Eleni, 5 months

Alright, are you ready for another update?   This has been such an eventful month for us.  Eleni had two important tests, that wonderful trip to Chicago, another illness and a fantastic reaction to the simplest home therapy ever.  Here we go...

This month baby is photographed on Lucky Strikes Clothesline Flora available at The Intrepid Thread!  A mighty fine pick, if I do say so myself.  There's just nothing more lovely than a baby on pretty new fabric!

some Tests

Early July Eleni had a sleep study to diagnose the extent of her apnea.  During a sleep study, your child stays overnight in the hospital hooked up to a bajillian devices that monitor everything from the amount of carbon dioxide in her exhale to how loudly she snores. (And oh does she snore!  Ahem.)  The results showed she has apnea at almost 3 times the threshold for severe.  An apnea event is defined as longer than 10 seconds of not breathing or not breathing well enough.  Eleni had 27 apnea events on average per hour during her sleep study.  She had 81 events on average during deep sleep.  Poor baby!  And, no, she is not staying oxygenated well enough over all.

You would think with results like that they wouldn't let us leave the hospital without a CPAP (device that helps keep the airways open) for her to wear at night, when she's most at risk.  Unfortunately, getting help for her apnea has been slow as molasses.  We're still waiting on a CPAP, which is currently being held up by insurance/provider issues.  It was June 8th when I brought the apnea to my pediatrician's attention, and she observed an apnea event in the office.  Two months later she'll finally get help?  Really?

Good thing we weren't just counting on conventional medicine.  We started seeing an expert homeopath in June, who prescribed a remedy for apnea.  I have documented how Eleni's visible apnea decreased dramatically in relation to our use of that remedy.  Now that she's ran through the complete protocol, she doesn't need that remedy anymore.  Her apnea is about 70% better.  It doesn't wake her up from naps anymore or attack her during feeds.  Truly amazing!  It would be interesting to have another sleep study to confirm officially just how much she's improved! 

Meanwhile, we'll still take that CPAP, please.  Doctor?

Eleni also had a swallow study in July.  This time we did a FEES test, which is a study via camera rather than via x-ray.  It's SUCH a better test - safer, less stressful on the child and providing better information for a baby like Eleni, who has severe swallow disability.

The results?  Pretty discouraging.  On camera we could see that Eleni has "gross" aspiration of saliva on a regular basis.  Although she can swallow, her throat does not sense the need to swallow, allowing saliva to get into her lungs.  No doubt she's been this way since birth, underscoring her need for medications to control her secretion levels and to support her lung function.  She also aspirated some thin and thickened liquids during the study, making it clear that we cannot safely introduce food at this point.

Sad face.

Gosh, I wish they had ordered this test earlier!  It would have better equipped us to keep her well.  I actually specifically requested a FEES study, based on my research.  Giving myself lots of points for that.

and then a Cold

On the way home from Chicago my mom and I gave each other lots of worried looks.  Baby came down with another cold.  How would this effect her ability to retain her Chicago learning?  And how bad would it get this time?

But here's the thing - we made it!  We made it through our first illness without requiring hospitalization!!!

I believe it was a combo of decreased apnea (thanks to homeopathy), easier baseline breathing (thanks to ABM with Marcy) and my ability to use meds at home to support her health.  There was a 36-hour period where I was on high-alert, considering taking her in and watching her very, very closely.  But we made it.  And I am SO relieved.  I don't want to face an existence were every single illness means spending a week in the hospital.  It's exhausting for our whole family and so traumatic for baby.  I hope this can be our new normal.

the Simplest Thing

Ok, skeptics, please hold onto your hats.

Remember how we saw the optometrist in Chicago who specializes in vision recovery after brain injury?  She explained that Eleni's level of awareness was at a subcortical level, rather than conscious or subconscious, based on her eye tests.  Eleni feels where here body is in space, but does not use sight or hearing or smell to experience her environment.  Although that was technically bad news, I was glad to have someone confirm and further illuminate exactly what I had observed.

The doctor advised us to spin the baby v.e.r.y. s.l.o.w.l.y. in an office chair to "wake up her brain."  Haha.  I didn't even tell you about that when I shared about the Chicago trip earlier this month, because it sounds so bizarre.  But, hey, it's free, it's easy.  We can do that.  I'm game.

At the eye doctor's they did the spinning as part of the diagnosis process.  I held Eleni first flat on her back, then reclined and then sitting all the way upright.  In each position I revolved 4-5 times in one direction and then 4-5 times in the other direction.  In the office she showed a minimal appropriate response only going clockwise and lying flat on her back.  That's a response in 1 out of 6 positions.

We took up "spinning" duty twice a day while still in Chicago.  Just 3 days in she started making an appropriate eye response in all 6 positions.  Hmmm... should it change that fast?  The doctor had told me that the SLOW spinning provides vestibular input in small doses that Eleni can handle and reaches her where she already is, on a subcortical level.  She said I should look out for those eye changes during spinning, and then that she might become more aware of her environment in general and even start having longer awake periods and better sleep.

That all definitely sounded too good to be true.  But every bit of it is happening!

First we noticed that Eleni likes the spinning.  She generally doesn't fuss and her eyes show interest and awareness.  Then, a little over a week into this simple home therapy, I was spinning her in the upright position and noticed that she picked her head up off my chest and held it, as if by magic, in the correct position during all 5 revolutions in both directions.  Whhaaaaat?  It didn't even seem hard for her.  At all.  But when we stopped spinning, her head dropped back.

I have thought for some time that Eleni doesn't lack head control because of strength reasons, but because of balance issues.  Balance is a brain skill.  She doesn't know where her head belongs in space and will generally push her head way too far back when held upright.  Like this...

Now, during upright spinning, Eleni holds her head beautifully centered over her shoulders during some or all of the revolutions.  I pull my chest back away from her head so that she is holding it independently.  You can see her eyes are looking straight too.  Her chin is low, but I'm thinking that's normal when a baby is just gaining head control? 

While we spin, if she does turn her head to the side (which she usually does not), I notice her head stays level rather than pushing back.

When we stop, she loses that placement.  I have hope that with time that control will transfer to regular life for her.  And, in fact yesterday, I noticed her holding it correctly at a time independent from spinning as well!

We are spinning three times a day now.  During spinning she also sucks very often and startles to sound.  I believe it is bringing up her level of awareness just as the doctor anticipated.  She's even actively awake longer and taking better naps.  What's next?  The moon?  Haha.  Funny how the little things get so big in situations like these.

all the Progress

I can hardly believe all the progress we've made this month.  Thanks to homeopathy, ABM lessons, the spinning and those prescription medications, things are looking up this July.

• Hugely decreased apnea
• Easier naps (due to above).  This made it realistic for baby to start sleeping in her crib or travel bed, rather than a soothing, rocking bassinet.
• Intentional movement!  Baby is trying to roll over all the time.
• Learning movement patterns.  She has learned some things that help her roll over, which she employs again and again.
• Comfortable on her stomach.
• Active head up from the floor.  She has minimal strength/control at this point, but she is now eager to work on head up after rolling to her stomach.  I can feel her engaging her muscles more as the days past, so that my hand is doing less of the work.
• Easy at rest breathing.
• Reduced overall spasticity.  Her muscles seem less tense over all of her body.   This kind of change will make it easier for her to learn to move.
• More leg movements.  She picks up her knees intentionally and independently from each other when lying on her back.  Just yesterday she learned to play a game where I helped her touch her knee.   She seemed to become aware of hand/knee touching for the first time and repeatedly brought up her right knee (which is the less mobile one!) over and over again to touch her hand.  I held her hand in place to facilitate the touching.  
• More relaxed hands/wrists.
• Sucking now when she is awake!
• Mouth more responsive to touch.
• More aware and expressive of discomfort.  I have not been able to count on her to tell me if she's hurting.  She's starting to fuss when we deep suction her to clear her airways.
• Head control while spinning.
• Distinct sound startle while spinning.
• Sometimes seems to use sight as well.
• Actively awake for 30 minute periods on a regular basis.  Before Chicago, she would tire after 10-15 minutes of being awake.

I think you'll agree that our trip to Chicago was a huge win for Eleni.  Taking Anat Baniel Method (ABM) lessons with such an expert practitioner and seeing the eye doctor there who understands brain injury seem to have triggered an overall awakening of her brain.  I am so glad that we are planning a return trip to Chicago in September!  It will be exciting to get the doctor's feedback on how Eleni's awareness has changed.  And who knows what new tricks she might have.  If you want, dear doctor, we'll stand on our heads.

I know it gets repetitive, but I can't help but finish with a thanks to you all for being a part of Eleni's recovery.  Because Eleni's YouCaring fundraiser has done so well, we can plan repeat visits to see that expert ABM practitioner, getting Eleni the best help at this critical time of development.  What we've raised so far brings us through to November with her alternative ABM therapies.

Now with August here, we are starting up the new year in homeschool.  It's certainly a stretch.  But staying home as a family is what Aria and Liam still want, and what I want.  What I want is more of me.  I want to take care of Eleni.  I want to have time for my big kids. I want to get to keep sewing and blogging.  I don't want replacements; I want it to be me.  I may not get what I want, but at least I know what I want.

I know you'll wish me luck and prayers.  Thanks for that!

You're the best!

xo,

Rachel