Time flies / 5K

napping on mama

napping on mama

 

I can’t believe it is already July!  Time sure has flown!  I feel like it was yesterday that I was pregnant and we were just starting to realize what life would be like to 2 children.  Then with the birth of Violet we had to make the normal adjustments and even more with her needs and illnesses that we faced.  But here we are 3 years later, with a little girl who is amazing!

God has certainly blessed me with 2 amazing daughters, Grace who has a heart for others.  Who is so loving and tender, truly the best big sister to Violet ever imaginable!  And of course Violet, the start – with a smile that will brighten any day and the most contagious giggle you will every hear.

While no one’s life is easy being a mom to a special needs child is no exception.  This week I was sitting at work and I got one of “those” calls. Violet was incredibly irritable and wasn’t technically feverish but for those close to Violet, anything above normal is cause for concern.  My little sweet pea has been pretty healthy for a while and I suppose it was time…

She has battled an ulcer around her feeding tube off and on for a while and Monday night when I went to change the bandage it was really bad and red and made me concerned, but I’ve seen it before so I knew what to do and decided I’d keep an eye on it, however I started to panic a little with the new symptoms, what if it was something more?  What if it was infected?  I contacted our pediatrician and our GI doctor and we decided we needed to head to the ER.  All the testing could be done and the results back a lot faster than if we went to the On Call doctor.  After sitting in the ER for nearly 5 hours, we had answers.  Violet had a UTI.  What?!?  I know her UTI signs.  I didn’t catch this one.  But the good news?  It’s treatable! Even better…it’s treatable at home!

I am so grateful for the attentive, loving caregivers who know Violet’s signs just as much as I do.  I can rest every day when she is at daycare knowing, they know what to do and what her change in behavior means.

 

 

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As time flies, I can’t believe the 5K is just around the corner!  This was something my dear friend and I have been talking about putting together for over a year now.  I can’t believe we are on the home stretch to get this done and ready!

There are so many wonderful women on the team helping put everything together.  Questions arise as to how to be helpful, we still need items for the silent auction as well as the team of volunteers that are needed to make the event a success.  If you have the morning free but would prefer not to walk / run we need volunteers through out the course as well!

There is limited time to order your tshirt with the registration so register early for the event!

I feel so blessed to have a wonderful group of family, friends and strangers who love and support my little girl as much as I do.

Many wonder what Violet needs help with and why we are doing the fundraiser.  As many of you have seen Violet in the gait trainer that is definately a huge item on the list as well as transportation cost for traveling to appts and the van.  Violet is also getting to big for her crib so I am going to be looking into getting her a special bed for special needs.  I’ve heard insurance will assist in some of the cost of the bed.  Those are the bigger items.

Thank you all for your continued love and support of my sweet baby girl!  “Thank you” never seems to be enough….

 

 

Pretty Girl

 

“Minor things”

Technically it’s still summer and we have had our first bout with the cold season.  Violet started it and ended up being diagnosed with pneumonia.  Grace got it and ended up with a sinus infection and now I got it.

The funny thing for me though is treating pneumonia at home is a minor thing.  I ran into someone at the park and she asked how Violet was doing and I said pretty good.  We have had a few minor things but pretty good.  Now Violet’s sleep habits are horrible and that comes with her brain condition so to me when she gets sick and she sleeps even worse, I guess I don’t think too much of it.  But with the pneumonia she would not settle down unless she was being held.  This was difficult.  I had posted something on facebook about how the pneumonia was kicking me in the butt and the same friend I had ran into at the park was confused because I had said that we were ok.  Please keep in mind, pneumonia being treated at home vs being hospitalized…is such a minor thing in all that we have faced.  I had to laugh…yeah, absolutely, more sleep deprivation, a somewhat serious illness and that is just minor for me…I can see how that is a big deal in others worlds.  So I guess I need to think about how I approach the “how is she doing” questions…. :)

She also has been suffering from a wound by her gtube sight which currently is healed but we will see for how long.  I received her longer button yesterday so after bath today will change that and hopefully if we can keep her cushioned we can keep this sore from coming back.

She is completely over the illness now and is back to her sassy little 2 year old self.  I forgot how tiring it is to change a toddler diaper.  Violet has discovered that it is a LOT of fun to roll around while getting her diaper changed and dressed.  I am exhausted at the end of all that!

September marks another busy month for us as we see almost all of our specialist in Marshfield in a 2 day period as well as our normal therapy schedule.  I am so grateful for an employer and coworkers who understand my need to take care of my child and all that Violet needs.  I couldn’t ask for a better group of ladies!

 

growth

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!

2014 update

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.

Essential Oils

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!