Chronicles of Selah

I haven’t updated things on Selah since we got back from our visit to Baltimore to see Dr. Ben Carson and other specialists at Johns Hopkins Hospital and the Kennedy Krieger Brain Institute.

We have a HUMONGOUS praise:  Selah is now, for the most part, sleeping through the night!!!  Selah’s brain malformations literally cause her brain to never turn off.  Ever.  So, heavy sleep medications (a cocktail of three prescription meds) is finally working to get Selah to sleep through the night.  What a blessing this has been!!!  (For those interested, Trazadone was added to Selah’s sleep cocktail.  For those familiar with Trazadone, you won’t believe that Selah, age 2, must take 50mg in order to sleep!!!!  That’s a CRAZY high dosage, but lower dosages didn’t work.)

 

We LOVE, LOVE, LOVE Selah’s local sleep specialist.  In fact, he’s one of my very favorite of Selah’s specialists.  He just makes us feel at ease when we visit with him, and, of course, he knows what he’s doing, he’s comfortable doing it, and, praise God, he got Selah to sleep through the night!!!  (Prior to Trazadone being added to Selah’s sleep cocktail, she was still waking nightly and remaining awake for several hours and not taking any naps.)  Sleep, glorious sleep—it does a body good!

Selah wearing her big sissy’s apron.

 

You may recall that Dr. Carson and the psychologist at Kennedy Krieger recommended ABA therapy for Selah in order to help with her extreme mood/behavior disorder.  Well, every therapist who works (or has worked) with Selah strongly disagreed, which, of course, sent me into research mode, trying to figure out why the strong disagreement.

 

ABA therapy is typically used with autistic children.  While Selah has many autistic behaviors/tendencies, she has great relational skills.  She has a super sweet spirit, a desire to please, and the ability to speak and express herself.  Selah’s therapists believe that ABA therapy would actually squelch Selah’s strengths.

 

So, through prayer and the help of Selah’s original physical therapist (with Early Childhood Intervention), we decided to seek behavior therapy with a fabulous psychologist with our local ECI program.  Selah was discharged from ECI shortly after she turned one because she had met all her goals and we weren’t having any issues.  Since that time, Selah has developed this severe mood/behavior disorder, and we’re in desperate need of help.

 

Selah’s psychologist came yesterday for the first time.  Oh what hope was delivered through this loving, compassionate, empathetic psychologist.  We’re praising God for sending her.  Even if Selah’s behaviors don’t change, which we believe they will, at the very least, this woman has spoken truth and hope into Selah’s life and situation.  Praise Him, praise Him, praise Him!!!

Selah joining the big kids in a game of Twister.

Over the past few weeks, we’ve seen rapid global development in Selah.  She is using more vocabulary to express herself, she’s started to string words together to build sentences, and she seems to be more willing to listen to us (just a tad).  She still has an extremely difficult time sitting or staying still in any way.  Since her brain never turns off, her body needs to move.  Constantly.  That’s perfectly fine except for meal times (sitting still in her high chair) and car time (being restrained in her car seat is an absolute nightmare).

 

Selah’s pretty much got her daddy wrapped around her finger.  She gives him big kisses when he takes her out of her high chair during meals.   Pretty hard to resist such love!

 

While Selah still struggles greatly throughout each day with aggression, violence, fits unlike anything we’ve ever witnessed, self-injurious behaviors, and the ability to play appropriately (with people and toys), we are seeing progress.  It might be super slow progress, but it’s progress, and we’ll take it!

 

Being on people’s shoulders is one of the only ways to keep Selah still and safe.  She will usually stay on shoulders for about five minutes, which is longer than she tends to anything else.  I’m so very grateful for all of our older kids who are able to help with Selah.  Everyone takes shifts, and if it weren’t for the relief of the next person taking over the next shift, I don’t know how any of us would make it through the day.  Of course, Jesus would give us the strength, no doubt, but it’s almost unfathomable. 

 

Even with all of us taking shifts throughout the entire day until Selah is asleep, we’re all plain ole exhausted by the time Selah’s resting peacefully in her crib.  It’s tough on everyone, but it’s worth it.  So very worth it.

Selah is an incredible blessing to our family.  Even with all of the trials, tribulations, hard work, and exhaustion that feels like the workload of 25 kids in just one Selah, we still firmly believe that Selah is a gift, a precious treasure, a blessing from the Lord.

 

Thank you, Jesus, for bestowing this rare and priceless treasure upon our family.  We are grateful!