Wednesday, November 25, 2009

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 @ 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!

Sunday, November 15, 2009

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.

Monday, November 2, 2009

happy halloween!!!

so a couple of weeks ago Jesse got laid off from work, 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

here is little edward cullen!

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

and mommy was very busy helping everyone get dressed up!

hope everyone had a great halloween!

Friday, October 2, 2009

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.

Saturday, September 5, 2009


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....

Thursday, September 3, 2009

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.

Tuesday, August 25, 2009

so much to say....

i have been crazy busy head is constantly swimming and i am really having a tough time remembering the littlest things, let alone the big things. i need to blog more, to sort of sort out my thoughts, i think it would help but i only seem to think of doing it when i am busy and can't. i write whole blog posts in my head while driving to therapy, literally!

i am moving this week. so, that has kept me busy...i am not moving far, but to a bigger place. i will post pictures once we have our house all set up, it's so cute and i really love it. milo is doing pretty good. still having stomach issues, which i don't feel like writing about right now because it would really take a whole long post on it's own to explain all the symptoms and the fact that we, along with all of his doctors, don't know why he is still vomiting so much. it sucks. but what doesn't suck is the fact that milo has begun to be weaned off of his phenobarbital, yay!!! he will remain on topamax, and will probably need to remain on at least one seizure medicine indefinitely, but the doctor agreed with me that since he has not been having seizures for quite some time two were probably not necessary, so we just knocked one med off of the way too long list of medicines!

also, in even bigger news, milo has finally reached 20 pounds! weight gain has always been an emotional thing for me when it comes to milo. when he doesn't gain well (which he hasn't for much of his life so far) i feel like i have failed as a mother or something. i know, it's dramatic and irrational, and not true....but hey, i am a girl and i do have a tendency to at times be dramatic and irrational....and i have cried the whole way home after many weight checks so it is a wonderful feeling to see the numbers steadily climb like they have been the last few months.

well, that is my milo update for now...i will post again soon, hopefully with some pictures of our new place.

Friday, July 31, 2009

i have a question....

we are planning on going to home to maine for christmas this year....we would be flying of course, and it dawned on me that milo turns two in november so he will no longer be allowed to fly on my lap...

so my question is...does anyone know if they ever make exceptions to this rule? i would hate to spend all of that extra money getting him a seat of his own that he cannot even sit in. He is very small, only 19 lbs right now, and i doubt that by christmas he would be anymore than maybe a three or four pounds heavier. and he isn't sitting yet and has quite a way to go before he reaches that goal, longer than by christmas...

so if anyone knows if it is possible to convince an airline to make an exception please let me know! thanks.

Sunday, July 26, 2009

on a lighter note...

thank you everyone for your comments to my last post...the rational part of me knows that a chart is just a chart, and no piece of paper can determine what milo is capable of, but sometimes the irrational part of me takes over and i am a worried mess. i am very lucky that i have had the opportunity to have "met" such a wonderful supportive group of moms through this blog that can snap me out of it when i get like that.

on a lighter note, if you want to feel uplifted and have a really good laugh, watch this video!

Sunday, July 12, 2009

thinking about the future makes me cranky

the closer we get to milo's second birthday the more scared i become....scared about his progress, scared he is still not sitting, scared that he isn't even close to being able to sit, scared that he still cannot hold his head up on his own, or roll over, or clasp objects in his hands for longer than a minute. i am scared about the future, and what they say about turning two...if a child with cerebral palsy isn't sitting by two they probably won't walk...that is really, really scary to me.

if he were to turn two today then according to the chart he would be in the level five classification of cerebral palsy, the most severe....the most severe? i can't even wrap my head around it, because to me he is this bright, charming, funny little boy who's body won't let him move correctly...i know he is developmentally way behind, i don't like to be around other kids his age because i don't like to start thinking about the stuff he should be doing at this age, i don't like makes me sad and i avoid it, and now i really don't like looking at the cp chart...

i hate that i am dreading his birthday, birthdays are supposed to be happy days you look forward to, and all i see is a deadline....milo needs to learn to roll over and have better head control by sept 27 or else he will be at the fifth if it even worked that way, milo goes at his own pace and will roll over when he is ready. i try to stay positive...but sometimes it is really hard to keep a positive attitude when your just so pissed off at the whole situation, it's not fair...why milo? why anyone's child? i effing hate cerebral palsy.

but i love this guy....

Monday, July 6, 2009

milo update....finally!

it's been so long since i last posted, I was supposed to tell everyone about the whole hospital stay but honestly there isn't too much to tell, like so many things with milo it was a mystery. he was vomiting repeatedly whenever he was on his j-tube feeds, when he wasn't on the feeds he was still not feeling too great but not vomiting, so at the hospital they stopped his feeds and put him on an iv for a couple of days and did a ton of tests, which all came back normal. when we started his feeds again he did better, so we went home.

everything is going great right now, milo has been feeling really good, i think this is the longest stretch of him being healthy and feeling well we have had in a long time, if ever (knock on wood). the only issue he has been having lately is teething, which is a nice, "normal" issue that all parents deal with! he is getting his upper molars, and he is not happy about it, his z-vibe helps a lot...

jesse recently got laid off from his job, which sucks. we have been doing a lot of job hunting for cross your fingers that he finds something soon. although it has been nice having him home, and he has been really helpful, it would be nicer to have him working!

so that is what is new with us.....i will leave you with some new photos of mister m!

Friday, June 19, 2009

we are home!!

i will elaborate more later....but milo is doing great now. thank you everyone for your words of support!

Wednesday, June 17, 2009


milo has been admitted to children's hospital in dallas. he has been retching, dry heaving, and vomiting up stomach acid constantly since monday night, we went to the e.r. last night for the second time (we had gone very early tuesday morning but were sent home after five hours because they could not reach anyone from the gi department and they told us it was probably just a stomach virus). his poor little face is one big red puffy rash from the throwing up, and it definitely is not just a virus, he is only retching and vomiting when he is hooked up to his j-tube feed. they took a second x-ray last night (they had taken one in the am as well) and they are thinking that he is impacted. they are also doing a bunch of other tests and we are hoping to get to the bottom of what is wrong soon. i will keep everyone updated as much as i can, right now i have to get ready to head back to the hospital.

Thursday, June 4, 2009

wordless thursday

rexy stealing a kiss from mister milo

Monday, June 1, 2009

i heart faces and kitties

this week at i heart faces they have a special "anything goes" pet category. this is my little sister's cat spanky, he is a manx cat and so, so, sooooo cute! hope you all like it!

Friday, May 29, 2009

a new look and a half birthday

i have revamped my blog...and finally made a banner with milo's adorable little face on it, which i have been meaning to do for a while. so much has been going on here lately. i keep meaning to sit down and write an actual post but never seem to get around to it. milo turned one and a half the other day, it has been a crazy year and a half too! so much has happened and i think i have probably aged about 10 years in that time, and i have the grey hair to prove it....but i am so in awe of milo, and so proud, and although i get really sad sometimes thinking about all he has gone through, and we as a family have gone through, i am so happy that he is my's all so worth it, every last grey hair is worth it!

we had to make a tough decision recently regarding milo's issues with vomiting...we basically had to decide whether or not milo should get a nissan fundo, or a gj tube. both had their advantages and disadvantages...nissans don't work for every kid, from what i was told it seemed like a 50/50 chance, it was either going to work great, or cause even more problems. the gj tube meant that milo would have to be hooked up to a continuious feed for a majority of the day, no more bolus feedings. so after alot of internet searching and talking to different people about it we decided to start with the gj tube. it was a less intrusive option and if it doesn't work it's very easy to reverse, unlike the nissan....and if it doesn't work a nissan is always an option in the future.

he just had the procedure done yesterday and so far so good. he seems to be feeling better then i have seen him in quite a while. i can't imagine it was much fun for him vomiting several times a day, and when we did our practice feeding by mouth today he ate half a jar of gerber stage 2 mac and cheese which is the most he has eaten by mouth in a long time....since before the vomiting got out of control, so keep your fingers crossed that this does the trick and milo can start growing and thriving....milo has been a skinny baby for much too long, bring on the chubby baby cheeks!

Wednesday, May 27, 2009

under construction

i'm changing the look of the blog....and have temporarily lost my blog roll and some other things, but everything should be fixed soon!

Monday, May 18, 2009

i heart faces

this week at i heart faces it is the blurb book photo contest, and if your picture is chosen it will be in the blurb book....there is no theme per se, just pick you favorite picture. I really like the expressions that milo and his daddy are making in this picture, they are both too cute!

I am submitting this photo into the Blurb Book photo contest. I am granting I Faces permission to use my photo in a printed version of a book for commercial use and possibly advertising of a photo book on both the Blurb and I Faces web sites.

Sunday, May 10, 2009

Happy Mother's Day!

Click to play this Smilebox scrapbook: Happy Mother's Day

Monday, May 4, 2009

i heart faces

this is my first time entering a photo in an i heart faces contest....the theme this week is 'hats', and i had the perfect picture for it so i thought, why not.....i love this picture of milo, he is such a little goofball!

Wednesday, April 29, 2009

swine flu

so i don't typically worry about things like this....but having a child with health problems has made me a bit more paranoid than i normally would be. i live in dallas, and there have been reported cases of swine flu here....and they are actually closing public schools in fort worth until may 11 as a precautionary measure, i honestly wasn't worried at all until i heard this but then i wondered, is it that serious? i mean if fort worth isd is shutting down schools for two weeks, should i be worried? texas has suspended high school sports due to swine flu fears...
and then i read the symptoms:

Symptoms: are expected to be similar to the symptoms of regular human seasonal influenza and include fever, lethargy, lack of appetite and coughing. Some people with swine flu also have reported runny nose, sore throat, nausea, vomiting and diarrhea.

hmm....well, that could be milo on any given day. he often spikes fevers for no apparent reason, he takes seizure meds so there is your lethargy, his appetite is nonexistent, he has allergies and doesn't swallow his spit very well so that causes coughing...and a runny nose, i would have no way of knowing if his throat was sore, and milo throws up every day, and due to his liquid diet his poop is always you have it.

i realize that when milo has gotten sick in the past i figure out he is sick and it's something more than just his usual issues...but it still makes me worried, what if i didn't notice the symptoms early enough? and milo goes to our children's house for therapy where he is around lots of other kids...they are good about wiping things down between use and i am sure that they are taking all of the necessary precautions since there are immune compromised kids that go there...but again, it still makes me worried.

are any of you taking any special precautions due to this whole swine flu thing?

Friday, April 24, 2009

a poem...

i just came across this while searching online for something completely unrelated. one of the reasons i started this blog was to update family and friends on what is going on in the life of milo, but another reason, and i think the biggest reason actually, was to connect to other parents of special needs kids, to learn from others experiences and so that maybe someone else could learn from ours...and also to know that we aren't alone and that there are other people out there who understand the ups and downs that we go through. i felt sort of lost and alone before i discovered this whole online special needs parents blogging has helped alot. this poem really sums it up...

To You, My Sisters

by Maureen K. Higgins -

Many of you I have never even met face to face, but
I've searched you out every day. I've looked for you
on the Internet, on playgrounds and in grocery stores.

I've become an expert at identifying you. You are well
worn. You are stronger than you ever wanted to be.
Your words ring experience, experience you culled with
your very heart and soul. You are compassionate beyond
the expectations of this world. You are my "sisters."

Yes, you and I, my friend, are sisters in a sorority.
A very elite sorority. We are special. Just like any
other sorority, we were chosen to be members. Some of
us were invited to join immediately, some not for
months or even years. Some of us even tried to refuse
membership, but to no avail.

We were initiated in neurologist's offices and NICUs, in obstetrician's offices, in emergency rooms,
and during ultrasounds. We were initiated with somber
telephone calls, consultations, evaluations, blood
tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things
were fine. We were pregnant, or we had just given
birth, or we were nursing our newborn, or we were
playing with our toddler. Yes, one minute everything
was fine. Then, whether it happened in an instant, as
it often does, or over the course of a few weeks or
months, our entire lives changed. Something wasn't
quite right. Then we found ourselves mothers of
children with special needs.

We are united, we sisters, regardless of the diversity
of our children's special needs. Some of our children
undergo chemotherapy. Some need respirators and
ventilators. Some are unable to talk, some are unable
to walk. Some eat through feeding tubes. Some live in
a different world. We do not discriminate against
those mothers whose children's needs are not as
"special" as our child's. We have mutual respect and
empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with
whatever materials we could find. We know "the"
specialists in the field. We know "the" neurologists,
"the" hospitals, "the" wonder drugs, "the" treatments.
We know "the" tests that need to be done, we know
"the" degenerative and progressive diseases and we
hold our breath while our children are tested for
them. Without formal education, we could become board
certified in neurology, endocrinology, and psychology.

We have taken on our insurance companies and school
boards to get what our children need to survive, and
to flourish. We have prevailed upon the State to
include augmentative communication devices in special
education classes and mainstream schools for our
children with cerebral palsy. We have labored to prove
to insurance companies the medical necessity of gait
trainers and other adaptive equipment for our children
with spinal cord defects. We have sued municipalities
to have our children properly classified so they could
receive education and evaluation commensurate with
their diagnosis. We have learned to deal with the rest
of the world, even if that means walking away from it.

We have tolerated scorn in supermarkets during
"tantrums" and gritted our teeth while discipline was
advocated by the person behind us on line. We have
tolerated inane suggestions and home remedies from
well-meaning strangers. We have tolerated mothers of
children without special needs complaining about
chicken pox and ear infections. We have learned that
many of our closest friends can't understand what it's
like to be in our sorority, and don't even want to

We have our own personal copies of Emily Perl
Kingsley's "A Trip To Holland " and Erma Bombeck's "The
Special Mother". We keep them by our bedside and read
and reread them during our toughest hours. We have
coped with holidays. We have found ways to get our
physically handicapped children to the neighbors'
front doors on Halloween, and we have found ways to
help our deaf children form the words, "trick or
treat." We have accepted that our children with
sensory dysfunction will never wear velvet or lace on
Christmas. We have painted a canvas of lights and a
blazing Yule log with our words for our blind
children. We have pureed turkey on Thanksgiving. We
have bought white chocolate bunnies for Easter. And
all the while, we have tried to create a festive
atmosphere for the rest of our family. We've gotten up
every morning since our journey began wondering how
we'd make it through another day, and gone to bed
every evening not sure how we did it.

We've mourned the fact that we never got to relax and
sip red wine in Italy . We've mourned the fact that our
trip to Holland has required much more baggage than we
ever imagined when we first visited the travel agent.
And we've mourned because we left for the airport
without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never
stop believing. Our love for our special children and
our belief in all that they will achieve in life knows
no bounds. We dream of them scoring touchdowns and
extra points and home runs.

We visualize them running sprints and marathons. We
dream of them planting vegetable seeds, riding horses
and chopping down trees. We hear their angelic voices
singing Christmas carols. We see their palettes
smeared with watercolors, and their fingers flying
over ivory keys in a concert hall. We are amazed at
the grace of their pirouettes. We never, never stop
believing in all they will accomplish as they pass
through this world.

But in the meantime, my sisters, the most important
thing we do, is hold tight to their little hands as
together, we special mothers and our special children,
reach for the stars.

Wednesday, April 22, 2009

for poppy

milo's poppy (and my dad) has requested some new pictures of here they are!

i have been meaning to sit down and write a post, but every time i try i can't seem to organize my thoughts and come up with anything coherent. i plan to post in the next couple of days, until then.....

at the farmer's market

looking cool with his shades on

handsome boy

mister m....having fun with daddy

Friday, April 3, 2009

teacher's helper

this past saturday milo was the demonstration baby at a course at baylor called "NDT Treatment of the Baby and Child" was really interesting. the instructor for the course, suzanne davis, worked with milo for a little over an hour. his regular pt, along with many other familiar faces from our children's house (where milo goes for therapy) were there for the course. i think we got some good ideas for things to try with him both at pt and at home. milo did really well, one of the things i really liked about suzanne was that even though she had just met milo she was amazing at figuring out his likes, dislikes, and how to coax him into doing stuff he really wasn't too keen on at first. she has a clinic in florida where they do "intensives", children are treated 3-4 hours per day for a period of one to three weeks. at the end of her session with him milo was purposefully exploring the yarn hair of a doll with his open hand, which is pretty big for him since that is not something he does often.

this thursday we are taking milo to a "beeping" easter egg hunt @ white rock lake for kids with vision impairments. i think it will be fun, i know milo won't really understand the concept of searching for easter eggs quite yet but he really likes noisy crowded places so it's worth going to.

a couple of weeks ago we got happily bombarded with packages in the mail. milo got several things from his amazon wish list...and we wanted to say thank you to milo's aunt becky, ma tante kate, and m'aime speed. i also want to say thanks to milo's nanny and poppy and auntie nicole for the stuff they sent. and last but not least thanks to milo's aunt eilene and grandma for the stuff they have done lately. some what related to this i am greatly lacking in addresses of family members and i would really love to have them for thank you cards, if you are a family member or family friend i would really appreciate it if you could take a moment to e-mail me your address! please! my e-mail address is thank you.

Wednesday, March 18, 2009

wordless wednesday!

Saturday, March 7, 2009

what's new?

what's new in milo's life? well....a lot has been happening lately so here is an update.

1. milo has been seizure free for about three weeks now!!!!!!!!!!!! i am not exactly sure how or why but am thrilled none the less. his seizure meds went up slightly a couple of weeks before they stopped, and he went on a new formula which has majorly decreased milo's vomiting (including vomiting up his meds which would happen pretty regularly) so maybe it was one or both of these things...i just hope whatever it is it keeps working.

2. sleeping......sigh. lately milo has not been the good little sleeper that he used to be. he usually starts trying to get up for the day at around 2am...and then it is just a losing battle from there. i reposition him and he will fall back asleep for maybe an hour, then he is up again, and this goes on until about 5am when no amount of repositioning is going to get him back to sleep and we are up for the day. so from 2am to 5am i am up and down and up and down which does not equal quality sleep, and 5am is sooooo early. milo used to sleep until 8am, those were the days!

3. milo has finally found his laugh. it is goofy and infectious and it makes me so, so happy.

4. milo is making progress with eating solids. he was really picky at first with what he would eat...and for a while he would only eat gerber stage two mac & cheese....but milo loves his z-vibe, and so one day at feeding therapy we tried putting some food on his z-vibe first, and let him get used to the taste that way, then trying it with a regular spoon. it worked like a charm! we have a z-vibe at home too which we got on, and so whenever milo is trying a new food we just dip the z-vibe in it and give it to him on that. you can also get spoon attachments for the z-vibe which we may try as well.

that is all i can think of right now....but here are a few pictures of mr. m in all of his adorableness.

Wednesday, March 4, 2009

milo's wordle

Sunday, March 1, 2009

as promised...

the childrite seat arrived a few days ago and we really love it. milo is a little peanut and still has trouble holding his head up so he needs to grow into it a bit. for him the seat works much better with a tray, the tray helps him hold himself up. i don't really think the tray i have right now works very well...i plan on ordering the same one that holly at caleigh's corner found for caleigh's childrite seat. here are a couple pictures as promised.

Friday, February 20, 2009

childrite seat

we have been wanting one for a while now, but couldn't afford it. milo's wonderful, awesome, super, spectacular grandparents*, mémé and papa (jesse's mom and dad), have bought him one and it is on it's way! we can't wait! so.... thank you, thank you, thank you, thank you, thank you mémé and papa! love you guys! pictures to come once it arrives.

*don't worry other are all equally
wonderful, awesome, super and spectacular...and we appreciate all of you. :)

Wednesday, February 11, 2009

so sick of being tired and oh so tired of being sick

well, i'm not sick, but milo has been sick for going on three weeks...and now jesse has some sort of stomach bug, so i am definitely tired.

i had a birthday last week, i am 29 years old more year until the big 3-0. usually for my birthday i go out to the bars with my friends, have some drinks, usually too many drinks, and feel awful the whole next day...but that didn't really feel like it fit this year, so, i decided that i wanted to go the the aquarium, and then out to dinner. we had a really good time. milo loved the aquarium, he was really very interested in his surroundings while we were there, and so well behaved...there was not even one fussy moment the whole time we were there, it was wonderful.

as far as milo's sickness, i really cannot seem to figure out what is going on with him. he started to have cold symptoms towards he end of january, everything cleared up within a week except for nasal congestion and a very runny nose, we took him to the doctor and they thought maybe it was a sinus infection, so he went on antibiotics. during the cold, and then sinus infection he was very pukey, but milo tends to throw up quite a bit anyway and its always way worse when he is sick, so i wasn't too concerned, also he was on antibiotics which can cause an upset the antibiotics ended on friday, the runny nose was gone, but the vomiting was worse than ever, to the point that he was not keeping anything down. so now i WAS concerned about the vomiting. he had no fever and no signs of dehydration, even though he wasn't keeping much down, so on sunday i called the on call nurse who told me to give pedialite by tube until he is holding it down for several consecutive hours, then try formula, in small doses. he did a little better with holding down pedialite, but then when i tried formula again the vomiting resumed....and i had called the doctor's office first thing monday morning but they couldn't get us in until anyway, by tuesday i was a nervous wreck, milo had barely eaten for days (milo is primarily tube fed so when i say eaten i mean by tube), so i decided to go to the e.r., just in case.

the e.r, was busy, and we were there forever, and it sucked....we got there at about noon, and went home at about 11 pm. they took some x-rays of his tummy to make sure his tube was okay and there was not blockages anywhere. the x-rays came back okay, so, they decided it was probably a stomach flu, probably the same thing jesse has,.....then we stayed all day to experiment with his feedings...and how many ml/hr he could tolerate. so right now until this passes he is not getting his normal daytime bolus feeds, but instead a 24 hr continuous feed of 30ml/hr. he is keeping most of it down so far, and we will re-evaluate everything at his doctors appointment on friday.

one thing i am kind of wondering is if maybe we should have gotten the nissan wrap when milo got his g-tube, because vomiting is such an issue with milo, even when he isn't sick. if anyone has any advice about nissan wraps and vomiting i would love to hear it.

Saturday, January 24, 2009

new things.....

milo has gotten some new stuff lately, first of all a kimba spring pediatric wheelchair....

i will have to post some pictures of him in it with the canopy and everything on it's really cute, and i took these pics with my cell phone so there not very good....

second, he got a new stander, which i haven't gotten any pictures of yet, but they will be coming later......

and third he got his first pair of little shoes...we have never gotten him any before because, well, he doesn't walk so we just never have...but now that he has the stander his pt said we should use it with shoes on.....

and he is just so adorable in them, i just really cannot believe how big he is getting, he just looks less like a baby and more and more like a little toddler everyday....more pictures to come.

also, if anyone has some good tips on how to keep him happy and entertained while in his stander i would really appreciate it, thanks :)