slow down Mama

So Maddie and eating is ridiculous…and very FRUSTRATING…she was progressing well… so I thought…and at lunch yesterday she took one of Max’s chicken stix and began to chew on it…I let her and watched her close…she did so good I even texted Chad…to let him in on a little "first"…she has been starting to refuse baby food...and wants things with something to them…so I thought french fries…McDonald french fries….really is there anything better…I thought what a BIG girl…so we began dinner…she took the french fry began to chew…and then I noticed half of the fry was gone…and then it hit me it was in her mouth then in her throat and there was NO getting it out…she began to cough like she does…she has been so good about being able to get things up…then she started to have a hard time catching her breath…I said to Max get your shoes on we are going to the doctor…of course I tried the upside down shaking her, I tried the beating it out of her…I even tried the Heimlich…nothing worked…she was responsive and pink…but then when she would try to cough it up…she could not and she would turn gray…Max was so great he said lets go Mommy…and we did …I exceeded the speed limit to the hospital just a couple of blocks away…by the time we got there...I was in full speed…and the nurse asked as we walked in the door if we needed help…I started to cry…and they took it from there…she was wheezing but her pulse was good and she was still pink…it was lodged somewhere and you could hear it when she breathed…the doctor came in and ordered a RSV test…he thought maybe it was that…because that is how it sounded…also they could hear it rattling on her left side…not on the normal right side…as the nurse did the RSV test…she violently started to cough and throw up…and there it came a fry…we still did the x-rays to make sure nothing was still in there…she was a trooper and I was thankful I had dear friends to call to help me out…since Chad is gone teaching in 2.5 hrs away! Maddie is ok today…and I have again eliminated all none dissolvable items from her diet…it always seems we move one step ahead with Maddie then 10 steps back…but this time I do not care…she can eat puree foods for life if she is safe and breathing…so more questions for the doctors…how big is her tube after the esophagus surgery…and will this continue for life…making food VERY small and very dissoluble…Maddie wants to chew…it is so cute how she tries…I knew better then to push so hard…this is when we say…slow down mama….

Maddie's good...

Yesterday Maddie had her 1 year evaluation for her IFSP…went well…she has met all of her goals for this year…and next years goals look GREAT!! I just want so much for her to meet them all…and the hard work continues (for Maddie)! it was funny…one of the ladies said ” your long term goal is for Maddie to drive”…”I remember this being very important to you”…it took me back and I thought did I really say this…was this REALLY my most important accomplishment for my daughter…how crazy…I thought how short minded…I did not even correct her on my new feelings...I thought I would keep it in just to remind me that I have came a long way…a long way from not liking Maddie…a long way from not wanting to admit she was my daughter…a long way to have such meaningless goals for my girl…I want my Maddie to be healthy and happy…and no longer do I think about long term things in regards to Maddie…I think tomorrow will be better then today and she is coming along just fine…who cares if she is not walking, talking, or even has NO teeth…she is happy, healthy, and by the time she is going to kindergarten she will be walking, talking and will have cut some teeth…Maddie has been so neat lately…her personality is to die for! In the middle of me talking she will grab my face and kiss me…Maddie has a way of telling me everything is going to be ok…

do they make pink glasses?

Maddie is getting glasses! Yes little glasses…I am not sure about this…I am not sure about anything…why does things like this throw me into a tail spin! This month alone…we have started new medication for life (thyroid) and now glasses for life…when she received her extra chromosome I never would have never guessed so much extra would come with it! this is where I start questioning why! I hate that question...why…it is so not a road that I like to go down…because there are no answers...to most people they will say…oh but she will be cute…it is no biggie…and they are correct…it is no biggie…but in this year in her one year of life…it seems every couple of months something new is added to our daily routine of life…between therapy, doctors, medications and now glasses…we need to fit in being a little princess an just being…soon she will not want to take those awful medications or wear those glasses…all battles for another day…

no worries...

do you remember when little things were a big deal…I remember a time when I worried about everything trivial…today I worry about big things and I only try to worry about big things…that I have some control over….yesterday I was challenged with a women…you know the ones that get all caddy when they do not get what they want…I would have obsessed over this or thought of all the things I should have said or done…not today…today I think about the kiddos in orphanages…the kiddos that cannot live a “normal” life…my baby girl is living a “normal” life…it has taken some time to get this through my thick head…but she is more “normal” then not…she loves, she smiles, she hurts, she laughs, she is funny…and she really is present in her life…she makes decisions in her life…what she will eat…if I get to make her hair pretty…whether she goes in the johnny jumper or plays on the floor…a person actually said to me one time…”I am so glad she is not a blob- I really thought she was going to be a blob that just laid on the floor with no reaction”…REALLY! I just gave my you cannot fix stupid look! LuV that look! and I like my progress…

Phone manners...

Access Pass….very excited about this…access to all Federal National Parks....found this info out from a fellow blogger! I am loving the blogging connection…so I check it all out and read the sites…and have Chad ready to go…I call to verify the documentation they need…here is the conversation…


Woman: Hello National Trails Museum…

Me: Hello I am looking for an access pass… I have a child born with Down Syndrome. I need to verify the documentation you need so my husband is not running all over!

Women: (to someone in the background) do we give out some pass to Down Syndrome people! The women in the background then gets on the phone…bring a SSI card…

Me: My daughter does not receive SSI … I cont…not all people that are born with a disability receive SSI…

Women: (in harsh tone) can she write?

Me: No…

Women: well how old is she?

Me: one year old…

Women: why do you need this pass then?

Me: because I can…

Really…this is all I can say…and so it begins…she does not own this pass…the Federal Government does! I do not get why people that work in public do not get educated…get trained...I am not asking for much…but I worry that someday Maddie will be on the receiving end of this phone call…

someday...

Someday…that is what I always say…someday Maddie will eat, crawl, talk, walk, go to school etc., etc., etc…but then there is a someday…I will look back and miss the days that she did not, eat, crawl, talk, walk, go to school etc., etc., etc…I am just frustrated! That she will only eat Gerber cheetos, that she is on medication that I do not know if it is helping her or just another step to a Endocrinologist in Denver…frustrated that the someday of her making big milestones are so far and few between…that someday she eats on her own then she stops…some days she is interested in sitting up and others she is not…with Max he just took off…he hitched, scooted and crawled…when he walked…he ran…with Maddie it seems so slow and almost backwards…I am frustrated that the doctor did not check her blood count…does he not get I am scared…that we should be on top of her health issues not just wait and see…I hate taking a thyroid medication and waiting to see if in 6 weeks that is what is wrong...or maybe it is not…paging Dr. House! I need someone that wants to help my baby now not the lets see if this works theory! I am also frustrated that her tooth is not there anymore and her gums are showing no signs of teeth…what does the doctor say…he says someday they will come and we will wait and see! If by 17 months no teeth…then we will be concerned…who would have thought a extra little chromosome would have caused so much chaos:)~ So I am eagerly awaiting my someday…

great and not so...

  Lab results came back…Maddie is negative on celiac so the doctor...said we will check it next year! YeAH for that!! then the news I knew…her thyroid is not working properly…so she is on medication for the rest of her life…so know it is time to research everything on this subject…and just handle it…I was ok when the Doctor got on the line to talk with me…because I knew as soon as I got him on the transfer…that her thyroid was not behaving nicely!
  Yesterday was a GrEaTday…we took the kiddos to the park and let the fire fighters spray water them with the fire hose…it was wonderful to see Max smile and play…he has such a great smile…Maddie chilled on my back and took it all in…in the crowd of kiddos I saw a little girl…a cute little girl…with blonde hair…and she appeared to have the same extra chromosome as Maddie…she was so fun to watch…so unique -- but not…she was smiling, running, jumping, laughing she was so perfect…she was just like all the other kids…I loved her…and I cried like a baby…when she got knocked down…I wanted to help her and protect her…but her parents let her be…like every other child there…they encouraged her to get up…and run and laugh…I love to learn from other parents…I love to watch the love that her older brother showed her…he wrapped her up in a towel…and just held her…this was a 12 year old loving on his sister in front of his friends…and all I could think…is someday this will be Maximus loving on his Maddie…

I like her...

I received the best compliment I could have ever gotten...I had someone tell me that Maddie looks like me…I am not sure why I was so taken with this statement…but I remember thinking that Maddie and I would not look like each other…then she came out with DARK hair…not blonde like I was expecting…I thought that hope of mother and daughter sharing the same looks/features were dashed…I look very much like my mother and my dad always tells me how I remind him of her…and my looks and gestures are very much like hers…this person even commented that she also has the same “f” you look…I like that she will be my little shadow…last night she got all ready for bed…and Max decided to take a shower…so Maddie squealed an threw herself almost out of my arms…like she does when she wants something…and just had to take a bath…very funny how she is so different then I expected…how she is so much like me and very similar to Max when he was this age…she is becoming the daughter I have always wanted…and I like that…

YeAh for milestones...

Maddie had a HUGE milestone day yesterday!! after 3 shots, a rolled vain and blood taken…she signed *more*…when she was eating a snack…and then when we were playing...YEAH for the MaDDIE…she clapped...she is my big girl…it is so darn cute we say “yeah for Maddie”...and she smiles from ear to ear…and claps…and today she rolled to her johnny jumper squealed....I picked her up and asked if she wanted to jump...she tried to jump out of my hands...I think that was a BIG fAt YES!! to cute!

not sure...

“she wont know any better”…really…these 5 words are as offensive as the “R” word…I am always surprised at who says those words to me…I am surprised because it usually is someone that is educated…I always give the same disappointed look…and I am quick to tell them…that it could not be farther from the truth…. I have read articles of kiddos born with Down Syndrome that they have written on there own and that they have experienced explaining how it feels to hear these words… or how it feels if they are standing there when the “R” word is used…I choose not to watch the ABC “what would you do”…I was not sure what the point was…I am a mother of that person…I think a big “F” you would be said to them…not pretty I know…but I am not PC…I do know that the longer I have thought about the judgments about my daughter…I have realized I must equip HER with the tools and words…to do the right thing FOR HER! not the right thing for me…so I have not figured out the words are yet or a plan...I guess I will know when the time comes…
today Maddie went to the doctor…for her “one” year old check up…with Max I was excited to see how much he grew…for Maddie I am nervous of the results… we will have the results for her thyroid and possible celiac by the end of this week…fingers crossed…