wordless wednesday!

what's new?

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

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

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

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

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

as promised...

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

childrite seat

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



*don't worry other 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

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.....

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....

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

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

please write a letter or send an email for emerson.

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