Wonder why we call her little frogger?? LOL she was napping one afternoon and I nabbed this pic of her....Well let me take a moment to collect my thoughts...whew..all that stinkin driving and dropping hubby off at work and then the traffic getting home....whew.
Alot was discussed at the apointment...I feel we have only just begun this journey of seeking the propper nutrition for madie.....
For ONE YEAR she has been on drug after drug...seizures and more seizures...delaying not only her development but her GROWTH as well!!!
We arrive and park in the lovely parking garage......we go to the second floor which we know by heart cause Neurology is up there..... to register and then wait with madie in another waiting room....when the nice lady tells us to come and leads us to a conference room...where she has papers and folders scattered about.... but before that she weighs madie and she is still 22 pounds....gah!! no weight gain madie!!
THEN we head to the room and start talking...talking about what Madie eats and doesnt eat..can you guess which list is longer?? "does madie eat fruits? veggies? cereal? table food? whole milk?
All no's.... I was feeling like I should have lied on at least ONE!
She went into how madie would need nearly 1300 calories to catch up in her weight which remains in the 2 percentile....thats alot of calories!! eeek!! And here I am...trying to burn calories...!! Enter FAT.....
We were given an apointmemt as well with "the feedng team" (cue loud triumphant music) who will go at it with madie...we are going to give us further instructions for the apointmet one being to bring some baby food with us so they can watch her eat...or not eat....maybe get an idea how she takes in food...Nice Lady has seen them do miracles... (insert skeptical nervous laugh)
There is no word on a Bariun Test...YET...I would not be shocked if we had to do that sometime in the future as well.
We have been instructed for now to give her nothing but Pediasure shakes....NOTHING?? No more Potion?? Ohhhh boy..... Now if any of you have bought pediasure shakes they are 10 bucks for a 6 pack!! AND if they want her having as much as 4 a day?? I kinda looked at her funny and told her if she has any idea how much those suckers cost..,...I wonder if we can get them at a wholesale club like SAMS or BJ's........Ill have to look into that....hmmm
The Nutritionist also said that maybe we can get shakes thru a prescription....Prescription?? Oh that is for people who qualify for WIC....a program that helps familys with "the qualified income" feed their kids formula etc...one of my friends who is a single mom used to get formula on it....I dunno much about it. but alot of times my hubby makes just a hairline too much to qualify...
We were sent home with paperwork and an apointment for January with this feeding team and that was that.
Madie was very sleepy thur the whole thing and slept most of the time in her stroller....or on mama...it was mostly just talking and getting a feel for what was to come....and it will be a journey..,..that good ol transition to real food...
Hubby and I are also instructed to get a meal plan going like eating dinner together someday....now this being told to the couple that always eats after madie is in bed....its just so much more relaxing that way! lol...dunno...cant think that far ahead....lol...
NOW to just get her down on her meds!! we still do not have the OK for that...madie is more or less seizure free in the days!! NONE!!! its only been about 3 weeks.... When we tried to go back to all three meds at night again that was vomit central.... SOooo she just has to deal with the sleepy Zonegran in the morning for now..
as far as her sleeping...oh man dunno about seizures but they gave us a therory to why she may be waking in the night...
Shes Hungry.
HUngry??
You think I want to get up and feed her at 2am?? Then the lady told us that maybe try to give her just one more bottle at 8 before she goes to bed....instead of just her last bottle being at 630... more food more food..l.stuff the kid! Stuff the kid!! she gave us this feeding thing to go by...8oz here...4oz there..8oz again...4oz again....like a meal snack thing....but with bottles and tons of shake....
I dunno if madie is that hungry!!
Miles is ready to throw away allll formula.....literally flush the stuff! LIBERATING!! woo!! no more yummy scoopper?? Nooooo!! my life needs serious adjustment to this sort of change...! All you mamas know the scooper! LOL...
Well Iguess that is all....I will keep all posted on Madie and her weight gain and how she tolerates this new jammed fat diet...as Mama who found out her Chollesterol is high has to CUT the fat! GAH!!
Hugs mamas
Me.
Alot was discussed at the apointment...I feel we have only just begun this journey of seeking the propper nutrition for madie.....
For ONE YEAR she has been on drug after drug...seizures and more seizures...delaying not only her development but her GROWTH as well!!!
We arrive and park in the lovely parking garage......we go to the second floor which we know by heart cause Neurology is up there..... to register and then wait with madie in another waiting room....when the nice lady tells us to come and leads us to a conference room...where she has papers and folders scattered about.... but before that she weighs madie and she is still 22 pounds....gah!! no weight gain madie!!
THEN we head to the room and start talking...talking about what Madie eats and doesnt eat..can you guess which list is longer?? "does madie eat fruits? veggies? cereal? table food? whole milk?
All no's.... I was feeling like I should have lied on at least ONE!
She went into how madie would need nearly 1300 calories to catch up in her weight which remains in the 2 percentile....thats alot of calories!! eeek!! And here I am...trying to burn calories...!! Enter FAT.....
We were given an apointmemt as well with "the feedng team" (cue loud triumphant music) who will go at it with madie...we are going to give us further instructions for the apointmet one being to bring some baby food with us so they can watch her eat...or not eat....maybe get an idea how she takes in food...Nice Lady has seen them do miracles... (insert skeptical nervous laugh)
There is no word on a Bariun Test...YET...I would not be shocked if we had to do that sometime in the future as well.
We have been instructed for now to give her nothing but Pediasure shakes....NOTHING?? No more Potion?? Ohhhh boy..... Now if any of you have bought pediasure shakes they are 10 bucks for a 6 pack!! AND if they want her having as much as 4 a day?? I kinda looked at her funny and told her if she has any idea how much those suckers cost..,...I wonder if we can get them at a wholesale club like SAMS or BJ's........Ill have to look into that....hmmm
The Nutritionist also said that maybe we can get shakes thru a prescription....Prescription?? Oh that is for people who qualify for WIC....a program that helps familys with "the qualified income" feed their kids formula etc...one of my friends who is a single mom used to get formula on it....I dunno much about it. but alot of times my hubby makes just a hairline too much to qualify...
We were sent home with paperwork and an apointment for January with this feeding team and that was that.
Madie was very sleepy thur the whole thing and slept most of the time in her stroller....or on mama...it was mostly just talking and getting a feel for what was to come....and it will be a journey..,..that good ol transition to real food...
Hubby and I are also instructed to get a meal plan going like eating dinner together someday....now this being told to the couple that always eats after madie is in bed....its just so much more relaxing that way! lol...dunno...cant think that far ahead....lol...
NOW to just get her down on her meds!! we still do not have the OK for that...madie is more or less seizure free in the days!! NONE!!! its only been about 3 weeks.... When we tried to go back to all three meds at night again that was vomit central.... SOooo she just has to deal with the sleepy Zonegran in the morning for now..
as far as her sleeping...oh man dunno about seizures but they gave us a therory to why she may be waking in the night...
Shes Hungry.
HUngry??
You think I want to get up and feed her at 2am?? Then the lady told us that maybe try to give her just one more bottle at 8 before she goes to bed....instead of just her last bottle being at 630... more food more food..l.stuff the kid! Stuff the kid!! she gave us this feeding thing to go by...8oz here...4oz there..8oz again...4oz again....like a meal snack thing....but with bottles and tons of shake....
I dunno if madie is that hungry!!
Miles is ready to throw away allll formula.....literally flush the stuff! LIBERATING!! woo!! no more yummy scoopper?? Nooooo!! my life needs serious adjustment to this sort of change...! All you mamas know the scooper! LOL...
Well Iguess that is all....I will keep all posted on Madie and her weight gain and how she tolerates this new jammed fat diet...as Mama who found out her Chollesterol is high has to CUT the fat! GAH!!
Hugs mamas
Me.
1 comment:
uuughhh more waiting but atleast you are one step further. Poor gal you know shes got to be hungry...I would be! But I'm with the nurse maybe she is waking due to being hungry! Just never know till you try it. You know a reason to her being so tired in the day can also be do that fact as well....so many meds and not enough food to help equal it out....She is a tiny lil thing isnt she. Man Cami is only 3 pounds behind her brother and they are 3.5 years apart.....LOL! She weighed in at 39 pounds last week and Caleb is at 42! I think she is gonna pass him up.
Well I hope those feedings go well!
Karen
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