2013-09-19 11:27:35 by Sarah Sanford, Mom Blogger, as posted on the inside.akronchildrens.org blog.
If not for the Google-supplied definition of sleep, I surely would no longer recognize the word. Nor the concept. Nor the actuality.
Up until a few months ago, sleep was Jude’s one and only constant. He physically required 14-17 hours of sleep per day. Plus a healthy nap. We fought him and he fought his droopy eyelids to stay awake long enough to eat dinner.
He was a sleeper – to the point that Dr. M, his managing physician, was concerned that he was barely awake long enough in the day to eat, play, learn and develop as he should.
So, off for a sleep study he went. It wasn’t sleep apnea, though his softball-sized tonsils and adenoids had to come out, but he does have a lot more leg “jerk reactions” or tremors in his sleep than is normal.
We knew he had tremors and now we knew he had them when sleeping too. Nothing all that concerning.
The Akron Children’s Hospital team’s consensus was that due to his “brain injury” from his stroke in the womb, his brain was simply healing. The old grey matter was taking its rest time to heal and get ready to learn and develop.
He needed his sleep. We accepted that. It wasn’t ideal to be tethered to home from 5 p.m. on, til as late as we’d let him sleep. But it was ok. His brain needed the sleep. So, sleep on.
A sleep switch flipped this summer. One day, our sleeping machine of a toddler shut off his sleep need. Quite literally. One night in June or July, I can’t even remember I am so sleep deprived, Jude barely slept. At all. Then a few nights passed with very little sleep.
I have found him wandering the hall, sitting on the bench in Jane’s room watching her sleep, “reading” a book, standing at the foot of my bed, perched in a living room chair silently staring out the window.
Because Jude is a notorious wanderer with absolutely zero safety awareness (yes, he already has specialized orientation and mobility training to address) our house is like Fort Knox come nighttime. Chains on the interior of all doors, alarms on doors and windows, and Vance and I now sleep on the first floor to hear his nocturnal meanderings.
Many nights Jude is just walking around babbling to the moon. Lately he has upped his ante and he sings to the moon. All night long.
Jude passes out in his favorite moon-watching chair
When he does finally sleep, he’s either slumped over on whatever piece of furniture he was near when he finally got tired or on a makeshift bed of his favorite blanket right outside of Jane’s room.
We have tried everything – rewards to stay in his room, loss of trains when he leaves his room, nightly LONG walks to tire him out, new sheets, extra weighted blanket, new comfy pillow, begging, pleading.
I’m almost moved to tears begging Jude to PLEASE stay in bed and sleep. We even caved and put a toddler cot in Jane’s room to sleep “next” to her. No dice. He simply isn’t tired. He flipped his sleep switch.
Questions abound. Does this sleep change have a diagnostic root in Neuro, in the fact he has hydrocephalus ex vacuo (extra axial cranial fluid), or that he’s in the autism spectrum of behaviors? Is he just being a toddler? Are the tremors caused by his cerebral palsy keeping him up?
Don't know yet. But like I told his teacher last night, I don't even know which DX (diagnosis) to hope for this time. Throw a dart and see which challenge we hit.
Dr. Mosher and Dr. TK have seen him recently and we discussed it. Both offered good suggestions, but thought maybe we needed to look at another sleep study and adding the reading pulmonologist to the team. A sleep disorder specialist.
Jude undergoing a sleep study in 2012
The pulmonologist Dr. Omlor was booking really far out, but the sleep gods must have been smiling on Jude because we got a cancellation-list call that his December appointment is now on Oct. 11. It cannot come soon enough!
Dr. TK also gave us the go ahead to try melatonin, only 1mg, to see if that helps.
I hung my hat on the high hopes of melatonin being the fix it. I can’t say that it has been a miracle yet, but I can say that it seems that since taking it nightly, Jude is able to settle into a “rest mode” easier. He doesn’t stay asleep, and I don’t think it is deep sleep, but the Melatonin is staying on the team until someone tells me otherwise.
The good news is that both of Jude’s teachers are in the loop and are willing to help out. His Akron Public School teacher is even making a social/story book with pictures of our home and his bedtime routine to read with him at school. He may be out of sorts with the back-to-school transition.
I giggled when she said, “Jude may be having a harder time adjusting to the change than a typical kid. . .” and I thought, “Wait, you mean to tell me he’s NOT typical.” Sometimes we forget!
Jude’s Akron Children’s team is all on board to help from suggestions from Jane C, Margaret and even his water therapist Bea. His doctors are also in full support of helping Jude find his slumber. Then, maybe, Jane, Vance and I can rest a few winks, too.
The other good news is that, according to Baby Jude’s nighttime deep thoughts, “There is a man in the moon, the moon is NOT made of cheese, the moon is too big to fit in mommy’s room, and Jane can lift me up to touch the moon.”
All seems like good news, right? Sand Man prayers that good news come from our newly added sleep disorder professionals + melatonin and that my boy can rest soon with a sweet dream . . .Jude’s already “the cutest we’ve ever seen.”
As always, Grateful Prayerful & Hopeful.
Hey, Jude! is a blog by Sarah Sanford. The author shares her experiences as the mother of two adopted children, Jane and Jude. Jude has multiple special needs, including cerebral palsy and sensory processing disorder. She spends a lot of time at Akron Children’s Hospital with Jude. Read more of Sarah’s posts.
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