We would like to wish everyone a safe and happy fourth!
We went for a bike ride earlier this morning (Liam is working on riding his 2 wheel bike because he wants a motorcycle). And we have so far spent the rest of the day going on missions and checking out the garden.
Shawn is going to grill tonight (can't wait!!) and we will see if we can see any fireworks from the house.
We also are excited because we got chosen to be the featured family on Coles Foundation.
We just started with them, so there isn't many journal entries, but feel free to check it out! There are some cute pictures that haven't been posted here :)
http://www.colespages.org/
Again Happy 4th & be safe!!!
Friday, July 4, 2014
Thursday, June 5, 2014
Loss
I have come to realize in the last months that loss, no matter how big or small is difficult to deal with.
In the last couple months we have lost a lot, which has become hard for me to deal with, making it hard for me to keep up with our blog. This in itself makes me sad because I love looking back and seeing all the cool things my kids have done. That they don't just do medical things.
We had a medical student come into our lives to see what it is like to live with a medically complex child. She was fun to talk to, always had a smile on her face, and enjoyed being around the kids. We tried to show her many sides of our lives before we had to say the inevitable good bye.
The kids are getting older, which means they are moving on to different things. Aine had to say good bye to gymnastics because of her hyper mobility, Liam said good bye to his first teacher, Aine said good bye to the birth to 3 program, I have had to start coming to terms and say good bye to half days with Liam, and having to say good bye to Aine and leave her in the care of others for 2 hours twice a week.
We have had to say good bye to an awesome delivery guy as today is his last day because he is moving. As strange as it may seem to some, you become friends with the people who deliver you child's medical items, take their orders, make their appointments, and check them onto their appointments, they almost become an extension of your medical family.
We have had to say good bye to people that we have never met before, only talked to on the phone.
We have said good bye to our cat.
We have said good bye to a pretty cool aunt, who I wish the kids could have spent more time with. I learned a lot from her when I was little and got a ton of creative ideas from her.
We have said good bye to shoes, books, and other misc treasures (it can be rough being a kid at times).
Through all this, the small things have started to look like big things. The future looks bright, but the future good byes create a heavy heart because they will be coming too soon.
I have made a promise to myself that I will catch up on our blog so the kids can see the cool stuff they got to do, ballets, football camp, horse back riding, plays, and the list goes on.
Because, that is also what the past few months have brought us. And the future will only bring us more happiness.
In the last couple months we have lost a lot, which has become hard for me to deal with, making it hard for me to keep up with our blog. This in itself makes me sad because I love looking back and seeing all the cool things my kids have done. That they don't just do medical things.
We had a medical student come into our lives to see what it is like to live with a medically complex child. She was fun to talk to, always had a smile on her face, and enjoyed being around the kids. We tried to show her many sides of our lives before we had to say the inevitable good bye.
The kids are getting older, which means they are moving on to different things. Aine had to say good bye to gymnastics because of her hyper mobility, Liam said good bye to his first teacher, Aine said good bye to the birth to 3 program, I have had to start coming to terms and say good bye to half days with Liam, and having to say good bye to Aine and leave her in the care of others for 2 hours twice a week.
We have had to say good bye to an awesome delivery guy as today is his last day because he is moving. As strange as it may seem to some, you become friends with the people who deliver you child's medical items, take their orders, make their appointments, and check them onto their appointments, they almost become an extension of your medical family.
We have had to say good bye to people that we have never met before, only talked to on the phone.
We have said good bye to our cat.
We have said good bye to a pretty cool aunt, who I wish the kids could have spent more time with. I learned a lot from her when I was little and got a ton of creative ideas from her.
We have said good bye to shoes, books, and other misc treasures (it can be rough being a kid at times).
Through all this, the small things have started to look like big things. The future looks bright, but the future good byes create a heavy heart because they will be coming too soon.
I have made a promise to myself that I will catch up on our blog so the kids can see the cool stuff they got to do, ballets, football camp, horse back riding, plays, and the list goes on.
Because, that is also what the past few months have brought us. And the future will only bring us more happiness.
Friday, April 4, 2014
Three years!!!!
There are soo many things to be thankful for and celebrate today.
Aine was born 3 years ago today!! (Boy was That a stressful day for many)
We met Alot of people that have become near and dear to us. Some of which have moved onto bigger and better things and some that are still in our lives in a consistent basis.
Aine has defeated many obstacles that have been placed in her way and exceeded the expectations of many.
We have grown stronger as a family and discovered what true friendship and hardships are.
It may seem odd that I'm not talking more about her birthday, but to put it out there, this is more a day for me to give thanks to the team of people who have been there for us. Holding our hands when we need it, carrying us when times have gotten extremely tough, and flat out saving our daughter's life. Which in turn allowed her to be with us three years later.
There is a day coming up that seems to be of Aine's day to me. That will be coming in July 3rd. Many of you know this as her Gotcha Day. After 3 LONG months in the hospital, Aine was finally able to come home with us. No matter how unstable she was at that time, she Came home. That is the day my heart fully opened up to her and a day that has become to me a huge day to celebrate Aine.
So, that being said, I celebrate twice. One is remembering how hard the Drs and staff worked to help her and remembering to thank them for a job well done, as well as remember how strong Aine is. The other is to celebrate her New life At home.
We are blessed to have her in our lives, and hope you will help celebrate her strengths and courage as well as the work all her staff has done to help us get her where she is today!
Aine was born 3 years ago today!! (Boy was That a stressful day for many)
We met Alot of people that have become near and dear to us. Some of which have moved onto bigger and better things and some that are still in our lives in a consistent basis.
Aine has defeated many obstacles that have been placed in her way and exceeded the expectations of many.
We have grown stronger as a family and discovered what true friendship and hardships are.
It may seem odd that I'm not talking more about her birthday, but to put it out there, this is more a day for me to give thanks to the team of people who have been there for us. Holding our hands when we need it, carrying us when times have gotten extremely tough, and flat out saving our daughter's life. Which in turn allowed her to be with us three years later.
There is a day coming up that seems to be of Aine's day to me. That will be coming in July 3rd. Many of you know this as her Gotcha Day. After 3 LONG months in the hospital, Aine was finally able to come home with us. No matter how unstable she was at that time, she Came home. That is the day my heart fully opened up to her and a day that has become to me a huge day to celebrate Aine.
So, that being said, I celebrate twice. One is remembering how hard the Drs and staff worked to help her and remembering to thank them for a job well done, as well as remember how strong Aine is. The other is to celebrate her New life At home.
We are blessed to have her in our lives, and hope you will help celebrate her strengths and courage as well as the work all her staff has done to help us get her where she is today!
Sunday, January 26, 2014
Polar Plunge
I think it is a well known fact that I CAN'T stand the cold.
I don't have much protection from the elements and get frozen to the bone Very quickly.
While talking to a friend last year about wanting to help out in any way I can, she asked if I would ever consider doing the polar plunge. Now, I have thought about it many times, but I have this problem with being cold and not being able to touch the bottom while in the water.
I told her I would like to, but also told her of my concerns.
It has now been a close to a year and the subject has resurfaced since the polar plunge is right in front of us. So..... The question is, do I take the plunge or not????
That is when I was told about the Dairy Queen team putting together an awareness project which will hopefully involve
Ian Somerhalder from Vampire Diaries.
If they can get 10,000 likes he may plunge into the cold waters with the DQ team.
I being who I am, opened my mouth and said I would jump also if they get the likes they need and i
f Mr. Somerhalder is there i will bring Aine to hopefully meet him.
So... This is where You come in.
Do you want to see me jump???
Do you want to help Aine possibly meet an actor?
It's Super easy to do.
Just like the page "Hey Ian come plunge". (It has The DQ team as a picture) and post the like request onto your page. Feel free to send them here to find out more information. Or... C tact the DQ team to get even more details!!
Thanks!!!
I don't have much protection from the elements and get frozen to the bone Very quickly.
While talking to a friend last year about wanting to help out in any way I can, she asked if I would ever consider doing the polar plunge. Now, I have thought about it many times, but I have this problem with being cold and not being able to touch the bottom while in the water.
I told her I would like to, but also told her of my concerns.
It has now been a close to a year and the subject has resurfaced since the polar plunge is right in front of us. So..... The question is, do I take the plunge or not????
That is when I was told about the Dairy Queen team putting together an awareness project which will hopefully involve
Ian Somerhalder from Vampire Diaries.
If they can get 10,000 likes he may plunge into the cold waters with the DQ team.
I being who I am, opened my mouth and said I would jump also if they get the likes they need and i
f Mr. Somerhalder is there i will bring Aine to hopefully meet him.
So... This is where You come in.
Do you want to see me jump???
Do you want to help Aine possibly meet an actor?
It's Super easy to do.
Just like the page "Hey Ian come plunge". (It has The DQ team as a picture) and post the like request onto your page. Feel free to send them here to find out more information. Or... C tact the DQ team to get even more details!!
Thanks!!!
Saturday, December 21, 2013
Lots and lots..... Part One
I have .... To be perfectly open, been putting this post off.
There are a lot of things we have to be thankful for, but a lot of things that are Not going our way.
As you know Aine had a swallow study in October and we were told to Stop giving her anything orally because of her immediate aspiration. We were told that we needed to wait to talk to the ENT to find out what to do next.
Well... What happened next is Aine was sick for almost 8 weeks. This is not fun with a heart healthy kiddo and even less fun with a kiddo who doesn't have a healthy heart. She would start to get better only to get even sicker the next time. Luckily we have been trained to take care of her and have most of the equipment to do this safely at home and monitor her extremely carefully that we were able to keep her home and get her better.
We stopped therapies, swim classes, gymnastics, and pretty much everything else during that time because she just couldn't handle it. It was hard to watch her sleep All The Time, Cry all the time, and just not want to do anything.
To top it off, I decided to try a different diaper because they didn't have her diaper where I was and she ended up with a nasty diaper rash ):
We got finally got her healthy and were able to keep her cardiology appointment. Thankfully her heart is "stable". This means different things in different situations. In our case it means that the pressures in her heart that we are watching haven't risen that much (awesome news), there hasn't been a ton more narrowing (awesome news), and we will be seeing her cardio dr again in 6 months.
Now.... This doesn't mean that there hasn't been changes, because there HAS. Her pressures have gone up and the narrowing has continued, just not at the rate they were expecting it to occur. This has gained her at least an additional 6 months knife free. We are hoping she can go 5 years or more, but only time will tell.
When she has to have heart surgery again, she will more than likely have to have open heart surgery because she is too small to have anything other. We are still looking at 2 more OHS because of her size.
Moving onto her size. Since she hasn't grown much in the past year she has gone from the 5th percentile down to the 1st percentile. This could be due to the DiGeorge syndrome, her heart, or ????. Which causes a problem as mentioned above.
She has been moved from the c-pap machine to the bi-pap machine because her apnea needs more support than the c-pap was offering her. She is doing well with it and for the most part seems to enjoy sleeping with it on.
I talked to her ENT and he has requested we try to give her water and see what she does as well as start a stim therapy with her. This therapy will hopefully help her muscles thus helping her to swallow. Tonight Brittany and I gave her water and she immediately aspirated it.....
I talked to her speech therapist and we are going to continue with the talker demos and once we are done with those we will start feeding stim therapy which is a grueling process. We will be traveling to the clinic up to 4 times a week to work with the therapists in an attempt to help her learn to swallow. During this time there will be electrodes hooked up to her throat to help stimulate the muscles in her neck.
I will be blunt - I am scared beyond scared of how she is going to react to this. I know she wants to eat (or at least have the flavor), but I don't want her to be hesitant at all when it comes to food.
There are a lot of things we have to be thankful for, but a lot of things that are Not going our way.
As you know Aine had a swallow study in October and we were told to Stop giving her anything orally because of her immediate aspiration. We were told that we needed to wait to talk to the ENT to find out what to do next.
Well... What happened next is Aine was sick for almost 8 weeks. This is not fun with a heart healthy kiddo and even less fun with a kiddo who doesn't have a healthy heart. She would start to get better only to get even sicker the next time. Luckily we have been trained to take care of her and have most of the equipment to do this safely at home and monitor her extremely carefully that we were able to keep her home and get her better.
We stopped therapies, swim classes, gymnastics, and pretty much everything else during that time because she just couldn't handle it. It was hard to watch her sleep All The Time, Cry all the time, and just not want to do anything.
To top it off, I decided to try a different diaper because they didn't have her diaper where I was and she ended up with a nasty diaper rash ):
We got finally got her healthy and were able to keep her cardiology appointment. Thankfully her heart is "stable". This means different things in different situations. In our case it means that the pressures in her heart that we are watching haven't risen that much (awesome news), there hasn't been a ton more narrowing (awesome news), and we will be seeing her cardio dr again in 6 months.
Now.... This doesn't mean that there hasn't been changes, because there HAS. Her pressures have gone up and the narrowing has continued, just not at the rate they were expecting it to occur. This has gained her at least an additional 6 months knife free. We are hoping she can go 5 years or more, but only time will tell.
When she has to have heart surgery again, she will more than likely have to have open heart surgery because she is too small to have anything other. We are still looking at 2 more OHS because of her size.
Moving onto her size. Since she hasn't grown much in the past year she has gone from the 5th percentile down to the 1st percentile. This could be due to the DiGeorge syndrome, her heart, or ????. Which causes a problem as mentioned above.
She has been moved from the c-pap machine to the bi-pap machine because her apnea needs more support than the c-pap was offering her. She is doing well with it and for the most part seems to enjoy sleeping with it on.
I talked to her ENT and he has requested we try to give her water and see what she does as well as start a stim therapy with her. This therapy will hopefully help her muscles thus helping her to swallow. Tonight Brittany and I gave her water and she immediately aspirated it.....
I talked to her speech therapist and we are going to continue with the talker demos and once we are done with those we will start feeding stim therapy which is a grueling process. We will be traveling to the clinic up to 4 times a week to work with the therapists in an attempt to help her learn to swallow. During this time there will be electrodes hooked up to her throat to help stimulate the muscles in her neck.
I will be blunt - I am scared beyond scared of how she is going to react to this. I know she wants to eat (or at least have the flavor), but I don't want her to be hesitant at all when it comes to food.
If you haven't read lots and lot part one, please do so before reading this one,
For some reason I couldn't post anymore to the first one.
So.. In talking to Aine's ENT, he said it is not common for a child to go backwards int heir swallowing ability, but it has been reported, so we will move forward with the therapies and see what happens. No promises, no false lights at the end of the tunnel - just - try and see.
There are also a ton of unanswered questions which will hopefully come to light soon.
In a brain MRI, the damage that I feared became a reality. Due to the lack of oxygen she does have grey matter, which could or could not be causing some of her delays - we may or may never find out the these answers.
During this MRI it was also discovered that there is probably a fusion between C2 and C3 which would be a sign of KFS. They want to wait until she is older to determine if it is going to pose any problems for her. KFS would answer many of the questions that have arisen about Aine.
And.... During all this, Aine has become self destructive. If you see her forehead with scars or scabs on it, it is because she has done that - for some reason - unknown to us. We are working on finding out why she is doing it, but until then the least amount of focus that is put towards the marks the better.
Liam has started his regression stage. I was hoping that we were going to be the lucky ones that didn't have to go through it, but that sadly is not going to be the case. He will throw tantrums, hit, kick, and cry. We are working on it and it is getting better, but we still have our bad days.
We again ask for patience if we don't get back to you or don't call. We think about everyone all the time and wish and pray that you are doing well but as you can see time is getting the best if us. But this being said, don't hesitate to call, drop a line via FB, Pinterest, text, or any other way you prefer. We Love to hear from you and appreciate it.
Now.... I must be a broken record.
If you are sick or have been around anyone that is sick. PLEASE Do Not Visit.
With everything Aine has had to go through in the last couple months I want her to be home for Christmas. She got to see Santa today and told him she was a good girl (she has been a GREAT girl) and that she would love to be surprised with something from him.
During the cold and flu season, if you are healthy and want to visit, you MUST have your flu shot.
If you are coming her, washing your hands upon entering, removing your shoes, and being ok with vinegar smell are a necessity also.
We again appreciate your understanding.
The Casey's
I would also like to send prayers out to some heart families that will be celebrating without their loved ones this year.
Baby Joy and Baby Zachary have been called back to celebrate Christmas in heaven this year.
We send love and prayers to their families.
For some reason I couldn't post anymore to the first one.
So.. In talking to Aine's ENT, he said it is not common for a child to go backwards int heir swallowing ability, but it has been reported, so we will move forward with the therapies and see what happens. No promises, no false lights at the end of the tunnel - just - try and see.
There are also a ton of unanswered questions which will hopefully come to light soon.
In a brain MRI, the damage that I feared became a reality. Due to the lack of oxygen she does have grey matter, which could or could not be causing some of her delays - we may or may never find out the these answers.
During this MRI it was also discovered that there is probably a fusion between C2 and C3 which would be a sign of KFS. They want to wait until she is older to determine if it is going to pose any problems for her. KFS would answer many of the questions that have arisen about Aine.
And.... During all this, Aine has become self destructive. If you see her forehead with scars or scabs on it, it is because she has done that - for some reason - unknown to us. We are working on finding out why she is doing it, but until then the least amount of focus that is put towards the marks the better.
Liam has started his regression stage. I was hoping that we were going to be the lucky ones that didn't have to go through it, but that sadly is not going to be the case. He will throw tantrums, hit, kick, and cry. We are working on it and it is getting better, but we still have our bad days.
We again ask for patience if we don't get back to you or don't call. We think about everyone all the time and wish and pray that you are doing well but as you can see time is getting the best if us. But this being said, don't hesitate to call, drop a line via FB, Pinterest, text, or any other way you prefer. We Love to hear from you and appreciate it.
Now.... I must be a broken record.
If you are sick or have been around anyone that is sick. PLEASE Do Not Visit.
With everything Aine has had to go through in the last couple months I want her to be home for Christmas. She got to see Santa today and told him she was a good girl (she has been a GREAT girl) and that she would love to be surprised with something from him.
During the cold and flu season, if you are healthy and want to visit, you MUST have your flu shot.
If you are coming her, washing your hands upon entering, removing your shoes, and being ok with vinegar smell are a necessity also.
We again appreciate your understanding.
The Casey's
I would also like to send prayers out to some heart families that will be celebrating without their loved ones this year.
Baby Joy and Baby Zachary have been called back to celebrate Christmas in heaven this year.
We send love and prayers to their families.
Tuesday, October 22, 2013
Swallow Study
For those that have not seen a swallow study, I'm sorry that you have never been able to see the amazing body work (or not work).
For those that have seen a swallow study, I'm sorry that you have had to watch the person you love go through one but hope that you found the same ahh in it that I do every time Aine has to have one done.
I've heard that there is this happy feeling that comes over a person as they watch the barium go down their throat and into their stomach, not into their lungs where it doesn't belong.
I've heard, never felt this happiness for Aine's most recent swallow study was a fail......
She was given applesauce with barium in it twice and aspirated it both times into her lungs. No visible trace going into her stomach ): they will be reviewing the film to see if any went into her stomach, but the multiple aspiration puts her back on the NPO list (nothing by mouth).
Now.... What does this mean for her future? Really, just that nothing changes. Se is still super lucky that she can sleep AND eat at the same time and not waste any precious calories eating.
I wish I could say more about it, but I don't have all the answers. They don't know if it is because of the DiGeorge syndrome, lack of usage, palate issues, or neurological issues. Maybe one day we will have more answers, but right now - it is what it is and we are blessed with every day whether it is filled with smiles or the case of the grumpies.
For those that have seen a swallow study, I'm sorry that you have had to watch the person you love go through one but hope that you found the same ahh in it that I do every time Aine has to have one done.
I've heard that there is this happy feeling that comes over a person as they watch the barium go down their throat and into their stomach, not into their lungs where it doesn't belong.
I've heard, never felt this happiness for Aine's most recent swallow study was a fail......
She was given applesauce with barium in it twice and aspirated it both times into her lungs. No visible trace going into her stomach ): they will be reviewing the film to see if any went into her stomach, but the multiple aspiration puts her back on the NPO list (nothing by mouth).
Now.... What does this mean for her future? Really, just that nothing changes. Se is still super lucky that she can sleep AND eat at the same time and not waste any precious calories eating.
I wish I could say more about it, but I don't have all the answers. They don't know if it is because of the DiGeorge syndrome, lack of usage, palate issues, or neurological issues. Maybe one day we will have more answers, but right now - it is what it is and we are blessed with every day whether it is filled with smiles or the case of the grumpies.
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