thanks 4 the postive...

A better word then chill is numb…numb that I am starting to re-think who I am…and how I feel…and how I am perceived as a mother of a daughter born with Down Syndrome…it has been a little over a year and a half that I found out that I was going to be a “special” parent…in the beginning it was ok by my inner circle that I was scared and pissed…and over time that has diminished…I have been expected to get with the program, be excited and happy that my Maddie is just so cute…not that she is smart or developing timely…but she is just so cute…I am now expected to be ok with every new medication that she is put on…and relieved that she does not need surgery yet…and why would I ever question doctors and what they prescribe my 15 month old…why am I challenged when I say I am not comfortable with older people with Down Syndrome…why am I questioned when I have reservations about the future…because that very person that is questioning me…has a “normal” child…there biggest worry is if there child is getting good grades…my biggest worry is she giving it her all…because I am not sure the letter grade will matter much…Maddie is more then a cute face…Maddie is more then a doll…she is a toddler, and will soon be a adolescent and an adult…I am told to just go with the flow and look at the positive side of things…so here it is I am so excited that my child will face great health issues for her life…I am so relieved that my child is on 3 different medications for life and possible surgery for the rest of her life…I am so thankful she may never be asked on a date…words can not explain for relieved I am that she may never drive or be independent…I am so happy that she will struggle through school…I am so elated that she will have to work 3 times as hard as a “normal” child to do anything! And I without words that she will be stared at and mocked…Wow I feel so much better about being positive…I never knew that the experts on raising my child were a parent of a “normal” developing child…after this rant does it mean that I love or appreciate my Maddie any less…HELL NO!! I love her and just because I have an opinion about my daughter and I am scared shitless…I will continue to pick my audience more effectively and efficiently…we celebrate "the Maddie" every moment of everyday…because she is ours and weI love her more then we could have imagined…and I would not change her or take away the Down Syndrome…I would just take away the hurt she currently and will endure in the future…oh yeah that is where the “normal” child parent would say our children will have there struggles to…they are just different obstacles…there it is a couple weeks of pent up anger and confusion…smiles

just CHiLL...

Chill…that is what I am lately…CHILL…I am trying not to get upset or in a tizzy…it is working out ok…Max started Pre-School last week…and he did AMAZING! He loves it and I have made peace with his teacher and the “jester”….she is a good teacher and it was a mistake...she learned from it and have move on…when she came to do the home visit…she showed me pictures of her nephew that was born with Down Syndrome…she is trying and I think that in a small way we made a HUGE change in her…she will think before she “jesters” and think before she speaks! Max is sporting his new t-shirt at school today that says “my Sister with Down Syndrome ROCKS”…


We went to Yellowstone for the long weekend and saw moose, bears, elk, bison, snakes, an weasels OOOOHHHH MY!! It was just what the family needed…it snowed on us after watching Old Faithful Explode…it was very cool and calm…Maddie is the BOMB that has exploded! She is pulling to stand, and trying ooohh so hard to feed herself with a spoon and cup, she is also assisting in getting dressed and showing her attitude when she does not like someone or something! I guess we are just coming along and it feels CHILL!

Maddie goes vertical...

Maddie is getting to be a BiG girl...

Photo and video editing at www.OneTrueMedia.com

standing relief...

calm has overcome me…I can not explain the relief I feel…I feel 30 pounds lighter and my face is clearing up! these two weeks awaiting the Swallow Study has been the stinks…it is nice to think clearly again and be able to exist in silence…without little voices in my head thinking of all the what ifs…with this behind us…I talked with Maddie’s pediatrician and he agrees with her surgeon that she take the medication for her tummy…I am scared of this medication the side effects are very troublesome…but with the experts telling me it is the best for Maddie we will begin tonight…Maddie is also glad this is behind her …today she tried to pull herself up! Yes to a standing position...my house looks like a obstacle course with huge mats, tunnels, stools, and tables to encourage Maddie to go vertical! her and Max are having a ball!! all smiles for the weekend…

No Surgery...

That is the GoOD news…the crazy news is that her stomach and esophagus do not push food through fast enough or efficiently…so here comes another medication…one that hopefully, fingers crossed will not be for life! But a couple of years minimal…when the doctor called to set up the medication today she warned me there could be neurological side effects for this drug…that it is very potent and she will take it 3 times per day! but NOT to worry because she has never seen the neurological side effects! Really that does not make me feel better…but I am very happy about not having to put Maddie under or through a surgery…her esophagus is shaped like an hour glass and to small for a cheerio to pass through…so we are to continue purees until ???? and she can handle chewing! she threw up for the speech pathologist during the swallow study…they believe that “bigger” foods may irritate her stomach and esophagus…but that is only a guess…there is only a slight narrowing of the esophagus and very common for TEF/EA babies…it is confirmed Maddie has severe acid reflux so we will continue that medication to help the pain…I am proud of my Maddie! She threw a HUGE fit with screaming, kicking, biting and now has broken blood vessels through out her little face! She is a fighter…Great job Maddie!!

alert: HUgE news she has teeth!! We saw them in an X-Ray!

BuTTerCup...

diarrhea, no appetite, anxious, teary, nervousness, and sleepless nights…its not Maddie it is her mother! I have been exercising like a crazy women trying to be able to get this nervousness out of me and allowing me to sleep… we leave Tuesday night and will have the swallow study done Wednesday morning…by the afternoon we should know if Maddie will have surgery Thursday morning…it will be an intense couple of days…but worth knowing what is up with my buttercup! She is not eating much or drinking much…she is preferring water to all other drinks…so getting her to drink 4oz of milk should be fun! She currently is eating 3 to 4 jars of gerber #2 foods…not much but she is still in good spirits…so if it is a texture problem! we are in trouble…I get this is not a serious exam or surgery...but I am still freaked out! I need to get it together and STOP being a Drama QuEEn!

WrOngOOOOO...

I was just reading an urgent message about a missing women that “suffers” from Downs Syndrome…I think “suffers” is the WRONG word…Maddie does not “suffer” she is relatively healthy…very happy, curious, spunky…and do I say it -- SMART!! “suffers” is like the “r” word…I would like to have people just pause for one second and think…before they write, speak or input about something they no NOTHING about! Also while I am on my soap box…why is there not a “dislike” button for facebook…people keep on liking a offensive phrase and it has the “r” word in it in reference to tinfoil…and I DISLIKE this intensely…so I just hide the ignorant…I have to get a mammogram… nothing is wrong with me…just getting old! And my blood pressure is high…so lets say this has not been a great week…so they will recheck in 4 weeks after Maddie’s surgery and I have time to adjust…I said to the nurse I hope it gets better but when you have a child born with special needs…you wait for the next ball to drop…


Also they found the missing woman…

just scared...

My mind has been in a fog...it is like when I was pregnant with Maddie and we did not know fully her tef/ea diagnosis…when I was pregnant they knew she had something wrong…but could not know for sure till she was born if she had full aterisa or a fistula…if her tube was long enough to attach back to her stomach or not…so it is the waiting game again…not knowing if she is stricturing in esophagus, has built up scar tissue, a narrowing of the esophagus or just that she is picky and sensitive to textures…so I am worrying if she is getting enough food and drink…she is only eating 4 to 6 containers of # 2 gerber pureed foods and 8 ounces of whole milk…I KNOW!! not enough…she is cranky and tired…she is not herself…I am not myself…I hate when people say well think of the positive…at least she is not (fill in the blank!)…REALLY…this is my reality and I hate it…an that is ok! Last week someone said to me that I need to get over my phobia of seeing Maddie’s future…that they know many people that had to see what there future looked like…me not so much...I said to her...NO thanks that it makes me nervous! And it really does I told her I will stay in this moment...a content moment...of a different fear…a fear that my little girls esophagus is closing as I sit here…that she is in pain and I can do nothing about it…that this will be a yearly tune up of her going to the doctor and having this surgery…so looking into the future is a raw deal…happy thoughts???

learning n liking...

This week has been CraZY! with scheduling all Maddie’s appointments for her Swallow Study and her surgery if needed…August 25! it has been a tad bit stressful! Plus I have taken on watching a BABY! I am not sure what I was thinking…I thought it would be good for Maddie’s development…and me getting over my fears of “normal” babies…what I have learned is that he may be a full 1 year younger then Maddie --he is just a baby…I like him…but I really like how Maddie is Maddie…I like that she makes life interesting…I like that everyday is a BIG deal and she makes huge strides…I like her smile and laugh…and I like that she makes me learn more then I ever thought I would or could…I like that she makes me think about issues of my own ignorance...and I like that she has effected change in others that she has touched…my Maddie is a RoCKsTar…with a little extra!

Swallow PLEASE!!

Swallow study is what is on tap for the Maddie…everyone on Maddie’s team thinks it is the best thing…I am just worried it is a waste of time…I am not thinking she has a stricture…I think she does not pay attention and wants to play like any other 15 month old little girl…at birth she had her esophagus attached to her stomach and a fistula removed from her trachea…this is why they think she may have a narrowing of the esophagus, a structure or scar tissue…and why she is not able to have un-pureed foods…we will do the study in the next couple of weeks to determine the cause of her eating issues…so if it is not medical she will be referred to a feeding specialist to help us out…did I mention she still does not have teeth! And the doctor said she is not teething! Her heart appointment was great…her hole measured the same as last time…and since she is not symptomatic...no need to see the heart doctor for a year!! Yeah! Maddie has gained 4 inches in height she is now 30’ and weight 20 pounds! She is a BEAST!!! On our trip I was a little worried she had lost some of her gains…but her OT came today and all is well…just a little more therapy and we will be back on track!


On a side note…Doctors are so silly and annoying sometimes…when I mentioned that I spend 3 hours out of my day trying to feed Maddie…she said well if that is what it takes! REALLY!! I do have others to take care of and my sanity…not that Maddie is not cute but seriously! And when I mentioned I was trying to “normalize” her eating...she said to STOP! Funny everyone else tells me to not think of Maddie as being different to treat her the same as I did Max…I do that and I get the roll eyes look…love the doctor she just needs to have some kids to understand me!

Marvelous Maddie…

So Maddie continues to be amazing…she is drinking out of a straw cup! with no squeeze! hOLy CRaP!! I did not want to tell in fear she would stop…and she is still clapping and sitting up…and last but not least crying to get us to pick her up!! ImmEDiatEly…not in a minute…not in a -- I need to walk over there…NOW!!! we HAVE to pick her up and carry her every where we go…gone are the days of me doing anything alone…I am not complaining I have waited for this day! and it is here…my shadow has arrived and I LUV it!

fyi: BIG Doctors visits Monday -- Heart and Surgeon...hoping for no change :)