Friday, August 29, 2008

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 was weird. he was basically in and out like a whirlwind...he interrupted me everytime i tried to speak or ask a 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 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 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 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, 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.

Sunday, August 24, 2008

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 :)

Monday, August 18, 2008

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.....

Saturday, August 16, 2008

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 guessing this is probably the only solution...but if anyone out there has any suggestions i would love to hear them.

Friday, August 15, 2008

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....

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.

Thursday, August 14, 2008

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, we had to postpone it until im not sure when, im supposed to be getting a call to let me 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

Wednesday, August 13, 2008

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.

Monday, August 11, 2008

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.

Saturday, August 9, 2008

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.

Friday, August 8, 2008

some random pictures....

Thursday, August 7, 2008


milo is scheduled to have surgery on the 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!

Monday, August 4, 2008

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.

Friday, August 1, 2008

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.