magic wand...

more alike…this is a great mantra…a great saying…not so great when you are waiting for the piece that makes your child more alike…the piece I see Maddie struggling at …something effortless for one child…but not so for my Maddie she has to practice over and over and then over again…when she was a baby I reveled at the notion that Maddie was not like a typical Ds child…I loved that she was at the “norm”…developmentally and she was keeping up…even in some things she was considered ahead of the “norm”…gradually this was no longer the case…quietly I was not told any longer that Maddie was “typical” that Maddie was doing great…instead I was told that Maddie was doing great for Maddie…that Maddie is finding her own pace…and now we are approaching Maddie’s 2^nd birthday…and the delays are in front of us...at our door step...knocking loud and relentlessly challenging my strength…I know in my head she will do it…she will do anything and everything…in my head I get this....but in the process of watching and cheering…I want to just step in and do it for her…I want to snap my fingers and make everything ok…someone told me that Maddie would not know she was behind…but she does...I can see it now...it is glaring…as the little 1 year old boy runs away from her...she is left and unable to catch him…she tries…she stands up and takes a few steps…and falls…she puts her head down…rests…she knows…after a sigh…she gets up and tries again...just like the little train that says I think I can…I think I can…Maddie never gives up…but as her mom I want to fix the delays…they are there…and they can not be fixed or put a band aide on…. she is not more alike…not yet…but when she masters the next milestone...I will feel better and say look she is more alike…its just the watching and waiting that bugs…

I spy a butterfly...

Easter Hunt...

look @ all my LOOT!

this egging is hard...you have to bend down!

put them in...take them out...

snob...

The other day at the grocery store the clerked asked the man in front of me if he wanted to give the change of his purchase to the Special Olympics…he said no…I was offended...REALLY! 30 cents you could not give 3 dimes… to my daughters future…WOWSA…it made me realize not many people care about what I do…then I stepped back and really looked at the situation…it may not be that he does not care…maybe he just not know…maybe he just might not know that I think the Special Olympics R-O-C-K-S…and maybe be does not know that my daughter was born with an “ability” to participate in the Special Olympics…then I got to thinking am I a “abilities” snob…like do I think my daughter is better then everyone else’s daughter that is born with a label….maybe…and then I remembered a lady I worked with and her son was born with CF…I remember it consumed her…I remember her crying…and I remember me getting annoyed at the constant reminder of his disease…I also remember others in the office rolling there eyes at the many stories and recounts of what came with this disease…and today in the shower I realized that I am her…I have become the women that relentlessly…talks about her child…I am the lady that never shuts up…The lady that you roll your eyes at…so with that said…I will try not to be the snobbie lady that thinks her child is the end all to all childhood “abilities”…who knew a lack of a donation could go so deep…

where Maximus goes...goes Maddox...

No I think I will take a shower!

Haha Mom u cant touch me!

cute butts!

Max has NEVER met a marker he did not love!

Opa!

It is no secret the ups and downs we have with Maddie’s eating…so as I was meandering through the grocery store looking for alternatives for healthy foods conductive to Maddie's esophagus…I came across…CHOBANI…Greek Yogurt…and it is YUM!! Maddie LOVES it…she could eat it for every meal…the great thing about the yogurt…in a 6 oz serving 14g of protein, 20% calcium…so good…it is a little high in sugar…but nothing to worry about…and it is allowing a choke free encounter and she likes LOVES it! on Friday she choked through her shredded mashed salmon and soup dinner then the biggest case of indigestion I have ever had the pleasure of smelling…literally the smell of her stomach acid was seeping through her body…so sad…so unnecessary…then on Saturday morning I was letting her self feed bits of squished banana and she constricted her airway severely…so it was chix broth for the rest of the day...I realized it was time to change up and start being proactive by trying anything and everything so she she does not choke…and help eliminate sum of her indigestion…so currently she is still eating pureed veggies…CHOBANI and introduction of sum kind of soft mushy mild food to help with her chewing…Maddie so wants to eat what we are eating…the CHOBANI helps me give her a healthy filling alternative and some of what we are munching on…

need a little help...

Maddie and I have a love hate relationship with her glasses...I really do not think she needs them...but the doctor says different! she pincher grips small items without them...she can self feed...she can put the block in the little hole all without her glasses...but for a minute I thought maybe her balance is from me not making her wear her glasses more...so I am on a mission to make her wear them....any suggestion would be super!

it is not as easy as others think to have her wear her glasses...currently I have her wear them when her therapists are present...she knows when she puts them on for therapy that they stay on and really does not bug much with them...all other times I am finding them, readjusting them...and putting them back on her...she gets mad and crawls away...fast with a squeal...nothing works putting them on right when she wakes up...she knows they are there...its not like I can trick into wearing them...if the strap is on them...she pulls it off...breaks the glasses...whatever she needs to do to keep them off her face....

and then there is the constant comments from people about her glasses when we are in public...my favorite is does she really need them? they cannot even tell if she needs glasses yet...how can they tell? do you have her in them just to go with her outfit? REALLY would I put myself through the pain in the ass of glasses for an almost 2 year old...the answer is no...but she could not be cuter in them!

Maddie likes RED...

Huston I think we have a problem…yep a big problem…Maddie is officially in her terrible two’s! she will be 2 years old on May 13…and she is getting in some good practice with loud screams, wild kicks, pouty faces, and my favorite…she says NO and shakes her head NO then without fail hits to get the point that it is a NO!…Maddie has now chosen not to sign but to point at what she wants…if I do not come FAST! she begins to scream and cry…when she throws herself down with her head between her legs and begins the tantrum…she will peek up to make sure someone is watching…she has been practicing these rants for awhile…but now she has mastered them…if 3’s are the new 2’s we are in trouble…I think the saddest thing is…I am really taken in by her tantrum…she is so cute while she is doing it…that I give in…I melt…I try to fix…I know I am setting myself up for a huge problem later on…I do have  a strong willed five year old! that on most days is smarter then me…so with Maddie and her new found talent...I am at a loss…a stand still…because the communication between me and her…is efficient…it is just that it is not workable with the rest of society…Chad cannot even understand her…so what to do…more signs, more language, because she really pretends NOT to hear me…not to understand me…so Maddie is officially the daughter I always wanted…”normal”

white lie...

I seem to blog in my head a lot...I write in my head... will have a whole post written, read and published and it will never make it to this blog...sometimes I type a "new post" and it never makes it to publish...I write it and for some reason I am not happy with it...but most likely it is because I have lied in it...I have written something that I want to be true...rather then what is true...blogs seem to go in trends...writings often are about the same topics...I like it...it makes me feel I am part of something...but recently I wrote a blog about how I was ok with Down Syndrome...it is true I am ok with Down Syndrome...but what I lied about is that I do not see it in Maddie...that is a lie...I see it in her...in fact...characteristically it is becoming more overt...but what has changed...from the diagnosis to now...is that I do not see Down Syndrome as a challenge...a set back...I see Down Syndrome for what it is...simply put...a third chromosome...nothing more...nothing less...what is more prominent now is...what stems from the Down Syndrome...most likely Maddie would not have TEF/EA (constricted esophagus) if there was not a third chromosome present...Maddie most likely would have a ASD...considering half of the population is born with this heart defect and it is unidentified because the hole closes before a problem presents itself...Maddie most likely would not have a thyroid issue...but because of the third chromosome is has become a pesky little pill we take daily...it really does not effect much...but Maddie is unable to regulate her body temperature...so we do have to be aware of that...Maddie most likely would not be on two different medications for reflux...but because of the third chromosome it three times daily everyday....Maddie most likely would not have glasses at 1 year of age...but that third chromosome...has made it more likely she will have glasses for the rest of her life…surgery not an option...this however was just a matter of time…both me and Chad have horrible eyes…darn recessive genes...and the ped has already commented to us that Max will most likely have them...not a big deal...just another accessory...because that really is the point...is Down Syndrome a big deal? NOPE...but the accessories that come with the diagnosis can be a big deal...it is the consistent doctors visits...we go to every three months...it is the yearly blood work that tells that her body is working properly...it is the daily dosages of medications...it is the daily reminders of look at how amazing my daughter is...look at how far she has come...look at everything she has before her...when I see Max I am naturally impressed with his smarts...and with Maddie I am amazed at every little thing she does...because I know how hard she has worked… I know it is building to something bigger...Maddie blows me away everyday...characteristics of Down Syndrome are just yummy...I LIKE to kiss Maddie's thick neck...play tongue war just to get a kiss...I love how her toes have large spaces between them...and webbed on others...Maddie's teeth are deliciously CRAZY and cute....but most of all I melt every time she wraps her tubby little arms and hands around my neck smiling and laughing...that is the best...Maddie truly is my best accessory…and that is not a lie

Pretty n Pink

I am cute!

no worries...I got it...

practice...practice...

Designer Whaat?

Designer Genes…that is how I read Down Syndrome being described…I LOVED IT…I think it is so fun, catchy and TRUE! Maddie has designer genes…one of a kind! if I would have read or heard it sooner I would have named my blog that…it also made me chuckle…in high school…a long time ago! when fashion was my thing…I had Guess jeans…I am not even sure they make them anymore…but they were very “in” and I had a few pairs…a friend of mine coveted them…of course she was smaller then me…so I said just take the tag off and sew them on your jeans…she did and VOILA...Guess designer jeans…we made it work for her…she got what she wanted…I remember thinking it was very silly at the time…her parents could not afford those jeans…and I never thought about if my parents could…I have to say I was VERY self involved when I was younger…to the point that I do not remember much about anything…I am not sure if it is a character flaw, a coping mechanism, or just my personality…but either way…I have always liked being on the edge and being a tad different…spunky…I think that is why it baffled me…my response to Maddie’s diagnosis was VERY out of character…you would think I would want to embrace the ultimate challenge…the ultimate “look at us” family….instead I felt it was a dirty diagnosis…something that was a reflection of me….not at all designer…not at all "cool"….it bothers me to reflect back and see that Maddie’s diagnosis…was all about me…it was not about her…about what she would have to endure…nope…I was solely fixated on me and what others would think…yuck! but it was what it was…and I have grown particularly fond of designer genes again…. and I am slowly finding me…but better, nicer…so as I go through this designer way of life…the patterns are still being developed…the layout is still in progress…but the show is playing…and the stars are already shining bright…

luxury :?

The last couple of weeks have been long…me and Max were sick for a week and then Maddie got sick for a week…as we survived the kiddos being down and out...I realized I do not respond the same way to Max being sick as I do Maddie…with Max I feel his head, give him some medicine and comfort him with a movie or what ever he wants…with Maddie I take a temperature in every orifice of her body every 5 minutes… I count the number of wet diapers….I call the pediatrician…I give Chad hourly updates of her looks and movement…I just plainly FREAK OUT! I do! I watch her sleep and I awake to the slightest call for help…Max had a double ear infection…and I just took him to the doctor no stress just lets fix it…Maddie was getting blood work done...so I had Chad drop by the peds office to put her on antibiotics to prevent anything from developing…with Maddie I get so scared that she will die...I know extreme…but I look at her as my perfect little chicka…my little girl that has no reason to feel anymore pain…then she already has endured with several surgeries and more to come…I just want to wrap her in a bubble and protect her from everything…I know she is feisty and naughty and STRONG…but I really think she hung the moon! That’s why I am struggling with the luxury of immunization…someone asked me the other day what I thought about immunization and our children…I responded that we immunize to protect others…do I need a flu shot…probably not…but I do because it helps protect Maddie and the person with Cancer strolling in the super market…I vaccinated Max because he will be in public school…with other children/people that may not be as healthy as he is…it is a personal decision...I just think that an argument should be better then a MMR may cause Autism…because we know this to NOT be TRUE…we know this because of scientific data…we also know that not getting vaccinated and getting my child sick…could kill her…so as non-designer people pass through life with there selfish ways and self important thoughts…and the luxury of maybe I will or maybe I won’t…makes me scared that they will not take the time to understand my Maddie as a human first that is worth the moon and most of the stars….

pink sunglasses n dinos

today we went and explored a Dinosaur Trail...this trail is only 30 min from our home...we found Ammonite, fossilized clams, a Pteradactyl fossil on the side of a HUGE rock and lots of KiDDo CuTeNess!

I think we are ready!

My Family

Hurry up Dad!

I need a break

long hike...time for lunch or Cheetos!

look out I am going in

NO FEAR

going home...had a GREAT day