Thursday, March 31, 2011

E-I-E-I-OOOOO

Peanut butter and Chocolate…homemade Apple pie…a great new hair cut…or the perfect song…this is how strongly Maddie LOVES Baby Einstein’s Old McDonald DVD…she literally screams following me around the house until I put it on for her…she watches it…she dances to it…she sways to it…she screams to it…and she talks to it…she loves everything about this video…I am glad she is so passionate and that she is starting to discover her likes an dislikes…however, we may have to get another flat screen just for her…I know that video’s are not great for development…BUT she was in the hospital…I put it on…and since then it has been a hard habit to break…she likes to eat to it…wake up to it…I bet if she did not get so excited about it she would even sleep to it…Maddie is very sick right now…she is coughing, aching, crying, running a fever and her nose is on consistent over flow…so Maddie is getting anything she wants…another habit to break SOON...ice cream and cheetos for dinner…

Wednesday, March 30, 2011

slowly...

Today…living in the now…this is a great theory of optimism when having a child with unknown health issues…unknown future…etc…so I stay in the day to day…it is my happy place…but then things hit me…like teaching a 11 month old in five minutes to suck out of a straw…something it took Maddie months to do…I am not sad...just amazed at Maddie…little thing like that remind me of how hard she has to work…how I fail to understand her needs…because of my impatience…example walking…she has taken 3 steps…she is still at 3 steps…it has been 2 weeks…and she does not seem to get any where…but we still scream like it is her first 3 steps…still I get a rush about the steps...because I know that Maddie is getting stronger everyday…even if it is like watching a flower grow…or a sloth move…we are taking it slowly, slowly, slowly!

Saturday, March 26, 2011

meet Maximus...

BAT Max
always has time to help his sis

making a trap for cheetahs
catapult that Chad & Max made
Max n Dad 2011
won Crazy Hair contest at school
premature balding
helps his sister and loves it
our family happens because this little boy keeps us on our toes...Maddie is VERY lucky to have a big brother like Maximus...he is a SuPerStar! sometimes I feel Max gets lost in Maddie's world...he does not seem to mind...he is Maddie's #1 fan...and I am his...

Friday, March 25, 2011

as the story goes...

Once upon a time…a seemingly reasonable person told a story…trying to be funny they used a voice…an accent of sorts…to describe the characters in the story…but instead of being a complimenting voice…a voice of a younger human…this voice portrayed great stereotype and wonder…wonder of why…why do we have to use “the voice”…”the voice” that is describing the “r” word…unintentional…probably…but how in 2011 would we use a voice to describe a particular group of people…in the back of peoples heads do they not think…maybe this could be offensive…that maybe the person that they are talking to that has a child born with an extra ability…and could take offense to it…because they hesitated when they began the story and changed there words to describe the youth in the story…so clearly they knew not to use the “r” word…instead they used mentally challenged with a shrug…not great but at this point any change is a good change! The story is funny without “the voice”…the story is funny without prefacing it with what the kiddos were born with…Once upon a time a boy and a girl were in the park at school…the principal turned the corner and found the boy on top of the girl…when he asked what they were up to…the boy said she lifted her dress an told me to jump on! What did you expect me to do!...this is a funny story…no need for “the voice”…or the description of the two people…all they had to say…there once was a boy, a girl and a principal….

Wednesday, March 23, 2011

true emotion

To say that milestones are a big deal in our world…would be a lie…they are a HUGE deal…like the biggest thing since having Maddie…I am not sure why…but I love them…I love to see her accomplishment on her face and in her swagger…Maddie is full of firsts…she is almost exploding with new things daily…just this week…she began standing up in her crib, pretending to blow her nose, laying on the floor yelling at the DVR to play Baby Einstein-Old McDonald…and today she ate a cut up banana…these are HUGE deals in our world…we take nothing for granted…we never short change anything about Maddie…when she took her first steps…I cried, I sobbed…I have never felt more joy…I was overwhelmed immediately...it is hard to explain…with Max I assumed he would walk…but with Maddie in the back of my head there is doubt…of what she will and will not do …in the beginning it was like Maddie was not real…she was just there…I loved her…but interaction with her felt strained and mechanical…I did not feel I had a typical “normal” connection between me and her….now I have never felt a deeper connection with another person….she is truly the daughter I have always wanted…it helps she is full of herself…cute…funny....and naughty...she is all up in our grills…demanding center stage…when she pulls me close for a hug and kiss…I swell with love…a love that is so raw and strong…it seems when it comes to Maddie…she brings the most primal emotion out in me…she has made me more scared then I ever thought I could be…more strong then I ever thought I could be….and more at peace then I ever thought I could be…yeah to being Maddie’s mom….

Saturday, March 19, 2011

just fun...

Maddie making her clover

look out

luv the princess cup

I am reading...no bothering me

playing the Wii

Thursday, March 17, 2011

LuCKy 17...

So Maddie has been up to a lot lately…I am not trying to diminish her latest and greatest! (previous post) So things I am so proud of…and because lucky 17 sounds good…
1. eat very small bites of hot dog, grounds beef, and fish
2. take 2 to 3 walking steps
3. squat down and play
4. cruise like it is nothing
5. brush her tooth
6. throw a screaming, kicking, throwing fit to go outside
7. wrap you around her finger with one smile
8. kiss with her mouth closed and tongue out
9. dance with her butt in the air
10. do a little hop with a turn on her butt (gotta get video)
11. draw a straight line, holding the marker correct
12. understands to help put on shoes
13. understands it is time to eat ice cream
14. drive her brother crazy with ALWAYS having to be near him playing
15. can get in and out of play blue car
16. can self feed a cheerio and cheeto
17. will ALWAYS wake up with a smile and hug
Happy St. Patrick’s Day…

Tuesday, March 15, 2011

Rage on...

I am ok…I keep telling myself that…if it does not bother Maddie…then why should it get me…Maddie has been passed officially in ALL milestones by a 10 ½ month old…he is saying mama, dada, hot, up, etc…he signs, he eats big food, he has teeth, and he walks…he knows where I keep things and out of sight does not mean out of mind with this kiddo…I am not surprised…I have known this was going to happen…I have watched “it” inching closer and closer…but to see it happen…there it is and now it is gone…I am not comparing…because I cannot compare…there is nothing to compare to…he has done it and mastered it…she is still working on it…I knew this was not a good idea…me having a baby in the house so close to Maddie…I knew this day would come…but I thought my child would be different…I thought my child was above the curve…I thought just maybe she would continue to meet her milestones on the developmental chart…I was wrong…yes…she is meeting them for Maddie…and that is the easiest feel good for you comment there is…it is on Maddie time…Maddie will do it…Maddie is great for Maddie…yep…that is right…but it does not make this competitive mom feel better…it makes me roll my eyes and just think…will it always be this way…will I continue to see her fall behind…when will she understand this…and how will we handle it…today Maddie was crawling as fast as she could with her head down and a wiggle in her butt…she looked at me and smiled and then pushed him down and took his toy…I guess that is how we will get though this…Maddie will rage on and I will cheer!

Monday, March 14, 2011

StiNkeR...

Maddie and stinker go hand in hand…and can I say I am so VERY proud of her for being a stinker…I am not sure why but when I got the diagnosis…I thought there goes every idea I have about little kiddos…Maximus is and was a hand full…I am not exaggerating at all…he is the kid that makes you not want to have more kids…he is high energy, loud, smart, and not a sleeper….he has called 911, broke our flat screen TV…and he is the kid that throws a fit in any store or restaurant…and he remembers everything…so do not say something if you do not mean it…Maddie has been up to this point very mild temper…she sleeps through the night as long as I can remember…she did not fuss or cry…she was just perfect…then one day she seemed to have found her voice…and a very inquisitive nature…if she is not trying to get through the patio door to go outside she is in the toilet…she screams when she is happy, sad or mad…she has found that her voice gets her results…she tries to escape out of EVERY buckled seating tool…,,grocery carts, car seats, high chairs…you name it she is working on wiggling out…Maddie is a stinker…I think a stinker makes you smile, makes you happy…for me it is relief that she is stinking the place up!

Friday, March 11, 2011

older is good...Grrrr...

as I was watching the View this morning...they were talking about having babies after 40 and how it is very rewarding to be an older parent...I appreciated there was not talk about the risks of having a baby after 40...because I think the only risk of kids after 40 is the baby pounds do not come off as easily... in a few years I will be 40 years old...it is does not bother me to much considering my 20's are worth forgetting...and so far my 30's have been pretty fabulous...parenthood has been better then I had bargained for...so as I get older I seem to get more comfortable with me...I am ok that I like hip hop pop music...and I still like the videos...and I like to dance and sing like no one is in the room...the other night we went ice skating...we had a blast...after 20 years + of no ice skating I picked it up like it was yesterday (so I thought)...it was funny Max was work'n the ice teaching himself....and this 4 or 5 year old comes over to me and says do you want to race? I said oh ya! he said ok gooooo I did and I was doing really good...the next thing I knew I was flat on my tummy sliding across the ice...it was AWESOME!! it was "normal" and I laughed...Chad was rolling and Max and Maddie did not know what to think...so they both followed suit and laughed...little things is what I appreciate more then ever....I notice more...today driving down the road with the music bumping and the kids dancing....was "normal" it was good...the older I seem to get and the more experiences I go through seems to make me more confident more at ease with what is our reality...the more I observe, the more I see that my ideal of what I thought marriage and family were...was very off base...that family is what you make of it...if you choose to be busy and consumed by keeping up with Jones...then you will be busy...if you choose to have a quiet slow world...then that is what you have...I have people comment alot that they could not do what I do in regards to Maddie...I think how could you not do what I do...I just love and do what my family expects me to do...I taught them how to treat me...I taught them what to expect of me...so being Maddie's parent really is no different then being Max's parent...I am looking forward to my 40's...a cougar has always been one of my favorite animals ;)
ants in his pants!



Wednesday, March 9, 2011

Maddie has been busy...

Maddie LUVS Mommies Starbucks
Maddie loves to color...GREAT grip!
the kiddos love boxes...to bad it was a new water heater :(
not afraid of the snow!
let me try...
climbs on and in EVERYTHING!

Tuesday, March 8, 2011

prehistoric practice...

for Maximus's having to stay home during Maddie's recent trip to the hospital...we went to Max's favorite dinosaur museum....and Maddie needed to get her walk on!


it was an awesome day and a great way to get Maddie to practice walking! Maddie and Max had a ball...


extra(s)

last week someone mentioned that Down Syndrome is not an issue it is the extra(s)...I kind of shrugged it off and I was not at all offended by the comment...but the comment would not get out of my head...and still I am thinking about it...when we found out Maddie was going to be born with an extra chromosome...it consumed me...my every thought...my every move...but today it does not...only sometimes I will be gazing at my Maddie and think ooohh there is the Down Syndrome...now when I look at her I see only perfection...when she was getting ready to be born I was scared of the extra health issues that are associated with Down Syndrome...in Maddie heart and the esophagus TEF/EA…so the extra(s)…I enjoy that Maddie receives therapy 3 times a week...her therapy sessions teach me to parent and teach my children better...I think it is amazing for Maddie, for Max and for me...our therapists are our life line...they are the people that can help us with things that doctors only read in books or learned from studies...our extra(s) have shown me it does take a village to raise my children...a not so nice extra...I am not as offended of the “r” word...at this point I am numb to it…I have over thought what I will say and how I will react…and of course I will be sad and mad but…I think that if you choose to sound ignorant…ok…if you choose to use it and hurt my daughter…you get to live with the guilt of not being nice…and I get to hug my little girl and explain to her why people have to be so mean and selfish….another extra...Maddie and delays…screw them…she will walk when she does...and she is close she is taking steps and we scream, clap and cry every time she does it! we celebrate EVERYTHING…and it is good…but the extra(s) that makes me cry, cringe and hurt…makes my tummy turn and I have no answers for…Maddie chokes…or should I say obstructs her airway every couple of days…yes that often...and then there is a waiting game of should we or should we not take her to Denver…we can not be treated in our home town…they do not have the tools to help her…nothing small enough to work on her…so either we are life flight, ambulance to Denver or we drive ourselves…so it becomes a waiting game...tricks of the new trade that I have had to learn…she can breath she just cannot eat or drink when this happens…she will sleep and she does not complain…unless it gets to full in the blockage and she begins to throw up…so then I begin with letting her esophagus relax…trying to serve her ice cream to either puke up the item, make the item go down…or encourage the acid reflux to eat it away…this is an extra that is hard…when something is lodged it takes anywhere from a couple minutes to a couple of hours to a couple of days to determine what we should do next…the doctors do not have answers…it is a wait and see…a trial by error…an extra we have to just deal with…the other extra that weights heavy on us is her heart…and the pending heart surgery…of course it looks like now it will be done orthoscopically and not opening her chest...this is good…and every one tells us an 'extra large' ASD is a good heart problem…yes it is...but not when it is your child…so yes I am thankful there will not be an open chest…but there will be other things and there always are…Maddie will have this surgery around 3 years old…just a year away…not something to look forward to just another extra…I am thankful that Maddie is relatively healthy…and she is VERY happy and content…but the stress of the extra(s) and the stress of the unknowns are about to do us in….



Friday, March 4, 2011

choke choke go away...

To say this week went by fast…would be complete understatement…Monday night Maddie choked…or should I  say obstructed her airway…of course Maddie chokes about twice a week sometimes more…so this is our “normal”…Monday night was typical…she  was eating fine ground beef and avocado…and began to choke so Chad helped her get it out…Maddie started yawning a lot but I just thought she was tired so I put her to bed…she slept in and so we were rushing to get ready for therapy…I gave her medications 2 liquids and 1 crushed pill…everything went down fine…then a few minutes later she started coughing and using her gag reflex and more hamburger and avocado came up…I cannot believe this child can sleep with things caught in her esophagus! but she can and does…so I continued to watch her and just thought her esophagus was aggravated by the food being in there all night long…Maddie laughed, played, had therapy just like any other Tuesday…I gave her medications at the same time I always do to prepare for lunch and she coughed at the first one…again not unusual…I began to feed her ice cream thinking for sure she would eat that…she did and then with in a few minutes she began coughing, gag reflux and up came the ice cream…so I tried yogurt, baby food, cheetos…all came up…so like any good parent would do…I put her down for her nap…because again this is not unusual but I just had a feeling…I called Chad and told him to prepare not to be there tomorrow…I think we are headed to Denver…he did and I called the doctors and began the process…at 5 pm we were at the ER and we where told to drive 4 hours to Denver for a work up…yes this is why we do not like to go to the doctor…it is not just a short 10 min car ride or even an hour it is 4 hours…so we dropped Max off with friends and off we went…so picture this driving on long Wyoming roads not a car in sight or a town…so I felt a tad vulnerable to think that if Maddie begins to aspirate…what do we do? nothing because we have to drive 4 hours to be seen…10 min out I called the hospital to warn them that we were there…we checked in an I said that the surgeon is waiting for us…so they lead us back to a room…little did I know at the time that we were suppose to be on the 4th floor peds unit not the ER…but of course communication is a bitch…so 3 hours later the peds floor finds us and Chad and I have had NO sleep and Maddie is going on 24 hours plus of no food and not much water…she is sad and tired…we get up to the room and Chad and I get a couple hours sleep and then the waiting begins for the esphogram…as we get in the room we see familiar faces and that is nice and comforting…with one big sip of the barium there it was a HUGE foreign object stuck in Maddie’s esophagus…surgery scheduled for 4:30 pm…so in the meantime Maddie is mad she cannot eat or drink so she slept a lot! finally we get in and they dislodge the object…CARDBOARD! Yes cardboard from the Birthday Party games we had on Monday…along with hamburger, carrots, and cheetos…all lodged in her….for 36 hours…I am not sure that is comfortable…but since my baby cannot speak…why hurry! because she is happy and smiles…why hurry…just go about your day as if there is not a child actively choking….but whatever! while they were in there they dilated her esophagus…so all in all it was a good thing…crazy I know but I got some good questions answered…about Maddie and TEF…Trachea Esophageal Fistula…I am thankful she was not stricturing and it was a foreign object…because we have made great strides with eating real food…I am thankful we got a great doctor that could tell us not to be surprised if Maddie is not self feeding a complete meal until she can cognitively understand…that she has to chew till the item is very small and take BIG drinks…so she on average sees kiddos around 5 or 6 be able to accomplish this milestone…of course Maddie can pickup  a cheerios and feed herself…she can even use a spoon…but Maddie does not get she can only have one cheerios at a time and she has to swallow the first one before she gets the second one…and I was reminded to slow down and be thankful…be thankful my support system for a great husband and a rockin son! and most of all how great Maddie is in situations like this…she is just cool and pleasant…not fussy like you would expect her to be…I am glad to be home and maybe get some rest…