A Great Week

So, this past week we took a break from in home appointments, specialist appointments, insurance phone calls, etc. It was a much-needed break from all of these stressful parts of caring for Leah. This was in addition to having Leah's nightshift nurse here 4 nights, which allowed Mom and Dad to catch up on rest.

Monday - Grandma Powers came for the day
Tuesday - Both girls got to go to the park
Wednesday - Both girls got to go to the Library for storytime
Thursday - Playgroup was at our house, with our friends surprising us by planting flowers in our front yard!
Friday - Friends over for dinner
Saturday - Relaxing day together as a family
Sunday - Celebrated Grandma Powers' Birthday at our house

It honestly felt like a pretty "normal" week. Leah's new medication, Clonodine, allowed her to get lots of extra sleep for even a few hours at a time. Her seizures are still very frequent, but at least while she sleeps, by default, she is able to get a break from the seizures.

We are getting ready to celebrate Leah's 3 month birthday this coming Saturday! I am throwing Leah a birthday party, and feel so excited to look back and see the 79 days God has given us with Leah in our arms! Our prayers before her birth were for even a few days....maybe a week! And we have gotten so much more than we were told would be possible.

On the medical side of things, we're moving forward (slowly) with plans to assess Leah's readiness for a permanent feeding tube to be surgically placed into her stomach (called a G-tube). It's still hard for a doctor to predict if she's strong enough for this surgery, or if it would be too much on her little body. We're reaching a point where having the tube through her nose isn't a sustainable option. It keeps coming out for one....she's really good at pulling it out and spitting it up and out. It's meant to stay in for a month, however Leah's average is one per week, with last week requiring 3 new tubes to be placed (Mom even did one!!). It increases her risk for aspiration, damage to her nasal tissue and possible infection. So, we've made an appointment for the end of July to meet with a Pediatric GI doctor, who'd be able to book the surgery August or later...if he's comfortable operating on Leah.

Our family's list of prayer requests, must start out with our long list of praises to God, for all the support and love from those around us.

- Leah's concert was beautiful, and raised around $4000 for her medical bills
- More friends have stepped up to continue proving meals and housecleaning
- Leah's Pediatrician's office brought by a Goody Basket yesterday, including the offer of several staff to watch our girls while Mom and Dad go out to dinner!
- Beautiful flowers planted in our front yard
- A wonderful nurse to help out at night, who has personal experience with a difficult pregnancy and hospice experience, who is also a Christian
- Help from family and friends to watch Kyla and take her on outings

We have never before felt so overwhelmed and loved by others. My prayer is that each one who's blessed our family with their thoughtfulness and generosity, is in turn blessed for their acts of love. This journey has felt much easier with everyone's support!

Leah is still Leah, with all of her challenges. God is still God with His amazing power and goodness. Yet, I see my mind and heart changing so much through His work in my life and the beauty of the body of Christ ministering to our family at this difficult time