“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!

Surgery

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!

This entry was posted on January 25, 2014. 1 Comment

Year End Review

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Wow! 2013 has been quite a year for us.  Violet has been relatively healthy compared to 2012.  We have had a couple of small procedures and hospitalizations but nothing too scary or out of “our norm”

We had so much fun with our  family, friends and community as we were blessed to have been shown the love and support of so many people with the 2 benefits held for Violet.

We were blessed to have finally found a house that will work for Violet’s needs and give us the space we need for equipment. I joked with our realtor so many times about whether or not we were actually going to find a house.  (we had been house hunting for what truly felt like an eternity).

2013 Also left us with some sadness.  We lost several of our favorite caregivers at daycare and while they still remain close friends they are moved away or busy with their new jobs and we miss them dearly.  Some graduated and moved on and others came back after summer vacation but things are just….different.  We have grown to love so many of our caregivers and it’s hard to have them part and move on and have to learn new people and get people to really understand us and Violet’s needs.

Violet got her feeding tube which allowed for major development and growth which gave us the need for her kid cart (its like a wheelchair / stroller combo) which gives her the ability to be mobile and gives my back a chance to not break from carrying her around. However the kid cart does not fit well in either vehicle we owned so at the end of November we purchased a mini van!  That’s right, we are now mini van parents! 

I have started to use Essential Oils to try to combat some of Violet’s needs, which includes sleeping.  She has started to sleep 5-6 hours on a good night which is an amazingly better average than our normal 4.  Some days I actually feel like a human again! 

So is there anything planned for 2014?  Well at the end of January Violet will go in to get her ear tubes replaced as she had them removed at the end of September because they had moved and were plugged and she has already suffered several ear infections since (although, there is an oil to help that we will still proceed).  We would like to take the girls on a little weekend away for something fun.  Something Grace would really enjoy.  Of course we will travel to see family and have the Golf Benefit in Beloit! 

What are my hopes for 2014?  I hope that we can stay focused on our Creator and what He has given us, stay true to who we are, (of course health…how could I not hope for a healthy year?)  hope that people would understand me better and realize that if I try to give them suggestions on how to take care of Violet or what we need to do to keep her development growing that it is not taken poorly but instead out of love.  Honestly I hope to lose some of this weight I have gained since having Violet.  (it seems silly I know, but the weight came off and stayed off with Grace but there has been no time and too much stress since Vi has been born and I can not lose it!)  I hope that I have more time to spend and reflect in The Word of God.

I hope that for all those around us, family, friends, acquaintances, that you would be happy and healthy as well. 

Recently on one of our dear sweet caregivers Facebook pages she posted a verse that is a reminder for all of us, it’s from Romans 8:28, it says “And we know that in all things God works for the good of those who love him, who have been called according to his purpose.”

Here’s to 2014

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one more….the love these girls have for each other is amazing! Violet have been blessed with an older sister who has so much love and adoration for her baby sister.  I can not wait to watch and enjoy Grace growing up.

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