The long weekend seemed to come at the perfect time. Right when we were desperate for some quality family time Kevin miraculously had 3 days off. That NEVER happens. For the first time in a long time we were able to feel like a "normal family" whatever that is. On Saturday I was able to go on a mother daughter date with Kaylie we went to see Kung Fu Panda 2 she loved it, laughing the whole time. I think she especially liked having me all to herself. On Sunday we went to an outdoor flea market, and although we didnt get anything other than a few books it was nice being out walking around with other people, and Kaylie enjoyed having some fried dough, yummy! Monday was the best as we picnicked at our favorite spot the waterfall. We were able to watch a couple of movies together, and I even had a glass or 2 of wine. Kevin gave me a special treat and one night I was able to take sleeping pills and slept for 8 hours straight, while he was on baby duty. We were all able to leave the weekend feeling rejuvenated. 
Alexa has had a pretty good week. She seems to be gaining so many new skills all at once it is so exciting. I think I heard her approximate the words I love you which sounds like I-O-oo. What music to my ears. She now verbalizes uhoh, ow, un unh for no, she wasnt able to say any of this a few weeks ago. She is also learning sign at a rapid rate, faster than we can keep up. We're working on learning all the animals right now. She loves taking care of her baby dolls, wrapping them in blankets and cuddling them, and kissing their heads. She is so sweet natured, but has such a funny little impish streak as well. She loves to hide things, or shut my lap top or grab a book and try to hide in the corner with it. She does this all with a silly grin on her face. So even when we get frustrated it's hard to keep a straight face with her because she is constantly making us laugh.
Alexa has been having episodes where she has no control of her legs. We'll stand her up and she falls right back down. It's like she gets very uncoordinated and loses the strength to stand and walk. These periods dont usually last that long, and usually after some rest she is perfectly fine again. It's just scary, because when this happens I feel like we're seeing her future. We also found out that Alexa is allergic to mosquitos, and yes I know everyone has some sort of reaction to them but she swells up and they are bright red, and warm. We realized that this is why her right eye was all red and swollen. She also got bit on her foot and we couldnt fit her foot in her sandals it was sooo swollen. Benadryl seems to help. Funny thing though is Alexa is allergic to bug spray... She is also allergic to sunscreen which we learned the hard way now that she has hives covering her entire body. We should have known because she is allergic to shampoos and detergent and basically everything else you can possible put on your skin. I think I'm going to have to buy stock in California baby as they have the best hypoallergenic baby products. 
The house hunt has been pretty fruitless, but as I was writing this someone returned our call and he seems like he would be a wonderful landlord. It's in Wareham a little further than we would have liked from Kev's work, but its super close to the beach we could walk there and thats a plus. Hopefully when we look at it we fall in the love and the landlord likes us too. I never realized how few houses there are for rent... Toby hospital is just a mile down the road, and that would be perfect if we ran into any emergencies. Alexa has a week of appointments next week. Nearly everyday we have something, yuck. Although I am looking forward to seeing her GI/motility doctor. As it seems she is still not doing well in the weight department. Also she has been refusing all foods, and even turns her nose up at the pediasures now. Her occupational therapist brought me a feeding book to see if it will give me any tips, and help with the process. I havent had time to sit down and read it yet. She also sees her pulmonologist and hopefully we'll be able to get the sleep study results then. Her respiratory infection seems to finally be going away. Thank goodness. Although we still need to keep up with her cough assist treatments, but not as many times a day and hopefully dont have to do any PRN treatments. I'll try to get a video up of that.
This week when we go to all Alexa's appointments I have to try to remember to bring my camera. The thought is that if I take pictures every step of the way, like a picture of her sitting in the car, the parking garage, the entrance to childrens, the ball machine in the front (Kaylie's favorite), the elevator, the doctor... you get the picture. Anyway if I put it into a picture book, it might help ease her fears a little bit. That way she feels like she knows what is going to happen next and that eventually we leave. Alexa has a real hard time letting anyone touch her after these appointments, and we want to ease that transition a little better. I want to write down all the specialist, doctors and therapists she sees so that maybe you can understand her fear of new people a little better.
Pediatrician Dr Sola-Gomez (we will not miss him when we move, terrible bedside, terrible doc) thankfully we limit visits to him and just see all her specialist instead.
GI/motility Dr. Nurko (wonderful) every 2 months
Neuromuscular Dr. Kang (love him) every 3 months
Cardiologist Dr Willers (best cardiologist ever) every 3 months
Genetecist Dr Picker every 6 months
Noonan specialist Dr Roberts every 6 months
Interventional radiologist (tube change) every 6-8 weeks
ENT Dr Lee and another audiologist every 2 months- 6months
Eye doctor Dr Weisberg every 6 months- 1 yr
Nutritionist Kaitlynn every 3 months
Complex care team Boston every 3-6 months
OT/PT weekly
Speech therapy weekly
RN visits monthly
Clarke school early learning hearing specialist every other week
critical care kids from early interventions monthly?
hopefully soon we'll be able to meet with a family sign language teacher
So as you can see she has many many appointments and sees so many people who want to poke and prod her. She has such little understanding of what is going on or why they need to touch her. I'd be afraid too. We love our little bug.On a side note, I lost 4lbs last week and the diet and excercise seems to be working. Yay! Cant wait for this weekend looking at rental homes with my sister, and getting to visit and picnic with a wonderful friend on Sunday.
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