I was going through some clothes of Grace’s last night to see what we could use for Violet and I ran across an outfit that my mom had gotten for them.  The girls had matching outfits.  Grace’s was 24 months & I can’t be for certain but I think Vi’s was somewhere between 0-6 months.  Wow!  Time has flown!  The girls have grown so much!!! it’s hard to think that Vi is in 24 month clothing and Grace is in 5T, Where did all that time go?  When did these girls get so big? So hard to imagine!

What’s been going on with Violet?  Not too much, so far (knocking on wood as I type) 2014 has been pretty healthy year.  She got her 2nd set of ear tubes & they have been working amazingly well, Thank you Dr Stone @ MFC!  With the first set of tubes we didn’t have any drainage…as a matter of fact, I don’t even think we had any ear infections but they ended up getting plugged and moved so we had to take them out but these ones are already showing how much better they are.  I picked Violet up for therapy a couple weeks ago and noticed that she had some nasty drainage from her ear, brought her to the doc and sure enough…infected.  But the best part was, she wasn’t showing signs of an infection like normal so the tubes clearly did what they were supposed to do & no oral antibiotics!!! 

Violet did end up getting some weird respiratory virus that lingered forever and lead to a chest xray which showed some questionable area on her xray leading us to an early cardiology visit and echo. Luckily this was all okay and we are free from cardiology for another year. So until the next round of appointments or anything exciting happens.

Stay tuned for 2014 Benefit info!

Where to begin? 2014 has come in with a bang.

Overwhelmed by all of the yearly or 6 month recheck appointments Violet got her second set of ear tubes since she continued to have ear infections after her 1st set came out. All in all that seems much better. Praise the Lord!

All of her annual appointments went very good. Honestly, there is nothing too exciting to report.

We were given some sad news last month and Violet’s favorite Occupational Therapist left our county and we started outpatient OT also. We are working with someone familiar at least. Linda is one of our NICU therapist.

Violet is doing well. Everything is on Violet’s terms of course! But occasionally she will stand and we even get her to take some guided steps, she can drink water with a big girl cup! We are working on getting her gait trainer. The lovely insurance completely denied the stander so we are moving on since she is doing alright.

We got a new sensory toy for her, a visually impaired toy. So far, she has not liked it, but I continue to give it a try.

Hearing aids & glasses: Well, you know, when Violet wants to, Violet does. Lately she has not been a huge fan of either of these. Not sure why, but that is what we are going through there.

Summer starts a new round of appointments, I need to decide whether or not I want to keep a 4 month appointment with physical medicine or push it off to a longer day with more appointments in early fall. I dread going over for 1-2 appointments. As stressful as it seems it’s almost easier to have a full schedule.

I will update more when the time comes.

February 28th is Rare Disease Day –

Please celebrate with us!

So what a road we have been on over the past 2 years.  Learning more about Violets brain condition and the fact that having little sleep was common for kiddos with ACC exhausted me.  Honestly I didn’t know how we were going to function as a family on little to no sleep for any duration.  The fact that we made it 2 years is unreal!

Many months ago someone suggested to me that we try essential oils (EO) on Violet.  I took their suggestion and started doing some research.  The fear of doing anything “non medical” is sort of scary since we don’t know much about Violet and her long term condition.  So I did more research.  I found 2 companies that set the bar pretty high and one set it just a little bit higher.  Well around the same time I had learned about this company a friend of mine had invited me to a meeting to learn more about EO.  I was willing to go and learn more from people who were actually using them.  I had read stories on the internet, but let’s face it…it’s the internet!  I wanted to SEE with my own 2 eyes people who had success stories.  Not only did I see them & hear their stories they sent me home with samples to try. 

Everything sounds good, but lets see if on my complex baby these can work!  Within several days of starting the oils and doing what they suggested Violet had started to sleep better.  Are you kidding me!  This must be a fluke! Right?!?  Well, 2 1/2 months into the journey with EOs Violet is consistently sleeping 5-6 hours a night, getting up to eat and for the most part heading back to sleep.  Of course we have the occasional night where she is more rowdy but more times than not she will go right back to sleep.  I can’t tell you how I feel having sleep again!  I feel like a brand new person!

I have recently borrowed a diffuser from a friend and have  a sleep potion going for everyone at bedtime and Violet overnight, I have it running during the day with other oils.  I MUST GET A DIFFUSER!!!

Some other success stories for my family are the stomach flu (we didn’t completely escape, but Grace had such a mild case…I’d consider it a success).  The stomach flu started going around daycare and I looked in my Modern Essentials book to see what I had that I could load the kids up with for immunity support and we could avoid the flu.  The company I chose to get my oils from is doTerra so we put Onguard,  Frankinscense, Melaluca  and I’m sure a few others on.  Grace is the only one who got sick and like I said, it was a mild case.  She slept most of it off, only getting sick twice after bedtime and just feeling blah until after naptime the next day.  Who wouldn’t agree…success!

After Violets surgery I was pretty sure she was a little nauseated.  After her first feeding she got ghost white, never got sick but got white.  I pushed off her next feeding a bit and even made it lighter (less calories) than the previous and less volume.  She spit up a little.  I got some ginger oil, put it on her feet and she was feeling better by her next feeding. 

Someone brought home a little sinus thing, I started putting Onguard on everyone and everyone except Vi was getting the Onguard beadlets.  This didn’t last nearly as long!  We used Lemon on Grace and Violets feet for running nose and that cleared up, Breathe to help decongest everyone…we could breathe – no congestion! 

Violet has been more alert, active.  More talkative and giggly since starting the oils.   She is actually making audible sounds, we have dah, bah, gah…these were things she never did.

It seems crazy how EO oils work but the science behind it makes sense to me also.  I think back to what was done before we had so many pharmaceuticals.  Women would grind up roots & plants and put them on areas that had an ailment and you could get healed.  This is the same idea as that. You are just taking the most precious part of the plant and distilling to get a powerful oil.  It’s safe, there are NO side effects, its a natural way to heal.  I have so many more stories of people I know who are using EO and how they have helped!  If you want to learn more or want to know how you can order / use essential oils to help you please feel free to contact me – text or call if you know my number or email me: natnikmak22@hotmail.com

I’d love to share this with you! It’s amazing how they have worked in our lives!

So here is a quick version of all that went on.  Many people know that Vi had ear tubes placed in April when we got our G-tube.  Well in September we started having problems with them and at the end of the month we took them out.  From that point forward we were on antibiotics for 10 days / off for 2 weeks so on and so forth because she continued to get more ear infections.  So we went back to Dr Stone to see what her thoughts were about getting tubes put back in.  She was on board. So yesterday we underwent another procedure to get new tubes.  What they were projecting to be a 30-45 minute OR took all of 20 minutes. Praise the Lord!  Vi was not under for long at all.  She got to the OR started looking around, went to sleep nicely and before I knew it she was back in my arms. 

One thing I do love about St. Joseph’s hospital is that they have a program and they have “Child Life Specialist”  it’s someone who can let the children know what is going to happen to them on their terms but for us Violet doesn’t really need that. But the wonderful thing is we have been able to have the same CLS each time we have been there.  Heather has been there with Violet through some rough times and I was so glad to know that while I couldn’t be with Vi, Heather was.

Vi is doing amazing post operatively. I am pretty sure she was dealing with some nausea yesterday so I got some ginger oil and put that on her feet and she seems to be doing better now.

What is ginger oil you ask?  Oh don’t worry, that’s another entry I need to get done this weekend.  I have found an amazing product that has really helped not only Violet is SO many ways but the rest of the family as well….stay tuned!

We have so much to be thankful for this year. Although we have had hiccups along the way with illnesses in 2013 we have made it to the end of November without any (dare I say it) major medical issues like last year! A couple of hospital stays here or there, some infections and a few surgical procedures but nothing as scary as what 2012 brought.

We have made so many new friends and have spread the word about rare chromosome disorders. We have been blessed by complete strangers, who we will truly never be able to show our thankfulness to. Violet is gaining weight and growing like crazy! Even if the charts & numbers dont really show it her clothes do!

We have been able to get some amzing equipment for her mobility and accessibility and will be fighting to get more.

I’m so thankful for today’s technology really. Without the advancement in health care I have to wonder where Violet would be…in an institution? Starving? Thinking back to a day where they didn’t have NG tubes or G tubes a child like Violet might not have made it if she didn’t eat. My life would be so empty without her. Although the late nights / sleepless nights are certainly getting old her precious little face makes my heart melt. When she looks at me with those eyes or when she is in a silly mood and enjoys being tickeled that smile & those eyes will get me every time! Or those sweet lips & peaceful look while she is sleeping. Those are the moments every parent enjoys & for that I am thankful. Even through the difficult days, I would never give up my life. This is the life I was given and for that I am thankful, 2 beautiful children, a wonderful, devoted husband, great healthcare providers, understanding friends & coworkers. It’s the people who stick by us through thick and thin and don’t judge us for what we have accomplished or haven’t done that I am most thankful for. In my books in the last almost 23 months we have accomplished a major lifestyle change! No one ever expects to have a child with special needs and we took this lifestyle and embraced it, everyday. How do we do it? Just like you…one day at a time!

Today we are thankful for a God who loves bigger than we can ever imagine, for all the people who have been there and supported us through so many trials, good times, bad times, our family for putting together the golf benefits to support Violet, the wonderful team of ladies and the community who supported her this summer. So many times we have said that Thank you is never enough…it always feels like it isn’t, but know we are thankful for you…for taking the time to read…care…pray…love…support our family…our sweet Violet.

If you haven’t ever gotten the chance to meet her I hope someday you do…she will bring a smile to your face and a memory you will always have…Thank you

I have been away for quite a while. What’s new with Violet? So much, yet nothing at all. I have been deep in my thoughts but haven’t felt like sharing either. I write so many blogs really…in my head. They never make it to the keyboard.
I’m so grateful for all who care about our dear sweet Violet but I will be the first to admit, sometimes I just want to live my life….but tonight I am in a very content mood to share.
So Violet has FINALLY received her kid kart. (That’s her big news) For those who are unfamiliar with what a kid cart is, it’s a specialize stroller if you will. It’s sort of a cross between a stroller and a wheelchair. It has accessories for both. We will be able to feed her with her pump anywhere as we have a iv pole attachment and it has a canopy for when we walk and the sun is out. It tilts into different positions, it has a tray she can use to play with toys. It’s REALLY exciting. I will now become a minivan mama tomorrow. If you would have seen me trying to shove the base for the kid cart in the front seat of the Saturn you would realize just how excited I am!
Therapy news: Violet is drinking a few sips from a straw and testing some solids with a spoon or an oral toy we have called a zoli brush. Those are huge milestones for her since she had pretty much quit taking anything orally. She was having a few issues with her belly and her feedings earlier this week after we increased her calories. Still not sure what that was all about or if it is over but today we introduced her formula again at a lower rate and so far so good.
She is starting to sit a little better and we are working on standing with her leg braces. Some moments are better than others. We played a little game of peek – a – boo that slightly helped today.

Now that the seasons have changed I am reminded of the simple things in life that we are to be thankful for. One that strikes me every time I put Violet to sleep is the ability to pull my covers up to my neck and keep warm. Just keep warm in general. Violet has issues keeping her body temperature so at night if the blankets wiggle just enough and she catches a draft she is waking up. Not needing to be up but just cuddled and warm. While looking at her peaceful sleeping face melts my heart I wish I was in my warm bed with my cuddle buddy.

I can never say it enough but we are so blessed to have the wonderful people around us that we do. Thank you all so much.

Well, even though yesterday’s news was stressful on mama I feel so much better today. Dr Weddle took my old tubes out of my ears and I can relax and am at peace. I even played in my mats tonight. Mama said I had to play quietly because daddy wasn’t feeling good and he went to bed very early. After playing for a while mom put me in front of the window to look outside. That’s what I miss the most about our new house. I used to look out the patio window all the time. I really like being outside and watching the outdoors. Then after a while of watching the front yard I played in another one of my mats while mom folded some laundry and Grace played with her magnetic dolls. Mom was playing for a while too but she needed to get the laundry folded. Then it was time to eat and put Grace to bed.
Mom was excited and so was the Yvonne from Dr. Weddle’s office because I was in a much better mood today than when they saw me with my favorite audiologist Nicki yesterday. Yesterday I just did NOT feel well at all! But I got good sleep last night–mom did say she gave me something to help me relax and take away my discomfort — I didn’t mind because I just need to sleep to feel good sometimes too!
I know mama is worried about me getting more ear infections without my tubes because I did so well with them. It didn’t matter what season it was I was getting ear infections before I got my tubes. But I am going to try my best and hopefully we will have a healthy winter season!
But I suppose I better get to bed so mama can go too. She is on her own with me tonight since daddy doesn’t feel good. Hopefully he doesn’t share this with me or Grace or mom – mom’s not allowed to get sick! She is TOO busy with work and taking care of me and all my stuff. Especially now that I have therapy weekly!
Have a good night!