Jenn's Blog (15)

steroids, lisinopril and illness...

max is 7 and has been up vomiting every 30 min all night ( nothing left in his belly, but he is still heaving) does anyone know what we are supposed to do about his am meds? he takes deflazacort and lisinopril, not supposed to miss either. we have not encountered this yet believe it or not, with either boy, and i know local docs will have no idea, my boys are the only dmd kids around. thanks, jenn

Added by jenn on December 6, 2009 at 7:26am — 6 Comments

how to buy a van..

advice would be greatly with any aspect of duchenne, we were not truely prepared for this next step of austin(age 10) using a full power chair. he actually can walk some, but the scooter he has used for yeras was not supporting him, and we wanted him to be more comfortable as he really doesnt walk much at school, so, the chair is here, the issue is, we have no way to transport it. we had thought this would be easy, go to local dealership ( my husband happens to be friends with… Continue

Added by jenn on December 3, 2009 at 8:47am — 12 Comments

middle school years

just when i thought i had this duchenne thing under control things seem to have gotten crazy again almost over night. austin is 10 ( almost 11) and in our school district they begin middle school in 5th grade. school has been a nightmare, austin has been left out, socially and academically. the adults at the school seem to see him as a burden ( although, they dont really seem happy teachers in general) and bottom line is he is so miserable that i took him home friday and we will not bring him… Continue

Added by jenn on September 28, 2009 at 1:14pm — No Comments

the flu... and tamiflu

i got a call yesterday from the double h ranch where my boys are at camp for the week. it seems that one of the councelors in max's cabin has the flu. not only does that guy have it, but several councelors do. when i called the nurse she informed me that all campers exposed had already begun tamiflu as a precaution. YIKES! i think that was the right choice, and my doctor agrees, but when i read the potential side effects, and some previous posts on here i got a bit freaked out. i hope all is… Continue

Added by jenn on July 30, 2009 at 8:29pm — 2 Comments

tough transitions...

austin said to me today" now im knowing what it's really like to not be able to walk anymore..." i am so heart broken when he says things like this. its true, today for some reason he hasn't been able to move very well. he's 10.5 and i knew he wouldn't be walking much longer, but somehow im still not ready yet. his power chair wont be here until august at the soonest, we don't have a lift on our van yet. we just finished handicap additions to the house, and the driveway still isn't level enough… Continue

Added by jenn on June 26, 2009 at 4:50pm — 4 Comments

school sucks!

is anyone else having issues with their sons' school just not getting it? im not looking for a school that has the best test scores, smallest class size or even some amazing college prep courses. i am simply looking for a school that is ACCESSIBLE to my son, KIND to him, and COMMUNICATES with me. he is currently in 4th grade and will be going into middle school next year. this has been a horrible year, his case manager actually threatened to take away his scooter as a punishment! ( how about i… Continue

Added by jenn on May 28, 2009 at 9:06am — 5 Comments


so, it seems we, as a DMD family have reached another milestone. on our recent trip to cinci dr. cripe discovered that both boys have new heart issues, austin has scar tissue, and max has one enlarged ventricle ( i hope i have that right...) so they are both on ace inhibitors. that was no surprise really, i knew it was coming, i was aware of the drugs, but it still made my heart drop when i heard. during my meeting with dr. wong we discussed the other milestones of the year, it was so like…


Added by jenn on April 20, 2009 at 9:00am — No Comments

expecting the best

i hate when people treat my child like he is handicapped. well, technically he is, but thats not the only trait he has. im tired of people always assuming that duchenne md is all there is to him, or even worse, that because he doesn't walk, his eyes, ears and mind is also in some way compromised. im sick of people asking me "what does he want to eat?" i dont know ASK HIM. or some people do decide to talk directly to him, they raise their voice a few octives and decibles and slow it down as if… Continue

Added by jenn on April 7, 2009 at 9:25am — 3 Comments

power chair blues...

we had our first power chair evaluation for austin today. can i just say YUCK! it is such a daunting task, we tried the new permobil, that tilts and raises and lowers to the floor, great features but we cant navigate it throught the house without smashing into corners. the other chair was mid wheel drive, and had trouble getting around the vermont landscape. the PT was working hard, but austin was frustrated trying to learn the joystick, its so different from the scooter controls, and was i was… Continue

Added by jenn on April 1, 2009 at 9:21am — 3 Comments

double h ranch

behaving like a "normal family" is so important to my husband and i. it is so easy to fall into the "dmd family" trap. duchenne is always here, its underneath everything we do, every choice we make, from our home addition to our vacation and van choice, but it does not need to be the focus of every day. we spent the weekend with three of our boys, austin, max and baby james at the double h ranch in lake luzerne ny. this place is the best place in the world, i am sure of this. the boys went… Continue

Added by jenn on March 24, 2009 at 12:07pm — 3 Comments

paperwork, UUUHHHGGG!

i am one of the least organized people i know when it comes to paperwork. i lose everything, and i have a carefully devised filing system that i just cant seem to use. for the most part we use a giant cork board for everything from school stuff to medical appointments and artwork. i just tack everything i think i may need at some point. im getting better, we just put a huge addition on our home, and i learned to keep EVERYTHING from contractor notes to loan information in a file, i have a giant… Continue

Added by jenn on March 12, 2009 at 4:21pm — 1 Comment

control freak

so, i have always been a bit controlling, ok, my family would say more than a bit. with the birth of my first son austin i became even more of a control freak. from diapering to feeding to tv veiwing, i knew how i wanted MY son raised. i found myself leaving any sitter with a detailed list of how to care for my baby, and was unable to relax any time i was not near him, for fear he may watch an extra 5 minutes of barney, or not wash his face before bed. ( you get the point) well, needless to say… Continue

Added by jenn on March 10, 2009 at 4:15pm — 1 Comment

laughing under water

my son says things sometimes that make me think. we got another snow storm today, and i decided to keep them home from school, the driving in our van is not great in bad weather... we were swimming ( we just put in an indoor therapy pool) and austin said, "hey mom, can we laugh under water?" i said well, it will be strange but, give it a try!

he and max dove down and i heard some distorted noises comming up in the bubbles. they burst to the surface screaming " you can, mom we laughed under… Continue

Added by jenn on March 9, 2009 at 3:33pm — 2 Comments

love notes

Austin has a crush! ok, so that is a secret, dont tell kaylyn, or anyone else at central school. but i cant help telling. he actually wrote he a love note, last night. talk about cute, he has tremendous learning issues, so writing is not so easy, but the note went something like this " dear kaylyn. i like you, you are hot( where did he get THAT?) you are pretty, kaylyn. love austin" of course i couldn't let it be. who is this girl that makes my son blush? does she like him, he is adorable but… Continue

Added by jenn on March 6, 2009 at 1:07pm — 5 Comments

frustration of winter

so, Austin fell today.

he falls everyday, but today he fell in the snow, and crawled up the neighbors driveway until i found him. i told him to wait for me. i told him he would fall. i told him i just had to get boots on the baby then i would help him go see his friend lexi. he went anyway, with the cool confidence of a 10 year old boy. with the pure will power that makes his legs move every day. and i was right. i didnt want to be right. i wanted him to make it. i wanted him to get there,… Continue

Added by jenn on February 23, 2009 at 8:42pm — 5 Comments

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