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ome and sleep or try to sleep in our own bed rather than risk infecting everyone good thing we did we re both wasted downing the sudafed and considering buying stock in kleenex with lotion i haven t run since tuesday night wednesday i picked up my sister from the airport thursday i helped babysit another sister s kids on friday and saturday i felt like death warmed over and the prospects for tonight aren t looking much better i am determined to run again before tuesday at 12 07 pm 1 comments labels ty s medical story harrumph ty has gone back to school and it has been an interesting start to the year he has an amazing teacher and a great new communication intervener and we count ourselves fortunate for this however we had a nurse who felt a little out of her comfort zone having ty on her files she called the district head nurse who in turn called me it was not a pleasant phone call she pretty much told me that she was recalling his iep to determine placement options in other words she wanted to move him to the self contained school that has nurses on site everyday to reduce her nurse s liability the very same place i had fought so hard to have him removed from back in second grade as he pretty much shut down there we had just had a meeting this past spring with a roomful of people to determine that the local high school was the appropriate place for him so i wasn t too worried but i m frustrated that i let her get under my skin she was completely inappropriate in how she handled the situation and for that matter so was i i ended up raising my voice and using an actual although mild cuss word i try never to do that with the professionals that work with my son as it costs me some serious respect points if i do she said she didn t have to continue to listen to me instead she was going to call her higher up with whom i am very well acquainted and i knew she d have my back and give them her two cents i told her to go right on ahead even though ty had been perfectly fine at the local junior high she felt high school was a whole nother matter her reasoning made no sense to me none and i was furious i think i actually saw red do not i repeat do not mess with my kid she should never have called me directly except to update his medical file and she has no actual authority to determine his placement on her own i had a moment of panic and extreme frustration to put it mildly and called for reinforcements i wanted to make sure the teacher was still comfortable with having ty in his class he was and that things were going well and except for a case of butterflies and nausea on ty s part it was in fact the teacher his coordinator and intervener were all surprised and unaware that i d been called they all reassured me that he was staying and stay he has seminary is my next battle it s a complete philosophy change from the junior high to high school one that i m hoping to change at 11 33 am 0 comments labels school days sunday august 23 2009 it s probably nothing but ty s legs appear to be swelling i m not sure if he s just bulking up from the new formula or if it s fluid retention i m not used to seeing him so filled out my mothersense is tingling so i ll probably take him in to the doctor this week he starts high school this week i can hardly believe it i have butterflies in my stomach for him since it s a new school new teacher and new intervener for him i ll be attending school for the first couple days with him to show everyone the ropes we go over how to communicate with him feed and change him how to reposition him no detail is overlooked but still my heart skips a beat when i turn him over to the faculty and then i go home and try to remember how to breathe at 10 44 pm 3 comments labels ty s medical story saturday june 13 2009 on decisions i tend to over analyze everything where ty is concerned okay maybe i over analyze everything it s just how it is i like to cover all the angles before making any big decisions what follows here is one of these situations i apologize that it is long and most likely boring to any who read it but it is our latest conundrum we visited with ty s rehab doctor this week and the subject of his increasing clonus and focal clonic seizures came up increasing his oral baclofen is not an option he is on a maximum dose which leaves him fatigued much of the time and affects his ability to void urine aka pee his doctor suggested that we attempt placing a baclofen pump on the other side of his abdomen the one opposite his tumor the one that developed the last time he had a pump placed i know theoretically the tumor was a one in a million well actually 2 in a million occurrence we know he does not have the syndromes associated with desmoids so it developed from trauma surgery or pump but he has had numerous surgeries that have healed normally we thought that once he had his spine fused that he would not be a candidate for a second pump makes it sort of challenging to get tubing into the intrathecal space when a steel rod bone graft and associated wires are all in the way but no the doctor mentioned that they have the option of threading the tubing from the pump over the top of his fused vertebrae meaning that they would insert the tubing at c7 but thread it down through the intrathecal space until it reaches the level of the spine that would specifically address the muscle tone in his lower body the advantage of delivering baclofen in this manner is that he can be on a micro dose which will not have the same side effects fatigue bladder issues etc currently the medication has to cross the blood brain barrier so he takes a very large oral dose all of this to say that a if they can do the surgery without disturbing the tumor a very big if it s the sort of tumor that will wake from its deep sleep and likely become aggressive again and this time he wouldn t be able to have any more of the chemo that actually worked to shrink the tumor and it could necessitate major surgery to resect it big breath b it will provide more pain relief to his hip without the nasty side effects of narcotics which may be triggering his seizures c but no one knows if it will produce a second tumor or flare up the one asleep i honestly don t know what to do we both don t i think i am a little bit immobilized by fear fear of the unknown fear of leaving him in pain fear of stirring up the hornet s nest that is a now asleep yet formerly aggressive tumor and lastly fear of putting my own currently calmed down life ahead of my son s potential pain relief comfort right now i d like a lightning bolt or a crystal ball but most especially a strong whispering in my heart at 7 50 pm 15 comments labels ty s medical story sunday may 31 2009 run do not walk you must go here and read lisa s post i wish i could print it out and carry it with me to have on hand i d wager that most parents of disabled children feel most of these things at some time or other in case you ve ever wondered what do i do what do i say read this post at 6 22 pm 4 comments labels ty s medical story saturday april 25 2009 dreams and such i routinely dream about ty and they are such vivid dreams too there is the one where ty is not quite ready when the bus arrives to get him for school normally his bus driver just waits for us if the garage door is up but in my dream there is a substitute bus driver he only waits the requisite two minutes before pulling away i end up giving chase in my pajamas arms waving wildly hoping to get his attention sometimes i am successful and he pulls back around to pick up ty inside the house it is a mad dash to get him in the chair and out the door before the driver gets impatient and takes off again there are also the dreams where he is a regular teenager and does regular teenager stuff he drives a car hangs out with friends in the basement family room drinks milk straight from the carton has real homework and talks to me about girls i love these dreams recently i ve been having one where he is young again about 10 or 11 he is on the floor and as soon as i dress him and tell him it s time to get in his chair he rolls on to his side then i help him roll to his stomach and kneel up he leans against me and hugs me tight while i help him slowly rise and then sit in his wheelchair he looks directly at me and gives me a huge smile filled with appreciation the hug and the smile are my favorite part he is not healed in this dream but because he interacts with me more than he does in real life it s one i hold dear ty is one of the most patient loving people i know i don t care that it sounds strange but i think these dreams are his gift to me they are his way of reaching out to me and communicating on a deeper level at 3 15 pm 4 comments labels fly away wednesday march 18 2009 remember back when i asked for a nice slice of boring it turns out that such a thing does not exist or if it does it is not very filling nor is it long lasting i have taken ty to the doctor at least 6 times in the past three weeks we are trying to solve the mystery of his pain so far we have been unsuccessful we have tried shots and a new medication with fewer side effects all to no avail add to the mix his bronchitis which is finally coming around after 3 doses of antibiotics one of them he had an allergic reaction to lovely and the fact that he is having difficulty with peeing i ve had to cath him for several days but his urine samples test negative for any signs of infection phew so mystery the good news is that his g tube has stopped leaking so much now that his cough is subsiding during ty s chemo and major surgery recoveries we put the other kids lessons on hold it just wasn t logistically possible to be so many places at once we re making up for it now with volleyball 4 nights a week and dance 3 times a week throw in some church callings service regular errands doctor appointments and we are hardly ever here i m not complaining i ll take this kind of hectic over watching a child go through chemo any day any day it s just getting the best of me i am still feeding the family staying ahead of the laundry as much as one can and even occasionally sweeping a few dust bunnies into the bin but i am sick i ve been ill except for a 3 day reprieve since early february and i am just tired very very tired of being sick so i m telling this mung to take a flying leap leave be gone with you anyone think that will work at 9 59 pm 1 comments labels alrighty then ty s medical story tuesday march 10 2009 update the roads were sufficiently icy this morning to tack on another 20 minutes to our hospital commute we met with the surgeon who was actually very impressed with t y s g tube site he has ordered one with a slightly longer stem and we ll see if it slows down the leaking the surgeon feels that because ty is sick right now his stomach is taking longer to empty and that the leaking will most likely resolve itself once his cough is gone or it could be the pain meds slowing things down we did find out that he won t perform a third nissen on ty so if the current one fails and he is able to vomit via his mouth again we ll have to explore a different option one of our options is to put him on continuous pump feeds and a second option is to bypass his stomach and have a j g tube placed which ever it ends up being i hope it s a very long time before we have to consider either one at 2 31 pm 0 comments labels ty s medical story friday march 6 2009 g tube complications first let me say that i love the fact that ty has a g tube it s our back door so to speak he used to eat whatever we ate just blended up with a little milk to thin it but then chemo changed his mind about eating anything other than pop rocks and cotton candy now we feed him an enteral formula every three hours from 9 am to midnight this latest round of bronchitis has somehow changed how his button g tube functions he is swallowing a lot of air and it is trying to escape around the opening for the button last night formula and stomach acid began leaking out a little and by that i mean profusely we now have an appointment to meet with the surgeon early next week he s going to measure ty for a new button size meanwhile i need to keep ilex cream on his stomach around the opening and feed him smaller amounts every 90 minutes oh joy hopefully he ll get rid of his cough in the next couple of days and that will slow down the leaking at 12 58 pm 4 comments labels ty s medical story wednesday february 25 2009 the house of the rising fever ty has joined the ranks of the sick and afflicted everyone but me and spielberg has had a fever of 103 or 104 in the past week ty s came on suddenly and was accompanied by a horrible cough and boatloads of mucus he has so far knock on wood and all that jazz never had pneumonia i m keeping a close watch though the past two nights i ve been playing florence nightingale and lifting his head to his chest every time he coughs it s the only way to get any of the crud out this means i do not keep conventional hours i think it was somewhere in the neighborhood of 4 27 am that he finally rested enough for me to feel comfortable with hitting the sack mr o is home sick with it as well and took the morning shift with ty and i squeaked in 4 hours of shuteye ty usually only gets sick once per year so this is it he s giving it his all in other news he recently had both a cortisone shot and a phenol shot to his left hip joint in hopes of lessening the pain he s been experiencing something has happened since his surgery we re not sure what that is causing his hip to grind bone on bone whenever we move him the shots seemed to have helped with decreasing his pain when we move his leg from side to side but when we move it up and down like when we are dressing him or putting him in his chair we still have to scrape him off the ceiling at 2 55 pm 1 comments labels ty s medical story older posts home subscribe to posts atom the hair is back desmoid tumor what the heck is that about me mrs o yes i ve earned every last one of these wrinkles view my complete profile about tyler ty suffered vaccine reactions when he was 2 4 months old and we ve all benefited from his loving spirit in our home in september of 06 he was diagnosed with a rare aggressive tumor it grew as large as an nfl football but has now become the incredible shrinking tumor we hope it disappears altogether this blog is about him and the things we experience together and also maybe a little bit about how i keep my wits about me thank heavens for cameras knitting quilting and writing old stuff old stuff september 2 august 1 june 1 may 1 april 1 march 3 february 1 january 1 december 1 november 1 october 7 september 3 july 1 june 2 may 2 april 1 march 7 february 12 january 15 december 17 november 23 october 19 september 18 august 31 july 22 june 33 may 32 april 6 labels alrighty then 56 cancer schmancer 7 crafts 10 flashback friday 8 fly away 2 food 26 kids 25 meme 9 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