eat-choke-swallow...

Eating…it should be a fairly easy thing to accomplish...it should be something that comes natural…I have never seen the issues that I am seeing with Maddie…I have seen kids that wouldn’t eat because of texture, taste, smell, sight, defiance, and simply put they are just to busy to eat because they are so busy discovering the world…I get all of these issues...Maddie choked again and got a 2 cm piece foam lodged in her esophagus…I knew something was in there...but I was not sure what and I knew what I had been feeding her…pureed baby food STILL! In the past week Maddie has digressed her eating back to baby puree foods and will not eat everything she was eating last week…on Sunday Maddie began wheezing and coughing…and just seemed uncomfortable…so I mentioned something to Chad and he poo pooed me…and we went and picked plums…she was still acting funny and she went down for a 3 hour nap…I woke her up and tired to feed her and give her something to drink…NOTHING…she would get some food and drink in and then she would wheeze and cough…so I said to Chad should we go to the ER or what…he just put his pinky down her throat and up came the foam…since then…not eating…barely drinking...Chad thinks she irritated it…YOU THINK!! So today at breakfast it took an hour and half to get her to eat 3 small jars of baby food…and sum water and juice…at lunch a half of a small jar of pureed turkey…no Gerber Cheetoos she will not et them…no eggs…no nothing…frustration over the swallow study is that it helped nothing…just more medication that causes serious side effects…I know she has NO teeth to help chew...but we are working on chewing daily and she seems not to get the connection between chewing on a nuk or a rib and chewing on a baby ravioli or eggs…she is now coughing up everything…she ate ice cream for dinner last night…how long will this go on?

its fine...

Looking back at my ideals regarding parenting…is down right hilarious! I thought I knew everything…and thought it was not hard or tiring…for gosh sakes I did what my parents told me to do! Not really… but I have a short memory…and then I thought I had mastered parenting and then I had Maddie…I really thought I would never EVER let my child play in a indoor playground at the mall or McDonalds…I have and I do but I still try not to! Discipline in public…I have a 5 year old… enough said! Did I mention he is strong willed…I love the looks from newbie parents and older people that forget what a 5 year old is like…and they look at me like are you seriously going to let your child talk to you this way…and then they say…NEVER...yeah I was one of those people…and we will talk when your 5 year old does it to you! It is a stunning reaction that comes over me…when he yells or is disrespectful...first I have excuses and then I have the deer in the head light look…lately the “mommy look” has been working and the prompting before we go somewhere…but still parenting is hard enough without EVERYoNes opinion! I used to give my opinion on parenting to people…when I was new at it and when I did not have children…funny…I have stopped reading every parenting book…and I try to keep my parenting style to myself…unless solicited…parenting books are a waste of time…not one child is the same…not one child can be told what to do and when to do it…they are people with a brain let them have an opinion…this is the reason my son…is well difficult right now! but I realized that I was teaching him to comply…that is all good and well until he is 16 years old and a person wants him to engage in risky behavior…or when someone is trying to hurt him…”no” can be powerful…this is something I will foster in Maddie…the power of her opinion...even if I do not like that opinion…sleeping in a family bed was something I thought I would never do…but we did with Max…and it was great…then when Maddie came I slept with Maddie and Max slept with Chad...it was great and our kids are fine…and Max transitioned into sleeping on his own and Maddie sleeps on her own…they just wanted to and we listened…when I was pregnant with Max someone gave me a book on how to put your baby on a schedule…yeah this did not work for me…and Max put me on a schedule and Madde put me on a schedule … it worked out fine…the book should have highlighted routine…not schedule…but I am not the expert with a book deal…I really thought you could make a child eat…it turns out you cant…so currently I have Maddie not eating because she wants food she cannot chew or swallow…so I have to feed her with a mirror and she gets her own bowl and spoon…can you say HUGE mess…and Max only eats when you play the game “I bet you can’t eat that”…parenting is nothing of what I thought…but BETTER then I expected…

just Maddie...

Maddie hair needs a little help...

Maddie does RoCK her eXTRa Chromosome... (t-shirt)

Maddie's almost favorite past time...

my favorite thing is the bath...

my Health...

Normal…it is my favorite word and the one word I strive to be…granted it is only MY normal…not anyone else’s…so when I went to the doctors office and they said I had high blood pressure it pissed me off…me…NO not me…I am healthy and I do not want to take a pill for the rest of my life…it is to much of a commitment and I hate commitment…so anyway after a month of pouting…I went in for a second reading…sure enough it was high…then I was REALLY pissed…so I had to go see another doctor…no really another doctor…so I self medicated like anyone and ate a lot of M&M’s with pretzels in them…they were YUMMY! By the end of the BIG bag I no longer cared if I had high blood pressure and that I would do what it takes to be healthy for my babies…so I went to the next doctor…and NO high blood pressure…yep…NORMAL!! yes I am normal…seems I have a bit of anxiety when it comes to the doctor that told me my baby was not going to be born healthy…I knew I was a bit anxious and high strung…but had no idea that I was that traumatized by the diagnosis…as I was sitting with the general practitioner she said that everything looked great and that if I was having problems coping with Maddie’s diagnosis I should get therapy or even medication…I must have gave her a look…because she could see I was not open to this…not because I do not think I need it…I just cannot commit to a therapy session or a pill…

hungry?

Maddie is on a medication called Metroclopram  .which is a generic medication for Raglan… this medication is to help her esophagus contract and her stomach to empty…however, some of the side effects are worrisome…example confusion, abnormal thinking, fast irregular heart…muscle problems with the arms, legs, tongue, mouth puckering and chewing movements…then there is the suicidal thoughts, enlarged breasts, decreased energy, hallucinations, this one is my favorite increased risk of new or worsening mental or mood changes…then if we decide to take her of f the medication there is withdrawal symptoms including neuroleptic malignant syndrome…this seems like a promising drug to give my princess…I am sure every parent would like to partake in this drug…this is the drug I researched and asked 3 different doctors and 2 pharmacists there opinion…of course they all said the same thing the benefits out way the risk...I did however get Maddie’s surgeon/doctor to lower her dose of the medication…and I think it is working! My Maddie for the first time in her life is hungry…and wanting to eat and drink…this morning she ate BY HERSELF a frozen yogurt, eggs, cheerios, and baby ravioli’s…OOOH MYY! I cannot believe my little girl is growing up! She is climbing over everything and standing up to get into mischief! It is wonderful! At Yellowstone a man said to me how lucky I was to have a child that was not walking...I thought to myself you have no idea the party we are going to throw when Maddie takes her first steps…her millstones are everybody’s…and we will celebrate!

smiling feet...

Smiles…they are contagious and nice…it has been awhile since I have really smiled…this past weekend was a great time for me to just get to know Maddie better…there times I am not sure if I now her…sure I know what she likes to eat and her favorite tickle spots…but there is so much more to know…and kiddos are constantly changing…so sometimes it hard to get a good read on them…Maximus is very good at telling us what he wants, likes or does not like…and Maddie is good at smiling…and giving licks and kisses to tell us what she craves…she has begun raising her arms and saying OpaAAh…it is cute and it means she likes what ever it is you are doing…I think we all think our kids smiles are the BEsT and special just for us…Maddie is capable of smiling with her whole body…not just her mouth…but her eyes, shoulders, hands, legs and her feet…yes her feet smiles point straight up and back very flexed and they shake with excitement… I love that intensity…she also can smile with her bounce…she has this bounce she does when you are holding her and she moves up and down and with the best lick and shake of the head…she is filled with a smile…today I caught Maddie with a microphone that was singing high school musical…she was shaking her hair and getting down with the music…swaying back and forth and just loving it…when she saw me she giggled…and I smiled…

where's Max

Yeah! girls weekend…a weekend just for me and my Maddie…so far it has been wonderful…this morning we walked and help raise money for a great cause…got a huge Starbucks and just loved on one another…when she wakes up from nap we will go to the mall and enjoy some time shopping and browsing…we are going to pick out some new finger nail polish so Maddie can have her toes and nails done…Chad and Max are having a boys weekend hunting and fishing…I am hoping to make this a annual date for me and my girl! Funny thing about my Maddie is that she is yelling and searching for her brother! And she is baffled at where he could be…she schreechs out her maa maa maa with her hand and arm in the air waiting for him to come running to serve her! When she realizes he is not coming….She starts searching for him from room to room with no luck…then she sits at the front door waiting for playmate to come home...

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!