Here we are, another month gone by…the last week of August. What a wild month it has been.
We started the month praying the Botox would do great things for Elena…and it has! We continue to see such an improvement on her legs. We’ve prayed and prayed that it would be a “game changer” and it’s too early to call but we’ve been ecstatic with what we’ve seen. Her legs are so maneuverable now. It must be such a relief for her not to constantly be in extension, tiring those poor muscles!
She is now in therapy five days a week. It’s a bit exhausting, having something every single day. I’m constantly watching the clock to make sure she gets good naps each day, so she can be ready to work hard in her therapy sessions. It’s pretty limiting, too, on what we’re able to do outside of the house but seeing that her recovery is our absolute priority, I’m willing to do anything for her.
As of today, we’ve officially said goodbye to the three-hour eating schedule! Woooohooooo! Since those last few days at Riley, we’ve spent hundreds of hours with Elena on our lap every 2.5 hours for a 30 minute tube feeding. I’m afraid to actually calculate the actual amount of time we’ve spent feeding her over the last 10 months. Our lives have been on an 8am, 11am, 2pm, 5pm, 8pm schedule for far too long! She’s been tolerating her toddler formula much better so we have bumped up her volume and are now on a 4-hour schedule which is going to be GREAT!
We met with Elena’s Neurologist last Friday. It was a bit better than I had anticipated. She was happy that we haven’t seen any problematic seizure activity, so Elena will continue to stay off her seizure medication for now. She is still at an extremely high risk, so we’ll pray she’ll continue to be seizure-free. We are still disappointed that Elena has yet to have any head growth. It’s certainly one of the harder things we’ve had to accept. It doesn’t mean that she won’t ever have any growth, but the doctors would have liked to seen some by now. But, all we can do is continue to pray, rejoice in every bit of new progress that she makes and savor every smile and giggle she gives us.
This week rounds out our big month. We see a new GI doctor and have her swallow study at the end of the week. Please continue to keep us in your prayers this week. Friday will be a very anxious day. Elena has had a bad cold all weekend, so pray that it’s all cleared up by Friday so she won’t have anything else complicating her eating.
I want to end on a good note and show you some huge progress Elena has had in the last week or so. She’s had a sudden burst of head control/strength! I remember putting her on her tummy one day and her little head shot right up to watch her beloved Tigger do some bouncing! Since then, we’ve noticed a huge leap in her ability to hold her head/torso up longer and higher. This is HUGE for her development. Little prayers like this, that we’ve been praying for months are being answered!
(Excuse the bed head, we were just up from a nap!)
Hard to see them here, but she’s sporting her first pig tails!
Playing with Daddy before bedtime
Trying to sit up like a big girl! Yay for new skills!
P.S. Thanks to those of you who sent us messages/notes this past week. You blessed us beyond belief. I’m always amazed at the lives (even of those we’ve never met!) Elena continues to touch. God has given her such an amazing story with a purpose!