vomiting 101

part one:

it was suggested to me that i should do a post on our experiences with milo and his issues with vomiting, and how we got to where we are today, at a place where vomiting is at a nice minimum which we can handle without wanting to pull our hair out. i was going to do this all in one post, but it was getting too long, so it will be in a few parts.

it took a lot of trial and error for us...

i will start at the beginning. when milo was in the nicu he was a poor feeder. he would not take enough by bottle and had to get the rest of what he was supposed to be eating via ng tube...he would sometimes vomit up his feedings, and so after an upper gi it was attributed to gerd and he was put on reflux medication.

milo was sent home from the nicu taking about 3/4 of what he was supposed to be receiving for formula per day by mouth, and i guess the hope was that once home he would improve and take enough to keep growing and thriving. unfortunately that was not the case....his eating decreased and weight was lost, and failure to thrive became a reality. (keep in mind that at this point we did not know milo had neurological issues, pvl was diagnosed at 4 months when milo had his first seizures, and up until this point all of his issues had been deemed "preemie issues"). during these few months at home before he went back on ng tube feeds, while we were attempting to feed him 100 percent by mouth (a very horrible, nightmarish time for us, by the way) vomiting was not really an issue, probably because he didn't have enough in his stomach at one time to need to vomit.

when milo was about 8 months old we got to a point where getting him to eat was becoming an impossible task, his seizures were out of control, he was crying non stop, not sleeping, and everything was utter chaos. we decided to take him to the emergency room not really knowing what else to do (at the time we did not have the support system of doctors, nurses, and specialists that we have now), we told them we needed help and a plan to help milo asap and could not wait around for follow up doctors appointments...we insisted that they could not send us home until we had a plan. they admitted milo. i consider that a major turning point for milo.

the er doctor sat down with us and asked us what we would like to get accomplished during our stay at the hospital. i said that he needed to go back on tube feedings, we needed to do something different to gain control over his seizures, and that he seemed to be constantly fussy and uncomfortable and i wanted to know if there was anything that could help. so, he got an ng tube and we were taught how to administer feedings. he was switched from keppra to phenobarbital, and he was given a prescription for baclofen.

once home we had a whole new milo. he was calmer and seemed happier. seizures had decreased some, he seemed more comfortable and we had a way to feed him when he would not eat, also we all got to get more sleep since milo could be fed through the night via tube we no longer needed to get up every 3 hours to feed him.

but a common theme in the life of milo is that we often trade in one medical issue for a different one.

milo was feeling better and getting the amount of food that he was supposed to...but not keeping it all in. ever since they had put him on reflux medication in the nicu we had not had any issues with vomiting, except for the occasional spit up, but that is probably because his stomach never got full enough for it to be an issue, but now it was definitely an issue! he was throwing up at nearly every feeding, about 25 percent of the feeding at first, but he was still getting more then he was prior to the feeding tube so at first he was gaining a lot of weight, and we thought that maybe the ng tube was causing his gag reflex to kick in so we hoped that when he got his g-tube placed it would pass. it didn't.

stay tuned part two of vomiting 101....

cutest video ever? i think so.

milo's new favorite game....milo, let me in.

video taken by my dad while we were in maine.

enjoy :)

did you miss us?

my blog has been sorta missing for the past several months....at first because things were so crazy and milo seemed to be sick all of the time, and then it was because things were going so well and we were enjoying it and taking it all in....and then it was crazy and milo was sick, and then things were going so well, and so on and so forth.....such is the life of a special needs momma....but a recent trip to maine (where i grew up) made me realize how many people were keeping tabs on milo and our family through this blog so i decided i need to get my act together and blog already!

it would take me forever to fill you in on everything that has happened since last november....but i will give a summary for now...

up until the last couple of months milo's vomiting was out of control and a constant source of stress and worry for us. after a lot trial and error, countless hours reading, googling, going over message boards and e-mailing moms with kids with similar symptoms we have seemed to narrow down milo's vomiting triggers, make some small changes to his daily routine and have cut down his vomiting by like 90%. needless to say the last couple of months have been bliss for our family. we were able to take a trip to maine to visit friends and family, milo is steadily gaining weight and becomes more vocal and more silly every day. his head control has improved greatly and he is trying really hard to master rolling. life without constant vomiting is wonderful!

our trip to maine was so great, it was nice to get a break from the texas heat, and milo loved the constant attention from his grandparents and his cousin sophie. jesse and i got to see old friends who we missed so much, and eat at our favorite restaurants which we were homesick for as well.

we have the greatest nurse, eric, and he has made our life so much easier. he is so supportive and it is nice to have someone to care for milo who cares so much about our family and about milo....he even came to maine with us for part of our trip, he is the best!

okay....well that is the first segment on my update of the last nine months, i am sure i will keep thinking of things i wanted to write and i will put them in my next post which will be much sooner than nine months from now!

need advice

okay, so i know that i haven't updated in forever and i am really, really sorry, and totally plan to resurrect this little blog in the very near future....but right now i need advice from anyone who is still reading in the dallas area. we really need to find a new g-i doctor, we feel that we aren't going anywhere where we are right now and the doctor we have now is too unaccessible for us with all of milo's special gi needs. we don't mind taking a little drive to like fort worth for example if it were for the right doctor, so if anyone has any suggestions it would be greatly appreciated.

thanks.

guess who turns two on friday?

i want to invite all of our blog friends in the dallas area to milo's birthday party...i think i have all of your e-mail addresses and i will send an invite with the address to our house to you, but if you want to come and i don't have your e-mail address then e-mail me @ luvhellokitty3@msn.com. there are some of you we still haven't met and i would really, really love to have you come. we are from maine and have lived in dallas for a couple of years but all of our friends with kids live in maine, so it would be really wonderful to have some other kids here, so like i said, you would be really, very welcome and i hope you can make it!

warning...milo's cuteness may be contagious

so flu season has officially begun in the speed household. it all started last friday when jesse came down with conjunctivitis. saturday milo started to come down with a cold and a very nasty cyclic vomiting cycle thanks to said cold...which lead to a 12 hour day in the emergency room to get some iv fluids on monday. luckily they let us go home, but i blame those long 12 hours in the e.r. on me getting the stomach flu which i have had since tuesday night, today i am finally starting to feel human again.....and it has all come full circle with milo coming down with conjunctivitis today. so there you have it. i hope everyone else has had a calmer, healthier week.

happy halloween!!!

so a couple of weeks ago Jesse got laid off from work, AGAIN...it seems like we can't really catch a break lately. So all we have been doing for two weeks is sending out resumes, filling out applications, and a couple of interviews. He luckily found something, strangely enough it has nothing to do with anything he has ever done before, it is a sales position...he is excited about it and confident he will be a kick butt salesman, so keep your finger crossed for us that everything works out.

Halloween was fun. I couldn't find a costume for milo that I liked, and I am a little bit obsessed with twilight, I have read all of the books and seen the movie a million times and am anxiously awaiting new moon...so....

here is little edward cullen!

and daddy was vampire bill from true blood...one of our favorite shows...

and mommy was very busy helping everyone get dressed up!

hope everyone had a great halloween!

still alive...

first of all i want to apologize for not updating sooner. secondly i would like to thank all of the parents who left comments for us during our week long hospital stay...i appreciate the support we get from everyone who reads this blog and cares about milo, even though they may not have ever met him. the suggestions and information from parents who are going through or have gone through similar situations with their kids means so much to us, that information is so valuable. thank you.

the basic consensus from the doctors at the hospital, (and milo's doctors since being released) is that milo is dealing with something called cyclic vomiting syndrome. i was skeptical at first, but after reading up on it, talking to his doctors, and of course reading some blogs of parents dealing with it first hand, the diagnosis really fits. so now this monster has a name, but so far we have not controlled it one little bit. right now his cycles are lasting about five days with only about three days of feeling well before another one starts. it sucks. he is on periactin which for some people can help, but it doesn't work on everyone, and so far doesn't seem to be helping. one of the best ways to cut down on the frequency of episodes is to figure out what is triggering them and avoid it...but we haven't figured it out so far.

if you want to read a couple of really great articles about cyclic vomiting syndrome read these:

the truth about cyclic vomiting syndrome, by michelle from 5 minutes for special needs, and in the life of a child.

the disease in disguise, by joyce.

also, check out the cvsa.

i am really drained, but trying to stay positive.

update

so it was looking as though we would be coming home tomorrow....but the vomiting has reared its ugly head again so it will be longer. i am bummed but do not want to come home until he is ready and am glad they are taking this thing seriously this time and not just dismissing it as a virus or something like they have in the past. one theory that is being tossed around is cyclic vomiting syndrome, the symptoms sound similar to what has been happening, although kids do not usually develop it until around age three, but even though its not common for a kid as young as milo to develop it, it is not unheard of. i don't know. we will see.

here are some pictures of my little cutie at the hospital....

hospital stay number 5,320

okay, well not really that many, but it feels like it. this time we actually ended up in the picu. i stayed in the emergency room with milo from about 10pm to 9am without sleeping, and then spent the whole day in the picu with him...sleeping a bit here and there when i could. i was a mess, milo was a mess...i am tired and don't really feel like getting into all of the details, but i will later, i promise. the short story is that like always with these hospital visits, it was gi issues, but pretty extreme this time, like vomiting blood extreme. so anyway, he was transferred from the picu to the gi unit at children's in dallas this evening. i will explain more later and try to keep everyone updated. goodnight.