if you're looking for a good cause to contribute to

i strongly recommend donating to your local hemophilia foundation. i was speaking to someone there that i speak with quite often about how to use the best verbage to speak to my insurance company to get them to cover a new helmet for E, and she told me that the hemophilia foundation will buy it for us. i was so excited. i'm still so excited about it. these helmets are expensive, and at the rate evan's head is growing, he's gonna need a new one in about 6 months.

anyway, i know it's donations that help these organizations and i hope that other families feel as greatful for these things as i do. i promise to post pitures of him in his new helmet when we get it.


not for the squeamish.

so i finally uploaded some photos today and realised that the pitctures that i took from the hospital visit that prompted me to start this blog have yet to be shared. they tell the story of what e goes through at the er better than i ever could. except that i forgot to bring the camera in with me for the ct scan and didn't want to look like a total ass and leave to go and get it. i guess those will have to wait for another day.

this is the nasty lump-bruise about 15 minutes after e smacked his head on the floor. for a frame of reference, he was sitting on a padded square tray that is part of a storage ottoman that was sitting on the floor. its about three inches off the ground. he fell forward and didn't catch himself and hit the kitchen floor with his forehead. well, at least i think that is what happened. i was cooking dinner at the time. this bruise was instant.

this is part of what happens in the triage area. there is a nurse that takes his pulse and blood pressure, and gives him is ankle hospital bracelet. they also take his weight, but i forgot to snap a picture there too.

since e's fall happened right at dinner time, we had to improvise and eat at the hospital. so here he is in his stroller, waiting for his meal of raisins and mozzarella cheese. and, of course, with his cup of milk. one good thing about our shipments of factor to our house is that they come packaged with these awesome ice bricks that stay cold for about 24 hours. so i throw those in the bag when we go to st. joes to keep things cool for him. you can also get a better sense of the color of his bruise here. the light in the first picture from home made it look a little lighter in color.

here are the nurses getting ready to stick evan and give him his factor. they are so good with him. and don't mind at all that i have my camera out. they didn't even ask me not to get them in the picture. the nurse in the back just fell in love with him.

and here they are searching for a vein. poor baby has difficult ones to find, just like his mom.

and we have entry! the vile of clear liquid on the left is his factor. with this particular vein they only got about a third of the factor pushed through before the needle somehow left the vein and they needed to go and poke him again in order to push the rest of the factor.

here is the spot of blood that was on e's inner elbow when they took the needle out. i look at this picture and i want to yell at his blood and tell it to shape up and work like it's supposed to and we won't have to do this anymore. unfortunately, it doesn't listen.

in this picture they are pushing more factor. they had to put the needle in his wrist, and i could barely bring myself to look at it, let alone photograph it. it was very painful for e, and he squirmed quite a bit and the needle dislodged again. so it was off for another site, giving us poke number three.

the third and final poke was in the top of evan's left hand. the nurse really didn't want to do it there because she noticed there was some scarring from times that he's already been poked there. and she's afraid that it will be more difficult to get to the vein.

and this is how he feels about the poking. i can't say that i blame him.

and finally with the last poke they were able to push in the rest of his factor. they seriously were so great about it. and it only took about three minutes total. but it's amazing how long those three minutes can feel when you are watching your baby go through stuff you never dreamed he would have to.

and here is evan with the last poke. i debated posting this picture or not. but it says so much about how he feels. and about how i feel too. this disease is hard. i mean, its managable and i am so thankful for that. but it's difficult to understand why he has it. it's trying to change your idealistic views of how you would raise your children when you are affected by something like this. it is sad to think about the things that could happen as a result of one simple accident when you are dealing with someone whose body just can't do what ours does.

i am getting better all the time with his diagnosis. but some days i feel like it's a one step forward, two steps back kind of equation. today my husband and i took evan outside to play and he was walking on the driveway and the sidewalk and i was beside myself with tension and fear that he was going to fall and hurt his head. or skin a knee. or scrape his foot. or an elbow. and it's those types of feelings that get my stomach in knots. because he's a kid. and they're going to get hurt. and i need to control the way my tension and stress might affect him. and by affect him, i mean the things that i automatically don't want to let him do, but that logic tells me he needs to do in order to grow.

but, he is the sweetest most loving baby in the world. and i know he gets good care when he needs it. and i know that we love him so much and that he will feel that always. even if we have to crush his dreams of becoming some sort of professional WWE wrestler.


oh, the irony.

well, today was e's 15 month check-up. weeeeeeeeeeee! he is definitely growing. he's now up to 23.5 pounds and 31 inches. this may not mean much to anyone else, but it means a lot to me. e is now in the 35th percentile for weight and 46th percentile for height. this is HUGE considering he had been in the 10th and 14th percentiles (respectively) at his last visit. and before that, he was in the 5th percentile for weight. i guess it's all the whole milk and cheese.

and something a little bit funny happened at the doctor's office today, too. we didn't see his regular pedi, as he was on vacation. we did see one of his colleagues, who seems to not understand the invention that is floss. anyway, he looked at e's head circumference measurement (which is in the 80th percentile) and seemed concerned. he said that he would like to re-measure his head in six weeks when he comes back for his next flu shot, and if it measures bigger he would like to send him for a ct scan to be sure there are no tumors or anything growing inside. and i laughed and said "oh, there's no need for that...he's had three ct scans in the past three weeks...everything in there is fine."

i guess the silver lining there is that being a hemophiliac (and a somewhat clumsy one at that) has it's advantages in early detection of abnormal growths in the head. or rather, reassuring us that there are none in there.