Marshfield

Well minus Violet screaming just about the whole day our appointments went very well.

I am not really sure what Dr. Dietz had to say since Vi was seriously screaming at the top of her lungs, not even sure how we got a good judge on her ticker since she kept growling and holding her breath.  But I trust her and we don’t have to go back to Cardio for a while.

Dr Meilahn will be having Violet fitted for leg braces and we are looking into those strollers still since Vi is getting too big for her infant carrier.  Not sure if we will get a “wheelchair” or just a better more fitted stroller.  As I predicted OT got added on for the arm brace.  We’ll see what Patty can come up with.

EEG looked good and Dr. Campbell actually got us in 2.5 hours early so that was exciting.  We are going to look into some different sleeping positioners for her because she is really starting to outgrow that Rock & Play.  We’ll continue to leave her Seizure meds where they are at for now & when she is 3 start looking at tapering them down, slowly.

Dr Jaglan wants to see her back when she is 2 and look at possibly doing surgery to release the bicep muscle on her right arm since she is so strong / tight.  Talked about potentially having to travel to see a special hand / arm deformity doctor.  He said he knows of a few in the states but they are not local.  We’ll see what kind of insurance hoops we’ll have to go through for that.

Dr Thomalla and I agreed that with the increase in fluids we are going to try to take her off her antibiotics for her UTI’s.  We’ll check a urine on her in a couple weeks and see if anything happens and do a repeat US in 3 months.

WOW!  For the long day we had & that is all the report I have for you….what a shame.

Violet & I are both super glad to be back home.  She hasn’t complained once since she has been rolling around on the floor.  I even caught her pushing herself up with her left arm!  Way to go!!!

 

Other news:  DON’T FORGET ABOUT THE AMAZING BENEFIT SOME OUTSTANDING MOMS HAVE PUT TOGETHER — IT’S THIS SUNDAY – – JUNE 30TH, AT THE MERRYLAND BALLROOM IN ROSHOLT.  KIDS GAMES, PRIZES, FOOD, LIVE MUSIC, RAFFLES, SILENT AUCTION JUST TO NAME A FEW OF THE WONDERFUL THINGS THESE LADIES HAVE PLANNED!!!

 

Then the following weekend IS AN AMAZING DAY OF GOLF, RAFFLES, SILENT AUCTION AND AMAZING FOOD!  BEAUTIFULLY DECORATED DINING ARRANGMENTS!  PUTTING CONTEST, AMAZING HOLE IN ONE OPPORTUNITIES —   A MUST BE AT EVENT!  NOT A GOLFER???  THAT’S OKAY!  JOIN US FOR DINNER & RAFFLES!

 

CAN’T MAKE EITHER EVENT BUT FEEL LEAD TO SUPPORT  VIOLET IN SOME WAY?  SEE THE NEW DONATIONS PAGE FOR MONETARY GIFTS

 

Thanks for your support…this is a journey none of us ever intend  but I can speak for my family and even through the bad times —we wouldn’t ever change our precious gift!

 

lots of love,

Natasha

This entry was posted on June 26, 2013. 1 Comment

  Upcoming events: Violet Thompson

These events are only 2 and 3 weeks away.
if you haven’t ordered your VioletsVoice shirt yet there is still time! Contact me today to get yours in time for the event! natnikmak22@hotmail.com

If God is for us, who can be against us?

So my heart is heavy this morning as it is Father’s Day.  I think of a recent family who lost their little son to cancer.  I think of my own father who lost his son at a young age.  I think of those father’s who have lost the children they never got to know to a miscarriage.  I think of the father’s who have lost their wives and now are single parents. ( I clearly shouldn’t have done my makeup yet because tears keep streaming from my eyes 🙂 )

Jake & I are blessed to never experience loss of a child.  I have only had 2 healthy pregnancy which resulted in 2 beautiful girls.  I do however hear people during a tragic time and ask, “why would God do this” but my belief is that He wouldn’t.  The God I know is a God of love. I am reminded again of Jeremiah 29:11 “For I know the plans I have for you, declares the Lord, plans to prosper and not harm you, plans to give you a hope for the future”  He does not intend to harm us…but yet tragedy still happens

I like to stay up if Violet sleeps good and it’s pretty close to a normal wake up time. My favorite time of the day is when the sun is just starting to rise and everyone is still sleeping.  It’s usually the only time that I get to have any sort f quiet time because once everyone wakes up…the chaos begins.  Even when annoyed I do secretly love the chaos 🙂  It’s my family.  This morning I was doing my quiet time and I was reading Romans 8.

The section of this chapter that prompted my extended thoughts start with vs 31, it says ” What shall we say about such wonderful thins as these? If God is for us, who can ever be against us? 32 Since he did not spare even his own Son but gave him up for us all, won’t he also give us everything else? 33 Who dares accuse us whom God has chosen for his own? no one– for God himself has given us right standing within himself.  34 Who then ill condemn us? No one –for Christ Jesus died for us and was raised to life for us, and he is sitting in the place of honor at God’s right hand, pleading for us.35 Can anything ever separate us from Christ’s love? Does it mean he no longer loves us if we have trouble or calamity, or are persecuted, or hungry or destitute, or in danger, or threatened with death? 36 (As the Scriptures say, “For your sake we are killed every day; we are being slaughtered like sheep.”) 37 No, despite all these things, overwhelming victory is ours through Christ, who loved us.  38 And I am convinced that nothing can ever separate us from God’s love.  neither death nor life, neither angels nor demons, neither our fears for today nor our worries about tomorrow — not even the powers of health can separate us fro God’s love.  39 no power in the sky above or in the earth below — indeed, nothing in all creation will ever be able to separate us from the love of God that is reveled in Christ Jesus our Lord.”

Phew, what does all that mean?!?  I am not a bible scholar but to me…it’s proof…God loves us, he has our best interest in mind.  Although tragedy strike, death happens…hearts ache for the loss of loved ones.  But no matter what…God is there.  He is a God of love and no matter how disappointed we may get He is always there, waiting with open arms to embrace us in our times of need and sadness.  No matter how mad we get, no matter what….He is there.

So why this message today?  I am not too sure, honestly…I know so many with broken hearts (or probably have broken hearts today I should say because I don’t know where everyone’s hearts are at) But it’s just a message of hope I guess…..

This entry was posted on June 16, 2013. 1 Comment

“poor little thing”

I know that this is a long journey we are on and we will come across many people who will say really dumb things so this will be one of those rants.

I ran into this lady the other day who on a daily basis I make small talk with.  She’s never asked about Violet or really even said anything more to me than Good morning.  She made a comment that instantly made me think…why…her comment: “poor little thing” The question in my head was “why”, why poor Violet?  I let the comment go because she doesn’t know Violet.  Those of us that do don’t see the “disability”. What we see is a thriving, beautiful, funny, smiley, happy baby who proves that she can do something amazing every day! 

I know that this lady didn’t mean anything bad by her comment, someone very near and dear to my heart has also made comments about how “sad” it is…my question still remains…what’s sad…I understand she is not our atypical child & sometimes yes I get frustrated…I’m tired, crabby, I just want her to go to sleep and she is fussy…but then it’s mornings like today where she wakes up and is talking softly at me and I feed her and she is done and tells me she wants to go to sleep I wrap her up and she almost falls asleep right away and I can’t keep from smiling. 

So I have to wonder, what makes this beautiful little girl misfortunate.  I saw something on Facebook this evening from someone who has only run into Violet once or twice and she wrote the sweetest thing…” I have had the opportunity to meet Miss Violet.  She is just a bundle of joy and smiles.”  thanks Anne K.  This is what I am talking about…seriously?!?!  Poor little thing!  No way!

Please don’t for one second think that my darling daughter is misfortunate.  While we have challenges atypical children don’t  I wouldn’t change most things we deal or have dealt with.  Do I really enjoying cleaning up multiple poop filled outfits?  Absolutely not, but she will look up at me and smile or giggle or roll around the room or rub her right thumb along her cheek and giggle or smile…seriously the list of joyful moments continue….why “poor little thing”  There is no reason…she is blessed….we are blessed…

This entry was posted on June 15, 2013. 1 Comment

  Upcoming events: Violet Thompson

Keeping everyone up to date on the 2 major events coming up for Violet…Mark your calenders! You don’t want to miss these events! Amazing basket raffle & silent auction, not to mention amazing bands which include Windsor Drive for the Stevens Point Benefit.
And a wonderful day of Golf & an AMAZING dinner in Beloit — last year had amazing baskets & silent auction!
You aren’t going to want to miss either event!
New this year — VioletsVoice t-shirts and new wristbands! Contact me today to get yours!!!

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This entry was posted on June 9, 2013. 1 Comment

poop

Disclaimer: This entry is not for the weak stomach folks….

So I was just thinking about writing an entry but thought I should check on Violet first since Grace and I were in the back yard.  The minute I walked in the living room I knew I was in for a treat.

You see, I know poop smells, but anyone who has had to deal with my daughter’s poop knows…it has a distinctive smell…definitely what you would call….odiferous.  The colors change the like the seasons…Since I had given her chocolate Pediasure yesterday…we have black poop today.  One would normally worry about this but since we have been on this pooping journey…you learn…brown food = brown / black poop.  Now consistency – they tell us she is supposed to have 8 oz of water with her miralax.  She couldn’t consume 8 ounces if she wanted to all in 1 feeding…I have gotten her up 5 1/2 ounces…and all that means is the more water…the more liquid it will be…Doctors have often asked why we give her so much Miralax if she continues to have such liquid BMs…well, anytime we decrease the amount of miralax she won’t poop, her belly gets big & full and she gets really irritable…so here we are diarrhea and all.

We have a fiend who goes through pooping things too & her blog makes me laugh because she has had a post about poop too.  But seriously…my life is consumed by it.  Even if it happens at daycare and not at home Who do you think rinses out the clothes?!?!?!?!  Some days I get so tired of rinsing out poopy clothes I just want to throw them away!  I have cut off more clothes on Violet than I did Grace because I just don’t care some days…just get rid of the onesie…really…I remember Grace getting it brand new from the store.  It has gotten it’s use…really.  Ugh, the poop!  I yearn for the day that poop is not how I spend my evening.  I probably should take stock in OxyClean because it has been a clothes saver for me.  A week of soaking and the poop stains disappear!  Our water bill probably wouldn’t be so enormous if it wasn’t for all the extra laundry we have to do for all of her poop filled clothes.

So how is she doing otherwise???  She still seems to be doing okay.  A little bit of grinding her teeth earlier but I think she was tired & hungry…wondering if this will be a new way of telling us things.  Not sure that is what I want but at least she is trying to communicate.  I did say I wanted her to be able to communicate.  I should be more specific next time 🙂

This entry was posted on June 9, 2013. 3 Comments

Violet’s Bleeding

Went for another opinion with the original ENT doctor we saw (we only switched because Aspirus doesn’t have a Pediatric Intensive Care Unit –wanted to have this close by incase Violet started having seizures again post op) Dr Weddle did a great job explaining why / what was going on with Violet and how to treat the bleeding.  I don’t necessarily think she had any different ideas but did a WAY better job explaining things to me.  She also cleaned the dried blood out of her ear.  That was exactly what we needed.

 

Violet seems to be doing fine today.  We will keep her left hearing aid out a little bit longer to see if that helps with the bleeding. And on a different note some people may have saw that Violet had been grinding her teeth…that hasn’t happened either since her ear got cleaned out…coincidence?  I am thinking they might be related!

 

Currently she is in the other room…”ayayayagagagagayayaya”  She is hooked up to her tube feeding and looking outside.  I think she really wants to snuggle and go to sleep but she has to wait until my lunch is out of the oven!

So all and all….I think she is doing much better!

 

Special thanks to Nicole Klatt our audiologist for helping me stay on top of this until we got better answers!

update

So some of you know about a few strange things that have happened to Violet this week. 

Over the weekend she was sneezing and blood was coming out of both nostrils and then Sunday Jake noticed her hearing aid was full of dried blood.  We brought her to the walk in and they said to follow up with ENT this week.  Things got better so we didn’t worry about it.  We wondered if she didn’t have a sinus infection so we decided to put her on Amoxicillin.  This antibiotic is known to mess with her little belly so it wasn’t until this morning that I decided we should proceed and start to give her the antibiotics. 

This week she was doing pretty good.  We hadn’t really noticed to much from her nose or ear, until this morning.  She had a mild amount of blood come from both ear & nose again.

Poor Violet is the one who suffers.  This evening she was super fussy, tired, but couldn’t settle down.  I stripped her to change her diaper and she seemed to be a little better.  He feet were super hot & red.  Violet never has warm hands or feet.  They are usually a light purple / blue / grey shade.  Plus I thought they looked a little puffy.

We still have no answers as to what the cause was of  the bleeding is. 

The only good thing about the trip to MFC today was the fact that I had enough time and stopped in Optical and got her glasses ordered.

Please pray for Violet.  I am not sure what is going on with her.  Minus the bleeding she is super fussy.  Pray that she will be able to rest and Jake and I can get some sleep.

This entry was posted on June 6, 2013. 3 Comments