 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!
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?
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.
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.....
  mister m....having fun with daddy
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.
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.
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.
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. :)
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.
  
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 :)
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and mommy was very busy helping everyone get dressed up!
