We have been super busy since the last time I posted & I will do my best to not let time lapse like this.
Aine has had her ups and downs since the last post -
She has started to bear weight on her legs & is pulling herself up to a stand (she is not using furniture, but will grab ahold of your hands & pull with her might to get up and then give you the Biggest smile you've ever seen.
She has also started to laugh - it's super cute & I make her do it all the time, but the silly thing is; once she sees Shawn she will do anything in her power to not laugh.
She is still refusing to roll over ??? but is working on sitting up from laying down so it's progress on some level.
We're still doing OT/PT with her, but it has been pretty sporatic because of her health and other concerns but hopefully we can get that back into full swing soon.
Liam is also growing by leaps and bounds.
He will be starting Pre-school in Sept. He's super excited to start & can't wait to meet his teacher.
He got a metal in tumbling class last week & is pretty happy about that.
He jumped into the pool yesterday and swam back to wall by himself! Huge accomplishment (He was swimming with a noodle just the other week).
He has also started working on playing the violin :)
Shawn is still preparing for the 10k that is coming up for special olympics.
Now for the "downs" I mentioned earlier....
Aine has gotten some tests done & may have some further testing done, I don't however know what at this time because I'm waiting for the phone calls to come on Monday.
She has delevolped a rash that looks like mosquito bites. When they show up they come in batches & these batches have showed up 3 times now.
A biopsy of one of the spots has been done & they have narrowed the cause down.
They have not given me a "final" diagnosis, but sound pretty sure that it is a syndrome called Sweet's Syndrome.
I don't know a ton about the syndrome yet & I don't know what this mean for Aine, but what I can tell you is this:
1) It is NOT contagious
2) It is reoccuring
3) The spots hurt when they errupt (but she will not show you this)
4) It is Not curable :(
5) She will have this for the rest of her life
6) It will scar her
As with any of the other things that have made Aine who she is - this is Not who she is, just what has made her the strong little girl that she has already become.
So... The question comes - why do I share this piece of information if I don't what you to think about it when you meet & see her?
I don't want knee jerk reactions of pulling away - she doesn't understand them..... she's a baby.
I would rather receive questions than stares
I would rather have you understand than fearful of asking question.
So... That being said - ask - I'll do my best to answer & if I don't have the answer, I'll do my best to find it.
Prayers:
Little Liam Lyon - We pray that you do well on the "home" vent so you can be transported to Cinncinatti when they are ready for you!
Vivica - We pray that the right nurse walks through your door & that you continue to do soo well with your heart transplant (prayers for the donor family also!)
Prayers to all those that need them - big or small - allow them to be answered!
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