Monday, October 24, 2016

Aine is doing well on her new food.  Her skin is clearing up beautifully and she isn't waking up in the middle of the night crying.

We have however discovered some other issues during this new adventure.  While we don't have a cut and dry diagnosis as of this time, we have paths that we are going to take to diagnose or rule out a few things.   As we know more we will update.

Some other cool things that have happened - Shawn is now a purple belt and Liam is now an advanced red belt.  Aine is working hard to earn her Green stripe belt.

Shawn and Mike went to South Dakota for pheasant hunting.  They didn't get as many birds as they wanted, but were able to spend some time together - so that's a win in my books!

School is going well for Liam and he likes the new school.  Having some of his friends at the school helps out a lot.  His teacher is great, and they are working on adding to the playground so once that is done he will be even happier :)

The kids had a Karate Tournament and they both did Wonderful!  Liam received 2nd and 3rd and Aine received 2nd!  The kids couldn't be more excited about how they did and continue to practice for the next tournament coming up :)

Wednesday, September 28, 2016

Yesterday was a pretty good day for Aine.

She got to see her field nurse and get her NEW food!!
She was nervous about eating again, but knew that we had the necessary medication to help her right away if there was a problem.  Yesterday she was still an itchy day for her and we are working on healing the wounds that occurred during all of this. 

Both kids have started the Awana program and are super excited to start the program this year.   Liam has earned his patch and is currently working on getting his flight wings.   Aine has finished her starter book and is "patiently" waiting for me to bring home her rewards for her hard work :)

Liam is moving forward with karate and is working on getting his advanced red belt.  He has created a goal for himself which is:  "I want my brown belt for my birthday!"   This came up because testing for the advanced belts is in October and April.   Aine is doing great in karate and sad that she has had to take a break due to the food allergy issue.    They will both be competing in October.

Liam is enjoying 2nd grade so far.  He has had some bumps in the road, but I think that is typical since he is in a new grade And a brand new school.    Aine is enjoying working on words and letter combinations. 

Shawn has joined the world of martial arts and is doing wonderful!  He has been invited into the Master's program and enjoys both sparring and grappling.

Thanks to all for the support during this crazy time!  A special shout out to Mike for helping me kinda keep my head during the worst of it all, I couldn't have done it without you!!

Tuesday, September 27, 2016

Crazy Time!!

Well,

The Casey household has been on a pretty big rollercoaster that we haven't fully gotten off of yet.

Aine started to get spots, tummy issues, headaches, and some other symptoms.  We couldn't figure out what was happening to her, so we continued to monitor and watch for anything big or small.

Well.....  Saturday she decided that she would show up home after Team practice covered in hives and red marks.  This continued through the night and got worse in spurts throughout Sun.

I ended up taking her to the ER to find out she was having an allergic reaction to something.  They gave her some Benadryl and once we knew she was stable - brought her and an epipen prescription home.   Her next feed would make the spots rear their ugly faces again.  This time I was prepared with Benadryl and the knowledge to know what was going on.

Aine and I spent Monday verifying that she wasn't getting the itchies from any of her meds, spent countless hours talking to people on the phone, and at the house.

Right now, we are figuring that she has developed an allergy  to Soy, so she has been placed on a hypoallergenic food to see if she can tolerate it.

We are wishing, praying, hoping, and begging that it works because we want her to be able to continue to "eat".

So far it is going good, but she has only had one feeding and is tired (she was living on pedialite for almost two days)

We need to continue to closely monitor her for any additional issues.

Here's hoping and praying that this new food will work and she can remain on it without Any problems.

Tuesday, August 30, 2016

Break

If you follow my Facebook page, you probably saw that I took a break from Facebook - but in reality, I took a break from the internet world.  It was a much needed break and allowed me to start working through some of the demons that have made there way into our world.  While I still have a lot to figure out and a lot of work ahead of me, I am ready to start updating on our blog again.  This will probably be the only place I update, so if you want automatic updates - please take a few seconds to sign up for email updates.  I will not know if you subscribe and will not utilize your email address in anyway.

So....  now onto some of the things that I have been working through.  (a summary at least.....)

The reality that Liam is now in 2nd grade and going to a new school.

The great news that Aine is in a better position than she was l year ago, but the confirmation that she should not go to school because lung wise it is too dangerous for her.  Since her immune system is messed up and any illness can affect her lungs so drastictly and so quickly; we will be putting her into a homebound program.   We were expecting to receive the "no go" card from a doctor, but it honestly doesn't make it any easier to swallow the news.  So..... now we are working with the school get her into the homebound program.

I had surgery on my nose due to a deviated septum and am recovering very well from it.  I have realized just how sick I was prior to surgery and how much the migraines I was having affected myself and my family.  I had to cancel a lot of Aine's appointments during this time and am working on re-scheduling all of the missed appointments, which is extremely time consuming.  I still get really tired after a super busy day or a really stressful day, but nothing like it was before so I will take it and keep moving forward.

Aine is having skin issues that we are working on figuring out.  We believe it is a severe reaction to mosquito bites, but will have to wait to get a final diagnosis from the dr.

We are working on weaning Aine off of a medication and we are at the stressful point which is the determination point.  Her body will either be successful or it will fail which would likely land her in the hospital.  So I am monitoring her levels multiple times a day to hopefully prevent anything from happening.

We have had another piece of equipment added to Aine's daily regiment to help her cough the gunk out of her lungs.  She is doing well with it, but still has some learning to do to make it work as well as it should.  I am working of figuring out the schedule so that we can fit it in as many times as it is needed.

We are coming up on winter sooner than I want and early cases of illnesses that Aine needs to stear clear of; which means I have to start putting winter protocol into effect.  The first is minimizing the places that Aine is allowed to go (grocery stores, gas stations, convience stores, schools, restaraunts, etc), the next is to make signs for the doors (I need to make a permanent one, but haven't yet), then the biggest and most hated one - closing the house down for the winter - meaning visitors will have to answer a series of questions:  How are you feeling?  Runny nose? Headache? Fever? Last time you got shots?  Which shots?  Have you been around anyone that is sick?   We are also getting her masks ready so that she can go to her therapy lessons. 

I am trying to mentally prepare for the stares, nasty comments, and jumping back like she has the plaque because; at the age of 5 Aine has had to learn how to protect herself from getting sick.  I am grateful that she hasn't figured out the looks are negative and isn't affected by it, but I know those days are short lived and soon her feelings will be hurt.  I have been teaching her how to answer people when they ask questions.  I have been telling her to smile when people cover their mouths, glare, or speak to me like she's going to get them sick when in reality - they are more dangerous to her than she is to them.

I am preparing myself for the day that I say - ok!!  Time for homework!!!  Last year was not pretty - I'm guessing this year will not be pretty either.  She oh so wants to go to school - I wish I could send her, but quality of life is soo much more important than her going to an actual school and being sick all the time.  I continue to tell myself we are doing the best thing for her as she only went to school 8 times last year.  Yes - you read correctly Eight days.

I am trying to mentally prepare for the days that Liam wants Aine and I to go play in the snow with him and I have to deny him the first, fourth, tenth, I forget how many times I have to say no by the end of the winter.  He understands that Aine is unable to control her temperature and will turn blue after 5 minutes in the cold, but he doesn't give up asking - even though one day soon he will - and I will have missed out on all those opportunities to play in the snow.  At 7 - I still have yet to teach him how to make a snowball, a snowman, a snowfort.  We have never had a snowball fight, have gone sledding one time (and I'm sure he doesn't remember it), and made One snow angel.

I am trying to mentally prepare for it to be Aine and I - just Aine and I.  Lack of adult interaction is scary, draining (both mentally and physically), and not good on full sentences.

You may be asking Why? Why are you telling me this? or saying - Oh... I'm Soo Sorry for You!!  But I'm asking you not to be sorry for me, for Shawn, for Liam, or for Aine.  I am telling you this so you understand why I have not been giving updates and why I have been away from the world of the internet for so long.  The brain is a wonderful place, but it is the worst place that you can be when you are feeling down, unsure of yourself, or overwhelmed to name a few.  I'm also telling you this so as I update on various things you will understand where my fears, confusion, frustrations are coming from.  The world is a crap place right now with a lot of crap going on and I let it affect me in a way that it shouldn't, so I turned my attention away from the source of negativity and instead to my family and what I can do to help them and how I can be there for them. 

As always - please don't hesitate to ask any questions.  Don't forget to sign up for email updates if you haven't already and look for more updates (Fun ones :) )

Wednesday, June 1, 2016

I am having a hard time believing that it is the last day of school for Liam!  He will  officially be a 2nd grader at the end of the day!!

The year has gone by soo fast and I know that the summer will go even faster.

Both Aine and Liam will continue with Karate throughout the summer.
Liam will continue with swimming and wants to add gymnastics to his schedule so he can start working on his extreme forms for Karate
Liam will be doing some summer school and both kids will be doing library and church activities through out the summer.
Mike and I have been busy busy busy in the garden and can't wait to start harvesting our yummy food!  Liam is just waiting for the raspberries to ripen :)
I had my septum repaired so I'm ready to hit the road and find all those Awesome garage sales!!  It's amazing how much energy I have since my surgery! 
We will be going to  2 Relentless events and 1 Hopekids events in the next two months.  I will be lifting in one for sure and Shawn may be running at one.
Shawn has started grappling and karate as well as continuing to run.

We are excited for our busy summer and  the fundraising events that we are apart of.

If your in the area - let us know!  We'd love to catch  up!!

Monday, April 11, 2016

The kids have been rocking it!!!

Besides the dreaded Strep throat (Liam), the kids have been pretty healthy.

They have been competing in karate and loving every minutes of it.
Liam went to Chicago with Shawn and did really well.  He competed on a raised platform and wasn't bothered by it at all.
Both kids competed at that karate cup and did fantastic!  Aine competed with Nunchuck princess for the first time and was surrounded by a huge crowd.

Liam is close to the end of his 1st grade year and will be moving to a new school next year where he will complete grades 2-5.

We are working with the school to figure out what the best thing for Aine is concerning school.

Aine had a cardiology appointment that went well.  Her pressures are remaining similar her conduit is still working, and she looks healthier than previous appointments :)

We still have questions about her size, but that is currently on the back burner because there are more pressing items that need to be figured out first.  Some of them are: what is causing the bradycardia (slow heart rate), what is causing appearing and disappearing rash, does she have immunity to certain things (chicken pox is the biggest), how are her hips and pelvic bone, how is her GERD going and is it affecting her heart?  There are many other things that we are working on figuring out, but this will give you an idea. 

We finished our weekend going to the Relentless kickoff which was a Huge success!  I was able to meet Hannah, who is the little girl I have been matched with to represent at the Big event coming up in July.  Following is the link to my FirstGiving page:
http://www.firstgiving.com/fundraiser/nicole-casey-3/relentless2016

Thank you for your continued prayers, support, and good wishes!  They mean the world to us!!

Friday, February 26, 2016

A lot has been happening in the Casey household!

 Bragging - training - fundraising - and smiles!!!


Both kids are completely into karate.  Liam is currently a blue belt and has a tournament coming up this Sunday!  He will be competing in 2 events for sure, with the possibility of a third depending on how try-outs go.  Aine will be graduating the second week of March to a double blue stripe belt!  Both kids have a tournament coming up in April - Aine will have 3 events and Liam will have 4 or 5 events (again depending on try-outs)   Liam will then again be competing the end of April.

Aine is under the weather right now, so if she could get some positive thoughts, prayers, well wishes - we would greatly appreciate it.  I will answer any questions I can, but it will mostly be through some form of written update so I can stay by her and remain quiet to allow her to sleep.  Liam really wanted all of us at the tournament this weekend, so I'm really hoping this isn't the other shoe - just a tiredness issue.

Liam will be on a soccer team this summer as well as starting to take swimming lessons again (we took a break because the facility was updating their locker rooms).

Shawn is currently training for a 17.5 mile run as well as a few other events (Tough Mudder, etc) that he does on a yearly basis.

I am training for a powerlifting event called Relentless which is to raise money for HopeKids. 
To find out more information follow this link:   http://www.firstgiving.com/fundraiser/nicole-casey-3/relentless2016


With all the cool things happening and the kids getting into more activities, I decided to try my hand at direct sales and chose a company that can satisfy my sweet tooth - Dove Chocolates!  I'm still super new at it, so I am still learning the ropes, but check it out by following this link: https://www.mydcdsite.com/pws/nicolecasey/tabs/index.aspx

Aine is also part of another group called Coles Page - this is a great site to share prayers and add people to your prayer list.  You will need to set up an account (free of charge and just for security reasons) to view many of the families profiles - but you can check it out here:  http://www.colespages.org/

Because we are all for the betterment of life, helping those around us, and sharing what we believe in - we have to throw out our friend Holly's page also.  She started taking the plunge with her co-workers a few years ago (you'd have to ask her if you want to know exactly how many times).  Well - she's at it again this year!  If you are able to help out it is greatly appreciated.  If not, passing her link on (as well as others you believe in) is a Huge help!  Follow this link to get to her page: https://reg.plungemn.org/participant/hollyf