Monday, September 8, 2014

Lila turns 21 months

Miss Lila turned 21 months old on Saturday. The time is passing far too quickly.

We've been lucky that she has held onto her morning naps and still enjoys an hour or more of nap time each morning. Lately, it doesn't happen every morning due to running errands, dropping off Ethan at school or because she just doesn't want to sleep. She happily stays in her crib talking and singing to her baby.

Lila is a dare devil and has been for quite some time. She loves climbing and jumping on the furniture. Something she learned from her big brother despite constant reminders to both of them that they will fall and get hurt.

Lila has the sweetest giggle, although sometimes this giggle is her way of convincing you that she isn't doing something she shouldn't be doing.

Lately, she's begun talking more. She now says, "tada", "What's that?", "bubba" (Ethan), and many more I can't seem to remember right now. She's a constant chatterbox and seems to not really care who she's talking to or how loud she's talking. Sounds like somebody else I know all too well.

She loves to sing wherever she is. Her favorite and the easiest song to tell and understand her while singing is "Twinkle, Twinkle, Little Star". She absolutely adores singing "The Itsy Bitsy Spider" especially with her Nana who holds a special part of her heart. Finally my mom got one grandkid to want to run to her first.

Recently, she was upgraded to her very own room and loves being able to sleep in and have quiet in her room once again. It's taken some adjustment for Ethan to get used to sleeping alone.

Did I mention how much she loves her baby, Jacob. The doll was mine when I was little. It's a big doll to lug around, but she does. She pretends to change his diaper, constantly wants us to dress and undress him, feeds him and puts him to bed while singing to him in his very own cradle. She's the best little mommy.

I can't believe she's already almost 2 and soon I'll be planning her 2nd birthday party. Stop growing Lila. Stay mommy's baby forever.

Wednesday, September 3, 2014

Clinic Update

Ethan went in for his quarterly CF clinic visit today. We also went to see his GI doctor.

Our first stop was seeing his GI doctor and his dietician. They spoke to me about his vitamin E levels and also his need for a medication he's been taking to decrease his liver enzymes. After discussing it with his GI doctor we decided to take Ethan off of the med for the liver enzymes for a month and have him retested in a month to see if his level increase. My concern was that if we took it him off it for more than a month that his levels would increase quickly and he'd have more liver damage. This seemed like a good compromise and made this mom feel less nervous about taking him off of the med.

We also talked about his vitamin E levels. They were elevated about two years ago. We changed some of his diet and took him off of his daily vitamin on the weekends. We decided to take him off vitamins some days because of the elevated levels/ We will have him take the vitamin 4 days a week and have him retested in a month.

The GI doctor did an exam and found that his bowels are clear and that he sounds great. No concerns from her. We will go to have another abdominal ultrasound in a year to see if the lymphnod she was concerned about initially has decreased or stayed the same. I like that it'll be a year before we have to do another abdominal ultrasound.

Next we met with his CF team. First we met with his doctor. He did an exam and again his lungs were clear and he didn't have too many cocoa puffs in his ears and nose. That's the joke the CF doc always has for Ethan. "What am I going to find in your ears?" Today Ethan's response was "Coconuts!"

We talked about his sleeps habits and if he's sleeping better. I told him that Ethan's been sleeping much better but now that we've moved he's coming into our room during the night to sleep on the ground. He promised him that he would give him 5 stickers if he stayed in his own bed tonight. We'll see if that happens. I hope it works!

Ethan saw the respiratory therapist today as well. Today was the first day Ethan got a chance to blow into the machine that shows the stats of how well you are breathing. He has a lot of work to do before we get true levels but he had fun learning. The respiratory therapist thinks he'll be good at it by spring, but for now we'll be practicing at home.

We go back in 3 months unless something happens. I left with a very tired Ethan who missed his nap because of clinic. We had a very busy day including Ethan's school in the morning and a lunch date at McDonald's just me and Ethan.