Monday, November 26, 2012

communa-what...


Here is the deal...communication with Maddie sucks...yes she has some words...some signs...some pec cards...but she needs more...I need more...the frustration level is now hit the roof for both of us...when Maddie comes home from school...and can not tell me how her day was...it is just old...I rely 100% on what the teachers tell me...she enjoyed dancing and singing...thats great but I want more...Maddie cannot tell me if someone is hurting her...and I want to know...Maddie cannot tell her friends she wants to play what they did the day before...so she lays there and screams...I want more and I know Maddie does to...i want maddie to be able to clearly state what is wrong, what she wants to eat and what she wants to do...and the kicker...Maddie's glasses have been the wrong prescription for the last 4 months...and that is simply unexceptable...I would have not tolerated a bad pair of glasses that were to strong...making me dizzy, sick, and eye strain beyond belief...all I can think of is the headaches she must have had...I have not confronted the eye glass place yet...I am still to angry...and I would not be nice...i now i know why she was throwing them...and breaking them...i thought she was just being 3...so now our specialist wants a second opinion and for us to get our glasses from them so we do not have this happen again...if I could give any new parent advice about having a child with Down syndrome it would be...they will crawl, walk, climb and test your patentince; concentrate on communication...get the best speech therapy available...start early and often...and when you think it is nothing expect more...I am reaching out for more speech...I am reaching out for privatized speech...and I should have done it earlier....it is time for more...new goal...Maddie ordering her own meal out and everyone understanding her...no signs, no signals, no pictures...words...clear, concise, and to the point...

Monday, November 19, 2012

Thanx...


Thank you for little girls with BIG personalities...thank you for little girls with pudgy hands to better wrap around my neck...thank you for little girls that sleep with 4+ dolls, 3 pillows and still in a crib...thank you to little girls that still go to sleep and stay asleep...mommy needs her rest to! Thank you to little girls that still need there mommy to cuddle at night before bed and kiss when they wake up...thank you to little girls that love barbies and dollies...that love to sing and dance...that love love...thank you to little girls that understand the importance of being herself no matter what...thank you to little girls that teach the moms the same thing...thank you to little girls that love to sit and draw and play and dress up and go to school...thank you to little girls that giggle in the car when the whole family is surrounding her and Katy Perry is on the radio...thank you to little girls that love to eat ice cream and watch musicals...thank you to little girls that enjoy the simplicity of watching the mice play at petco...thank you to little girls that still adore there brother even if there brother is not so nice...thank you to little girls that show there big brother how to be nice and patient....that to little girls that remind me why I love her father; when he is twirling her in his arms...thank you to little girls that remind the world to be nice because we all deserve it...thank you to little girls that look good in zebra pajamas and there brothers undroos...Happy Thanksgiving...

Tuesday, November 13, 2012

Update 20 D...


Roughly 2 months ago we went to the doctor to find out about Maddie and her nails falling off...I was not thrilled with the diagnoses of 20 Nail Dystrophy...it just sounds scary and a painful...a forever annoyance...the doctor suggested a vitamin...he had us give her Biotin 2500 mcg once daily...told us that it could take up to 6 months to see a change or improvement...let me say that Maddie had all the signs of this...she was born with fragile nails that just peeled away...I thought it was her heart...then we had her heart surgery and her nails did not strengthen...continued to peel...then they developed white stripes down the middle...then I decided it was her thyroid...then her toe nails and finger nails started popping off...like they were nothing...she would say ouch...and that was the extent of it...her hair was always an issue...she does not have much at all...and it did not grow...her hair is so thin...her eyelashes were non existent...they were there just not many and very short...I chalked her hair and eyelashes also to her heart, thyroid...or just a Maddie thing...so putting her on a simple vitamin seemed pointless and just another addition to already long list of medications... But surprise...it is working...cannot believe it...since Maddie was born I have only cut her nails and toe nails a hand full of times..and now I have trimmed them 2 times in a couple of months! I have only cut her hair 2 times in her life and her hair has begun to thicken and has began to grow very fast...and her eye lashes are even getting longer and fuller...I have to say I am very pleased with this remedy...20 Nail Dystrophy is a unknown why, how, and for how long...all they know is it happens...Biotin is not proven to help...scientifically...but it has helped with Maddie...yeah for good doctors that have been around forever and have seen everything!

Monday, November 5, 2012

blow Maddie blow


Even Maddie blowing her nose is cute!