Just breathe...

Alexa's first steps 4/12/2011

I would love to be able to say that Alexa has magically started doing better in the last few days, but unfortunately that isnt so. It looks like she's going to have to go back on antibiotics for yet another ear infection. The doctors say that if she gets many more ear infections they are going to treat her aggressively and put tubes in. They dont want her hearing to be impacted by something they can control. It also seems as though her upper respiratory infection is not getting any better, and sounds a lot worse. Alexa had a terrible night last night having about 30 episodes of apnea. Some requiring vigerous stimulation. I was very tempted to take her into the hospital again, glad I didnt have to. When she isnt forgetting to breathe it seems as though she is crying in pain. If there is one thing I could wish for it would be that she never experiences pain again. I hate not being able to take it away for her, and make her feel better. She looks at me like I should be able to fix it... Oh Alexa, how I wish I could take it on myself.

Alexa loves being pushed around by big sissy

As a tiny baby up until about 11 months she was gaining weight like a champ. Even only getting tube fed the minimum she was still gaining. Alexa was in the 90% for weight and the 75% for height. Since October she has lost 2lbs, and has gained nothing. She is now in the 10th percentile for both her height and weight. With this she is now considered Failure to thrive (FTT), it's terrifying to pick her up and feel her lighter than the day before. We're trying to supplement her tube feeds with pediasure and other foods when she will eat, but she's been having such a hard time swallowing lately, she's refusing all foods. She will drink about an ounce of pediasure daily. We thicken it with thick-it and it becomes a pudding like substance and she's able to swallow small amounts. Sounds nasty, and it is. I tried a little on my tongue to see what I was trying to feed our kid... lets just say the texture couldnt be less desirable. I dont think it helps that lately she has been having incessant diarrhea. Although that just started in the past 2 weeks. She recently saw her cardiologist and he assures us that her heart hasnt worsened, and is not the cause of her FTT.

First time at the park

She's been so weak lately. It almost feels like she has no bones sometimes. We'll pick her up and she just kind of flops with her body conforming to ours. She's a great snuggler, but I would love for her to pick up her head and push away from us to become a little more independent. Although I do cherish every cuddle I can get.. .

With all this she still brings us pure joy. Yesterday she had an hour where it seemed like she was just a normal kid. She had a baby doll in her little baby carriage and was pushing it around. She would lean over the baby and say awww, rubbing its head. I wonder what it means when she got tired of it and threw it across the room? I love the moments when she looks at me and just leans in for a kiss. Alexa has a love of music, anytime she hears any music her little body starts moving to it. Even on her worst days when she hears music it's almost like she cant help herself she starts grooving to the beat. That big purple dinosaur "Barney" is able to make her happy when nothing else will. Often times we'll put him on in the morning while we're doing her awful dressing changes, and unhooking her from her tubes. Every time she hears the opening notes from her favorite Barney she will stop crying and seek out the source of her love.

Easter 2011

Another thing that will get Alexa really excited is oreo cookies(the little minis). She'll even sign for a cookie. We now give them to her as a reward usually after she has to do her cough assist, or other dreaded tasks. Even on days she refuses all other food because she cant swallow, she will suck on the oreos till its mush and then spit it out. Kinda gross when your the spit recepticle. Kevin says he would feed her oreos for every meal if it made her happy, I think if we did that it would lose some of its appeal. She started saying the word yee-a whenever she agrees with something or wants something. So funny to hear. I love watching her personality develop.

Happy Mother's day to all of you mothers. What a wonderful gift to be able to love our beautiful children and see them grow. I'll never take that for granted again. Thank you for all the love, support and prayers you have given to our family. We really do appreciate it.