Saturday, January 29, 2011

Calvin Update

I want to give a quick update on Calvin as I know so many of you are faithful prayer warriors.

Since the Nissen and g-tube surgery Calvin developed some complications. The surgery wrap loosened and he began to continuously gag and vomit. His hydration levels were becoming a big concern. He is now on the feeding tube only (no solids by mouth) on a slow drip and his vomiting has nearly ceased. This is due in large part to a new anti-convulsive medication he's on.

We are so thankful that he can now tolerate his feeds. Instead of him (and us) waking up at all hours of the night from his retching, he is now sleeping very well. When he cries we just reposition him (he can't turn or roll at all) and he settles back into sleep. The morning sure looks a lot brighter when you've had more than three hours of sleep!

Overall he seems to be doing well. He had a bout of pneumonia last week that we were able to catch in the beginning stages (thanks to the wonderful care of Brookville Pediatrics and Spectrum Health) and he is doing well with treatments for that. We can't put him down a lot but his comfort level does seem much better since the vomiting has nearly stopped. Thanks so much for praying for our little man.

In other (big) news, it seems we may actually have a diagnosis for Calvin, something more specific than cerebral palsy, brain damage, muscle disorder, etc. It is something called lissencephaly. I'm more sure of it that I'm sure my name is Kara. My dear sister had to listen to me go on and on this week as I discovered more kids like Calvin! (Thank you, Kristin!) It is a very rare brain disease but the profile fits Calvin to a tee. We have an appointment with neurology next week Tuesday and I hope that we can receive confirmation.

I have to share this sweet video of Calvin. This may be the happiest I have ever seen him. I sound absolutely ridiculous on the video, but hey, I'm a mom. I hope it makes you smile as much as it makes me smile. Like Sophie said, "Oooh, mom, I love him so much I can't even breathe." :)


Anonymous said...

What a sweet video... thanks for sharing it! :)


Anonymous said...

I started crying when I saw this video. Thanks so much for sharing Kara and for the update! He is adorable and I am so happy for you that you are slowly finding answers and little improvements with Calvin.


Rachel said...

What an adorable video, and Sophie sounds like an amazing big sister.
You continue to be in our prayers.

Anonymous said...

I am so happy that you can enjoy these precious moments with Calvin.He is so sweet! Thanks for posting Kara! You are an inspiration to many.
God Bless.

KarenKTeachCamb said...

Thanks Kara,

Thanks for sharing your insights into Calvin's disorder. May you receive the confirmation that you need. No matter what its name, it's not easy for you. Thanks for sharing the good times, like this video. I love that the song you were singing reminds us all of
"How deep the Father's love for us,
How vast beyond all measure ..."
So true. So glad this could be the song on your mind to sing to Calvin. You're precious and so are your family. I'm with Sophie!
Love Karen

Mom said...

Sweet Calvi-it's so good to see him happy. This brings to mind the words of Matt 21:16, "Out of the mouth of babes and sucklings thou hast perfected praise." It sounds like he's singing along with you.

Albert'n'Carly said...

Love this video! What a great video that shows what his real personality is without all the pain. Thanks for sharing!

Anonymous said...

Wow!! I sure hope you see him happy like this more and more, God bless you and keep you!
P.s. He is adorable!!!

Kate said...

Kara - he's singing with you!!!'s so beautiful I could watch it over and over.
It was lovely to see you all yesterday!

Anonymous said...

I cried all 2 min 27 seconds of it. I think he's happy about how deep the Father's love for us is

trmills said...

Seeing sweet Calvin in action made me cry, too, Kara. And knowing how much his big sister loves him- I know it's just a sweet expression of the depth of feeling that you all have- greater depth than you could even conceive a year and a half ago, I imagine. So much beauty and sorrow and joy all mixed together in the journey of life!

Rebecca said...

Kara, how beautiful! It makes me smile, give glory to God, laugh, cry. I continue to pray, hope, wish I could take some of the burden for you. Your witness through this trial continues to bless and is an example to me. I continue to storm the throne of grace. Love Rebecca

Christy said...

You didn't sound silly at all - it was beautiful! I'm with Calvin ... that song is one of my favorites.

So glad you have some more clarity on Calvin's disorder. I pray your next doctor's appointment is the most encouraging yet.

Anonymous said...

I just want to come and cuddle him! precious!!!


Brea said...

So precious! And praising God for more sleep for you!