I am reminded again tonight of how God blesses our family. While being exhausted and feeding Violet I went on Facebook and caught up on a blog that so many of my local friends follow also. It ‘s about a little baby boy named Treyden who is fighting for his life. You see he has leukemia. Sickening really, cancer is sickening. Why must children, people for that matter have to go through so much hurt and pain with this…cancer.
I am remended of our blessings because many of you know the day to day sleeplessness we face with Violet. But I bet Treyden ‘ s parents would take sleepless nights if it meant they knew their son was healthy & happy and this thing called cancer was gone…out of their son’s body.
So tonight at 1 am I am reminded to be thankful for sleepless night. Thankful for the knowledge that while my baby has got her own issues…it’s not really that bad. My heart is breaking for this young couple. Tears stream down my face as I write this. I know how much it hurts me to see Violet in the hospital when she gets sick but seriously…nothing compares to what they are going through.
Please pray for this family. Pray for Treydens strength but pray for his parents. They need our love and support. I can’t imagine how they feel….my heart breaks for them.
I am reminded when I think something we are going through is bad…someone has something bigger going on than us & I become grateful for what I have…in this case sleepless nights. Sleepless night to knowing she is okay……..

Had a check up yesterday at Marshfield, the good – the bad – the ugly.

Good news: Violet does not have kidney stones anymore!  All of her labs had come back normal so they weren’t sure what kind of stones they would’ve been. Still not sure what the “white matter” was on the ultrasound, now thinking it might have been protiens.  I guess some little kiddos can have extra protien and that can show up like stones.  Either way, her kidney’s look good and we can be ultrasound free for 1 year for them & we got to be discharged from Nephrology!

We also met with a pediatrician at Marshfield since Violet will be having her G-tube placed over there with her history of seizures.  Our GI doctor would be fine with placing the tube but the recovery makes us all a little nervous so we will have to establish GI in MF to get the tube placed. We will see them at the end of April.  So for now we will use the NG tube!

Hospitalization :
Some of you may have heard that Violet was hospitalized. Last week she started eating less & less but we discovered on Wednesday she had RSV but her O2 level was good so we didn’t have to be hospitalized for that & Thursday we went back for a recheck and her right ear looked a little worse than it had the day before so we started her on antibiotics for that. Friday she ate alright but not great but her amount of wet diapers seemed ok. Then Saturday her feedings got worse. Even tried to get her to eat all her favorite foods. Still nothing, she slept a lot & only had 1 wet diaper all day. Needless to say I was getting anxious. We decided in the evening to bring her up to the ER to get fluids.
The dreaded IV: One of the NICU nurses that knew Violet came down to try to get an IV started. She tried a couple of spots but didn’t get anything. Then they called for the big guns…anesthesia. He came down & was able to gain access on the 2nd spot. PTL (Praise The Lord) But like always don’t get my hopes up when it homes to IVs. It was out by 2:55.
Vi got super fussy & I couldn’t get her to settle down so I asked the nurse to come & check the IV, as they started looking and checking out things they realized we had lost it. Vi finally settle down & fell asleep.
Mama bear: Like I said, she finally fell asleep. I know all too well that Vi is NOT a good sleeper, so if she finally fell asleep she was going to sleep. Then someone came in and just wanted to “see” if she could find an IV. I said no. Not right now you aren’t. Obviously I want her taken care of but I also know she was incredibly fussy & hasn’t slept. She’s a baby, she doesn’t understand.  Anesthesia came down to try around 5am, he brought out all the stops, ultrasound, fancy little light.  Tried twice…nothing.  I knew from the night before that putting an NG (Nasal Gastric tube) was an option.  As much as I didn’t want that, I was pushing for that over the torture of the IV.  I know nurses are so used to IVs but Violet does not do well.  Say we would’ve gotten another one, what are the chances it would have lasted?  Slim, that’s the truth.  So all day Sunday we tried to feed her orally.  By bottle & syringe.  She still didn’t want much to do with it. Finally Dr Healy came back and did afternoon rounds on Violet and said it was time for the NG.

Monday: today was a pretty good day.  Violet had nice awake periods.  She really played for a while was “talking” and rolling from side to side & her eye contact was way better than it had been he previous 2 days.  Her color was better today also.  That was nice to see.  Tonight when the doctor came in for evening rounds I asked if we could start to “feed” her.  They had been doing continuous feeds throughout the day.  Vi was never getting hungry.  We also were informed that basically Violet needs 23 ounces of fluid a day for her “routine fluids” HA!  She will never orally consume that.  This is going to be a problem!  I need to figure out how we get around that amount.  Violet has never drank anywhere near what the doctors have wanted her to and she has done well until now.  She has not listened at all when it has come to calorie intake either so we gotta come up with a “Violet” plan, not the book plan here.  We’ll tackle that tomorrow.  Jake stayed with her tonight & I will head back up in the morning.  She is also on a little bit of oxygen because when she is sleeping she will drop a little bit. Again not something I am really worried about.  We did check her urine tonight and that seems to be doing really well, the UA came back okay.  When they took the xray to check her NG tube they noticed a spot on her lung and along with the RSV they have said she has pneumonia.  So we will see how long this will take before we get home.  I am just playing it one day at a time.  Each day gets better and if I wasn’t at the hospital with her the doctors would not be able to see the improvements.  I am not even sure I would be able to if it was for the short amount of time that Jake is there after work.  Today she was fussy and sleepy.

So as the week went by we realized the importance of Violet’s calorie needs as well as the amount of fluids.  We are still skeptical that she will really consume that much plus enourage solids anytime soon but we need to try.  So where are we at today with Violet?  We have opted to out a G-tube in (it’s a tube that will go into her belly and it will help her drink when she doesn’t want to & it will allow us to increase her calorie / fluid intake. Some other bonuses to the G-tube are we can get her meds in her even when she doesn’t want to take them.  Her need for an IV will lessen because we can use the G-tube as a means for fluids if needed.  So all in all, it is a good thing.

I got the chance to talk to a mom of a little girl who has a G-tube while we were admitted and it made things a little less scary.  The mom showed me her daughters tube and the supplies to go with it.  I think she will be a great resource as time goes on.

Many of you know about the verse that came to me many times while I was pregnant with Violet, Jeremiah 29:11-13, it states: ¹¹ For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. ¹² Then you will call on me and come and pray to me, and I will listen to you. ¹³ You will seek me and find me when you seek me with all your heart.”

To this day, I hold onto this verse.  No matter what life throws at me…I know God has a plan, His almighty hand is holding onto me and will guide me / us through it all.

The other thing that I noticed on a regular basis after Violet was born and I made the daily trip to the NICU to be with her was a song…

These are the lyrics

Water you turned into wine, opened the eyes of the blind there’s no one like you, none like You! Into the darkness you shine out of the ashes we rise there’s no one like you none like You! Our God is greater, our God is stronger, God you are higher than any other. Our God is Healer, Awesome in Power, Our God! Our God!
Into the darkness you shine out of the ashes we rise there’s no one like you, none like You! Our God is greater, our God is stronger, God you are higher than any other. Our God is Healer, Awesome in Power, Our God! Our God! Our God is greater, our God is stronger, God you are higher than any other. Our God is Healer, Awesome in Power, Our God! Our God!
And if our God is for us, then who could ever stop us. And if our God is with us, then what could stand against. And if our God is for us, then who could ever stop us. And if our God is with us, then what could stand against. What could stand against.
Our God is greater, our God is stronger, God you are higher than any other. Our God is Healer, Awesome in Power, Our God! Our God! Our God is greater, our God is stronger, God you are higher than any other. Our God is Healer, Awesome in Power, Our God! Our God! And if our God is for us, then who could ever stop us. And if our God is with us, then what could stand against. And if our God is for us, then who could ever stop us. And if our God is with us, then what could stand against. Then what could stand against.
Our God is greater, our God is stronger, God you are higher than any other. Our God is Healer, Awesome in Power, Our God! Our God! Our God is greater, our God is stronger, God you are higher than any other. Our God is Healer, Awesome in Power, Our God! Our God!

Our God, by Chris Tomlin.

This song has come to be at least 2 times a week since Violet has been born (& that’s not counting when I play it on my iPod) The chorus is so powerful…Our God is greater, our God is Stronger, God you are higher than any other, Our God is Healer, Awesome in Power, our God!  Our God!

No matter what we face on this journey we’re on…any of us, not just my family but all of us…God is bigger than any / all of it.

Now I’m not saying our road has been easy and there aren’t days when I wish my 1 year old was doing “normal” things, but she is the beautiful baby that God entrusted in us. She is my beautiful, smiley, giggly baby and I love her just as much as Grace!  Even with all the sleepless nights and worrying about this or that…I wouldn’t change this last year…how could I?  God has the plan…He entrusted us in this plan and we just need to keep Him in the drivers seat and everything will be okay.

And I am not saying there aren’t days that I just turn away from everyone and cry because I don’t know what else to do, but I know that my God is there.  Putting his arms around me and telling me it’s going to be okay, trust me, ” come to me with your anxiety, my child” God is good!  That’s what I hold onto from this past year.  We have amazing caretakers in our lives.  Amazing friends and family and strangers for that matter.  We really couldn’t ask for more.  I have been overwhelmed by the love of people in this past year and I am grateful everyday for everyone.

No one dreams about having a child with special needs, we are just blessed by them.  Whether you have a child with special needs, are acquaintances with one, or know one personally…you are blessed.  We get so excited when Violet does something new, just like we did with Grace.  I can’t get wrapped up with timeline’s and what she “should” be doing….we’ve come a long way since January 3, 2012 and that is what hold onto, why wouldn’t I? Why shouldn’t I?  It’s what I’ve been entrusted with.

So many times I make and entry in my head and it never makes it to the sites. 

Where do I begin? Our family is growing up!  I can’t believe that Violet is going to be 1 next week.  It amazes me!  It feels like just yesterday we had Jake’s sister Hannah at the house & we were heading to Wausau for the induction.  Now she is going to be 1!!!  She is such a little honey. 

And Grace…Grace is potty trained, in a big girl bed & on her way to 3 years old.  Where has all this time gone?

Violet update: This months appointments: They went pretty good.  We saw Neurology, Physical Medicine, Urology, had UltraSound, labs and then Nephrology was added to our schedule.  The Ultrasound showed some calcification which means that she is developing kidney stones in her right kidney.  We did a bunch of lab tests that all came back normal so we will do a repeat US in March to see how the stones / kidney looks.  Other than that her appointments went really well. We will trial her off of her antibiotics again to see if she continues to get frequent UTIs or if maybe she has outgrown them a little. 

She recently got over another ear infection and UTI so she was on double antibiotics for that and having constant bowel movements so since we are transitioning her little body isn’t going to the bathroom now.  So we are back to more generlac & suppositories. We are also going to trial her on Zantac

Well, since I started this entry.  We have started the trial of the Zantac and probably will stop it until we get her bowels under control.  Or should I really say, working again.  The poor girl has always been on antibiotics and she is not on any right now so currently she isn’t going #2…makes for one crabby little girl! 

So what is going on with sweet Violet?  Not much…not much at all…including…NOT POOPING! Ugh!  If it’s not one thing to worry about, it’s another…UTIs, ear infection, poop…Now I am NOT complaining, because really what does that solve? Just trying to figure out the right combination of stuff to get her body going. 

Happy Birthday to our little girl — Violet turns 1 today! Can you believe it? We sure can’t! Feel free to share something about Violet on her VV page today!

Well!  Where do I begin?

I was reading a few friends blogs recently and had to laugh.  It’s no surprise but we all write stuff and think…”oh I over shared” or “who will read this nonsense” but the truth is…so often we need each others crazy stories and honesty.  Whether you have a child with special needs or not…EVERYONE goes through a little crazy every week.  Some might just go through more crazy than others but we all go through crazy!

Lately our crazy hasn’t been so bad.  Vi has been relatively healthy.  Some minor things (ear infections) but luckily those we have been able to figure out & she responds well to the antibiotics.

She is growing like a weed!  Our recent nurse visit she was 18 pounds & is in 6 month tops (still 3 mo bottoms) but any growth is SO exciting! 

At last weeks appointments she graduated out of her helmet (sort of by default, not because her head is round) because her head has not grown & typically a child’s head stops growing around 11 mo of age.  We aren’t really too sure what this means for this peanut but she is happy about it.  She was always trying to get herself out of it anyway!  She no longer will need to “Houdini” out of her helmet…now she’s on to the arm brace!  Yesterday she apparently worked her arm brace off, but we haven’t found the right straps.  The soft cushion straps fall apart easily.  The Velcro is nice but that looks like it digs into her arm & the Coban seems to come off easily.  So we are back to the drawing board!

Last week we also saw a new GI doctor to discuss GI issues & nutrition needs as we approach a year and where we go with Violet’s foods.  One nutritionist said to keep her on breast milk until cold & flu season was over & now Dr Brown thinks it’s okay to transition to whole milk just like a normal kid.  We’ll probably do a combination of both.  He didn’t seem opposed to keeping her on longer.

But the major thing for last week of ENT, we were looking at possible ear tubes for the ear infections.  I was so relieved and at ease with Dr Stone at the MFC.  She was really nice.  She reminds me of our other fabulous doctors over there.  (Now don’t get me wrong, I haven’t LOVED everyone we’ve seen, but she reminds me of the good ones!) She said she is not in a hurry to put tubes in her ears given her post operative history of seizures and the fact that tubes aren’t a guarantee that they infections will go away.  So we will wait and see.  See if they get closer together, if she quits responding to antibiotics and if her hearing seems to be affected by the infections.

She has started to develop such a personality.

So that is the simple update on Princess Violet.

I really don’t have too much to report so if you visit this site and there hasn’t been a post lately it isn’t necessarily a bad thing.  Life has been pretty quite.  Which I think we all enjoy.  No major doctor visits and like I tell everyone we have been hospital free since May!  YEA!

Violet is GROWING LIKE A WEED!  She is getting so big and a little too smart for her own good!  Although she loves her hearing aids she discovered that she could take them out and did it twice yesterday at daycare.  Funny little girl!  She also can get her helmet off and I am pretty sure she enjoys this!  Still laughing when she does it.  She has started to sit up if propped appropriately, head control is getting better.

I can’t believe she is already 10 1/2 months old.  I am not sure where this time has gone!!!  I love that she still loves to snuggle with her mama and she smiles with her eyes.

The other night I had given her a bath and I had her on the counter drying her off and I started blowing raspberries on her feet. It was too funny, I had her laughing for a good 10 minutes, belly laughs.  Oh!  It was way too cute!  It’s those moments that I absolutely treasure!!!

Hi everyone, what I am posting today was certainly not written by me & I am not sure if the father who shared it wrote it or shared it second hand, but he is credited on the bottom.

I am part of a email group of people who all have one thing is common, a loved one with the Agenesis of the Corpus Calloseum. This was something that was shared:

...... Have you ever wondered how God chooses moms for the special children?
Somehow, I visualize God walking on earth, selecting
His instruments for the preservation of the human species with great care
and deliberation. As He observes, He tells His angels to
take notes on a giant flipchart.
 
"Elizabeth Souza, will have a boy, the mother's patron saint, St. Matthew.
Mariana Ribeiro, girl, mother's patron saint, St. Cecilia. Claudia
Antunes, this will have twins, patron saint ... send St. Gerard to protect
her.
He is accustomed to quantity. "
 
Finally, God passes a name to an angel, smiles and says: "For this one,
send a deaf child. "
 
The angel is curious, and asks: "Why her, Lord?
She's so happy. "
 
"Exactly," replied God, smiling. "Could I send a special child
to a mother who does not know laughter? That would be cruel. "
 
"But will she have enough patience?", asks the angel.
 
"I do not want her to have too much patience, or she will drown
in a sea of despair and self-pity. When the initial shock and sadness
passes, she'll handle it. I watched her today.
She has a knowledge of herself and a sense of independence that are
rare and, at the same time, so necessary for a mother. See, the child
I'm going to give her has his own world. She has to bring this
child to the real world and it will not be easy. "
 
"But Lord, I do not think she even believes in God."
 
God smiles, "That does not matter, I can fix that. This one is perfect. She
has
the exact dose of selfishness that will be needed. "
 
The angel gasps. "Selfishness? Is this a virtue?"
 
God nods. "If she is not able to separate herself from
the child occasionally, she will not survive. Yes, here is the
woman whom I will bless with a child less "perfect" than the
others. She still does not realize it, but she is to be envied.
 
She will never consider banal any word uttered by her son.
Any simple babbling from her child, she will receive as
a great gift. No child's achievement will be seen by her as a
commonplace. When the child says "Mommy" for the first time, this
woman will be a witness to a miracle, and she will recognize it. When she
shows a tree, a sunset or a sunshine to her child and tries to teach him to
repeat the words "tree" and "sun", she will be able to see my
creations in a way that few people are able to see them.
 
I will permit her to clearly see the things I see -
Ignorance, cruelty, prejudice - and I´ll make her stronger than all that.
She will never be alone.
I'll be here by her side. "
 
"And what will be the patron saint of this mother?" asks the angel, pen in
hand. God smiles again "None. She will just have to look at herself in a
mirror" .....
shared by: 
Rodrigo de Paula, father of Cecilia, the prettiest girl in the world.

Violet has started to roll!  She has been getting onto her left side and now she has started going toward the right.  I guess today @ daycare she made it all the way to the right & onto her belly….I love it!  Violet has really started to find her voice over the last few weeks.  It can be really exciting, when it’s not 3 or 4 in the morning!  Ha!  Neck control is getting better.  She’s been eating solids for a while.  She does have her favorites and others she could definately do without, but we force them in her anyway! We have noticed a litttle bit of roundness to the back of Vi’s head since she started wearing the helmet, so that’s good.  We aren’t using it like they told us to, she wears it all day but some nights she won’t settle down with it on & I take it off.  People gotta sleep!

There really isn’t a lot to report.  Which is actually nice.

For those of you that follow the Caring Bridge site there may be some duplicate entries as I have copied & pasted the last 2 from there onto here.  I am trying to make sure everyone who follows the sites get all my “random” thoughts 🙂