bad nights

We've been keeping real busy since getting home from the hospital, nothing to strenuous but just a lot of packing, ect.  We had a yard sale this weekend and Kaylie had her first lemonade stand ever.   She was sooo excited, and raked in $7.50, I think just enough to cover the supplies, lol.  We got rid of a lot of junk but wish we could have gotten rid of more.  We have the curbside alert with all sorts of free stuff, and the neighbors have been picking at it.  Katy and Kira came to help out, and spend some QT time with us.  That was really nice, and Alexa loves having her cousin nearby. 

Alexa has been having apnea on and off this past week, and she seems to be having more issues with maintaining a regular heartrate.  It keeps dropping real low, and slowly bouncing back.  Nothing we can really do about that, except sometimes I try to startle her a bit to get her heart going a bit faster.  We're trying to get an appointment with the autoimmune specialist,they referred us to while inpatient, but that seems to be a bit more dificult than it should be.  The secretary told me I would of had more luck just staying inpatient and having him consult on Alexa then.  Apparently she's never had a kid inpatient before.  They give you the option to leave you run with it!  Poor kid doesnt need to stay a moment longer than absolutely necessary.  Hopefully this week they'll be able to fit us in.  We also changed her formula which is a prescription that gets sent over to Alexa's medical supply company.  We have had nothing but problems with her supply company.  Not sending things when they should, having to call and check on our orders constantly, and feeling like I have to watch everything they do.  You would think that since they're dealing with medical life supporting equipment they would be a bit more professional...  No such luck.  Anyway this past week I literally spent about 4 hours total making sure we were able to get her formula.  Basically doing their jobs for them, and finally on Friday (5 days after discharge) we got our formula.  These things should not be such a hassle, we have enough on our plates.  I shouldnt have to call each of Alexa's 18 specialist 3-4 times to get an appointment.  I wish there was some way to streamline the whole process.

I think the excitement of having her cousin here and being outside in the heat today really affected our poor girl.  She must of aspirated something at some point today, because she is having a horrible night.  I moved her into our room because she's been needing suction every 15-20 min.  I feel so bad for her.  She hates being suctioned, but it gets to a point where you can see the relief in her eyes when she sees the suction coming to help her.  She just gives up trying to get her thick secretions out, its like she loses all energy to even try to expel it and lays back to let it do what it will do.  If it werent for me being right there and being able to suction her she would be dead!  That's absolutely terrifying.  I hate seeing her give up like that.  It tears me up inside because I know how much of a fighter she really is.    She also is having constant apnea, needing some vigerous stimulation.  If we hadnt just gotten discharged from the hospital I'd bring her back.  We need to be able to manage this on our own, I just get so scared that one of these times I'll be to late or unable to get her to breathe on her own.  I just dont know what more I can do to make Alexa more comfortable, and make her nights a little better..

I can tell that lately shes been getting a bit weaker.  Tonight while dealing with her secretions she had no neck control what so ever.  Also she's been having more and more frequent times where she's stumbling around.  I like to call her my little drunken bum when she gets like this.  Its like she loses all her coordination.  And she seems to be having a harder time getting herself up.  Now it's not like this all the time, but I've just been seeing it a lot more lately.  Also her ptosis (droopy eyes) have been much more significant.  I can usually tell what sort of day she'll have by the droopiness of her eyes.  So many people have commented on how tired she looks.  I've stopped explaining that she always looks like that and will sometimes just smile or say ya she's probably ready for a nap. 

We were able to do a couple of fun activities this week.  Other than follow up doctor appointments, and packing.  I took the girls to this pottery painting place, and we each made our own plates.  What a nice rainy day activity.  I was able to get a great groupon on it and it was half off.  I also recieved a 25 gift certificate to get pictures at walmart, so I took the girls in their tutu's and got pics.  We were only able to get 2 pictures I didnt realize how expensive walmart pics could be, but hey it was free for us.  The lady taking the pictures commented that the girls look so different and proceeded to ask me if they had the same father.  umm lol....  If she had seen Kevin with the girls, there would be no denying Kaylie's paternity.  Alexa...  well she doesnt really look like either of us, but she is all ours. 

Playing on her swing, I hope we have a tree to hang their favorite swings from

Kaylie and I have been studying Egypt this week.  I need to find a museum with some good Egyptian history, maybe with some mummy's and hieroglyphics or some nice ancient artifacts.  She made an awesome sugar cube pyramid.  I love doing these projects with her, and it gives us some great one on one time, which she so desperately craves.

I feel like I've been on a downward spiral lately, and I'm trying desperately not to go back to that place.  I've just been feeling sorry for myself , and I need to cut it out.  Yes, there have been many disappointments lately, but nothing we cant deal with.  I just wish I knew the future so I could see where our lives were really going.  It's so hard not knowing...  I know, I know no one really knows how their life will be, it's just that I feel like I'm always waiting for the other shoe to drop.   

The girls love their wagon!