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 :)

Funky...

I remember when my innocence was stolen…I used to be a half full girl…I remember when I would say if you did the right thing…the right thing would be done to you…that changed when I had Maddie…not that Maddie is a “bad thing” she is perfect…well now I think she is perfect…but I did not think that when I was carrying her or when I delivered her...it is recent that when I look at her I melt…it is recent that I look at her and smile…the day the doctor said “Down Syndrome” my world crashed…I questioned everything…my belief system, my self worth, humanity in general…when I see a funky person walking down the street…and that person scares me or invokes some emotion...I think you will not love my daughter because she was born with Down Syndrome…but some one will love and spawn with the person that made me cringe… Yes I have become less judgmental of people in general…but my “prom queen” attitude will rise up and I will think…how is this…my Maddie is cute, smart, funny and has a great giggle…but people will not get to know her because she invokes fear in them…just like the funky person does in me…I get that this is hypocritical…but I often wonder is there people with Down Syndrome that marry outside there “race” or are they looked down at if they do…and am I over thinking this subject…I am thinking... probably YES!!!

perfect chat...

Humanity has been restored! We went to the castle park today…it is a great park and me and Maddie played on the swings and then found shade…a women approached us and said…”beautiful little girl…mine is 25 years old, lives on her own and works at the senior center”…it took me back a minute…finally I got what she was saying…I talked with her for over an hour…asking questions…listening to her and getting good advice…she told me even at 25 years old she is her daughters biggest advocate…she also said that her daughters social calendar is so busy it is hard to schedule ice cream together…I really needed this chat today…and I needed to be free and feel confident in questions I had for her…questions that I cannot ask a doctor and do not want to…and you cannot read about in a parenting book…because I have not found it! I wanted to know how she handle birth control for her daughter…How she handle pelvic exams…How she handled her daughters menstruation…she answered these questions with confidence and true experience…she told me about her up and down journey of raising a child born with Down Syndrome…about how they have handle her slight dementia…and how her daughter handles her BOYFRIEND!!! How she survived it when her daughter got caught making out with a boy also born with Down Syndrome that is a real ricco suave! She also expressed to me that she has learned more from her daughter then her daughter has learned from her…she told me to celebrate Maddie’s milestones because they are HUGE! And they may come slow but they will come! Her daughters name is Tess…I cannot wait to meet her!

ignorence--not blissful

Really! I go to the mall for the first time in 6 months and this is the conversation…

s: you got another kid?

ME: yes, Maddox we call her Maddie

s: how old?

ME: 14 months

s: SHE IS CHUNKY

ME: she is healthy

s: she has glasses

ME: yes

s: why would you do that?

ME: because she needs them

s: yeah! but why? Why would you take her to get them?

ME: Because she was born with Down Syndrome and sometimes kiddos have trouble with vision.

s: GASP! Grab pregnant belly n turn away from us…Can you catch that…how did she get it?

ME: she did not get it! She was born with an extra chromosome…

s: but she does not look it….she not all……you know

ME: no I don’t know! It happened when sperm met egg

s: really! I just do not want to get it!

ME: I gotta go…it was nice seeing you!

Can’t fix stupid…just cant do it!