Overall Great Weekend :)

There were about 12 of us crammed into the cottage this past weekend..and as always good food, good drink, good sunshine.
Rough DAY with Madie Friday..oh man...this teething had got to give!! It was a really hot day Friday and I was determined to get to cottage with hopes of that off-shore breeze..(no, still warm)
Aparently Friday night CT got hit with some tornado action! Hubby said it took him 2 hours to get home with closed roads and trees down..oh, and broken traffic lights.He was planning on meeting up with us all Sat.
I swore Madison just knows when mama is flying solo..I tell ya! I made it thru to Sat morning thru the screams and the 9pm dose of Tylenol...I just knew Sat was going to be busy with my brother-in-laws birthday BBQ. Dunno what kept me functioning on Sat..lol..but once Miles arrived it was a sigh of relief and madies crying got "better". Poor baby girl..
We feasted on SO much food! Grilled Burgers stuffed with cheese, bacon and onions..(oooof!) and cholesterol city! YUMMMM!
We also took Grandpas new boat for a spin on the water..(madie stayed home with grandma) The "thrill seeker" that I am sat right up front as we raced thru the water..The death grip on my seat cushion left me sore for a few hours after! We were catching air over the waves! It was great! SCARY! Its certainly Grandpas new "toy" He promises to take grandma out in it and "go slow" HA...;)
We got home yesterday before lunchtime..I was anxious to get home to the AC and get my stinky girl in the tub! I was exhausted! hit by the wine train I was... YUP...when the games come out Sat night and we are all sitting around that tiney table...ohhh boy...:)! Madison woke only around 11 ready to party.
When we got home she sprung to life! She was so loud with noises and laughing and rolling all over..ya just couldn't keep her quiet! she was feeling better and after a few hours tuckered herself down for a nap. Maybe she was feeling better in the cool house?? Dunno but I was not complaining! FINALLY went to bed by 1030! whew!A good Weekend :)
Hmmm in news...Well Billy Mays Died...LOL!! Just kidding...HHHI IM BILLY MAYS!!! T.V will be a quieter place now..(now its up to blogzilly-ken to find a hilarious picture..)
NO really...in real news...We continue to see the jerks..they worry me..they are few..its not like an all day constant thing.but so far this AM I have seen 3. Weather they are seizure jerks or spasms or muscle twitches...ehhhh they are there. I felt we were SOOOO close to seizure freedom..90 percent Madie!! not one huge(there goes another jerk) tonic clonic seizure! I used to have a video of her bad ones..but seriously I had to delete it..rough stuff.. I am uncertain how to get the videos from my camera onto the computer and actually have them BE videos...instead of the picture of the beginning of the video! If that makes any tech-savy sense! haha!
Good days and bad days..more so with teething. Development chuggs along and we continue to "try" her solids and try to bulk my skinny mini up.
I continue to think that maybe its crazy to go to Detroit...what are we going to hear that we have not already heard? "We still dont know why madie is the way she is".."thank you have a nice day"..OH dont forget your new pills!..
Family was asking me about it and I just did not want to talk about it. I guess I am kinda freaked out about it. One of those crazy things I felt I had to do without thinking?? Dunno...
Well the usual therapies this week and grocery shopping...cause BOY we are out of food! OH and dont forget Prescription pick ups! Wooo Hoo!! ONWARD!
Till Next time America. (remember that show?? LOl)
Me.

Detroit, Teething, Oatmeal and trying to relax..YUP all in one!

August 19th begins Madies first 24 hour EEG! and on the 20th bright and early we go for her first PET scan! Ok so I am terrified...I may think I am on the verge of being crazy...I mean could I just find someone who is closer to us? NY, Boston, Philly?? I am just so intrigued by this Dr Chugani I feel that madie should see him! I want HIS humble opinion...I feel I have read and heard enough to just want to go!
Am I crazy? I mean I have never had to travel far to get the doctors we have needed for Madie...
But I can say it over and over...hell, if we go and get not so much from it..then we got some info...if anything...A small price to paty for my madie..

So in a couple months we GO! Rock on!
The jerks persit...and madies latest blood work came back with slightly elevated liver...83/78...unsure how to decode the numbers they never explain that to me..:(! But its frustraiting..! I have Upped the "trying food" each day...with hopes of getting this solid food ball rollin! I am BEYOND sick of cleaning bottle daily and the vanilla cookie smell of Pediasure begins to smell like vanilla cookie PUKE..ehh.
She has been doing AMAZING eating her oatmeal cereal mixed with eaither whole Milk or banana pediasure or Mixed veggies! I will not brag too much how on ocasion she opens her mouth for the spoon as well!! I have seen her eat and I have seen her suddenly refuse all together..

We head off today for the cottage again...I really need a dose of the gang and some free food that I dont have to order or cook..We are fresh out of grocerys and cash! The AC just broke a couple of days ago and its pushin 80 in the house...the poor guy is outside right now fixing as the drizzle begins to fall...With a grand total of 490 for the "under warranty" condensor...(better than 2 grand!) soooo with AC and Grocerys and oh...Morgage due...eh....Time for some free stuff! Onward! We go!
Teething persists as well...pic above it was so hot in the house and she was so fussy she FINALLY fell asleep on the floor with her blankee covering her eyes...cute! hee hee half naked!
Well on that note...trying to bulk Madie up continues with hopes of the liver comming back better...AND Detroit here we come!
OH OH and should I try to persue a new med?? I feel Depakote is working! To go back to those horrible big seizures is oh so horrible...now to tackle the jerks! find out what they are!!
Ok Im done :)
Hugs mamas.
Time to pack up.

Big Girl :) , Toofs and more rain! gah!

Such a big girl eating her mush!

We anxiously wait for Dr Chugani's folks to call us with a date to travel...
Madisons blood work continues to come back slightly elevated at 83/78..its kinda frustraiting that the only med that seems to be working has to take such a toll...she continues her vitamin..and her jerks..even more frustraiting her hartford doctors telling me that if the jerks get bad then give them a call..
they dont seem to bother madie but what if they are spasms??? they also don't feel we need EEG at this time being madie seems to feel well. SOOO I wait to see if things get worse?? wait to see her regress?? Unacceptable!

Oh and don't forget the next drug lined up "if things get worse" Banzel. uuugh.
No thanks.
I just KNOW if I could get madie on foods with more substance she could metabolize her current meds better! hopefully not worrying about this liver junk!
I do not know the next step from here...when can I get a break from my worry??
And this poor kid and her teeth! oiy! lack of naps and sleep can sometimes make her ready to crash by 7...poor baby :(
Its another stinky rainy day...all the funny smells come out in the house when its humid like this! GAH! Ohhhh and when it was 80 degrees inside and the AC was going...something is wrong...HVAC guy comes tomorrow bright and early at 730...FUN!
I think I am being summoned by a motor boat...LOL I guess she is feeling better eh? Who needs teeth anyhoo! and liver shmiver! boo!
((( hugs mamas))))

Were in! what? yes we are in!!

WE ARE IN!!
Detroit here we come! Are you ready for Madison??
Sarah was in fact on vacation but came back today..she says she can see us in JUly or August...SOON! We have not set a date yet..hubby has to work stuff out with work and such..but we are excited!
Madisons seizures are going well..I hope they can maybe find out if there is a spot in her brain that is causing..?? dunno what to expect..
I will try to push hubby for a nice hotel...It will be 2 days of driving..well we will chop it into two..could make it in one..but its looong.
Its been a rough morning thank gawd we have no therapys! Madie was up twice last night crying and biting her poor little hands...I am certainly ready for this teething to stop! I almost brought out the old burp cloths the drool was so wet..
Its nearly 3pm now and no nap from Miss Madie yet...she sleeps then crys..:(
tonight a warm bath and some bottle with hopes of an early go-down..poor baby :( And tylenol!!

And Holi, those are before ACTH! Madie had so many rolls! when she was on her shots she just looked more exploded than cute..:(
I will keep everyone posted. ya know if anything we will have good information...:)

Dads Day

James Voegler August 16th 1952-Feburary 4th 1994


Who would have ever thought that just a couple months later our lives would change forever..and the word "seizure" would be in our forever vocabulary.

Madie continues to do these annoying jerks. they look way too much like spasms to me..I am scared that they only COULD be....dunno. Myoclonic jerk?? Same thing?
Only and EEG would tell us...but who says that in an hours time she would even do one?
Dr Chugani was prompt in responding to my e-mail saying briefly that he would love to see Madison and would do a long EEG and PET scan on her and tell us his findings. said he would have some woman named Sarah arrange something...dunno. Its the weekend so I will see if we hear anything this week. keep ya posted on that..no news yet!
Happy Fathers Day all the daddys...:)
I blogged about my father awhile back and well....wanted to make a whole other blog about him..but its too sad. I can ony say that not a day goes by when I dont miss my father and his big hugs and laughing at the jokes and the love that he gave us kids...I hope you are watching over me Dad.
((((hugs))))
PS tonight I make hubby "Breakfast for Dinner" he is a huge breakfast fan and so I fry up the ham and eggs.. and we FEAST. :)!

Rain, Dr C, and 79th Birthday Parties. YES all in ONE! :)

So many days of rain...days and days and days...WED was sunny and other than that...a good solid 2 weeks...when will the rain go?? ehh!!!

I Blog today full of thoughts...well not that many...An ADDer can only hold so many and actually have the ability to organize them!
I read so much about this Dr Chugani(sp?) from Michigan..NOt only am I intrigued by him but I want his opinion on Madison! Its a long journey from CT to get there...and would I really get the answers i seek??
Madison is so delayed....she has come so far since...oh even a few months ago...but things are just not progressing as I would hope they would..Like should I just give up my hope of madie walking some day?? NO WAY I refuse!! Is all this genetic related? HAS TO BE!or not?? I am full mutation of a disorder called Fragile X syndrome...my younger brother HAS the disorder he is mentally retarded.....I have a 50/50 of giving it to my child...madie was compleatly negative of the gene...BUT does it stem from that at all?? We kinda ruled it out.. Is there a good reason for her poor muscle tone? Is all this simply because she had IS when she was little?? Are these jerks she is having the RETURN of IS? Does IS return?? Why does she not use her hands well? Sensory issue? Or is this all some horrible neurological disorder that no one has ever heard of??
Ok mama...deeeeep breaths.....

My Big reason for being so intrigued by Dr Chugani(have a spelled it right?) is I feel like he is aggressive...he wants to KNOW what is wrong...he gets the tests that other doctors kinda blow off....keep me posted Reagans mom...!!!
I wonder as well if maybe just a trip to New York or Philly or Boston will be the answers that I seek...I don't even know where to begin to look!
I tell ya, if Dr C. can help lil Reagan I will be brought to tears.! This little girl goes thru soooo much every day! I also very much know the feeling when you don't see seizures anymore and your child wakes up...becomes happier, sleeps better, vocalizes more...its the best! MAdie has been trying so hard to crawl! I call her a frog!
OH gosh and lil Sophie! Madie was never a surgery candidate but this lil girl... AMAZING! ...so strong! I have no idea how I would handle...I think I give more Kudos to her parents! Sophies got it all down! Shes a pro!
I just want someone who will go ahead and run this test and that test...try to LEARN about madie and figure out things...not just a new seizure drug...Seizures are an issue NO doubt...but there are so many things steming from it...
Her feeding issues, her sensory issues, her lack of physical strength, her lack of cognitive function, her weight issues...lack of gaining!( she was 90th percentile her first year of life..before all these drugs and seizures), her noises...are they typical of a certain disorder? I love them but they are by no means trying to say "mama or da da" Is all this BECASUE she has seizures?? or ALSO something else??
SO many questions...I just kinda get assigned a new therapist for all of them....PT, OT, Speech/feeding, GI.....
I am just wanting that extra Mile for Madie...and I want ONE person who can figure some things out..let me know that I am not wasting my time going to all these appointments and spending my 40 bucks for speech and GI..etc...Someone who will not just assign me to an new therapist...or a new drug...
And the drugs...Whew...get me goin on the drugs....I blame the drugs for alot of things...I never understand why the doctors have to have our kids on such cocktails...ever think about their growth and development being effected from the drugs alone???
My thoughts are feeling disorganized I am I jumping back and forth...typing frantically before I loose my words....
For now, I am going to do my research and try to find someone...what do you think folks? Told Hubby one of my mamas has to have an e-mail for Dr Chugani....eh??
Hook me up!
Today we celebrate Madies great grandmas 79 birthday with the only way we all love to celebrate with a big dinner! :) Hubby will be picking up flowers and we will get madie insanely cute in some outfit...and head over :)! Bless her. she is something else..if only she would stop accessorizing her home with QVC buys...LOL
Hugs mamas!!
:)

Cottages and Teething Pains..

Just a short walk from the cottage on the way to the beach is a pong filled with these pretty lilly pads...I wanted to see a frog...:)!!

Sweet Madison. On the beach. She ended up rolling out and getting sand on her FACE..ohhh man...messy messy especially since she is just slime fest with her horrible on and off scream fits from her teething...oh kiddo..

This little person is Madisons cousin Amelia. Amelia was so excited to see madison she was saying Hi and trying to give madie toys and petting her like she was a soft bunny..saying that madie was so cute..she is so funny when she runs around with her lanky legs and her big feet...lol. I took great pictures of her playing in the sand. It was so sweet to see her exploring all the little rocks and putting her feet in the freezing water! This funny thing she plays with shoots bubbles out of its mouth and makes bubbles all over...madie got it for Christmas and I thought it would be fun to bring :) She is making bubble pie she says...:)
Amelia is only 3 weeks younger than Madison.
I know that IF or WHEN Madison finally climbs up big kid mountain and stands on her own two feet I want to think that Amelia will show her all kinds of things and be so patient with her. I just Heart her.

Just a peek over the side of the deck you can see the water that is just a short walk away..

RRRRRRIBBIT!
Doesnt she look like a Frog??




And In conclusion...It was wonderful to see everyone and Amelia and her mommy will be in town till Sat..they will be back closer to us when they go to my inlaws "real house" (lol)
BUT BUT madie was a PAIN!!! The on and off crying! Oh gawd! Sat night she just would NOT sleep...no no no crying this particular evening...just waking about 2 times making her motor boat noises....Yeah laugh it up..but I got zero sleep...I wanted to put her in a sound proof room! The house was packed! we all had beds but no more spare rooms left to move her...This pic is from the baby shower that we threw for Annie...I was bout to give up....
teething stinks!!
NOW as I type...Hubby is making her laugh hysterically...oh...15 minutes before bedtime and we are about to watch Intervention...yeah. LOL..
Home again home again...back to the grind.
Prayers for sweet Reagan and for lil Zoey for continued good health :) and less seizures and more sleep! And specially for Austins mom..who is feeling helpless against Austins Seizures and reeeeally needing a time out. :(
:)

Strange Dreams...(no dream analysis for these..LOL)

I was really going to go into a rant and rave this Am but ya know...fer-get it!

Madison was up at about 530 this AM crrrrrrrying and crrrrrying...oh shoot! I had no clue what she was crying about..assuming always her teeth coming in! Well I changed her wet diaper and sat with her till her pitiful lil sniffles of crying recovery stopped and put her back in bed. Well not so much longer later she was crying again so I went and seeked out "mommys lil helper" NO not the cat...Tylenol!
Whew...in bout 10 minutes she was back asleep and I was wired..decided to surf some facebook and eventually when I did not hear any more noise from her room I went back to sleep.
NO joke folks, I had a dream that I was at an Eminem Concert (NO I do not like Eminem music) and suddenly my hubby was up on stage making fun of him dancing around singing the song from the movie 8 Mile....well Eminem began to try to attack Miles but he kept dodging the things he was throwing at him....
THEN I was beamed into another dream...zzzzzooooommmm I was on a bus load of Indian children that we were bringing to MY neighborhood to drop off at their new adoptive families...Hubby and I already had our lil Indian baby that WE adopted at our house and I was helping out on the bus then they would drop me off at home...the lady next door to us..(who is Indian) Got 4 Kids! they just giggled and ran off the bus to their new house...some even cursing that their old village was a "shithole" and that now they were in a dream house! Now imagine all those lil indian accents saying that!!
when I sleep I sleep...I tend to Crash..keep going till I can go no more..by the ends of some days my eyes are burning and I still have not made some dinner!
TOTALLY HEALTHY RIGHT????
Anyhooooo...
I am excited for the weekend and Friday cannot come soon enough! Going back to the cottage where family is coming to town...Miles' Aunt Brenda and her Daughter Annie and Annies Daughter Mia... Annie is expecting baby number 2 and its a boy this time! I have oficially spent too much on a goodie bag of outfits for the lil one :)!!
Its almost bittersweet that Annie is having her second baby...we were pregnant together with Madie and Mia :) Only bittersweet out of a hint of jealousy that she is pregnant and I am not and that if Madie were developmentally "normal" it would be a time where we too would be thinking about more babies..I loved and hated being pregnant it was TOUGH but also the most amazing time!! and having Madison I would have never known the tough journey ahead with seizures and delays and therapies...WHEW! Madison is my lil gift...and if I ever have another...eh...who knows for now I can say NO...too much on the ol plate already I can barely chew!! I have such fears of having another child with severe delays...not so much seizures just delays.. I always said I Juuuust wanted to see if madie will walk someday....

Madison is doing well! Dont get me wrong! Aside from the annoying "Jerks" here and there and don't seem to slow her down...BUT WHEN OR IF Madison walks they will certainly make her fall...is there a song that builds up to me saying "Helmet Time"...??WHEN oh WHEN can we be 100% seizure free???? GAH!!!
Id certainly take a child who is walking and running with her lil helmet on....LOL
Oh gawd, can U see the pics?
Madison remains a CRAZY roller...she wants to crawl SOooo Bad!! We can only wait and see.
SO anyhoo I guess I have rambled enough.Today we head to the grocery store and pick up some ods and ends and hopefully Madie will get in a good nap in the meantime :) Looking forward to the weekend...cmom Friday...:!!!
ME

Preschool!!

Before I begin I just wanted to share some pics from today! For Madison to take things and bring them to her mouth is BIG! The picky eater, the sensory nightmare that she is! (ok not that bad..;) ) teethiing alot these days but she was never one to take a teether...I spent money on about 3 different types of teething rings with no such luck. This easy toy of course is some of those plastic links with krinkle paper tied to them. :)

She did not go down for a nap till 4 today! and its nearly 530 now...stiiiilll sleepin. I am going to regret not taking a small nap myslef huh??
WELLL...Big News today! We went this morning to see PRE-Schoool!!
I am so full of thoughts on our meeting at Cherry Brook Primary School...
Its a nice school and the woman who wil be working with madie are all so nice. the room is so full of activities...that normal kids will be running around playing with.
Oh my Madie...I wanted at one point to really just say "Thank you I have seen enough" and leave. I wanted to more than anything to just let madie loose in the room to explore and see the things around her. The nice woman was going on about how there are different areas of play in the classroom that the children play in and one was a kitchen and one was a reading area... and that madie would have her own cubby for her things. We walked down the hall and she showed me the rooms that her therapies would be held in...It was also nice to meet the therapists and to see that they were woman with experience...well meaning they were not 22 year olds who looked like college kids...I cant explain WHY it feels better to have therapists that are older than me...by at least a few years...LOL
I am super skeptical of public schools...If I had a million dollars Id get madie into the best private school money can buy...but lets get realistic folks...we are not Millionaires....we work with what we have and make sure its the best we can get!
*sigh*
I dont know. I just dont know. Maybe I just need to give it a chance...to be what feels like the ONLY mom in the whole WORLD of kids who has a child with special needs...(not true of course) Doesn't really feel like the shoe fits...at least as far as kids with the same physical disabilities....
Madison has been doing great with her pushing and using her muscles she just wont put those hands down to push to a sit...if she would juuuust use those hands!!

The Room was empty with no children in the class till 1230..as the classes are Wed, Thurs, Friday for Morning... and Monday Tues, Wed, Thurs for afternoon kids...
Everyone was taking notes and madies therapist was speaking and also taking her own notes..we talked about a brief history of Madie and her seizures and the delays that we are dealing with...It seemed to go well...It was BOILING hot in the conference room and of course the last seat left was the head of the table that I HAD TO sit at! Talk about nervous...I felt myself at one point breaking into a sweat and clenching my hands so tightly I was digging my finger nails into my hands...
All of this! School?? Kids? Madison?? Completely mind boggled. I wanted out and I wanted Water....
Well needless to say I survived...madie seemed to really care less but was wide eyed and looking around...
I am so exhausted today...my eyes burn for sleep..as madie has other plans of her usual noises and rolls..not the least bit sleepy.
Yesterday was a successful picnic at the house...bout 30 people were here alot bringing dishes and fruit and yumm yumms...I felt like I was always in the kitchen and always trying to clean up cups and dirty plates and chat with people I have not seen in awhile AND take on full baby duity at the same time..
Madie went in and out of happiness...at times being so overtired or teething she would crrrrrryyyyyy and Id have to drop what i was doing and try to feed her..(refusing bottles) I got her to nap about 445...for an hour...she was mostly all loud happy screams that would pearce your ear drums! Happy but fighting that nap allll day...not officially down for bed...I mean no more noises...and fed and quiet...till...1030.
She was up bright and early at 645...WOO HOO!! lol! and Uhhhhhhh!!!
SO that is that folks...We wait till end of August to get the scoop and get her officially IN...and do all the paperwork etc...and say bye to our beloved Birth to Three therapists..:(!!
For now I just hope that madie gives me a nap of some sorts so this mama can take a moment.
(((( Hugs)))))

Madie G, Picnics and GI Doctors. :)

Im so excited for the weekend! We are having a big picnic/bbq at the house and everyone is bringing a dish! The weather is supposed to be 77 on Sunday so we couldn't ask for better weather!!
Madison is goin strong..no huge seizure since her med increase last week..I have however captured a video of her quick stiffening to show Neurologist..these look too close to spasms for my liking...we can only keep pushing for an EEG sooner than later..I am going to begin keeping track of them...is there an age where spasms don't occur any longer?? I thought it was 3...

In the lighter side of the news...dunno if you have ever seen the pictures of Madie in my kitchen sink in her baby tubby..but this tubby is not getting any bigger! Madison measured in at nearly 36 inches!!(at her GI appointment I will go into)
We are trying to utilize Birth to Three before we loose them..to purchase this bath seat for Madie..:)!! A whopping 270..(I think) for free!! the bottom is easy clean mesh and there is a waist strap..not much to it...they just dont make bath seats for big kids!!



I am having trouble posting the link to this chair but its called Minnow Bath Support and is on a wedsite called Spinlife.com Sooooo that is that!
We are going to Uuuuu guessed it...get the good ol Birth to Three folks to hopefully get it for us for the low low price of ZERO. *ting*

GI apointment yesterday was really nothing I have never heard before...for 40 dollar co-pay I was still told to keep up on the Duocal in her shakes and that she really wanted us to feed her the Boost shakes again...I told her for 67.25 for 27 8oz shake... I was opting out of those and just trying to add more calories in less expensive ways to her Pediasure...as long as she gets 4 of those a day she will be getting her nessesary nutrition as far as vitamins go...even a ground up Flinstones vitamin is OK too...I have been also adding some heavy cream or veggie oil...or anything containing good fat..The Nutritionist spoke to me telling me she wants to put our name in for a program I am not quite understanding to get money for the shakes..hmmm we shall see...
Madison skinny mini is STILL weighing in at 22 pounds...BUT gained an Inch! I could only laugh...but also become frustrated...WHAT will make this kid gain!!??
keep ya posted on that...I guess that is all...Madie is fighting her nap this afternoon and still looking a bit sleepy...but rolling all over and yawning between squeals lol!
Cant wait for weekend and already feeling a bit NOT in controll of planning this whole thing as hubby invites more people and tells them to bring a dish....I guess I should be thankfull that I am not cooking. I am just one who likes to drive myslef nuts and take credit for everything! hahaha
hang in there and have a great weekend! Summer is here! 77 on picnic day!!
:)!!

PS

A few pictures I just couldnt resist from today..what a great day madie had!
Great Great! Slept about 45 minutes for me! Im beat! maybe an early bedtime tonight...should I press my luck?
Enjoy some pics.

Krinkle Paper and Feeding Therapy

This stuff Madie loooves! Its that plastic wrapping paper stuff...krinkle krinkle she grabs this stuff with both hands and krinkles away..even sticks her little tounge out and licks it..haha. I tied a large pice to a couple of those plastic chain links and presto! A toy. :)

Madie loves to be up on her elbows..she rolls and rolls and juuuust can't quite get it yet.

I call these moves breakdancing..she just wont stay on her blanket long..now will this in fact lead to crawling?? I never know with madison..and I am always worried about seizures returning.
But we enjoy the giggles and the head bumps and nap fighting...she doesnt want to miss a thing! STILL every day twitches...quick full body stiffenings...annoying lil boogers..but don't slow her down..but worry me just the same..

Took out my Yoga Mat and it made a great surface that was still soft for madie to practice..:)
We have not heard anything about her blood work but we just had it done yesterday...it was awfull!! One of those times when the gal just cant get the blood to flow enough or cant find a vein...who knows but they pricked both arms to get their 3 tubes! gee wiz! She was in a hysterical growling cry when we were done..whew!
Feeding therapy this AM went well...she ate her sweet potatoes and even opened her mouth for the spoon! Now where that came from whoooo knows!! Ill take it!
Cant say she is avidly eating her solids we still get most of her fat and calories from her Pediasure and her Duocal but evvvvery day we try a lil at a time..More on mamas plate she just cant swallow...uhh!
It also took me forever to get there...hittng every traffic light and road work they were paving and merging lanes...and no one can grasp that concept...LOL
Just wanted to post a few pics...not my best work but it kinda shows what madie is doing...she just cant get that much weight in her arms! and get herself into a sit...WHEN?? Only time and Madie can tell us.
I can hear her reaching and grabbing her toys in her noisy box right now...I can hear the krinkles and the funny chimes of the Hungry Caterpillar toy I got her to hang. You could say we really pimped out the noisy box...I beg to differ if anyone has as cool toys as madie in THEIR noisy box...hahahah
Hope everyone is hangin in there- :)
((( hugs)))
Me