Defeated & frusterated — warming: major venting — i apologize already…i just need this today

So we have been battling a few things with Violet lately.  While she has had a few nights where she has slept all night long I almost feel like this is a curse.  She is not feeling well.  The girls have a cold.  Mine is better, Grace is a little better now it has hit Violet.   I fear the only reason she is sleeping is because she is not feeling well and it’s her bodies way of trying to feel better.  The other more prolonged thing that we have been battling is her ears.  We have been watching her left ear for a while, the tube had moved and it seemed like she was constantly pushing at that hearing aid — now right ear is plugged and the ear tube is falling out.

Tomorrow we will see ENT and probably get the tubes taken out the rest of the way so they stop bugging her.  Then we need to discuss where we go from hear.  I did discover that there is another kind of tube they can put in – this one is supposed to last a little longer.  I knew when we got the tubes there was 1) No guarantee they would work at all 2) They may not last long  -they could fall out at any time.  I know I should just be grateful for how long they lasted and the fact that we haven’t had to deal with any ear infections while we have had them but we are heading into cold & flu season without ear tubes on a child is historically had a ton of infections.

I feel defeated, frustrated & sort of tired of doctors…I know…NO time to get tired of doctors but seriously!  I don’t see this being a good time for ear tubes to not work!  Why is it every time something starts to go right for baby Violet…something else happens?

I just continue to cling onto my verse…He has a plan…a plan greater than all this…but sometimes I just get so annoyed!

I am so tired of people who really don’t have a clue as to what I go through on a daily basis trying to pretend like they care or understand…YOU DON”T HAVE A CLUE!  (Disclaimer: not saying everyone who I encounter I feel this way about – but there are some people I just want to punch in the face – yes…anger stage of grieving) Because right now… I HATE HOLLAND!  My little mystery baby who no one has the answers for anything.  I don’t have the answers.  There was nothing I could do today to console her and those are the days that I hate the most. 

If my day with Violet wasn’t enough then something happened with Grace and she was disappointed with a situation and that breaks my heart too.  It was nothing we could control but still hurts. 

But tomorrow is another day and we will go to bed and wake up when we do and start all over, because that is what we do.  We don’t hold onto the disappointment or frustration…just get up, pick our heads up and move forward.  There is no really reason to hold on to what we can’t control.

far too long

love these girlssleeping beauty

It’s been far too long since I have updated on Violet.  Recently we got over another UTI, an ear infection (yes, I said ear infection)  One of her tubes has moved and our audiologist noticed and we discovered why we thought the antibiotic wasn’t working for her UTI – it actually had nothing to do with  the antibiotics not working for her UTI but instead that she was on the wrong antibiotics for her ears. Once we got the right antibiotics she was doing much better.

We have started her on cranberry and put her back on her probiotics to hope that someday we can get things back in order with her system and not be on long term antibiotics. 

Her leg braces came in! We got these to help straighten her legs.  She also will be getting a piece of equipment called a stander and this will strengthen her legs in hopes to help her walk someday.  She has been loving playing in the jumparoo.  It’s o much fun watching her in it!

She has started outpatient therapy so everything Thursday we go for speech and physical therapy.  We still have Occupational therapy through a program called Birth to 3.  We love our OT, Deb, but just needed more time and focus for the other therapies.

Violet continues to grow like a weed.  She is in 18 month onsies and 12 month pants!  I can’t believe it!  Love it!!!  She is getting so heavy to carry and I can not wait for her kidcart to come in so I can stop having to carry her everywhere!

Thank you to everyone who loves and supports our family!  We are so blessed to be surrounded by wonderful people, who support & encourage us.  Look after & love our children.  Thank you….

Seriously?!?!

Seriously! poor Violet has another UTI. Poor kid is on antibiotics to prevent these things and she continues to get them. Once we treat this one we are really going to decide where we are going to go from here. I really don’t know what to do anymore. We have a few friends that have mentioned some different “alternate” medicines but I am nervous about them. No real regulation, no real information about dosage / interactions. It makes me nervous to give them to my “special needs” child. what is a parent to do. I am so tired of her being on antibiotics and her gut issues with that but what are we supposed to do…try to convince a doctor to try alternate medicine, get in on her care plan and hope we can get reimbursed for the non covered meds at the end of the year.

Poor baby, her bottom / back / belly hurt from the UTIs but then her new ear molds don’t fit right either…luckily for us we have an amazing Audiologist who always fights to get molds that fit. We aren’t really sure how they can make them right sometimes and they fit great and others…they don’t. how is it so difficult?!?

On other news…Vi is developing really well! She got a really good report card and I think she even surprised some of the therapist! We are going to start more intensive physical / speech therapy through Aspirus. I am kind of excited about this since she is doing so well, I wonder how she will do if we expect more from her.

On the home front. We will be officially moved into the new house by Friday. Grace is really excited about her room and we have been blessed to have people help get everything ready from curtain making, painting, carpet installer coming a day early all the little details that fell together.

I am excited for Vi to have her own room too since I think she might sleep better. Still concerned if too much room is not going to be a good thing but we will see!

horray!

So it dawned on me that I never gave an update here as to how Violets procedure went. She did fabulous! She has a bit more drainage than shedid with the other tube but I called the doctors office about it they seemed to think it was normal. Her biopsies came back normal so that is good too. She never missed a step and is her same oldself.

Thank you so much for all your prayers and support. It means so much to us.

heart break

There is nothing more heart breaking than listening to your child cry and know there is nothing you can do about it.
IV starts: I don’t really know who hares them more~ Violet or me. I at least realize the necessity of it but still every blood draw/every need for an IV it breaks another piece of my heart.
But for now I sit and wait for the procedure to be complete…

This entry was posted on August 5, 2013. 1 Comment

Giggles

Giggles

This is from her feeding session. She appears to be enjoying her dinner…until I sit her forward and I realize what she really was thinking was funny.

sigh :smile….laugh…what is she really up to…

I have to share an experience I had today with Violet that makes me smile again right now as I type.

Today I was feeding Violet her lunch.  I find it much easier to give her solids and hook her up to her feeding pump at the same time, it my mind she will then associate being full with eating.  She saw me coming with the bowl of food and puffs…yes, she LOVES puff! and she started laughing and smiling.  She couldn’t stop laughing and smiling though out the entire feeding.  I couldn’t help myself but to smile with her.

Okay, so the truth behind all this laughing and smiling during her feeding I soon discovered might have had nothing to do with me.  I went to pick her up and snuggle with her for her nap and soon discovered what is what all about…those of you that know my sweet baby know exactly what I am talking about, because you too have discovered this same thing a time or two…yes, she had a bowel movement and while her legs weren’t stiff she was kicking a lot while laughing…should’ve known!

Needless to say I enjoyed the giggles & the smiles regardless of what she was doing.  I just love that she found something enjoyable! 🙂

She did it again in the evening while we were at a friends birthday party.  She’s a funny little girl!

much needed update

So what has been going on with Violet & her family?!?!?!

Family news: We had found a house not too long ago and closed on it!  Jake & Natasha are home owners!!!  That’s exciting!!!

As for Violet- she got fitted for a kid cart.  It’s a specialized wheelchair / stroller combo.  This will certainly help me when transporting Violet from place to place as she is just getting too heavy to carrier her in the infant car seat and with her low muscle tone she is not able to be carried like a normal child would be.

News that brings a little anxiety: Violet will be going in for another procedure on Monday.  We new this would happen – it’s to replace her current feeding tube and get us 1 step closer to the permanent feeding tube.  They will also be doing some biopsies on her colon to make sure everything is working properly.  This was supposed to be an outpatient procedure but with her questionable history of seizures with anesthesia she will be spending the night.

Then next Wednesday she will be getting fitted or leg braces to help strengthen her legs for standing and looking at the possibility for walking.  She also received her new arm brace & will get that officially fitted this week.

Grace is doing well.  She’s a “Big Tot” and is really excited about her new Tinkerbelle room!

Jake & I celebrate our 10 year wedding anniversary on Friday!  Where did all that time go???? Friends of ours also gave us PACKER tickets that they aren’t able to use.  I am super excited as I have never been to a game & it happens to be the weekend of Jake’s birthday so we have some dear friends of ours coming to stay with the girls and we will have a weekend away….oh my goodness! A weekend away from my girls?!?!  That brings some anxiety!!!  But I trust our friends so I know everything will work out!

This entry was posted on August 1, 2013. 3 Comments

glasses / Sounds

So a fun story…Violet got her glasses last week Wednesday and boy oh boy!  Has seem become alert with them. SO glad we went for a second opinion with Dr Galang and he suggested glasses this time.  She is starting to follow toys, she will look up at you if you walk near her.  I love this!!!!

But the sounds…she is making all kinds of new noises.  she even has this repetitive noise that sort of sounds like mamamamama….I like to think she is saying “mama” 

The developmental gains she has recently had are amazing!  I love everything she does that she didn’t do before.  I love hearing her giggle…see her smile…have her reach for my hand with her toes if I tickle them.  Her feet are a major sensory for her, she is always touching and playing with her feet.  I love when she looks for things are reaches back toward you if you have tickled them.  It’s all so encouraging to experience!  She is making some connections and she is doing great!

This entry was posted on July 9, 2013. 2 Comments

Thanks, it doesn’t seem like enough

Wow!  Where do we begin to thank everyone who has been involved in our lives so closely in the past several weeks?  Both benefits are now over and we truly don’t know where to start thanking people.  Both events were a success and we greatly appreciate all the hard work from the mom’s who put together the Stevens Point benefit, to all the amazing people who donated time and energy and put together baskets to raffle to the volunteers who helped out.  The businesses that donated food, gifts, etc.  Windsor Drive & Uncertain Storm for playing.  Seriously, the list goes on & on. 

To our family and all the golfers for the Beloit benefit – the 2nd annual Gold Benefit was amazing! To those who donated baskets & silent auction items. Thank you so much for all your hard work on putting together this event again!  We are looking forward to another fun event next year.

As I write this “Thanks” doesn’t seem like it’s enough.  To know that so many people care about us, want to help out or family…it truly is overwhelming.  To be at the center of all this is a humbling experience.  Someone asked me during the Point benefit if I knew everyone who had come…the answer…No!  I might have recognized some people but there were so many that I had never met, may never get a chance to meet – again the love is overwhelming.  There is nothing special about us….we are just normal people, working, taking care of our children…but yet we are blessed and loved by so many…all because God entrusted us with this sweet baby girl and a Faith in Him.

So Thank you for blessing us with your love…thank you doesn’t seem like enough.