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.
Saturday, December 21, 2013
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.
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