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.