Quick post today with a few things to tell y’all.
1) All of Jilly Bean”s lab results are finally back. All came back normal. The good news is she doesn’t have a metabolic disorder. The bad news is she doesn’t have a metabolic disorder.
2) I’m not as upset by this as I thought I would be. Then again, I can.not tell you how much Jill has progressed in just a few short weeks. It’s like something clicked in her head. A light bulb was flipped. Suddenly, she is developing at the speed of light. Just a few weeks ago, I honestly did not think she would be sitting by her first birthday. (Something that weighed on my heart heavily). And now, she’s *reeeallly* close. Like, I can let go for a few seconds and she sits alone! Just 3 weeks ago, it would be like trying to get a beach towel to stand on its own. Literally impossible. She’s jabbering constantly, she can be found in a completely different direction and end of her crib, and she kicks her legs and sways her body in excitement. She couldn’t do ANY of these things a month ago. Doctors and therapists are in awe. When she was a newborn, we were told to be prepared that she may never walk. Last week, I was told by both my doctor and a therapist (separately) that “She’s gonna do everything her sister does…it’s just might take her a little longer to get there!” I am speechless.
God is good.
We have an appointment to see a neurologist in June and will schedule an MRI. But really, I don’t think much will change with our lives. We’ll likely just keep up with therapy and keep working with her. And keep watching and waiting and praying. I have a great peace with coming to grips with the fact that we may never know what her deal is, why it happened, or where we are going to end up. I could not have said that a few months ago. If you know me, and my need for control answers and reasons, you know this is huge.
3) Today is the National Day of Prayer. Take a few minutes today to pray. Pray for someone you know. Pray for people you don’t know. Pray for something you normally wouldn’t think to pray for.
Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God.
-Phillipians 4:6
4) Would you be able to find $5? Can you help Jackson’s family? Really. It’s easy. It’s quick. It’s good. If Bella’s story blessed your heart, turn the blessing out to another today.
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You go, Miss Jill!!!! That’s great news about all of the progress she is making. Thanks for the reminder about the National Day of Prayer. I had no idea. Seriously. That’s kind of sad. miss hanging out with you! Maybe one day soon :)
Praise God. The power of prayer is awesome – both in the work He is doing with Jill, and the work in all of our hearts as we think (WORRY) about her future.
A parent of a nearly 30-year old daughter with special needs told me that they found out last week ‘what happened’ — something on the 16th chromosome. It’s not a syndrome, there isn’t a name, it’s just an explanation — 30 years later.
I can’t speak for them but I think they have some sense of relief while, at the same time, the joy of realizing that it doesn’t matter.
My child has always had a diagnosis but it will never define her. I giggle to myself when therapists, docs, or teachers look into their crystal balls and make predictions about what her life will be like…how silly!
Love the photo of the roller coaster…yes, that is life.
Thanks for sharing the ride today.
SOOOO glad to hear how little Jilly bean is progressing. That picture of the roller coaster says it all. I can’t even pretend to imagine what your heart goes through in this situation, but there’s a reason for it all out there somewhere :) Hugs
.-= Kirsten´s last blog ..Thanks Ashlee… =-.
Praise God! Thank you for sharing this roller coaster ride and updates with us. Thank you also for your honesty in how it has touched your life and helped you grow. We all know you were fabulous before the twins’ birth, but it is interesting to see what shapes us, isn’t it? Oh, the tapestry that God is weaving in all of our lives! “For I have plans for you, declares the Lord. Plans for welfare and not for calamity to give you a future and a hope…”
-Jer 29:11
Thanks for the Day of Prayer encouragement – good advice!
Awesome news re: all your girls’ accomplishments! Sounds like your girl is finding her own way of doing things – woot woot!
not the news i expected but so excited for jilly and so glad your heart is encouraged. i love you all!
Well, first.. I just want to tell you (in response to todays post (Im reading this on Friday 5/) that right before I clicked on your blog I thought, “Gosh, I hope she has a new post up bc I just want to hear from her.” Your blog is alive in Christ- glorifying Him and Satan wants to steal, kill and destroy it.. trying to do so by making you think it’s worthless. Well, that Satan.. he tells lies!!!! Your blog is beautiful and brings so much glory to the Lord!
Also, I dont know if my daughter’s story will be of any encouragement to you.. I sincerely hope that it is.. should you choose to read. She was diagnosed with microcephaly (small head.. but with many complications). Her MRI results showed significant abnormalities in many parts. Her neur. said that it was possible she would never walk, talk or have ANY noticeable cognitive functioning. He said, at best, she would still be moderately mentally handicapped. The Lord began stirring in our hearts later that day when we mopped ourselves up off the floor. He began stirring hope, stirring the need to tell her story, stirring the faith to step out and believe in the promises of scripture and claim His word over her.. believing in a healing one. milestone. at. a time. He is showing Himself in her. There are delays and then BOOM.. overnight, He calls it to life. We have a long road ahead (she is 10 months old) and a very unknown future, but He is faithful… whether her brain maxes out it’s abilities tomorrow, or He continues calling her brain to life everyday for the rest of her life. You are not alone. I will continue to pray for little Jilly.
Counting joys.. Jordan
.-= Jordan´s last blog ..This is GLORY! =-.
Visiting from Sits this morning…What a touching post, there are blessings and challenges at every corner, I trust this little girl will continue to do well. Janell