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.

progress

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.....

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!

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

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?