Andie & The Puppy

 Aine had a writing project for class.  She learned about writing from a fabulous writer who visits the kids school every year.  This is what she came up with....  ENJOY!!!  :)

    Andie came home from school and found a letter from her mom telling her to get eggs from the grocery store before her dad got home.  She was ANGRY because she had a lot of homework to do.   She got a bog from her room to put the eggs in.  Since Andie has her drivers license and car she was able to go to the grocery store listening to her music loudly which made her want to dance.

    On her way home she got a letter from her dad telling her they were out of pancake mix so she needed to pick some up.    Andie LOVES pancakes so she was excited to hear this news.  She happily returned to the grocery store.

    On the way to the store Andie saw her friends at the park.  She was sad because she wanted to play but couldn't stop because her dad was going to get home early.  She Did however stop at the crosswalk to let the chickens cross the road!!

    While Andie was at the grocery store ANOTHER message came from her brother because he ran out of shoes Again!  The only thing she could say was "COME ON!"

    She went to Kohl's to pick up shoes and stop at the park on her way home to play.

    During this time; her teacher sent her a note that it is distribution day and she needed to come pick up her work.  She was super excited about this because she was getting books from the library!

    When she returned to her car there was a note from her dad that they need milk and clothes.

    She is getting BORED of all these letters!!!

    But! She goes to Kohl's and then the grocery store and finally home to help make pancakes and do her homework.

    Andie was doing her homework with her headphones on when she heard a scratch at the door.  She was concerned about the sound and decided to check it out.  When she opened the door she saw the cutest little puppy EVER!!

    Andie wanted to keep the puppy because she never had a puppy.  She brought the puppy in to nap under her feet until her mom got home.

    "om, is it OK if I have a puppy?"

    "Yes!" said mom

    "Great! I'm naming her Sophia!"

    Andie was really happy she could keep the puppy and took her to the park to get rid of the puppies energy.  They played catch, swing on the swings, and slid on the slide.

    When they got home it was time for be.  Her mom said the puppy could sleep with her so both Andie and the Puppy put on pajamas and happily went to bed.

GROWTH!!!!

It has been a crazy busy couple of months.

We have taken huge strides with Aine and her health!

We started by traveling to Mayo and discussing her nutrition.  Aine had not grown in the last 5ish years and was starting to lose the muscle mass she worked so hard to get during karate, horseback riding, and dance.  She started to sit during classes and then not want to take classes; which was a red flag in our books. When she stopped flipping her bo staff and chucks and didn’t want to touch her sword I knew that we had to do something.  

An appointment was scheduled and we started our new adventure.   During the first month of our transition Aine was switched to a different food and started to gain weight and get her energy back.  Within two months Aine gained 6 pounds - yes SIX Pounds!! More than she gained in 5 years total!!

We traveled back about a month after the food change and got good reviews from all of her Dr’s    as well as got referred to a bunch more Drs. She was asked to join an aerodigestive clinic to help with her incontinence; swallowing; and respiratory issues.

I’m happy to announce that she has passed her VERY first swallow study.  She has been working hard for 8 years to be able to pass this test and has finally succeeded!!!  Tomorrow; she will go to the surgical suite to verify that there are no issues that need to be addressed prior to allowing her to start with a feeding schedule - whether that be in a feeding clinic or at home.

Her vocal cords seem to be intact and working as they should; but that will also be verified tomorrow.

She is down to one hearing aid and will have further hearing tests once her ears are checked tomorrow.  I’m guessing that they will clean her ears out and if they don’t find ear tubes; possibly put another set in.   Once this is done tomorrow - we will schedule another test to verify the initial hearing test results and do any adjustments to the actual hearing aids at that time.

One side of her nose is inflamed; but no reason “why” has been discussed as they will look at all of this tomorrow.

Pulmonology will also be in the surgical suite tomorrow and they will be looking at her lungs as well as an abnormality that was seen on a previous scope.  They will be looking to see if she has any damage or inflammation from illnesses or structural issues which would cause her to get sick or sound sick (croup type cough and prolonged illnesses).  Our end goal is to keep her healthy and hopefully start going out without her mask!! They will also be helping us set up a new chart to follow should she get ill.

During this time they will also be checking to make sure she isn’t dealing with ulcers and may take biopsies while they are there due to some of the other things Aine is dealing with.

We will not have the results of all the tests for a few weeks as they need to be put together with her previous results which will include the results from the tests that are scheduled to be done in a few weeks. Which will start with a brain and spine MRI; this test possibly holds the answers to many of the questions that we had or have arisen during these last few months.

Moving on from those 3 systems:

Aine’s bone age came back as a 6 year old; so that means that she still has the ability to grow!  She has grown a titch since the food change and she has been ecstatic about picking out new clothes.  She is definitely my daughter when it comes to clothes and shoe shopping!!!

Her right leg is shorter than her left; so she now has a lift in that orthotic.  It absolutely makes a difference as her hips are now level.

She is running and jumping; riding her bike and swinging faster than ever!  She loves to go to the park and throwing toys for her dogs. She just had a dance recital and is ready to start going to karate classes again.  We have her all signed up to start riding her horse again and she wants to take tap class.

The problem we have been running into though is that her knee hurts.  We were able to talk to the Dr’s about it and they did some testing and discovered she has osteopenia.

Definition: Osteopenia is when your bones are weaker than normal but not so far gone that they break easily, which is the hallmark of osteoporosis

During the state fair - Aine broke her leg….  There has not been an official link between the two and we don’t know what the next steps will be; but in August we will be seeing a specialist to discuss the condition further.

It hurts my heart to know her knee hurts so bad; but at least I can explain it to Liam now that is the positive at this time.

There have not been any signs of scoliosis; so that is good, but since she has DiGeorge Syndrome they will continue to monitor her as she gets older (22q11.2 puts kids at risk)

Her shoulders were reviewed and we will be discussing them in more detail after she has her testing tomorrow and the end of June.  This is limiting her mobility and exercise. It is not known at this time if they are higher than they should be or if there is extra stuff in there as there is a possible calcification by her neck as well as by the opposite shoulder.  I’m curious to see what the rest of the tests show about this. She has a webbed neck which limits her mobility some; but we are not planning on addressing the webbing at this time.

She will be checked for Chiari Malformation as well as a tethered cord.  If she presents with either of these; we may have our incontinence reason.   She will also be checked for brain stem damage as well as pituitary growths.   These results will help the Drs determine which path to take to help Aine continue to make leaps forward.

She looks out the side of her eye (turns her head to the right to watch TV)  so she will be having a full eye exam to see what is going on there.

During a future visit a sleep study will also be done to check on her sleep apnea and make sure her Bi-pap settings are correct.

Aine saw the cardiac surgeon and he has ordered some additional testing to see when she will need another heart cath which will help us determine when she will need to have another open heart surgery.   An OHS is absolutely in her future (and sooner in life now that she is growing) but we need to make sure that it happens at the correct time for Aine. Not too early but not on an emergency basis. All the future testing will assist in giving us a timeline.  

There are definitely more positives than negatives and more answers than questions.   

Aine Loves the hospital and all the staff that have worked with her.  She asks all the time when we are going back and we have to count on her calendar the days as they go.

She is stronger than ever and ready to fight the fight she started over 8 years ago.

She is determined to kick the boys butts (Karate tournaments) and going to grow big like her friend Jessie.   She’s going to be a horse mommy and have her bestie train her baby. She has a shoe family right now that is learning to tap and LOVES her new food.  For now Chase (paw patrol stuffed animal) is her baby and he loves to flip and do the long jump.

She can’t wait until she is ready to test for her black belt and has been practicing her spin jump wheel kick.  Did I mention she LOVES her new food??

Thank you for all your prayers and good thoughts!  They mean the world to us.

As always - if you have any questions; please feel free to ask.  Post a question publicly or send us a message.. If you have a question, chances are someone else has the same one.

It has been a crazy couple of months!!

Aine and I traveled to Rochester to meet with some Dr's about her height and weight.  I was a great visit with lots of learning.   Due to this visit we will be returning to Rochester to do an inpatient food change.  On a normal basis I would do the food switch at home, but this time is different; Aine has some values that are extremely low and the food switch could cause Refeeding Syndrome.   This is dangerous so they want to have her under strict supervision during the change over.
Once the switch is done, we will know if she is small stature because of DiGeorge Syndrome, her heart, or the food that she has been on.

Once this is done, Aine will see about her hearing and vision  (we know both are affected, but it is time to get things checked and I'm guessing get new ear molds because hers are the original set).

Liam has successfully earned his Black Belt and Shawn is working towards his!  Aine and I are both purple belts and will be back at training once the weather warms up and her food is switched.

Aine has also started dance class and will have a rehearsal in June.

We are absolutely sick of the weather and want it to warm up (we can deal with the snow - just not the cold)

Time to get treatments going!

Have a great day!!!

We are not sure what has struck the house, but Aine has had an on and off temp for over a week and Liam is now barking like a seal.

We did not end up going to Chicago this year; instead Liam will be getting a new sword.  Shawn and Liam would like to do a team form when they are both Black Belts. 

We had our first visit at Mayo which was a good visit.  We got all of her appointments setup, which we have needed to reschedule two of them already due to illnesses and another will be canceled tomorrow if the kids don't turn the corner :/

Liam is practicing for his youtube channel (he is very hopeful that he will get to start one - we'll let you know if happens.

Aine is practicing hard for her dance recital and anxiously awaiting her costume to arrive.

New Start!!

Well....

 We have finally made the leap of faith, and have started the venture of changing Aine's health care over to Mayo Clinic.  We had our first appointment yesterday which was a get to know you appointment and an appointment to figure out what Dr's she would be seeing there.

We got a very thorough history taken and a team of Dr's was set up and we are verifying the schedule of appointments.

I'm thinking it's going to be a crazy ride the first year; trying to figure out logistics and learning a new facility, but I feel good.  Good about our decision and good about the care that she is going to receive.

Thanks for all your well wishes, thoughts and prayers!!

Merry Christmas & a Happy New Year!!

I hope that your holidays have been wonderful and your new year is starting out well.

The kids have been have a great time with each other and spent most of the break playing with their new toys.

Liam is into Harry Potter and we are currently reading the books.  He was excited to receive some Lego sets from Harry Potter.

Aine is into Lego girls and hatchimals, so she couldn't get enough of her presents :)

Shawn is working towards running another marathon.  It's great to see him excited about running again.

Liam has earned his Black Belt and is working towards his 2nd degree.  He would like to start on the swim team - so we will be looking into that also. 

Aine has continued with Karate and added Dance to her exercise. 

She had 2 heart caths this year, both of which went well (there was a Major bump in the road on the first one, but we will discuss that at a later date).  Another winter without surgery :) :)

Shawn is working towards his Black Belt - he is guessing a years time.

I know that there's more, but I have Fibro brain right now, so I'll write again later!

I'm back in!!!

Hello!

I am so glad to say that I have finally gotten back into this blog! 
I somehow managed to lock myself out!

The kids are doing really well!

Aine just had a heart cath done and we were told that they are going to continue to monitor her so we will have to go back to her cardiologist in 3 months.

3 months ago Aine had an echo that lead us to the cath that was just done.

6 months prior to that Aine had a heart cath to check her pressures and and stints and/or balloon to allow her to go longer without surgery.

There were some complications post-op after recovery prior to discharge so she had to have a bronchial scope with this last procedure.

She is starting 1st grade this year and is pretty excited.  Since she has PID she is home schooled, which has been going really well. 

She competed again last year for Team (karate) and finished the year taking 2nd for her event!

She is now riding a bicycle (with training wheels) and working on her scooter - but that is too tall for her, so we need to find something that will work.

Liam is going to be doing a Lego team competition this year and is working towards his black belt in karate.

He also competed last year during Team and did Excellent.  He will be competing again this year; partially as an advanced brown belt and partially as a black belt.

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 :)

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!!

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.

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 :) )

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!!

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!!

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

WELCOME 2016!!

As we say goodbye to 2015, I look back at all the wonderful and amazing times we have had this year.

No matter how much I remember, I know I will always miss something - which will pop up as a splendid memory later.

Some of my most favorites at this time are:

Liam deciding to go to a Karate class and finding an activity that he enjoys so dearly he decided to join team when given the opportunity.  He was asked to be apart of the Master's Club and is working on being part of the Dojo Dudes as well as using kamas in one of his forms. 


Liam is doing great in school and learning to make wise choices for himself.  He loves to read and is really getting into writing.  He learned how to write his name in cursive to sign my birthday card.  (Yes, the tears were there).  He is growing up soo fast I don't feel like I can turn around without missing some awesome thing he has learned.

We unearthed rocks.  It was pretty cool!!

Aine has been doing soo much this year.  She also joined Karate and was asked to join the Master's Club.  She has since started using Nun chucks and is enjoying the ability to do what she wants to do.

She has been horseback riding, but took a necessary break which once weather conditions are verified she will be back in the saddle :)

Aine started walking on her own the end of October and hasn't stopped since!  She has started to ask to walk instead of being carried and is also walking up the stairs by herself!

She has had a bunch of testing and monitoring of her heart in the last month and will have further testing done in the next couple of months to finalize some information and then we will start processing and sharing that information.  But.... as of right now, her heart is as stable as her heart can be (another checkup will be in 3 months), her lungs sound good, her speech is progressing, her walking is Awesome! and her hearing is "getting better" as she now wears hearing aids while awake.

Waiting patiently for the doctor

Ready to get my hearing aids!

Sadly - none of the places we update are letting me upload videos (I'm calling not operator error - LOL!!!)

I will work on getting those loaded - or - I may have to get help from someone...

I hope you have a great 2016!!! 

June came and went - July is just about to do the same thing!

I have a hard time allowing myself to realize just how fast time is going.  It just seems to go faster everyday.

The kids are doing great - they are enjoying the summer, Liam is spending some time with his friends, they are continuing with karate, horse, and swimming.

Aine has been going to school once a week to get her back in the swing of things and working with another kiddo.   Liam has been working hard on his workbooks (some days are harder than others - like today), but we get through them :)

Aine will be having a CT scan as well as a barium study this week and we are hoping for good answers (Great heart function and no reflux).

We are getting used to having a second dog in the house again and are excited to see how she hunts. 

Shawn completed Warrior Dash but was unable to run Tough Mudder because of the storm that came through.  He is not happy about not running it, but will go again next year.  He has a few more runs this year with the soonest one being the firemans 5k.

Mixed Feelings

On Monday we lost a very special person in our lives.  Shawn's mom - my mother-in-law Sandi.

She was not only a Wife, Mother, Mother-in-law, Grandmother, Sister, Aunt, and Friend - she was a light during the sad times, a great ear, the rock to keep you planted on the ground, an honest answer and full of love.  There is no question in my mind that she will be greatly missed and that anyone that has had the honor of meeting Sandi will never forget her and will always smile when they think of her.

Knowing that Cancer was taking a toll on her body and causing pain makes it 0.0001% easier to handle that she has crossed through the pearly gates and is watching over all of us; but it really doesn't make it any easier because in reality it just plain sucks. 

A few of the things that I get sad about when I think about this fact:
I am:
short one person to tell good news to,
to kid with about moving closer to us,
to get a hug from,
to get a smile from,
to joke with about how much time something should cook,
to watch smile when my kids are around.

These are just a few of the thoughts that make me tear up.  Yesterday really brought these to light as Aine and I went to her 6 month cardiology appointment.  On a normal basis, I would tell Shawn and he would tell his mom, who would tell his dad - I can hear the pleased tone in her voice as they have a discussion and the HOT DOG!! coming out of his dad's mouth - but the reality of it.....  it Didn't happen!  Why???  cancer - that's why.

I try to remember that she Was with me - I brought her with, with a gift that was given to me.  A gift I would have never asked for, nor expected to receive.  A gift that I never realized she had given me the entire time we knew each other.  STRENGTH!  The strength to carry on even during the hardest times in our lives.  The strength to know when to fight, the strength to know when to call on someone whether they are "here" or not, the strength to stand tall even when others are trying to pull you down.  Strength is never a weakness - you just need to know what type of strength you need at that current minute and use it to the best of your ability.  Never give up - pursue what you want and never look back.

Today my thoughts have been all over the place, but most of them have gone directly back to Sandi.

The first day we met - she pointed out a sun catcher and informed me it was so no one walked through the screen door.
The first time she saw me without my shoes on (I wore heels way back in the day) and her comment - "MY! You Are short!!"
The first time I walked out of the dressing room while trying on wedding dresses and her face turned just enough to let me know she didn't like the dress. (I did Not get that dress)
The hug I received after Shawn and I said "I do"
The repeated looks at the bibs we gave them to announce we were pregnant with Liam.
The joy on her face every Christmas when we would walk into the living room and see her beautiful tree.  I was always amazed at how it looks - Stunning!
The joy she got in "hiding" that she was showing me something for Shawn or one of the kids.
The not so Awed face when she saw our Christmas tree which was decked out in retro ornaments and so flashy that it could probably be seen from miles away ;)
Our trip to South Dakota. (She posted and we Loved having her with us).
Sitting for hours at their kitchen table talking, laughing, and smiling.
And walking into a room and smelling her perfume.  It was always the same - Victoria's Secret.

I know she knows that Aine's appointment went well yesterday and that there are no changes from the echo that was performed 6 months ago.  That we will hopefully be able to do a chest CT scan without sedation (as long as no other procedures are needed).  That her cardiologist feels she looks the best she has ever looked and enjoyed seeing her so mature.

I will forever be grateful that I had the honor of meeting her, that she accepted me into her life and loved me like another daughter.

Love you Sandi! 

BRAG - BRAG - BRAG!!!!

It has been way too long since I let everyone in on what is happening in the Casey household.
We have had some major ups and downs, but many great times and accomplishments during that time and guess what!
Today is the day that I'm going to brag it up and show you what we have been loving to do! (you have been warned ;)

The Kids both had birthdays in April and Shawn and I celebrated our 11th Wedding Anniversary!

What more of a blessing could we ask for?

 

Maybe this crown that Aine received from school?

That's a HUGE accomplishment for this tiny tot!



 

How about being blessed with a support system that we have never met face to face??

 

THANKS BETH and FAMILY for the Wonderful surprise!

Liam even shared with his sister!

 

Another little glimpse of our happiness!

2 Birthday crowns, a wonderful bead from Beads of Courage, a couple reminders of Relentless 2015, and a Warrior Dash metal.

(The T-shirts Shawn wore would be here, but those are items that are returned to the families Shawn represents so they can pull strength from them as Shawn did during the race)

 

 

Karate!

Need I say more??

 

Liam and his one step performance

(a little blib of it anyways)

 

The kids showing how proud they are of themselves

(As they should be!)

a total of 2 awards each and a Great confidence booster!

 

 Liam receiving his yellow belt!

 

 

The trophies from the tournament in their home of honor

 

 

Liam finished Awana with glowing reviews.

(the blue lips are from Gatorade :) )

 

His hard work up close. 

The patch on the right is for finishing the starter book, the wings and gems are for completing all the verses in his primary book and having great attendance, the green patch on the left (behind the wings) is for completing his review (which was saying All of the verses in the primary book again.

and the face (Sparky) is for completing all of the extra credit cards in the extra credit book.

And last but not least the ribbon he received for completing his primary book!

 

 

Liam is playing soccer and loving it!

 

 A great way to remember where we have been and where we are going!

 

My mom gave Aine this angel after she was born for me to wear, I no longer wear it because the chain broke.  I know I could get another chain, but it doesn't feel right to.

The first rose Shawn gave me (it was in a bouquet of 12 but I didn't save them correctly and this is all that's left.)  2 hearts combined as 1

A half marathon metal and a relentless headband as a reminder that strength is not a weakness!

And last but not least a gold fish that was created by the hands of a kindergartener with a heart of gold!

 

Over the past year we have met so many wonderful people and feel very blessed with what has been put in front of us and the challenges we have over come!

Serious Business

I know it has been WAY too long since I have updated everyone on how things are going, and sadly that is going to have to wait as I have to get a Very serious issue off my mind.

Shawn and I have been dealing with a decline in Liam's attitude.  He has started to either be sad or angry ALL the time.  He is VERY oppositional and having nightmares to the point he crawls in with me as soon as he feels safe to leave his bed. 

The above is NOT my child.  He is a ray of sunshine (most of the time :0 ) who loves to test your knowledge, learn TONS, and enjoys spending time with his friends, playing with trains, super heroes/Star Wars, Angry birds, Legos, swinging, reading and did I say learning?

This serious business started to affect him in small slow ways - so small and slow that Shawn and I were questioning our parenting and starting to argue about what to do and change at home to make Liam change his behavior because I was at my wits end by the time Shawn would get home from work.

Liam and I were arguing soo much he would opt to read or go swing outside by himself instead of dealing with me constantly asking him to stop arguing with me.

I strongly believe that with the help of Karate, swimming, horseback riding, his teachers, friends and family Liam was able to finally make the correct choice - the choice???  To Stand UP for his friend, which lead to Standing UP for Himself!

You see, Liam and a friend have been being bullied on the bus. 

Why didn't we know about it? 

How did we Not know this was happening?

How could we blame ourselves for his change in attitude?

How could we not figure it out until now?

All of these are questions have been running through my mind and there is one key factor Shawn and I have never taught Liam.

That there is a difference - a difference between tattling and reporting.

Liam didn't want to tattle because that is wrong - and if you know him personally, you know he tries to always do the right thing.

However - what he didn't understand is that "telling me" (oooops - there's that tattling word!) about a problem is actually REPORTING it to me which is NOT wrong.

So.....   where does this leave things?

Well..... 

The problem is not resolved as of this time, but all things are moving in the direction that they should be.

Liam was HAPPY this morning when he left and actually hugged me last night in a super relaxed way.  He didn't have a nightmare last night and is excited that his sister and I will be picking him up today after school - because what better way to start the weekend???

How are we handling this?
1) We are using this as a learning experience
2) We are using this as an educational experience
3) We will be changing how we have conversations.  "It's OK to tell me" will no longer be used.     Reporting and tattling will now instead be used.
4) We will explain reporting better
5) We will explain tattling better
6) We will continue to discuss appropriate vs inappropriate behavior
7) We will continue to monitor his behavior and ask questions differently.

How will we ask this differently? 

Here are some examples of the NEW question format we will be using.

1) What was your favorite part of the day?
2) What was your least favorite part of the day?
3) Who did you sit by at lunch?
4) Who did you play with at recess?
5) What did you play at recess?
6) Who did you sit by on the bus?
7) Where did you sit on the bus?  (Seat or floor?)
If on the floor:  Why were you on the floor?
8) Did you move seats on the bus?
9) What made you move seats on the bus?
10) Did you play with toys on the bus?
11) Did everyone nicely give the toys back to who they belong to?

While I know that bullying has been around forever - there is no need for it, but keeping in mind that there is usually a reason that it is occurring everyone needs to work together to stop it in its track. 
As I tell Liam - Stop - Back up the freight train and think about it.  Don't repeat the negative - only the positive.

It is a parents responsibility to teach kids right from wrong, while utilizing the village to cement the positive behavior you have instilled in your own child.  Thank those that have helped you harden the concrete and make your foundation stronger.  Remove those that try to add too much water and ruin your hard work.

As an individual we can be stronger than we think we are and conquer a lot, but as a village we can pave the way to a bright future for our kids.

What can you do to help?

1) Don't feel sorry for Liam and his friends - commend them for doing the right thing
2) Stop and help at least one person EVERYDAY
3) Don't stand by and watch someone being bullied
4) SHOW your kiddos how they should act - please and thank you go a long ways
5) Act how you EXPECT your kids to act
6) EXPECT your children to act and treat others appropriately
7) Teach them it is OK to question things they don't understand
8) Teach them the difference between tattling and reporting
9) Know YOU can make a difference and the choice is Yours and your alone whether it is going to be positive or negative difference.
10) THANK those that help you, especially if they are apart of the village.
11) Apologize if you do something wrong.

There is another key part in all of this.

FORGIVENESS

You are the only one that will be able to truly heal yourself or affected family member.
Forgiveness is a huge part in the healing process and can also shed new light on a bad situation.

Because why let a negative situation water down thee concrete you worked so hard to pour?
You will become stronger and a better villager.

Please feel free to comment or share your personal stories, if they have been resolved, how they were resolved, and what you have learned from your experience.

Have a Great Weekend!!

Tired - Soooo Tired.......

I keep telling myself -
One day you will Not be soo tired
One day she WILL feel better
One Day......

That day will come.

Aine slept through the night, and has been able to bring up a lot of what is in her lungs.  I have been deep suctioning her to help and am very lucky that once we start she will lay with the line in her nose, because it is hard to mentally deal with deep suctioning her, so she makes it a touch easier by helping :)

She has only slept 1/2 of the day today, so that is also an improvement on yesterday :)

Her stats are about the same place that they were yesterday, but her color is way better than yesterday.

Thank you for all the prayers and good thoughts!!