Finally some good news. We found a house to rent... From a friend of the families, who is super nice, and I think will make a great landlord. The house is rather small so that just means we have to be very organized, and try to condense things a bit. The girls will be sharing a bedroom which I was a bit weary about, only because Alexa gets up so frequently. But we're going to try to make it all work. We're looking to get bunk beds to maximize space. They even have those ones that have a desk and shelves underneath, so hopefully we can find one of those at a reasonable price. Craigslist is great to find things like that though. It will be so nice being close to family, and friends. I feel as though a huge burden has been lifted. Now we just have to pack and get everything ready. I'm thinking we need to have a huge yard sale to get rid of some of this junk. Someone else might find it useful. Hopefully we'll be able to save for a new downpayment and be ready to own again in 3 years. At least thats the plan.
Kaylie had a fantastic birthday party at Chuck e Cheese. She tells everyone she meets about it, and even wore her crown long after the party ended. We love that we could make her day special. Thank you to everyone who helped make her day great. Alexa had fun too. They had this little telletubbies ride that she loved, and she refused to go on anything else. I think she might have gone on it like 25 times, lol. Good thing it wasnt a ride anyone else seemed to like. Silly kid.
Alexa was so exhausted after the party and the days we spent at Meme and Poppy's that she hasnt been able to do much since we got home. We believe she must have aspirated something on Sunday, because she had a horrible night with all her nasty thick secretions. Kevin had to work, and he left her suction and cough assist machines in the car. It was terrifying trying to help her get all the secretions out manually. I almost called 911. She just wanted to give up, and lay back down. We managed though, and avoided another hospital stay. I hate having to go in for anything like that, because all the doctors like to run all sorts of tests while she's there, and it seems we're there forever.
On Monday Alexa and Kaylie had eye appointments that lasted nearly 4 hours! I didnt realize that this would be an all day affair.Kaylie ended up needing a new prescription... $400 yikes! And that was just for the lenses... Although her depth perception is doing much better, her vision is a little worse overall. Alexa was looked at for a few reasons. The doc checked the retinas to see if there was any cilia damage. From what he can see it looks good, but he would need to put her under in the OR for a better diagnosis. We'll hold off on that. He said if we have to go into the OR for anything else then he'll do it then. It's so funny because thats what all her docs say. There are so many tests they'd like to get done, but only if she is going into the OR already. Since anasthesia is such a big risk for her. The other issues the doctor looked at was her ptosis (droopy eyelids) which he took a ton of pictures of. If they get much worse she might need an eyelid lift, it could damage her eyesight if not enough light is being let in. I got a little chuckle out of that because isnt an eyelift something old ladies get to look younger, here I am talking to the doctor about my 18 month old getting it done. Just had to laugh. Also with Noonans there is a high chance of vision problems, so we have to really monitor her, but her eyesight appears perfectly normal. Yay! Just going to go back every 6 months for followups.
Last week we met with someone from WRCP through early interventions. She helps the families of kids with critical or complex problams. She was such a huge help, explaining all the different programs we're eligible for. There is so much paperwork involved with everything, and she kinda streamlined a lot of it. Some things she told us about sound like they would really help out. Like having an insurance coordinator to help sort out all the billing and insurance issues. That would of been nice a few months ago, but will still be very helpful. A case manager to help manage all Alexa's care. Something I'm really excited about is something called dream day camp. Its for the entire family of children with life threatening illnesses to go out to a log cabin for a week where they plan activities and handle the food, and just give us some respite from everything. There are medical staff on site, and we'd be with a bunch of other families going through some of the same things we are. Also she plans a bunch of things for everyone in the program to get together and do stuff. Apparently she will help more once Alexa is no longer in early interventions at age 3.
Left my camera at my parents house so no pictures this time.
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