capabilities, a microphone, and your speakers, or headphones. The link for downloading the program is www.skype.com . Very easy to operate, and I will respond to any specific questions posted to me, including how to contact me via Skype, of course.
For neat little household tips, which I will call “From the Parents” I am passing along a great tip for making syringes last longer. If you are getting them through your insurance, you probably have to make them stretch a bit longer than they like to last, and by some advice from friends and fellow parents, on the SMA Support Chat; I am told that a little denture cleaner is the way to get them clean without harsh or abrasive soaps, and to keep the numbers and marking lines clear, present, and legible, a light coating of nail polish will prevent them from wearing off. I can’t seem to find the originator of the idea, but Ms. Tammy McDanel mentioned putting a little bit of oil (I think mineral would be best) on the plungers to keep them sliding freely. I will be more than happy to accredit the person who came up with the nail polish/ denture tablet idea; write me so I can add your name to chat.
“That a-bd’eah, a-bd’eah, a-bd’eah…That’s All, Folks.” See you in the Funny Pages, and a HUGE Thank you to Mr. Ken Morreale, RN., for making it possible to get this Report done. It is great to know Logan has such a good guy hanging with him to give me a little time to write this and more, without worrying that he is not entertained, or lonely.
That’s My Report, and I am sticking to it…
Father of the Peanut
Matt Watts
Sunday, February 5. 2006
The Peanut Report 01-20-06
The PEANUT REPORT 02.05.06
Greetings and salutations; time to shout out to the friends and family who follow along with us on our updates on the Peanut. I suppose it’s been long enough since the last Report, so I will start off with the fact that Logan has been doing relatively well, and there have been no great disasters in the interim. (Knock on wood)
Starting off with what’s going on with the little man, he has met, and seemed to like his new primary care physician, one Dr. Elizabeth Olsen. She is a Dartmouth-Hitchcock doctor, and therefore well in the loop for his medical history from Lebanon. She is local, in Manchester, and can be looked up, along with all his other doctors from DHMC, at Dr.Olson, DHMC Manchester Should anyone be interested in any of his other doctors, or need an EXCELLENT physician of some sort, from this link, click on FIND A DOCTOR, near the top left, and type the name or field in, that you are interested in.
We also, on the same visit, had the great pleasure to make the acquaintance of Ms. Toni Vachon, RN, C BS, who is in Pediatric Care Management in Manchester. An excellent coordinator for the doctor appointments Logan has at DHMC, she managed to make time to meet us at the time we had scheduled with Dr. Olson, and facilitated our meeting with Dr. Pamela Hofley, his local gastroenterologist and nutritional advisor. Logan still has his Lebanon contacts, but we are extremely lucky to have such excellent medical staff across town, as well as two hours away. Logan, of course, was in full cute mode; everyone seemed pretty pleased to meet his acquaintance as well.
Logan also visited his new Dentist, as well as Dr. Torunn Rhodes, the MD who gave Logan his Synergis shot(s). Things went well at both clinics, and thanks to Grampy Dan, we had a pretty good boys day out, around the town. We even went so far as to visit my old place of employment, AAA Pump Svc. Logan had a pretty good day going for a ride in a truck. Good timing, too. The three hour battery we hooked up at 10:30 am, finally discharged at about 3:20 pm. That was the first time I had ever used the one battery that long, and we did have our second 3 hr battery, but I let the internal vent battery run for the 5 minutes it took to get him inside. Pulmonetics makes good products.
My Father was up, not last weekend, but the weekend before. Here’s a classic photo, skipping a generation. (Namely me)
Apparently our DME supplier has changed; I received a letter on the second of February, letting me know that as of the first (of Feb.) Cigna Healthcare would be switching services from CareCentrix to Apria Healthcare. We will see how smoothly this transition goes. Currently I have a few issues that were in the process of being addressed, so I believe I will have to confirm that my agenda is still being attended to.
I am working from home now. There is virtually no chance of me finding full time work due to Logan’s needs, and our family schedule, so I am attempting to break into the writing business. Maybe in a year or two, I can publish a novel. Until then, I believe I have sold an article, which would be my first literary work sold for profit. I am extremely optimistic that with enough of a foot in the door, I can “write” my own paychecks, ha-ha. In the meantime, though, this is Logan Central Processing, where I organize his files, fax his docs and Rexes, and communicate with everyone involved, be it friends, family, medical or supply contact, or just folk who are involved by choice. The child gate is to keep our pesky Corgi, Nixon, out of our “no fly zone”.
Well, I’ll keep this short and sweet. We’re putting our heads together here, in order to keep things moving in the right
direction. Between his new medical contacts, the new products I am looking into getting him, and all the people who have called, dropped by, offered help, or advice, and have changed their schedules to accommodate us, we seem to be moving into 06” with some optimism. One of our fellow SMA parents has just announced a new pregnancy, so there is some more positive news. A fellow family, the Fishers, have finally brought their daughter, Shira, home from the PICU in Victoria, B.C., Canada, which is more good stuff to report.
A super huge thanks, to all the medical staff from Dartmouth-Hitchcock, in Lebanon, Manchester, and Bedford; we appreciate all your determination and efforts. The doctors, nursing staff, administration type people and all the other employees we met were all a cut above the norm, and we feel very confident that we are in the best place possible for Logan and his interests.
HELLO TO HIS FRIENDS IN THE PICU, WHICH IS LONG OVERDUE:
To see the hospital in Lebanon, where we lived for so long, visit Dartmouth-Hitchcock Medical Center (DHMC) at Dartmouth Hitchcock, Lebanon
To the Respiratory staff consisting in part as Dr. Dennis Stokes, Pulmonology, Laura Nagi (Ms. Green Eggs and Ham, herself), Marjorie Jenna, Frank Spear, Chris Germana, Becka Egner, Matt McNally; Patrick, who is as knowledgeable as he is tall, and Bill Jarvis, who taught us so much about the vent.
The Nursing staff, some of which were folk like Michael Kinderet, John Flynn, Justin Harris, Andrea Broughton, Marybeth Flynn, Chuck Dearing, Laura Madden, Carrie Tatrault, Marcy Singleton (N.P.), Renee Gaffney, Tina Sault (RNC), Stephanie, Rachel, and Sarah; the future Mrs. Logan. These were the ladies and gentlemen who were his day-to-day support, his entertainment, his caretakers, and his friends.
His Pediatricians, Dr. Daniel Levin, Dr. Terry, Dr. Edwards (gastroenterology), Dr. Benoit Gosselin, Sholeen Nitt, Josh Kantrowitz, Todd Poret, and Claire; Excellent rapport, good to work with, and always ready to listen to my theories and opinions.
And to the Therapists: Ms. Gina Bruck, Speech Pathologist, Jessica, Andrea, and Karen Elphick, the PT with a PAIR of good heads on her shoulders; a big thank you for the hands on work you did on Logan, as well as the bedside manner.
I KNOW I have missed some people; there were so many wonderful folk to whom we were introduced. I am sure there are some misspellings, and I am missing some last names, as we were on a first name basis with almost everyone. I am also appreciative towards such folk as Scott Slogic, Director of Respiratory, and Filomena Kersey, Nutrition; Irene, in administration. Please contact me if you are misrepresented, or I have overlooked you. I have the utmost respect for all of you, and I would love to have you all properly exhibited in Logan’s webpage.
That appears to be all, for now. Long days, and pleasant nights to you all, and here’s to a positive year here in 06
Matt,
Peanut Central
Greetings and salutations; time to shout out to the friends and family who follow along with us on our updates on the Peanut. I suppose it’s been long enough since the last Report, so I will start off with the fact that Logan has been doing relatively well, and there have been no great disasters in the interim. (Knock on wood)
Starting off with what’s going on with the little man, he has met, and seemed to like his new primary care physician, one Dr. Elizabeth Olsen. She is a Dartmouth-Hitchcock doctor, and therefore well in the loop for his medical history from Lebanon. She is local, in Manchester, and can be looked up, along with all his other doctors from DHMC, at Dr.Olson, DHMC Manchester Should anyone be interested in any of his other doctors, or need an EXCELLENT physician of some sort, from this link, click on FIND A DOCTOR, near the top left, and type the name or field in, that you are interested in.
We also, on the same visit, had the great pleasure to make the acquaintance of Ms. Toni Vachon, RN, C BS, who is in Pediatric Care Management in Manchester. An excellent coordinator for the doctor appointments Logan has at DHMC, she managed to make time to meet us at the time we had scheduled with Dr. Olson, and facilitated our meeting with Dr. Pamela Hofley, his local gastroenterologist and nutritional advisor. Logan still has his Lebanon contacts, but we are extremely lucky to have such excellent medical staff across town, as well as two hours away. Logan, of course, was in full cute mode; everyone seemed pretty pleased to meet his acquaintance as well.
Logan also visited his new Dentist, as well as Dr. Torunn Rhodes, the MD who gave Logan his Synergis shot(s). Things went well at both clinics, and thanks to Grampy Dan, we had a pretty good boys day out, around the town. We even went so far as to visit my old place of employment, AAA Pump Svc. Logan had a pretty good day going for a ride in a truck. Good timing, too. The three hour battery we hooked up at 10:30 am, finally discharged at about 3:20 pm. That was the first time I had ever used the one battery that long, and we did have our second 3 hr battery, but I let the internal vent battery run for the 5 minutes it took to get him inside. Pulmonetics makes good products.
My Father was up, not last weekend, but the weekend before. Here’s a classic photo, skipping a generation. (Namely me)
Apparently our DME supplier has changed; I received a letter on the second of February, letting me know that as of the first (of Feb.) Cigna Healthcare would be switching services from CareCentrix to Apria Healthcare. We will see how smoothly this transition goes. Currently I have a few issues that were in the process of being addressed, so I believe I will have to confirm that my agenda is still being attended to.
I am working from home now. There is virtually no chance of me finding full time work due to Logan’s needs, and our family schedule, so I am attempting to break into the writing business. Maybe in a year or two, I can publish a novel. Until then, I believe I have sold an article, which would be my first literary work sold for profit. I am extremely optimistic that with enough of a foot in the door, I can “write” my own paychecks, ha-ha. In the meantime, though, this is Logan Central Processing, where I organize his files, fax his docs and Rexes, and communicate with everyone involved, be it friends, family, medical or supply contact, or just folk who are involved by choice. The child gate is to keep our pesky Corgi, Nixon, out of our “no fly zone”.
Well, I’ll keep this short and sweet. We’re putting our heads together here, in order to keep things moving in the right
direction. Between his new medical contacts, the new products I am looking into getting him, and all the people who have called, dropped by, offered help, or advice, and have changed their schedules to accommodate us, we seem to be moving into 06” with some optimism. One of our fellow SMA parents has just announced a new pregnancy, so there is some more positive news. A fellow family, the Fishers, have finally brought their daughter, Shira, home from the PICU in Victoria, B.C., Canada, which is more good stuff to report. A super huge thanks, to all the medical staff from Dartmouth-Hitchcock, in Lebanon, Manchester, and Bedford; we appreciate all your determination and efforts. The doctors, nursing staff, administration type people and all the other employees we met were all a cut above the norm, and we feel very confident that we are in the best place possible for Logan and his interests.
HELLO TO HIS FRIENDS IN THE PICU, WHICH IS LONG OVERDUE:
To see the hospital in Lebanon, where we lived for so long, visit Dartmouth-Hitchcock Medical Center (DHMC) at Dartmouth Hitchcock, Lebanon
To the Respiratory staff consisting in part as Dr. Dennis Stokes, Pulmonology, Laura Nagi (Ms. Green Eggs and Ham, herself), Marjorie Jenna, Frank Spear, Chris Germana, Becka Egner, Matt McNally; Patrick, who is as knowledgeable as he is tall, and Bill Jarvis, who taught us so much about the vent.
The Nursing staff, some of which were folk like Michael Kinderet, John Flynn, Justin Harris, Andrea Broughton, Marybeth Flynn, Chuck Dearing, Laura Madden, Carrie Tatrault, Marcy Singleton (N.P.), Renee Gaffney, Tina Sault (RNC), Stephanie, Rachel, and Sarah; the future Mrs. Logan. These were the ladies and gentlemen who were his day-to-day support, his entertainment, his caretakers, and his friends.
His Pediatricians, Dr. Daniel Levin, Dr. Terry, Dr. Edwards (gastroenterology), Dr. Benoit Gosselin, Sholeen Nitt, Josh Kantrowitz, Todd Poret, and Claire; Excellent rapport, good to work with, and always ready to listen to my theories and opinions.
And to the Therapists: Ms. Gina Bruck, Speech Pathologist, Jessica, Andrea, and Karen Elphick, the PT with a PAIR of good heads on her shoulders; a big thank you for the hands on work you did on Logan, as well as the bedside manner.
I KNOW I have missed some people; there were so many wonderful folk to whom we were introduced. I am sure there are some misspellings, and I am missing some last names, as we were on a first name basis with almost everyone. I am also appreciative towards such folk as Scott Slogic, Director of Respiratory, and Filomena Kersey, Nutrition; Irene, in administration. Please contact me if you are misrepresented, or I have overlooked you. I have the utmost respect for all of you, and I would love to have you all properly exhibited in Logan’s webpage.
That appears to be all, for now. Long days, and pleasant nights to you all, and here’s to a positive year here in 06
Matt,
Peanut Central
Saturday, January 21. 2006
The Peanut Report 01-20-06
Had a good Christmas
Hello, all, late breaking news here. We've had a huge contribution, thanks to Mr. Tim Brownlaw, Aussie Extraordinaire, in the amount of one blog/ website. Address being
http://peanut.smaaustralia.com/
I have been learning how to add to it and upgrade the posts. Fortunately Tim is an excellent teacher. I'm thrilled about it, especially since he did all this unasked, and because he seems partial to Logan, 1/2 a world away. Thank you Mr. Brownlaw, for making things just a little better,
Please feel free to click on comments, and add your opinions, or hellos, or suggestions. I'll be adding to the
site, just as soon as I know I can, and am able to learn more about how to work with it.Logan is doing well. I'll be posting a short video clip, if possible, sometime in the foreseeable future, but no date scheduled yet. His Appearex RX has run out, I'm still working on a replacement; fortunately it's just a vitamin supplement. I'm still looking into the AA diet (Amino acid diet) for him, although obviously that will entail doctor/ nutritionist approval. Logan has an appointment later this week with a Ms. Lovely, his local nutritionist, so I'll corner her about that, then. Also, I'm still wanting the liquid Robinol, pending Doc approval, so as you can see, our wish list just keeps growing. Hopefully we'll get an answer soon.
Boo and I got some great napping in the other day; my mom and Dan were up earlier in the day, along with
our longtime friend of the family, Evelyn. (Evvie, as it so happens, makes the absolute best Pirogues, and Golabkis, and more. Some of my fondest memories as a child are eating like a Pole....) they had a good visit with my little Dumpling, and neglected to bring home the CD I had made of the Video Peanut Christmas. Unfortunately, we gorged on pizza and that tired me right out. I think the Grammy visit tired Boo out, she loves him, and just keeps on playing with him, and reading to him. So much Grammy, so little time, lol.We also have a Fax machine, on our regular phone line, so if you need to send us something that way, call first, so I can set the machine, or just try your luck.
Logan and I, along with my mother, step-dad, and most likely my Wife, will be attending a Republican event in Milford, NH, on the 27th of January. I have just become extremely active towards State assistance for parents who are stay-at-home for their children's medical necessities. My only regret is I did not start sooner, but here I am. Also, I fully intend, regardless of the in-State results, to make a Federal Case out of this issue, as I don't believe ANYONE should walk into this nightmare without being able to afford to live AND care for loved ones.Â
Recently back from an appointment at the NH Employment Services Offices. I.e. Unemployment. Apparently, under NH State law, I do NOT qualify for unemployment benefits, although I have been employed relatively consistently for the last decade or so, and such. Yet another shining example of a caring, dependable beauracracy at work. I love how the folk who work hard to get ahead get the shaft, and folk who like to work the system for personal gain can just sit back on their rear ends and collect.....
I hope anyone of like mind, or with the proper resources and connections will either aid with time, materials, manpower, or just a very loud voice. Please E-mail me if you are interested. I appreciate luck and well-wishes, but obviously action speaks louder than words.
CALL YOUR CONGRESSMEN, TALK TO YOUR REPRESENTATIVES, AND COMMUNICATE WITH THOSE PEOPLE WHO ARE IN LIKE CIRCUMSTANCES. And remember; There but for the Grace of God........So lend a hand, spread the word.
Anyway, this was just a brief update to inform you all of the new web address, and stir up support. Please
Mommy and Boo say Hello to You!
Watch our dust, as we speed into 06---
And here's to a cure in the coming year.
Fondly, and with warmest regards,
Matt, Deb, and Logan
Saturday, January 14. 2006
List of Pictures
WELCOME TO MY LITTLE PEANUT'S NEW WEB SITE, COMPLIMENTS OF TIM BROWNLAW, ONE OF THE NICEST GUYS I KNOW IN AUSTRALIA......THANKS TIM, I'M INDEBTED TO YOU FOR YOUR ASSISTANCE
This is a little sample of the photos I have up on the site so far....In no particular order as yet...
Please note, we look pretty well, together, if I do say so myself. All these pictures are before his first hospitilization with Pneumonia.
I am a little biased, but you can see he is a fine looking young man. I'm pretty fond of him, to say the least.
This is a little sample of the photos I have up on the site so far....In no particular order as yet...
Please note, we look pretty well, together, if I do say so myself. All these pictures are before his first hospitilization with Pneumonia.
I am a little biased, but you can see he is a fine looking young man. I'm pretty fond of him, to say the least.
The Parts List as of 21 Nov 2005
SPECIAL UPDATE: The Parts List as of 11/21/05
Devices my son, Logan uses are a Pulmonetic LTV950 vent (respirator)
which alot of people apparently think is the best thing since bread. (Yes- even better than the SLICED kind, lol) I'd be more fond of it, were I not still getting used to my son sounding like Darth Vader..although, hmmmm, the Force is strong with this one.....
Information can be accessed at http://www.pulmonetic.com/index.aspx?344215783
His Pulse-Oximeter is a General Electric Ohmeda TruSat, with 02 sat, heartrate, audible pulse if desired, etc. We do NOT have a CO2 meter on the vent, and I'd recommend one, but I'm not a scientist or a PhD, so what do I know.
His suction units kind of disappoint me, as I'm used to the permanent mounted hospital versions, and the home game is kind of ummmmm...simple, for lack of a better word. And loud, sounds like a prop plane from a couple hundred feet away.....2 DeVilBiss Portable Suction,1 with + one without internal battery
And an Emerson Cough Assist Device.
The cough assist is a daily-use item, and gets everything loosened, as well as up and out.
It hooks directly up to his in-line catheter, so we can use the cough assist while suctioning at the same time. I am a HUGE advocate of this combination, as it allows me to clear him without four or five hands at my disposal. As this machine is not very mainstream yet, send this link to whomever can use the education, or simply to answer some questions: http://www.jhemerson.com/coughassist.htm
He's trying to talk through the archway between the computer area and my bed, in which he's laying down. I've never been happier than hearing "DAR" and "HEHR" and funny words like that.
Nonsense sounds pretty good right now.
Back to business, his food pump is pretty sweet.
If you have experience with the hospital feed pumps (I know, I Know, What is a hospital, right?) you probably had one whose alarm was at least as bad as a desat alarm, and no volume control. I woke up in terror more than once because a 500cc dose of food was done. Hooray for 3am. Logan's pump is an EnteraLite, which is small, quiet, efficient. More information can be found at the following link: Enteralite Webpage and instruction guide link
Anyway, this is the main list od devices my son uses. There is a whole contingent of little parts, pieces, and odds and ends, like catheters and trachs, etc. Maybe I'll arrange a collage at some point, but, alas, here is what I have done, so here is what there is. If anyone has any questions regarding these machines, or more, please feel free to contact us either here on the website, or directly at;
logans_run888@yahoo.com
we love the correspondence.
Devices my son, Logan uses are a Pulmonetic LTV950 vent (respirator)
which alot of people apparently think is the best thing since bread. (Yes- even better than the SLICED kind, lol) I'd be more fond of it, were I not still getting used to my son sounding like Darth Vader..although, hmmmm, the Force is strong with this one.....
Information can be accessed at http://www.pulmonetic.com/index.aspx?344215783
His Pulse-Oximeter is a General Electric Ohmeda TruSat, with 02 sat, heartrate, audible pulse if desired, etc. We do NOT have a CO2 meter on the vent, and I'd recommend one, but I'm not a scientist or a PhD, so what do I know.
His suction units kind of disappoint me, as I'm used to the permanent mounted hospital versions, and the home game is kind of ummmmm...simple, for lack of a better word. And loud, sounds like a prop plane from a couple hundred feet away.....2 DeVilBiss Portable Suction,1 with + one without internal battery
And an Emerson Cough Assist Device.
The cough assist is a daily-use item, and gets everything loosened, as well as up and out.
It hooks directly up to his in-line catheter, so we can use the cough assist while suctioning at the same time. I am a HUGE advocate of this combination, as it allows me to clear him without four or five hands at my disposal. As this machine is not very mainstream yet, send this link to whomever can use the education, or simply to answer some questions: http://www.jhemerson.com/coughassist.htm
He's trying to talk through the archway between the computer area and my bed, in which he's laying down. I've never been happier than hearing "DAR" and "HEHR" and funny words like that.
Nonsense sounds pretty good right now.
Back to business, his food pump is pretty sweet. If you have experience with the hospital feed pumps (I know, I Know, What is a hospital, right?) you probably had one whose alarm was at least as bad as a desat alarm, and no volume control. I woke up in terror more than once because a 500cc dose of food was done. Hooray for 3am. Logan's pump is an EnteraLite, which is small, quiet, efficient. More information can be found at the following link: Enteralite Webpage and instruction guide link
Anyway, this is the main list od devices my son uses. There is a whole contingent of little parts, pieces, and odds and ends, like catheters and trachs, etc. Maybe I'll arrange a collage at some point, but, alas, here is what I have done, so here is what there is. If anyone has any questions regarding these machines, or more, please feel free to contact us either here on the website, or directly at;
logans_run888@yahoo.com
we love the correspondence.
11 Jan 2006
2-Dec-2005 The PEANUT REPORT
26 Nov 2005 - The PEANUT REPORT #0001
11-26-05
The PEANUT REPORT #0001, as my Mom and Step-Dad would call it : We've been home almost a week now, and today was Logans first at-home trach change. We wanted him squeaky clean, so we gave him a bath first.
Here he is looking like a hippie on tour (he gets that way really fast, hee-hee).
As he was pretty smelly (Babies with SMA are prone to yeast infections everywhere they get damp,
they sweat a lot, and have their own peculiar aroma about them. L Eau de Smelli Babi, haha!
Please note, apparently baths make Logan sad, see the terrible frown on his face about it? He has always been very fond of baths, although now with the trach, and the ammount of room involved in the bathroom, bathtime has beome more difficult. Still, no one gives Logan a bath like Mommy does, she is the master of baby bathing. We do have a special bathing chair on order, through Easter Seals, but do not have a projected date for arrival.
Then, since we missed photos of his trach change, we have a special, cleaned up baby photo, with his opinion of his new hat. He is, contrary to his current appearance, not normally cross eyed, he just wanted a peek at his new hat from a pretty close vantage point. Funny stuff.
It looks like his Poly-Vi-Sol multivitamin is making him sick in the mornings, I'll be stopping that till I get hold of some medical advice on Monday, rather than have him suffer through emesis. How can 1 cc of something smell so foul? Although some of his diapers......
Anyway, He starts his day with a cough assist, some in line catheter action, and some clean up
with a facecloth, at the very least. Meds via G tube, although they're all pretty much vitamin supplements. We still are getting the run around for A) Biotin, B) Vitamin C/ Ascorbic acid, and believe it or not, his Blankety-Blanking FOOD for god sakes. What would we do without all the red tape generated by insurance companies? Fortunately we're equipped with enough of his Nutrin Jr. w/ Fiber for awhile, and I made arrangements to have it ordered and stockpiled at our pharmacy. If the insurance is going to be .......(use your imaginations here).... I will buy it out of pocket.
The PEANUT REPORT #0001, as my Mom and Step-Dad would call it : We've been home almost a week now, and today was Logans first at-home trach change. We wanted him squeaky clean, so we gave him a bath first.
Here he is looking like a hippie on tour (he gets that way really fast, hee-hee).As he was pretty smelly (Babies with SMA are prone to yeast infections everywhere they get damp,
they sweat a lot, and have their own peculiar aroma about them. L Eau de Smelli Babi, haha!
Please note, apparently baths make Logan sad, see the terrible frown on his face about it? He has always been very fond of baths, although now with the trach, and the ammount of room involved in the bathroom, bathtime has beome more difficult. Still, no one gives Logan a bath like Mommy does, she is the master of baby bathing. We do have a special bathing chair on order, through Easter Seals, but do not have a projected date for arrival.
Then, since we missed photos of his trach change, we have a special, cleaned up baby photo, with his opinion of his new hat. He is, contrary to his current appearance, not normally cross eyed, he just wanted a peek at his new hat from a pretty close vantage point. Funny stuff.
It looks like his Poly-Vi-Sol multivitamin is making him sick in the mornings, I'll be stopping that till I get hold of some medical advice on Monday, rather than have him suffer through emesis. How can 1 cc of something smell so foul? Although some of his diapers......
Anyway, He starts his day with a cough assist, some in line catheter action, and some clean up
with a facecloth, at the very least. Meds via G tube, although they're all pretty much vitamin supplements. We still are getting the run around for A) Biotin, B) Vitamin C/ Ascorbic acid, and believe it or not, his Blankety-Blanking FOOD for god sakes. What would we do without all the red tape generated by insurance companies? Fortunately we're equipped with enough of his Nutrin Jr. w/ Fiber for awhile, and I made arrangements to have it ordered and stockpiled at our pharmacy. If the insurance is going to be .......(use your imaginations here).... I will buy it out of pocket.
Logan has had a couple of rough days, mostly with desats, and some episodes of emesis. These episodes are not exclusive to Vitamin time, but they're not regular or too often, so I'll keep my eye on that, and report in Monday for advice,
once again, from his physician(s). The desatting is, so far, and knock on wood, quickly dealt with by
several (2-3) six to eight breath cycles on his cough assist machine. Although I've only tried in the hospital,
I was informed Cough Assist can be an adequate substitute for bagging, and there were one or two instances
where I did bag this week. Mostly he's shown himself to be pretty happy and doing well here at home.
My other half, Deb, is coming along well with her medical "crash-Course", and we're trying to get the
8hr/day nurses/caregivers up to speed. Until this happens, I am pretty much stuck at home, unless I want to cart the Little Man around in the snow. That will come in time, but I don't want to rush him into going out in crappy weather. Yay, New England. For those of you who live in the tropics, well, use your imagination.
Well, that's the story, next report I will try to get a picture of him in his decked out wheels
(it's his 2 month old jogging stroller that a pair of Occupational therapists, Dr Nancy Bagley, two
respiratory therapists (in Transport),Deb, Myself, and some saran wrap-n-bread ties made happen.
That's it for now, I am Logans Dad, and you're not. (course, none of us are Chevy Chase, ha-ha)
Matt, Logan, and Family
24 Nov 2005
Hello, all, my name is Matt.
My son, Logan Watts, is 17 months old, and was diagnosed at 10+ months with SMA Type II/ I, for whatever that category actually defines.
My son, Logan Watts, is 17 months old, and was diagnosed at 10+ months with SMA Type II/ I, for whatever that category actually defines.
My wife, Deborah and I, live with her two children (Sean, Logan's big Brother is 16, and Alicia, his Sister, is 12....arrrgh, teen-agers!!), as well as Logan.
Our house is in Manchester, New Hampshire in the U.S. My step kids love their little brother, and we all work to keep the little man happy and comfortable in our own ways and means.
Logan and I have just gotten home from our first admission to a hospital. @47 days at Dartmouth-Hitchcock Medical Center, in Lebanon, New Hampshire (@90 minutes from Home).
I stayed with him for the whole admission, and the staff was absolutely wonderful. He was, however, outfitted with a tracheotomy, a G-Tube, and a near full time ventilator, along with a plethora of other devices.
Fortunately, my Boss is the most understanding guy on the face of the Earth; I am unable take a vacation day without a huge battle, but he paid me part time and fully supported me for staying at the hospital with Logan, and this allowed me some extensive hands-on training for Logan's equipment. This is good, as all this stuff falls somewhere between the complexity of rocket science and Brain surgery, lol.
Needless to say, our stress and emotions run a VERY broad range, and it's tough to be optimistic, but my sense of humor has persevered, to some extent, as has my Son's wonderful personality.
My wife may or may not choose to post here, as it is still a very difficult subject for her, tough as she may be. I will be using this account I started for Logan, but I will be sure to identify myself when posting, as will Deb.
Let me close by saying if I had half the tenacity he does, bullets would bounce off me. He is definitely a little trooper, in my humble opinion.
Matt Watts,
Father of Logan Watts
New Hampshire, USA
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