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?

milo parties like a rockstar!

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!

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....

milo

a letter from daddy

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

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

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...

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

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....

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....

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

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...

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

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

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....

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

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

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

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

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....

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

doing the milo dance

look at my bellybutton

milo san

more waiting

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?

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

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...

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....

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.....

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....

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....

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....

surgery

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.....

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

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......

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.