i've cancelled my hiatus.

okay, so i wasn't gone on purpose...i think i just got super lazy? ok, maybe i didn't do that either. you see, my original purpose for starting this blog was to document what we were going through with e's disease and share with others how we handle things and where my head, as a mother through all of this insanity, is at. thankfully, we have had a pretty easy go of things this past year and there hasn't been too terribly much to report.

i suppose one item to note to other parents out there is that we did get through seasonal illness without a hospital stay. twice. i decided to meet with one of the four hemotologists in the practice and plead my case about my knowledge and ability to care for and access e's port. and that if there were a cold this season, which there inevitably would be, that i would be more than happy to treat him at home until we were sure that there were an infection in his port that would mandate a hospital stay. i had the full backing of the head hemo nurse sara, and it was decided that i could handle this stuff at home if we should need to. and i did. twice. e had two horrid colds this past december and none of them landed us in the hospital. and thank whoever you believe in for that, because the first fever lasted eight days. it would have been miserable in there for over a week.

we are still on prophy treatment, but have gone back to a monday/wednesday/friday dosing schedule. e had some bloodwork right after the first of the year and his levels seem to have elevated back to the 5% range. nobody seems to know why his levels have fluxuated so much, but we are certianly pleased to see his levels close to where they were during his first six months of life.

i intend to update more often (shout out to allison for kicking my ass into writing), even if the original intention of this site may have to shift to keep up with the frequency.

frustrated.

this is definitely an emotion that i feel a lot dealing with this disease. i feel like i am making real progress in understanding and coping with it all, and then.....nope.

evan had his blood tests done last week. i called sara (the hemo nurse) yesterday to check on his results and she said that his factor level came back all wonky at 0.6% so the lab tech was going to run another level and that she'd get back to me today.

i am thinking this isn't going to be such a big deal, because this has happened once before, and his labs came back at 3%.

yeah, not today. sara called and let me know that they re-ran his factor level and that it's at 1.1%. not what i wanted to hear. not even a little. this can mean many things, but she cautioned me not to get too upset over it...that we need to pay attention to the way his body is acting as a hemo. and that if he isn't having joint and muscle bleeds, that that's a good sign.

but to me...his mom...it's a kick in the face. it reminds me that i need to be more cautious when i pick him up and not lift him under the armpits, but instead scoop him under the butt and have him sit on my arm. it reminds me that i NEED to have him in his helmet all.the.time. no if's, and's or but's. i need to start checking him more for hot spots, or small lumps i may be missing. it means i need to start thinking about the possibility of prophylaxis. it means i have to remind myself all the time that my idealistic view of how my baby was going to be is being broken again.

and the hardest part (for me) is trying to do all of this while not getting sad about it. and while not letting evan know (however small he is...he'll know) that i am treating him differently. special. i mean, he is special...and delicate...but i don't want him to know that. and maybe he would never know the difference, but in my mind i know the difference. and i think i may communicate that to him somehow. and i don't want him to know my frustration of how i have to treat him differently. and its the having to treat him different, not wanting to treat him different, that really pumps my nads. i've always been proud of the type of mom i am. i think i am pretty damn good at it. i have a wonderful older son that is living proof. and to have to alter the things that i have done to turn him in to the wonderful young man he is makes me mourn a loss of something that never really existed with evan. and i suppose that makes me mad too.

on the bright side, there was no evidence of an inhibitor. so i guess i will have to take what i can get.

ugh...hemophilia anxiety.

so i spoke with the head nurse at the hemotology clinic yesterday and she said she'd like the have E come in for a check-up. i didn't think it was that big of a deal until i spoke to her today. apparently he needs to have blood drawn for a factor level and an inhibitor check. and then she rattled off some other tests the hemotologist may want to order, but i don't really know what they're for.

i hate, hate, hate that he has to get poked. it is pure torture to watch them put the needle in his arm. even if he doesn't cry or get fussy, i still hate it. and the worst part is having to pretend like i'm all happy and like it doesn't hurt that much. and that i am always by myself for this shit. and its hard to be strong for evan when i feel weak and vulnerable at these appointments.

so, here's hoping to only one stick and no inhibitors.

farewell, foreskin.

in an effort to get caught up on evan's past 14 months, i'll start with our first hemophilia hump. the circumcision. we knew we wanted to have him cirumcised, but since he was diagnosed with hemophilia my ob declined to do the procedure. so, off to the pediatric urologist we went.

e's circumcision came right around the time he was 7 weeks old. the wounds were still fresh from his diagnosis, and this simple 10 minutes procedure landed us a two night stay in the children's hospital at st. joe's. since it was being performed on a monday morning and michael had to work, i was at the hospital overnight by myself on sunday and monday. michael drove with me to the hospital on sunday evening and we checked in. he stayed with me while they put e's iv in and left around 10:00 that night. i was breastfeeding and evan was still so little...and they told me i couldn't feed him after midnight. i was dreading the night with him, alone in a hospital where i couldn't nurse him to calm him down. luckily he nursed right before midnight and didn't wake up again until 4 where i gave him a paci and he went back to sleep until around 6. his appointment was at 8, and he did pretty well with not eating.

i brought him downstairs and checked him in with the urologist. he showed me the board with straps that evan would be put on while they did his procedure. the whole time they are explaining this to me, i kept asking myself what in the hell we were doing making him go through this. so little and helpless being strapped to a board. so i left and went to get a coffee. i knew when i got back that they would be finished. i didn't want to be within earshot in case he was crying. i was already in a fog from lack of sleep, post-partum emotions, and the freshness of his diagnosis. i didn't need anything else to possibly tip my scales.

i came back a little later to pick him up...he did great (well, that's what they told me anyway). now he could nurse and sleep and be infused every 8 hours for the next 24 hours just to be sure he would clot up. i was going to try to get a little sleep, but that didn't work so well.

being at the hospital with him was hard. it was difficult to see all the little kids that had been there for weeks...some of them months...with their own linens in their rooms to make them more comfortable. kids with cancer and other horrible diseases that were making them weak and sick and probaly unable to see their next birthdays. and then there was me...a mom with a baby whose disease was managable. it isn't likely to kill him...and there is so much hope for him to have a totally normal life. it made me feel a little better about it, though i felt guilty for feeling that way with all these other kids around. not that i was sharing these thoughts with them...but it was still so sad.

my mom brought noah to visit us that afternoon. and then my dad came, too. and michael came after work and brought dinner for us. it was so good to have people there...and made me miss being home. i just wanted to be at home...in a normal setting...with our new baby. but we weren't. and i remember feeling the unfairness of it all. again questioning why this had happened to our son. the questioning and crying didn't do any good though. and i knew it wasn't going to change the diagnosis. so i kept telling myself to stop. as hard as it was to do that...i kept trying.

the next morning we were able to leave...though not until around 11. i was so happy to leave. it was just one hurdle that we had gotten over in our new relationship with this disease. and it turned out alright. while we were there, the doctors drew blood from evan to check out his factor level. we got the results back that he was at 6%...this was fantastic! it meant he was in the mild range, and we were so thrilled to hear this. we have since had him retested (twice) and found that he is at 3%, putting him in the moderate range. still not bad...but not as good as we thought it was.

anyway...we got to go back home, as a family, to keep figuring this thing out together. and it was great to get back there.