a diagnosis.

Mike and I had received a diagnosis on Michael. It was something that we hesitated to bring to the blog because we don't want an over re-action, either from ourselves or from others. It's something we've had to sit on and think about and hopefully have balance and perspective in interpreting all the data and information.

All that said Michael has been diagnosed as having hypotonic cerebral palsy. "What is that?" you might say. this was an accurate explanation I found....

Cerebral palsy is a disorder that affects movement and posture. Cerebral palsy is caused by an injury to a specific area of the brain, resulting in the disruption of the individual’s sensory-motor skills. The area of the brain the injury affects determines the type of cerebral palsy. Injury to the cerebellum can result in a form called hypotonic cerebral palsy.

There are certain signs that may suggest the presence of hypotonic cerebral palsy. Normally infants give only a moderate amount of resistance to you when you move their extremities. Children affected with hypotonic cerebral palsy appear floppy; for example, hypotonic babies have an appearance similar to a rag doll. Hypotonic cerebral palsy infants rest with their elbows and knees loosely extended, while infants with normal tone tend to have flexed elbows and knees. Head control may be poor or absent in the floppy infant with the head falling to the side, backward or forward. Hypotonic cerebral palsy can also be so severe that the infant may have difficulty breathing.

Infants or young children who have difficulty maintaining posture against gravity and prefer to sit leaning against something or lying on the floor may have hypotonic cerebral palsy. Preschool-aged children may sit in a fashion that appears lazy. Rather than sitting upright, they mostly sit in a slouching manner, lean on the chair or a table with the head over the top of the table, or lie down during activities as much as possible which could also be a sign of hypotonic cerebral palsy. Children with hypotonic cerebral palsy have to put forth more effort in order to move their arms and legs, resulting in fatigue.


So what does this mean for us? We have doctors who are already trying to prescribe a wheel-chair and walker. Doesn't that sound ridiculous? It does to us. Let me put it this way.. that's a bit pre-mature at this time. We do believe that Michael will be able to crawl and walk. These things will probably take more time. At the same time, there's a lot that we DON'T know. And that's okay.

This has no bearing on his intellectual faculties. He is an smart boy. We look forward to watching him mature and develop.

We've been given pamphlets and papers and suggestions. There is a TON of information to process. A lot to think about. A lot of prayer. So please pray for us. We know our God is good and faithful. We look forward to how this will turn out and the testimony that this little boy will have. We love Michael and thank God for him and that he is alive! We are very blessed. We also know that this is a road to walk on... a road that is not full of pat answers and easy cliches... but it's a road full of needing to trust the Lord, of giving up our expectations for our family and even for our children... it's a road of surrender.

Our hope doesn't come from us. It comes from God alone. We know that better days will come; not because we know what those days will be and what they will look like but because we know who we belong to. We know how this story ends. We know when all is said and done that this life is a shadow.

2 Corinthians 4:16 "So we do not lose heart. Though our outer self [3] is wasting away, our inner self is being renewed day by day. 17 For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, 18 as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal."

Comments

Anonymous said…
The grace that will be revealed for, in, through, and because of my sweet Michael, as well as you all, will bring irrefutable glory and testimony to the Lord. We walk with you, and will help 'hold your arms up' in the process.
Love and hope that promises great things...

Dad
Mimi said…
Keeping you and your family in prayer. You have been such an example to me with your humility, joy in all circumstances.
Caren said…
You have such the right outlook Jen. I am praying for your family...you have a great support group around you. I hope some day I can come visit your family...Thanks for being such a blessing in your writing....You always point to the Lord in everything, and thats really where our eyes should be. On HIM!
Jessica Rockey said…
What a great post, Jennifer. Definitely a wise way of filling us in on everything. Thank you so much for your candor and transparency. Love you...

...I would write more, my dog is trying to 'eat' my baby! (in a totally playful way of coarse).

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