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

wordless wednesday....a day late

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.....?

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

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 ?

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

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...

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.