I got ahold of Isaiah Jane’s MRI this morning and took it to the neurologist’s office. We were able to go through it slide by slide, in order to get an idea of what the radiologist meant by “subtle abnormality.”
Because I don’t have the software to read the disk, I’m unable to pull up the scan at home. The photo below is one I pulled from Google images, and it will give you an idea of the peeks I got of IJ’s brain. Keep in mind: when medical professionals refer to the “right” or “left” sides, they’re referring to a body as if it’s their own. Below is an example of right cerebellar hypoplasia.
Basically, the right side Isaiah Jane’s cerebellum is smaller than the other.
This is hopefully a congenital issue and will remain static. I’m brand new at this, but I’ve read enough at this point to give me an idea of what to expect. It’s not sunshine & rainbows. The prognosis is based on the type/cause, so we don’t want this to exaggerate as she grows. The cerebellum affects a whole host of functions and is referred to as the “movement control center.”
Her low muscle tone, eye crossing, and motor/cognitive delays are most likely due to that underdeveloped piece of her brain. It’s also safe to assume that her body has put weight gain on the back burner as a result, causing her small stature.
As far as a plan, there really is none. The treatment is “symptomatic and supportive” in nature, so we’ll just keep doing what we’re doing. Right now she’s being followed by a couple of specialists, undergoing physical therapy, and eating as much as she can. Down the road, we could receive a diagnosis related to a seizure disorder, mental retardation, cerebral palsy, autism, or plain old clumsiness.
My heart grows heavier by the minute, as I think about the possibilities and the ramifications. So for now, I’ll stop researching and just focus on loving my girl. The other day during Early Intervention, she pushed up onto all fours!
All I know is that where my daughter is small… my God is big.
23 Comments
I’ll be praying for your sweet girl! I’ve learned that worrying solves nothing; and I have to pray (constantly) sometimes for God to ease my mind, so that I can hear HIS voice, and feel HIS spirit.
Such a strong mama! Hopefully you’ve found (at least some) comfort in a diagnosis. Sending good energy your way today.
God is so good! Praying you feel His love, His joy, His Peace that passes understanding. And praying for HEALING for your baby girl. You’re an awesome mama, and you’re doing a spectacular job.
You honestly have made me less scared to try to be a mom in the future through such honest posts, such love till you burst type of mother! I know I don’t know you that well, but know that Luke and I are praying for your whole family. I don’t know how its possible to be proud of someone you really only know through the internet, but I am. As your sister in Christ I am blown away by your strength. Get it girl!
Rachael – I’m thinking of you and your sweet little girl. You are doing an amazing job in giving your baby the hope and strength that she needs.
Love you Rachael and the plans God has for you and your sweet family.
My mama heart is broken for and thinking of you.
praying for you and your little girl
xo
thanks for being vulnerable, so we know how to specifically pray for IJ. Lifting her up, and praying for you guys as well!
<3
you are so strong. you children are so wonderful, i love reading about them on this blog. you have such a wonderful heart and so much love. thank you for sharing your journey. and thank you for sharing your faith.
your God is so so so so big.
love and prayers to you and yours, from one mama to another.
“praise God from whom all blessings flow
praise him all creatures here below
praise him above ye heavenly hosts
praise father, son, and holy ghost”
amen.
AMEN. God is BIG and He is taking care of your little girl and gave her the best mommy to take care of her.
God knows what he is doing.
I will keep you all in my prayers though!
Im terribly sorry to hear that there is ANYTHING at all not going 100% well with anyone’s babies. I can’t help but feel that horrible sinking in my chest just thinking how I would feel if it were my little one. I am wishing you nothing but good news and keeping you and your family in my thoughts.
XX
My prayers are with you.
Your last few words are the ones to cling to. As bridges come that must be crossed, you will be able to cross them, no doubt, you will be carried if you can’t walk.
But, it’s okay too, to be sad, to grieve the loss you feel, whatever that may be. Just remember to surrender it and not hold it too tightly.
You are doing wonderfully. Keep celebrating those successes! We love you guys!
The way that you chin up and handle whatever comes your way with such positivity is flat out INSPIRING! You make me want to be a better human being.
Phillipians 4:6-7 “Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.”
He IS big! And merciful and just and His will for your family is heaven on earth! Praying for your sweet girl and for peace for your sweet mama heart.
you’re exactly right; just focus on loving on your girl. i’ve been doing this for 10 years and i can promise you, faithfully and consistently loving on her can move mountains! HE IS SO GOOD RACHAEL. but you already know that. :)
Kincaids, we are going to love all of you, for all time come rain or come shine. Mizpah
i’m probably lacking more sleep than i’d like to let on, and it’s probably close to that time of the month (tmi? yes. but whatever, that time DOES happen, okay?), but i teared up reading that last sentence.
it’s so true. and i think sometimes, we forget that our problems are His problems, and that His strength gives us strength. i think i really needed to read that today.
i’m praying for you, ij and your family <3
Our God is so big and loves little IJ more then all of us combined. Thank you for sharing. I’ll keep you all in my prayers.
God is good, all the time. All the time, God is good. I am holding the whole family in my thoughts and prayers. She’s a strong one, that little girl.
I just saw this post after doing some research for my daughter – just a quick synopsis – since she was born there was always issues that no one could ever explain – in and out of the hospital but nothing ever so severe and never an explanation – when she was 9 was a realization – she woke up one morning and could not move – I kid you not – screamed in pain, her whole one side of her body raised – hospital visit – diagnosis torticollis – however this emergency room doctor – who I praise every day since – pointed out to me that her primary doc will write it off as simple torticollis – but your daughter has been in and out of here so many times and never broke a bone – advised me “discretely” I should demand to see a rheumatologist, neurologist and whoever else I could find b/c there’s going to be a day where something serious will happen and all the “great” doctors (sarcasm) will be like oh yeah, this and that – needless to say, we did some serious testing – she was diagnosed w/spondyloarthropathy, jra, crohn, some weird genetic factor hbla27 – then neurologist sent her mri and catscan came back w/right cerebella hypoplasia – probably congenital – no one ever knows, very weak very skinny, we did the remicade treatment as that was for her jra and crohns – anyway on a positive note to you, she is 14 yrs old and Victoria’s secret gorgeous – she has a senseorneurol hearing loss – hearing aids – and just started some severe migraines and shortness of breath so I am back w/neuro and pulmonologist to confirm no changes – I kid you not three years ago she couldn’t life a gallon of milk – rheumatologist said move move move – – yes she has a hard time gaining weight and muscle mass – she did get on the varsity swim team this year being an 8th grader – mostly I’m sure due to the coach’s kind heart – however, now can swim 100 meters w/no problem – just wanted to share there is positive – my daughter is a little fighter – 14 and bitchy just like any other 14 year old – a little weaker – be positive, treat her normal, make it funny – it’s the way I handled it and so far my daughter is very very strong emotionally and confident in her attitude. I’ve never shared in one of these – just feel your uncertainty..