I Heart Milo

vomiting 101

2010-10-25T12:10:00.017-05:00

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.

2010-09-10T09:44:00.002-05:00

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

video taken by my dad while we were in maine.

enjoy :)

did you miss us?

2010-09-03T19:44:00.008-05:00

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

2010-06-07T21:33:00.003-05:00

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?

2009-11-25T14:45:00.003-06:00

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

2009-11-15T22:53:00.005-06:00

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!!!

2009-11-02T16:41:00.009-06:00

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...

2009-10-02T21:20:00.004-05:00

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

2009-09-05T22:58:00.004-05:00

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

2009-09-03T20:34:00.002-05:00

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.

so much to say....

2009-08-25T00:14:00.002-05:00

i have been crazy busy lately...my 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.

i have a question....

2009-07-31T11:09:00.004-05:00

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.

on a lighter note...

2009-07-26T10:20:00.001-05:00

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!

thinking about the future makes me cranky

2009-07-12T09:10:00.001-05:00

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 comparing...it 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 level....as 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....

milo update....finally!

2009-07-06T00:24:00.000-05:00

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 him...so 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!

we are home!!

2009-06-19T13:26:00.001-05:00

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

hospital-land

2009-06-17T11:01:00.003-05:00

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.

wordless thursday

2009-06-04T17:55:00.001-05:00

rexy stealing a kiss from mister milo

i heart faces and kitties

2009-06-01T22:18:00.001-05:00

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!

a new look and a half birthday

2009-05-29T12:27:00.003-05:00

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 son...it'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!

under construction

2009-05-27T22:06:00.001-05:00

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!

i heart faces

2009-05-18T21:27:00.004-05:00

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 www.iheartfaces.com 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.

Happy Mother's Day!

2009-05-10T12:29:00.002-05:00

i heart faces

2009-05-04T13:13:00.003-05:00

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!

swine flu

2009-04-29T22:57:00.005-05:00

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 runny....so....there 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?

a poem...

2009-04-24T23:40:00.006-05:00

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 universe...it 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
try.

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.

for poppy

2009-04-22T18:29:00.004-05:00

milo's poppy (and my dad) has requested some new pictures of milo....so 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

teacher's helper

2009-04-03T13:15:00.005-05:00

this past saturday milo was the demonstration baby at a course at baylor called "NDT Treatment of the Baby and Child".....it 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 etc...so, 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 luvhellokitty3@msn.com. thank you.

wordless wednesday!

2009-03-18T15:02:00.003-05:00

what's new?

2009-03-07T21:00:00.002-06:00

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 amazon.com, 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.

milo's wordle

2009-03-04T15:25:00.006-06:00

as promised...

2009-03-01T22:00:00.003-06:00

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.

childrite seat

2009-02-20T20:22:00.007-06:00

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 grandparents...you are all equally wonderful, awesome, super and spectacular...and we appreciate all of you. :)

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

2009-02-11T15:16:00.002-06:00

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 now...one 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 stomach...so 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 friday...so 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.

new things.....

2009-01-24T13:50:00.004-06:00

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 later...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 :)

march for babies....

2009-01-23T21:42:00.004-06:00

so, we have decided to do the march of dimes march for babies this year.....

"one day... all babies will be born healthy, today... too many moms and families know the heartbreak of having a baby born fighting to survive.
i've joined March for Babies because the March of Dimes champions the needs of moms and babies in our community and across the nation. the money we raise for March for Babies will help:

support all-important research offering preventions and solutions for babies born too soon or with birth defects

educate women on things they can do to increase their chances of having a healthy baby

provide comfort and information to families with a newborn in intensive care

push for newborn screening and health insurance for all pregnant women and children

please help by donating today!

it's easy, safe and secure - just click to make your donation.

the mission of March of Dimes is to improve the health of babies by preventing birth defects, premature birth, and infant mortality."

please sponsor us :)

little man

2009-01-19T17:08:00.005-06:00

my little man....isn't he a cutie?

please write a letter or send an email for emerson.

2009-01-18T10:27:00.002-06:00

please take a little time today to go to emerson white's journal. many of you may have heard what's going on already, but basically what has happened is that emerson lives in colorado, it is where her house is, it is where her father and brothers are, it is where her parents pay taxes, ect....but emerson has been being treated at a hospital in nebraska, and since she has been in nebraska for so long colorado medicaid is dropping her. since she is not a resident of nebraska she cannot get medicaid from them. they have met their life time max for their private insurance, so medicaid is all they have, and over the past month emerson developed complications resulting in the removal of 90% of her new transplanted bowel, so she needs another transplant to survive. she has to have medicaid to have the transplant. without the transplant she will not make it. i really cannot beleive that her family is having to go through this right now, i cannot imagine the stress, the frustration, and the worry they must be feeling. i hope this situation gets quickly resolved and we can all help by writing letters and sending e-mails. on her blog emerson's mother (erika) has listed addresses and e-mail addresses, and alot more details. emerson white's journal

wordless wednesday....a day late

2009-01-15T08:39:00.002-06:00

milo with diana......pt extraordinaire.

look at how good he is doing at holding his head up....

he was holding this position for at least 30 seconds at a time, then he would get a little tired and put his head down for a few seconds to rest, and then put it right back up again.

yay milo!!!

what to blog about.....?

2009-01-06T22:28:00.012-06:00

i have had a little bit of writers block lately with the blog....maybe because things have been going so well with milo. he is just so pleasant & cute & sweet & cuddly & so on! he is getting much better at holding his head up, i don't think it will be too long before we have that one mastered.

one little concern i have right now is that he grinds his teeth...alot. so much in fact that one of his to front teeth appears to have the enamel wearing off. this may also have something to do with the meds he's on...im not really sure. i am going to bring it up at his pcp appointment next friday and see what his doctor thinks should be done. we have a neuro appointment coming up....and a gi appointment to set a date to switch from his g-tube to a button, we will be switching to pediasure following that appointment as well.

all and all it's been a pretty good start to 2009, my new years relolution, you ask? to try and stay more positive.

happy holidays

2008-12-31T00:38:00.004-06:00

i hope everyone had a great christmas.....we did. I dropped the ball on picture taking and barely have any, but we did get milo's picture taken with santa and i will post it as soon as i put it on my computer. i really don't have too much to post and i am really tired but i realized it had been a while so i thought i would say we are still here, still good, and still reading.

alternative therapy ?

2008-12-14T11:26:00.016-06:00

it seems like there have been a lot of posts lately about alternative therapy from the blogs that i follow. now that milo has been doing pt, ot, and st for a while i have been thinking about alternative therapy and if there is more i could be doing. so now where to start? first of all i need to figure out what types of alternative therapy would be best for milo, there are a few that i am really interested in.

HYPERBARIC OXYGEN THERAPY -HBOT is a medical treatment that uses pure oxygen to speed and enhance the body's natural ability to heal. in many cases, children with brain disorders have brain cells that are "sleeping". they have enough oxygen to live but don't have enough oxygen to actually function like normal brain cells. these cells can't participate in the recovery process. with HBOT, oxygen bathes the brain cells, giving them enough energy to participate in the recovery process. HBOT also improves the blood supply to these nerve cells that are now awake but have no clear direction as what to do.

recently ellen over at To The Max mentioned how her husband squeezed himself into a narrow glass tube with max for his therapy, which made me want to learn more about HBOT, and now that i have researched it i think this may be a great therapy for milo.

CONDUCTIVE EDUCATION - the conductive education philosophy is based on the adaptive powers of the brain and neurological system. through repetitive tasks, the brain finds new ways to send messages to various muscle groups in order to execute and strengthen the desired movements.

holly over at Caleigh's Corner recently wrote about how caleigh started taking conductive education classes, and jacolyn's daughter grace over at Lieck Triplets goes to A Child Can Do All Things which is a non profit organization which teaches conductive education, it seems like a really awesome place and it happens to be in dallas, where i live.

ADVANCED BIO-MECHANICAL REHABILITATION (ABR) - and last but not least, ABR.
ABR is a method of structural correction of musculoskeletal deformities. it is a hands-on method performed by the parents who learn the ABR technique and individual prescription of applications from ABR professional staff.

so many parents of the blogs that i follow and look to for advice and guidance are involved in ABR. bird over at Bird On the Street recently wrote a post about all of the progress her son charlie has made since they started ABR. nelba over at Chocolachillie has a lot of information about ABR on her blog, as well as jacqui over at Terrible Palsy. i could go on and on because there are so many wonderful parents who write wonderful informative blogs who are doing ABR with their kids. it is something that i would love to do with milo, which brings me to the next part of my post.

how does one go about paying for alternative therapy if it is not covered by insurance? i really don't know how to go about raising the money to pay for alternative therapy, i've racked my brain trying to come up with ideas, but i've got nothing. we definitely don't make enough money to pay out of pocket. any suggestions or ideas would be really helpful....

luvhellokitty3@msn.com

quick update

2008-12-05T22:39:00.005-06:00

we came home from the hospital on wednesday evening....milo is doing great, he still has a pretty bad cold but is feeling better everyday. thanks for the comments of support. it always means a lot to me.

milo is in the hospital...

2008-12-02T22:18:00.005-06:00

he had a little cold since saturday...which got a lot worse overnight. he had a fever of 101.1 this morning, but what had me the most concerned was his g-tube site was suddenly deep red and oozing yellow stuff. his doctor couldn't fit him in so we went to the er and they decided to go ahead and start him on iv antibiotics and have him stay overnight. they also did a bunch of tests, and hopefully we will be able to go home tomorrow. i feel so bad for him....he obviously feels very yucky, and he has a bad cough so everytime he starts to fall asleep he starts coughing and it wakes him up...poor baby.

progress

2008-11-29T22:46:00.008-06:00

milo is making alot of progress in pt, ot, and speech. he especially likes ot, i think because he really connected with his therapist katie, when he hears her voice he smiles and starts kicking his feet...it's very cute!

he keeps surprising us at home with randomly doing stuff we didn't know he could do, like lifting his head for 30 seconds straight....or making noises we didn't know he could make, like the other night after we put him to bed he was making his normal cooing noises, and then he said "oh, why-bo" ....i have no idea what it means but it was definitely adorable.

he is reaching for things all the time now, touching my mouth when i talk to him, and he discovered that my hair is very fun to grab a hold of and pull. and smiling....he is smiling a ton now. also, i can't really be sure but i think he is seeing better, he seems to be looking around more and more aware of his environment.

i'm really proud of him and ecstatic with all of the positive improvements he's been making. everyday i never know what to expect....and it's so nice to say that and mean it in a good way, and not in a panicky, worried kind of way.

dear milo.....

2008-11-27T22:05:00.005-06:00

Dear Milo,

A year has past since we started on this journey together. It has been a year of ups and downs, of joy and pain, and of making progress and grieving losses. But mostly it has been a year of love and hope. Your name means soldier...that is not why we named you Milo, it was just a name we happened to like, but we are so glad we did. It is a name so fitting for you because you are such a little trooper, such a fighter, and so strong. We are bursting with pride. Happy first birthday little peanut.

Love Mom and Dad

happy thanksgiving....happy birthday!

2008-11-27T11:57:00.003-06:00

so today it's official...milo is a one year old! i know i've been talking about it for weeks now but today is the actual day....and it's milo's daddy's birthday too, so happy birthday jesse! and to everyone else, happy thanksgiving!

picky eater

2008-11-25T11:12:00.004-06:00

we have been working on eating solids with milo for a while now, and he is doing really well....as long as he is eating gerber stage two macaroni & cheese. i'm serious, that's the only thing he will really eat. he will take a few bites of other foods, and then make a face like he is totally disgusted, but he will eat the whole jar of mac & cheese, so i know he is capable of eating, he is just really, really picky! what do i do? does anyone else have babies that are this picky?

milo parties like a rockstar!

2008-11-23T12:50:00.006-06:00

milo's party was really fun....we made way too much food, it was a cupcake party and we made and decorated 100 cupcakes!

we also had a bunch of unfrosted ones for the kids to frost and decorate...

milo got some great presents and it was really nice to get everyone together to celebrate...

...we of course missed our family in maine and they were in our thoughts. happy (early) first birthday milo!

birthday party day!

2008-11-22T09:26:00.003-06:00

today is the day of milo's first birthday party!! i will try to post some pictures either tonight or tomorrow so stay tuned....

video of milo being a cutie....

2008-11-17T22:03:00.002-06:00

milo

a letter from daddy

2008-11-14T23:44:00.003-06:00

From Daddy.

Almost a year ago, I was given a special birthday present few other dads can say they have ever received. Since that day my life has never been the same. It has been a year of joy and laughter. Pride and strength. It has also been filled with tears, worry, scares, and despair. Now this first year of your life is done and you journey into year two. I will be there with you. I will be there to hold your hand when all your hard work pays off and you take your first step. I will laugh and sing with you when you can hold your head up high and clap your hands.

The road this far has not been kind to you. The roads ahead may not be any less rocky. But at least now we will know different paths to take and if not we will get a bulldozer and just push right through. Because I know nothing will stop you from being the best you can be. The world is sometimes a cold and cruel place, but whenever I see your blue eyes shine at me and hear your gentle little laugh I know that there is hope. Hope for all of us.

You are strong. You are brave. You are Milo James Speed. You are my son.

I love you always, Dad

milo was born six weeks early last year on the day of his dad's birthday...it was a very unexpected birthday present since we were definitely not expecting him to make an appearance quite yet, but it was a very special day and we like to say that milo came early just to wish his dad a happy birthday.

a birthday quickly approaches

2008-11-09T10:03:00.004-06:00

things have been a bit crazy around here with pt, ot, and speech therapy for milo three times a week now at our children's house...plus all of his doctors appointments and specialists which already kept us pretty busy. i feel like i'm never home, but busy is good because when your busy there is less time to think and dwell on things and become overwhelmed.

milo's birthday is coming up and i guess i never really thought about how i would feel about it...i mean of course i'm happy because it represents the fact that we all made it through this challenging year, and of course it's a birthday, which is suppose to be happy, right? but it also reminds me of all the things that a "normal" kid milo's age would be doing right now...learning to walk, saying words, even simple things like eating food...milo can't even hold his head up let alone sit or stand, and he is fed primarily through a feeding tube.

overall i accept the way things are at this point, but i still have my moments where i get stuck on thinking about how unfair it is, and his birthday has sort of stirred up all of those feelings. it also brings up the memories of how he came too early, and if he hadn't things might be so different...sigh. but that's just the negative emotions i've been feeling...and there is so much more positive than negative.

picture post

2008-11-08T10:39:00.002-06:00

first of all here are some halloween pictures...

we went with the batman costume

and who doesn't love pictures of babies eating, with food all over their faces?

here's a couple of milo being silly in his crib...

and last but not least, to show off those beautiful blue eyes...

long overdue update...

2008-11-04T13:34:00.004-06:00

i have not been a very good blogger lately...things have been a bit hectic around here. milo has started going to therapy three times a week at our children's house and we are trying to sort of find our flow and our routine...we are starting to get the hang of it. i am going to post a bunch of pictures later, i just haven't put them on the computer yet. milo's birthday is coming up in a couple weeks and so i am going to post the link to his wish list on amazon.com for those friends and family who have been asking for help on what milo might need. this is just a short post for now so that everyone knows were still here. i will write more later along with pics!

milo's wish list

poem

2008-10-19T09:44:00.003-05:00

i recently came across this poem.....

GOD KNOWS A GOOD MOTHER
by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth, son. Patron saint, Matthew.

"Forrest, Marjorie, daughter. Patron saint, Cecelia.

"Rudledge, Carrie, twins. Patron saint... give her Gerard. He's used to profanity."

Finally, he passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one, God? She's so happy."

"Exactly," smiles God. "Could I give a handicapped child a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it.

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make it live in her world and that's not going to be easy."

"But Lord, I don't think she even believes in you."

God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps, "Selfishness? Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'. She will not consider a 'step' ordinary. When her child says 'Momma" for the first time she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations.

"I will permit her to see clearly the things I see... ignorance, cruelty, prejudice...and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."

"And what about her patron saint?" asks the angel, his pen poised in midair.

God smiles. " A mirror will suffice."

i really liked certain parts of this poem...i don't think im a saint or anything, lol...but the part in the poem that says: "She will never take for granted a 'spoken word'. She will not consider a 'step' ordinary. When her child says 'Momma" for the first time she will be present at a miracle and know it!".....that part made me cry.

some equipment advice please....

2008-10-11T20:22:00.006-05:00

so milo's birthday is coming up soon and im hoping it will be a chance to get a few much needed things that i have been putting off for financial reasons.

i have a general idea of what im looking for but am sort of lost on where to find what i need, what works best, etc.... so, here's what im looking for:

we need a high chair that is going to work for a one year old with very limited head control and so so trunk strength.

we would like to find a stroller that milo can sit upright in, or at least an attachment or something to put in the stroller that will help hold his head and body upright.

we need a really good, really comfortable, really supportive baby carrier...kind of like a snugli, or baby bjorn...but better.

that's all i cant think of right now, but i would also love suggestions on any equipment, activities, toys, whatever, that made life easier at this age...(keep in mind that milo has very limited vision as well). thanks!

help me decide....

2008-10-07T20:58:00.003-05:00

my dad and step-mom came to visit over the weekend. they live in maine and try to get to dallas every three months or so. it was a really nice weekend, and it really reminded me of how much milo has changed and how far he has come since the last time they came...he has really progressed alot and i am so proud.

on an unrelated note...i've been shopping around for a cute halloween costume for milo...i'm really excited about his first halloween and can't wait to take tons of really adorable pictures!!
so far i kind of like this little batman costume,

and this darth vador costume....

but i also like this monkey costume

and this bat costume from old navy...

any opinions? lets take a vote on which is the cutest!

the whole story

2008-09-29T22:22:00.006-05:00

when milo was born six weeks early we were told that he would probably stay in the nicu for a couple of weeks so that he could get the whole "suck, swallow & breath" thing figured out...he had some respiratory distress during labor, but no one knew that he had any damage to his brain until months later when the seizures began (although there were signs that things were off, such as his super fussiness and feeding difficulties).

they discovered pvl when he had a cat scan at the emergency room....when they told me that milo had periventricular leukomalacia i of course had no idea what it was. they gave me a little write up about it and said to find a neurologist...then sent us on our way. on our way home from the hospital i read the piece of paper not knowing how big this news was....it talked about a possibility of vision impairment, a possibility of cerebral palsy, a possibility of mental retardation...i immediately went into denial. i didn't want to know anything about pvl. i didn't look it up online, i didn't want to talk about it, i didn't want to think about it, i just wanted it to go away. milo was just a preemie and he was just behind but he would catch up and that's what i told myself for about a month and a half. milo's doctor at the time didn't seem too concerned about the pvl...and we couldn't get into see a neurologist for about two months, so it was pretty easy for me to just pretend like it wasnt happening.

then one night jesse was at work and milo was sleeping and i hesitantly started to look up information about pvl. it was like i opened the flood gates....i couldn't stop. i was pvl obsessed. it was very emotional...i was google searching and sobbing simultaneously. i was hit especially hard by the pvl yahoo group...as i was reading the posts written by parents my denial was forever gone. and then i started to realize things that i had never allowed myself to realize before. i realized milo couldn't really see, and i realized that milo had cerebral palsy.

for weeks my free time was spent researching and crying. although it was alot easier being in denial milo needed me to advocate for him and so i did. i became pretty familiar with the other stages of grief...but as time went on i began to heal...and im still healing.

i have my bad days and moments where i begin to cry out of the blue. i have a hard time watching little boys run around and play, and i avoid looking at pictures of my friends kids on there myspace and facebook pages...it just still feels too bitter and i feel bad about not wanting to see my friends beautiful children who they are as proud of as i am of milo....but i cant help it, its how i feel. but my good days and my good moments far outweigh the bad ones. i adore milo. he is the love of my life...i am so proud of him constantly, and every time he does something new it is so exciting and we have so much fun together...especially now that hes starting to get past the super fussiness...and i'm finally at a place where instead of feeling sad for all the things that milo might not be able to do, i'm taking it day by day and celebrating what he can do and all of his accomplishments. the dust is settling.

ch-ch-ch-ch-changes...

2008-09-21T13:10:00.005-05:00

milo has been changing lately, in a good way. most of his early months he spent being fussy, irritable, uncomfortable, and just pretty much inconsolable. over time things gradually improved, although many more obstacles were thrown his way, such as seizures, feeding tubes, etc... but my point is, although his mood gradually improved to an extent, up until the last few weeks i wouldn't have called milo a happy baby....and it broke my heart. he liked to be held, but never wanted to cuddle. he cried, a lot. he arched. he screamed. he fussed. then all of a sudden....everything changed. he wants to snuggle all the time now (and i love it). he is more relaxed, more easy going, and more comfortable in his own skin. he seems content, which makes me content. there is still a long road ahead of us, but for right now we are enjoying our triumphs...and i am enjoying my happy baby.

home sweet home

2008-09-19T14:29:00.003-05:00

we are home at last! milo got discharged yesterday and so far so good....he still has a little cold, and is on antibiotics for his infection but all and all i think he is feeling much better. i'm trying to get him back to his normal routine...and i am really looking forward to this weekend so that dad can take over a bit and i can get a little break...a whole week staying at the hospital with your kid along with a nasty cold really takes it out of you.

i was so tired last night, and it was really difficult to get him to go to sleep because his routine is so messed up...and i momentarily felt really defeated, like i just couldn't do it and there was no way i was going to make it through tomorrow...but then i snapped out of it...and i got him to sleep, and the day is half over today and i've made it through just fine.

ugh....still staying at the hospital

2008-09-16T18:06:00.003-05:00

well....i went ahead and unpacked my stuff today at the hospital so that it wasn't in an annoying pile in the middle of the floor anymore. looks like were going to be there a few more days. milo is not yet tolerating his feeds and it looks like he did catch my cold, so, that will probably slow down his recovery. i'm so tired.

another update....

2008-09-15T15:16:00.004-05:00

milo was sent home saturday afternoon from the hospital....and everything was seemingly okay, but a couple of hours after we got home things went downhill....he was very very fussy ang crying alot, and his cry was not his normal cry, it was very high pitched, so i started getting concerned.

i began taking his temperature and it was just below 101 and we were supposed to take him to the er if it was over 101...so i gave him some tylenol to see if that would bring it down...and it did, a little, so we decided to wait it out a little longer, (even though my gut told me we were going to end up at the er)...and at about 9 pm his temp spiked up to 102.2, so off we went to the er...where we stayed for 11 long hours (i actually only stayed 8 hours, i went home to get some sleep once we found out for sure that he was getting admitted).

they have run tons of tests, he has had x-rays and a sonogram...and it looks like everything with the tube is okay, its in the right place, there is no abscess or anything, its just a run of the mill infection, which he's being treated for with antibiotics through an iv....and as soon as he is tolerating feeds and does not have a temperature for 24 hours he can come home....so i'm hoping tomorrow.

to top it all off i started coming down with a pretty bad cold yesterday...so that makes staying in the hospital extra fun...my hands are practically raw from washing them and hand sanitizer as i try to avoid passing my cold on to him, because that's the last thing he needs right now...so keep your fingers crossed for us that all goes well and we get to come home tomorrow.

quick update

2008-09-12T17:02:00.003-05:00

i just wanted to post a very quick update....milo's surgery went well and he is at the hospital recovering...i will post details and pictures in the next day or two when i have more time. also, thanks to everyone for keeping us in your thoughts, and for your words of support...my friends and family are the BEST, and i honestly don't know what i would do with out all of the support and wisdom of the moms out there who's blogs i follow, and of those who follow mine, your advice and encouragement mean the world to me...really.

milo's surgery

2008-09-09T09:36:00.005-05:00

well, milo's surgery (to place his g-tube) has rolled around again....we could not do the procedure the first time around due to a piece of bowel or intestine obstructing the path....but this time it should definitely happen because there will be a surgeon assisting our gi doctor...his surgery is this thursday, on september 11th....and i'm still waiting to hear from the hospital to find out what time we need to arrive, but since milo is so young i'm sure they will schedule us nice and early. we will be staying at the hospital (children's medical center) for a few days following the procedure. so wish us luck!

picture post

2008-09-03T23:03:00.003-05:00

milo was in an amazing mood today....it actually might have been the best day i can remember ever as far as his mood goes, so, it was pretty darn cool! i got lots of cute pictures of him as we were lying and playing in bed...he was being very cute...and we had so much fun. also, we had a weight check today and he now weighs 14 lbs, 5 ounces....we were stuck at 13 lbs for what seemed like forever so hooray for getting over the 14 lb mark! go milo!

From milofunday

bad doctor

2008-08-29T12:23:00.011-05:00

so i had said in a previous post that i would fill you in on the bad experience i had with milo's first pcp when i had more time.....well, i have a little time right now so here it goes.

our first visit with milo's first pcp, we will call him dr. w, was in my opinion odd...he had a med student following him, which of course i don't mind...but it was dr. w's first time meeting us, and he never introduced himself, never said hi, how are you, he never really acknowledged milo in any way except to examine him...he just came in with his med student, began poking and prodding milo...spoke almost entirely to his med student, barely talking to us at all except to ask the occasional question about milo...told his med student to note the shape of milo's head....and that it was more narrow than a full term baby's head and will always remain so...the whole time telling the med student things such as this but never speaking directly to jesse or i....it was weird. he was basically in and out like a whirlwind...he interrupted me everytime i tried to speak or ask a question...it was just WEIRD.

every time we went in i would bring up concerns about milo's stiffness...his constant discomfort...his constant crying and fussiness...dr. w would always attribute all of his problems to gastrointestinal issues, and lack of weight gain. we had one, then two, then three swallow studies to try and figure out why he was not eating....all came back normal. we saw a gi doctor who tried various reflux and stomach meds...it made no difference. every time we would go in for a weight check it was always the same thing..."i don't like this...he isn't gaining enough weight" but we were trying so hard, and he just wouldn't eat. so then he told us that there were only a couple of reasons that a child won't gain weight....either they just aren't getting fed enough or there is an underlying medical problem such as a heart defect which is causing them to need more calories...then he went on to say that he knew milo didn't have anything like a heart defect....aka, insinuating that he was not being fed enough by us....which just made me so angry because for the six months that milo was home from the nicu and did not have the feeding tube, my life WAS feeding milo....we would feed him all day long just trying to get him to eat enough...and we lived in a constant sate of worry and anxiety because he would not...so anyway, my point is that instead of trying to help us figure out the root of the problem and find some solutions, dr. w made us feel as though we were to blame.

fast forward to milo's first seizure and the discovery of pvl....you would think that this would change dr. w's approach to milo's problems...but it did not. he reluctantly told us that he would order an mri and give us a referral to a neurologist but said our medicaid would most likely not pay for it and we would probably have to pay out of pocket...we said that if that's what it took then we would figure something out but to give us the referrals (by the way medicaid did pay for it without issue). that was our first taste of his reluctance to give referrals....i asked for various referrals to start pt and ot....he wouldn't do it, he said milo needed some sort of a diagnosis first (apparently the fact that he had pvl wasn't good enough). so i asked for a referral to see a developmental pediatrician...he gave me one but when i called her office they weren't accepting any new patients with medicaid, so, they told me the name of a developmental pediatrician who was....and by some sort of fluke the message i left with the front desk of her office some how made it into her direct voicemail box and the developmental pediatrician called me back herself...after explaining all of the issues that we had been having with milo, and dr. w's complete resistance to giving me any of the referrals that i needed, she made me a very quick appointment for two weeks from then, and said that she would call his office to get the referral...(so finally some things were falling into place).

a couple of days after that we had to go to dr. w's for a weight check and what would end up being the last straw, as well as our last visit to his office...i brought up again my concerns about milo's muscle tone...his tightness and spasticity....and said that i think he needs pt and ot from somewhere, he again told me he could not refer me anywhere for pt or ot because milo had no diagnoses, so then i asked how we would go about getting a diagnoses...and who would diagnose cerebral palsy...he then looked at me and said "milo doesn't have cerebral palsy"...and i said that from what i have learned about pvl...and the fact that milo's muscle tone is so spacstic, as well as the fact that he has seizures, i thought that cp was a definite possibility...then he went on to say that he was certain that milo didn't have cp because cp would have been diagnosed by the time milo was six months old (wrong....cp is hardly ever diagnosed that early...plus, who would have diagnosed it since i couldn't get any referrals from the guy), he also said that if milo had cp then baclofen wouldn't be working for him because baclofen isn't used to treat cp (wrong...almost every kid i know of with cp is on baclofen)...and i must have had a very sad look on my face, because he then said to me "well don't be so disappointed, it's a good thing that milo doesn't have cp" (as if i wanted him to have cp or something)...and if i looked sad it was not because i was upset that he was saying milo didn't have cp...but because deep down i already knew he did, and i found it really hurtful that this man who obviously did not have any accurate knowledge on the subject was just constantly dismissing my concerns...and i knew he would never give us the supports we needed to move forward....and it was also very hurtful to try to imply that i wanted something to be wrong with my son....i love milo and i will always do anything in my power to make his life the best life it can be, but i didn't want any of this for him...i didn't want him to have to constantly struggle, what parent would?

so anyway, i found a new and wonderful doctor who got us right in the following week, and during milo's developmental pediatrician appointment the following week milo was diagnosed with cerebral palsy...just as we had suspected. and now we are moving forward, starting his therapies....he's gaining weight from the feeding tube, and there is just a world of difference between the support we feel now as opposed to two months ago. so there it is, that's my bad doctor story.

not much to report....

2008-08-24T20:24:00.004-05:00

milo has gotten his first little tooth...i knew it was coming but it finally poked through. we are starting occupational therapy at our children's house on wednesday, this will be the first time we will be going there and im pretty excited, it was my first choice on where i wanted to take milo for his various therapies....and i get to go where i wanted so, that's pretty cool! otherwise not much has been going on, we had a pretty quiet week, i thought milo was going to be recovering from his surgery this week so we had no appointments planned, it was a nice little break, but now the madness resumes :)

some cuteness to make up for my previous complaint post

2008-08-18T21:12:00.002-05:00

doing the milo dance

look at my bellybutton

milo san

more waiting

2008-08-18T19:56:00.003-05:00

so i think milo should probably be receiving an award for grumpiest baby in the world today....he was just miserable all day long. i am exhausted and just emotionally spent. not to mention that i was on the phone with doctors, pharmacies and insurance companies off and on all day trying to get some things sorted out, and then i got some very bad news that the surgery that we have been waiting for, that got postponed, got rescheduled and isn't until september 11.....over 3 weeks away!

so its been a rough one...sometimes it feels like im trying so hard to hold things together and to get things straight, but then more things pile on top, and some of the things that i thought i had all figured out just fall apart..and theres no end in sight, we have been waiting so long for this surgery and in my head it was the next step, so i think it being postponed, and now the fact that we have to wait almost a whole month, has just got me feeling so frustrated, and anxious, waiting, waiting, waiting....sometimes i feel like thats all i do.....

any suggestions?

2008-08-16T21:48:00.005-05:00

what do you do with a child who can't put his hands to his mouth very well yet, can't hold on to objects, doesn't do a very good job holding a pacifier in his mouth, and is cutting his very first tooth? so far ive been holding things in his mouth for him to let him chew, and that makes him happy, as he is miserable when not chewing on something, but its not allowing me to get much done since he wants to be chewing on something all the time...im guessing this is probably the only solution...but if anyone out there has any suggestions i would love to hear them.

welcome to holland

2008-08-15T22:05:00.003-05:00

i wanted to post this poem...if you have a child with a disability than you have probably already read it, but i have just recently read it for the first time and got quite teary eyed...but i liked it alot and wanted to share....

WELCOME TO HOLLAND
by
Emily Perl Kingsley.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

as promised...

2008-08-14T21:11:00.005-05:00

here are the pictures as promised....and the reason for no surgery was that it was supposed to be a pretty simple procedure, and my gastroenterologist was going to do it, but once milo was under anesthesia and he was in there with the camera he discovered milo's bowel or intestines was up a bit higher then normal, which isn't a big deal, it happens, but he couldn't do the surgery without an actual surgeon and laproscopy....so, we had to postpone it until im not sure when, im supposed to be getting a call to let me know...so now we wait, and milo has to have the ng-tube a bit longer. but it figures that milo's intestines were up higher than normal, that's my milo...always different, he's a little nonconformist :) lol

surgery update....

2008-08-13T22:46:00.004-05:00

everyone is probably wondering how milo's surgery went.....but it actually didn't happen today, i'm too tired to explain all the details but after a very long day at the hospital the surgery was postponed....i will fill in the details tomorrow and post some really cute pictures of milo wearing little hospital pj's....until then, goodnight.

i never thought.....

2008-08-11T22:34:00.003-05:00

i never thought that my baby would come six weeks early

i never thought that he would be rushed away to the nicu before i got a chance to hold him

i never thought that it would be a whole week before i could hold him for the first time

i never knew that it would be so difficult to feed him

i never thought that he would live in the nicu for two months

i never thought that i would feel like his nicu nurses knew him better than i did

i never knew that once he got home it would still be so difficult to feed him

i never thought that my whole life with my baby would revolve around trying so hard to get him to eat enough for six whole months, while his weight fell off the charts because he just wouldn't

i never knew that i would ultimately fail at bottle feeding my baby and he would end up back on the feeding tube

i never thought that i would have to rush my baby to the emergency room at four months old because he was having seizures

i never thought that when he had the cat scan at the er they would tell me that he has something called pvl as well

i never knew that i would be so scared

i never thought that i would have to wonder if my baby will ever be able to see my face

i never knew that some doctors could be so careless.....while others could be so great

i never thought that i would have a pediatrician, a neurologist, a developmental pediatrician, a pt, an ot, a feeding therapist, an opthamologist, a gastroenterologist, a nutritionist, a vision therapist, and a developmental therapist....along with two or three appointments a week....

i never knew how proud i would be of him for trying so hard

i never thought i would have a baby who would be diagnosed with cerebral palsy

i never though that i would actually feel relief for finally knowing for sure

i never knew how hard this was all going to be

i always knew that i would love him

i never knew how much

two more days to go....

2008-08-11T11:25:00.004-05:00

surgery is in two days now....and it can't come soon enough. milo is starting to get very annoyed with the feeding tube in his nose and i think he has figured out that if he coughs hard enough he can actually manage to cough it up, so that one end of the tube is sticking out of his nose and the other end is hanging out of his mouth...then we have to pull it out and place a new tube...he has actually started to do this about every other day for the past week and a half....i am getting very good at placing tubes! at first it took me quite a while to measure and get the tape all ready and then actually place it, now i have it all ready and into his tummy in about 5 minutes.... but i am glad to not have to do it anymore, it will be a very good feeling tomorrow night to take it out for the last time.

on a totally different topic, i just realized that milo's birthday this year (his first birthday) is on thanksgiving. its weird, i always had this idea of a big first birthday party just for him....i didn't really think he would be sharing it with a big turkey dinner...but at least it wont fall on thanksgiving again until 2014.

listen to your nicu nurses....

2008-08-09T08:46:00.006-05:00

milo recently changed pediatricians (we had a horrible time with his previous pcp, i will explain the whole story sometime but i don't have time right now) and i just really love his new doctor and the whole clinic is wonderful, its called the tiny tots clinic and it is just for preemies who have done a stay at the nicu....everyone is really nice there and they all know what their talking about.

when we were staying at the nicu i asked the nurses if they could recommend a doctor for me and i think the first name out of any nurse i asked was dr. suterwala (our new pcp), but he was at baylor and i didn't really know how to get there so i decided to go with a doctor at medical city (where his nicu was) because we had been there for 2 months and were just kind of comfortable there.

anyway, the moral of the story is that if all your nicu nurses are telling you to go to a certain doctor, listen to them! they know what their talking about.

some random pictures....

2008-08-08T15:04:00.001-05:00

surgery

2008-08-07T14:29:00.005-05:00

milo is scheduled to have surgery on the 13th....to replace his ng-tube (feeding tube in his nose) with a g-tube (feeding tube in his belly). i am of course nervous since its surgery and he will be under anesthesia and all, but im also very excited to get this awful looking tube off of his cute little face, and im very glad that i never again will need to place a tube into his nose and push it down to his belly, its not fun and he really doesn't appreciate it very much. he will be staying at children's medical center for a few days following his surgery to recover. wish us luck!

wait and see.....

2008-08-04T22:39:00.005-05:00

one of the many difficult things about having a baby with cerebral palsy is the wait and see factor.....all parents have to wait and see of course, as their babies personality develops and they discover their children's many talents as well as their areas that need some extra help....but parents of children with cp hear the dreaded phrase "we'll just have to wait and see" all too often, and some of the things that i'm waiting to see are....will my son be able to walk? will he be able to talk to me? will he be able to see? amongst other things. i hope i don't sound all sorry for myself....sometimes it just seems like the wait is so long and milo is just such a little mystery, i just wish there were more answers sometimes.

milo's eyes

2008-08-01T20:39:00.005-05:00

milo has something called cortical vision impairment (cvi), which basiclly means that his eyes work normally but the special vision center of his brain does not...due to the damage he suffered when he was born. i put a link to an article about cvi if you want to know more about it. so as of right now he is pretty much blind. the only thing he really responds to visually is light. one of the good things about the fact that it's cvi as opposed to other types of blindness is that vision tends to improve as the child grows older and the brain develops, so milo is going to start vision therapy....and hopefully with time he will begin to see better.

welcome to milo's blog......

2008-07-29T23:22:00.009-05:00

i'm starting this blog for my son milo....to tell his story and share all of the things that he has been through and accomplished, but i am also writing this blog because during a time when it was very difficult for me to get straight answers or know what to expect for the future, reading the blogs of other parents who have gone through this was probably one of the best resources i could have asked for. sharing in what other families had gone through, and how they had overcome so many obstacles, made everything seem more possible for us. so i hope that by me telling milo's story maybe this blog can do that for someone else. my son milo was born six weeks early. his amniotic sac ruptured early which is why they induced labor at 34 weeks, he suffered from respiratory distress during and following labor, which caused a lack of oxygen to his brain, most likely one or more of these factors led to periventricular leukomalacia (pvl), and ultimately cerebral palsy.....how severe is yet to be determined since he is still only 8 months old (6 1/2 months adjusted), but he accomplishes more and more every day and we are very hopeful for the future.