Thursday, June 3rd- still a peanut!

I am thankful for the many people we run into either at church, the grocery store, on FB, etc that tell us they read Lexi's blog and are praying for her and us! It reminds me to take the time out of our hectic days to update everyone on Miss Lexi Mae!

We went to Cleveland Clinic last week and they did another scope/swallow study on Lexi. For this procedure, we literally hold her head and body down and they stick a tiny camera down her nose and into her throat (yes- she SCREAMS!). Then, they feed her various consistencies of food to see if she clears it or if she aspirates (Liquid goes into her lungs). Unfortunately, Lexi aspirated on slightly thickened juice. This was disappointing as we were hoping she was getting better at controlling things in her mouth. For now, we will continue to thicken anything that goes into her mouth and repeat the study in 4 months.

We saw the pediatric hospitalists today at our local hospital. He is helping us monitor Lexi's growth and development since we are not seeing the feeding clinic weekly any more. We were REALLY hoping Lexi would hit the 20 lb mark, but, she's at 19lbs 13oz. (This is what the twins were at EIGHT months old- Lexi is 19 months). It is hard to not blame yourself as a parent and we keep asking "what are we doing wrong?" For the next month, we just have to make sure that we give her every drop of every feed and encourage her to take as much as she can by mouth (which is what we HAVE been doing). We're also going to really start praying that she can start gaining weight, or it's back to Cleveland Clinic for more testing. However, Lexi DID at least gain a little weight so we are heading the right direction!:-) She is just not making many strides in her oral feeding and we are becoming concerned that this might not ever get better!

We are very thankful for our break from Cleveland Clinic trips- we don't have to go back until June 17th to talk to Opthomology about her next eye surgery!

At 1 1/2 years old, it's easy to look at all the things Lexi "can't" do, but we recently had her goal review meeting with her Early Intervention program and it was encouraging to see the strides she has made! Lexi can't do a lot for most kids her age, but she has made HUGE improvements the past few months. She is working really hard to crawl and is almost ready to pull to stand on her own. She is saying a few words- "dada" is the favorite but she also says "nana" (meaning Mama!) "good girl,"" all done", "up", "ouch" (poor baby!) and "Ally" (her oldest twin sister). She also does the motions for "so big." We have learned that we can't look at Lexi as a typical 1 1/2 year old. We have to look at her for how much she has gone through and how far she has come!

Prayer Requests:
I leave on Children of the Light tour on Monday. Children of the Light is a singing group sponsored by Youth for Christ here in Findlay and I am the director of the group. I completely set up and run the entire trip- we're going to Viriginia. I have to leave all the kids and Jon for a week and I'm having a really difficult time. Pray for Jon as he works all week and then has all 3 kids by himself all evening. Pray that he finds the time to keep Lexi's feeds up and all her therapy sessions.

Pray for GROWTH for Lexi. The poor baby still has to be rear-facing in a car seat! We're ready for Lexi to be "so big!"