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Text of the page (random words):
vising wouldn t know what to do or the part where the adults knew my bleeder baby had hemophilia and they didn t let him play it s a very scary confusing mix of emotion let him play but stay close by in case he falls but don t let him know you are staying close by in case he falls because he needs to be treated normally but he has a severe bleeding disorder got that but he ll be fine because he s on trophy but he could still get hurt and have a possible bleeding episode so call me if he falls anyway just in case sigh i held my breath for a week at home by the phone from 8am until 2 30 and somehow like every other hemophilia related milestone that we ve worked through you know what he is okay he made a friend he colored some stuff and he played on the playground does he go to the nurse s office a bunch yeah but weirdly he thinks it s cool it s become his safe place and that s okay too so while i was scared of throwing him into the big pond i couldn t stop him from doing it he s just a normal kindergartener i still have 6 years to worry about middle school right posted by forrestermom at 4 09 pm no comments email this blogthis share to x share to facebook share to pinterest thursday january 17 2013 5 years my bleeder baby is almost 5 years old no way i figure the 5 year mark is a good time to reflect on what hemophilia has done to our family when at 4 months old we were told our second baby was going to live his life with a rare genetic bleeding disorder that most people knew nothing about there are so many memories of the past five years both good and bad all of which i never thought would happen to me or my family i remember finding that first ugly swollen bruise it was shockingly purple against his perfectly creamy white skin something that motherly instincts told me should not be there before i even had him dressed for the doc appointment my best friend and i were discussing where the hell it came from over the phone she says well it s not hemophilia just hearing that word and knowing even across the phone she said the word that stung my heart as any good friend saying your greatest fear out loud in hopes that it just won t be true i remember the pediatrician being as shocked to see plum sized bump as much as i was and feeling sick to my stomach when outside the office door i could hear a second doctor question the motives of his two year old brother at home i think i thanked our pediatrician every visit for four years for believing it to be something other than abuse i continue to silently thank her whenever i hear of another family whose experience involved cps or even jail time i remember the first hospital stay waiting to find out what blood work would reveal hoping the multiple pokes to get blood would be over and we could just go home sadly this was just the beginning that first night the baby and i sat in the dark corner of the hospital room like a frightened animal in unknown territory i held the baby the entire night even after my arms fell asleep afraid to let go and wishing i could put him back in my body where no harm could come my husband left us here to take the two year old home but the look of ptsd on his face told me it was better to keep him occupied he hadn t been to the children s hospital since he was a kid and he was on the very floor where his sister died of cancer sitting in the dark with my sleeping baby i knew this part was all on me and hoped the hours past quickly over the next year and a half i think i lived most of the time outside my body i kept thinking at some point i would wake up to my real life i knew my baby was a bleeder but i still didn t understand what that meant at 6 months old his inconsolable crying would have me on the phone to the nurse on call asking if he could be bleeding somewhere i was always on pins and needles frantic with worry that he was hurt and i didn t know it hemophilia absorbed my natural instincts i scrutinized his every cry and movements and automatically thought bleeding before any other natural baby condition like tired hungry or just fussy from being a baby every diaper change and clothing change caused me to scour every part of his body for some abnormality we were afraid we would break him if we touched him to firmly taking him places my husband would find reasons to tell people our baby was very sick he worried about whether we would continue to live our current lifestyle or that the care of hemophilia might bankrupt us i was just trying to keep two kids alive after finding out i was also a carrier as well as my mom he questioned whether the family knew and had kept some sort of secret even thought it was clear know one could have known about this rare disease it was a year into our life with hemophilia that i started coming out of this black hole and it was another six months before we both began to breathe again the first 18 months were filled with an emotional roller coaster of events almost monthly trips to the er that included multiple traumatic pokes for the baby and all the mother s strength i could conjure up to wondering if our marriage could actually survive this upheaval all while trying to keep the life of a precocious 3 year old in it s own creative balance yes it was at the 18 month mark that i found a stride in my inner strength i learned everything i could about hemophilia i joined groups we went to camp and i got involved i wanted to help others navigate their dark hemophilia hole as well as heal my own i wanted other mothers to know they are not alone it was also at 18 month turning point that things had to change or i would break the er trips were not getting better and the pokes were getting harder for all of us to bear the decision for a port came when a trip to an unknown er brought so many pokes that i stopped counting after 8 watching the nurses strap him to a board was the last straw within weeks his surgery was scheduled another set of unknown circumstances were upon us as i handed my sleepy little toddler over to some stranger i mean surgeon my heart fell out of my body and lay flapping on the floor like a fish out of water for the next 3 hours seeing his scar of imperfection only brought more determination hemophilia is not going to halt our lives amazingly that magic little button under his skin changed our lives we could breathe again he wasn t going to break after all the next milestone didn t happen until preschool such an exciting time i sat down to fill out the paper work and looked at the emergency information sheet my hand started shaking and the page blurred before my eyes was i really leaving my bleeder baby s condition in the hands of some random people who don t even know what hemophilia is would the ostracize him at recess would they know what to do in an emergency it felt like so much weight to bear on a mom s heart yet i managed a deep breath and got through it and sent him off with a smile and all the instructions i could give i drove off and parked around the corner and cried in the end almost 3 years of preschool have gone by and not once did the school call for an emergency did he get hurt on occasion yes but no more than any other preschool kid did he get to use scissors and go down the slide heck yeah looking back on the last 5 years the journey has at times been overwhelming but i have chosen to stand firm and look hemophilia in the eye and say bring it on as my little bleeder baby no says in his big 5 year old voice because williams do what williams do happy 5th birthday my little bleeder i wouldn t want you any other way no let s go get some bacon band aids posted by forrestermom at 9 36 pm 4 comments email this blogthis share to x share to facebook share to pinterest thursday march 8 2012 i got the look the other day at our local ymca which i love by the way i got the look from a little girl s grandma in the pool my bleeder baby wanted to go swimming before lunch so i happily complied off he was with his thomas the train squirters bouncing and chugging through the shallow pool u found my place along the edge with the other moms and smiled at such gleeful splashing and ease of making new friends then i got the look i know it was the look because the grandma in the pool was talking and smiling to the other moms on each side of me i was somehow invisible at first i brushed it off thinking naw i m reading into this but then i glanced over at my little guy and saw his leopard spots you know the ones hemo families now will has been on a regular prophy schedule for a little over 2 years and i m pretty dedicated but on occasion i slack off and we get busy a mom is not perfect and i forget a dose here and there this time it was several days but he was healthy so there were no worries until the look and the leopard spots it had been quite awhile since i had such a stare or look by an outsider but i sure did notice it william had several bumps and bruises but nothing out of the norm for a hemo kid unless you are unfamiliar with a hemo kid then the hemo kid looks like his parents grab him to hard or whacked him with a stick of course none of this happened so i knew this lady was giving me the evil eye and ignoring me to the point that i almost said something letting her know my bleeder baby was just that and that he was well cared for but then as i watched all the kids including her granddaughter playing happily together not caring i decided let her think whatever she wants i know the truth and if she really cared she would ask about him instead of judging me with her beady little eyes so that was that kids played i watched and smiled and made a mental note to infuse my kid when we got home i m glad kids don t notice they are awesome posted by forrestermom at 8 40 am 3 comments email this blogthis share to x share to facebook share to pinterest friday march 2 2012 hemophilia awareness and politics in the last few weeks i have been learning the art of lobbying meeting with political representatives and senators in washington state in hopes that they will support the greater good of the hemophilia population national hemophilia awareness month just began and today my little bleeder baby and i went back to olympia for important business we are hoping to convince those speaking for the people will protect people with bleeding disorders by keeping them exempt from the medicaid formulary being exempt means they and their doctors will be able to choose what medication is best for them without being exempt means the state would choose the drugs for them this would most likely be the cheapest and this would most likely mean plasma products the hemophilia community has a terrible history with plasma and plasma products the tainted blood of the 80 s and 90 s infected the population with hiv aids we do not want a repeat we should get to choose so with the backing of senator jeanne kohl welles we are hoping to keep the choice with the people in the process we are educating and bringing hemophilia awareness to the political arena we will be heard posted by forrestermom at 2 46 pm 1 comment email this blogthis share to x share to facebook share to pinterest tuesday november 1 2011 the sweet spot a few weeks ago i had trouble accessing my son s port he s had it for 2 years now and we ve had relatively little problems the first day i hit metal and gave it another try by then will was nervous and crying so we let it go the next prophy day came around and the same thing happened i hit metal i couldn t find the sweet spot those of you with port experience know this spot it s the bulls eye soft center you pierce with the needle that tells you you re in after day 2 with no luck i was not about to throw the factor away again and i could see a nice hematoma growing under will s skin so off to childrens hospital we went we pretty much spent the day there trying to trouble shoot the first nurse seemed to hit the sweet spot but could not get a blood return at this point nurse barb showed up she s one of our peeps we decided to get an x ray in and out of radiology will my husband and i went holding onto will the whole time the results everything seemed normal with the port still accessed we tried again but no blood return in fact whenever someone tried pushing the saline through will cried and said it hurt this started making him nervous we d been at the hospital a few hours and we were all getting a little antsy and hungry the friendly charge nurse who is now in my circle of hospital peeps thought maybe it needed a flush so we tried flushing with a little tpa it hurt when anything went in so we could only hope it was enough in the back of my head i kept thinking port replacement surgery this is the last thing i wanted 2 years ago will was only 18months there wasn t a whole lot to explain then or any prior experience so for will it was an easy in and out sort of thing i was a wreck but all was well now the thought of surgery on my almost 4 year old seemed to make me panic my perfect little boy already had one scar did we really have to contemplate another could i really find it in my mom bag of strength to explain the procedure to him in a way that wasn t scary that he d be going off to a strange looking room with strange doctors who would be responsible for my child s life i just wanted to get through lunch and back to trouble shooting so we could go home an hour later we were back up in the exam room with a plan the next step was a contrast dye test was there a leak or a crack or had the port simple come apart hopefully this would give us the answer all i could do was take a deep breath i wished out loud for will s nurse practitioner to be back from vacation she was my sanity my solid rock my voice of reason she would tell me when to breathe and when to freak out the air came out of my chest just as the door open it was her i looked around the room and all my medical peeps were here it felt like being in the safe hads of other moms and friends others who all wanted the best for my little lovey we could brainstorm together to keep him safe out loud someone mentioned port replacement it was now out in the universe and i had to accept this option keep your friends close but your enemies closer i had to stay one step ahead of hemophilia i had my peeps around me and will was counting on all of us we headed back to radiology this time with out my husband he had to get home in time for the school bus dropping off my other son then he had to get all my and will s stuff packed for a night s stay at childrens radiology brought will s nervousness back pushing the contrast through hurt they could barely get any in but it was enough to see that nothing was getting into the tube it was just pooling around underneath what the hell was going on no one knew and the only real way to find out was surgery ugh i questioned whether the port could be fixed or if a new one could go in the same place no one knew i just couldn t bear the thought of ano...