How Ellie is doing these days

As I posted the other day, it has now been over a year since Ellie's first stroke and brain surgery.  Then it was exactly 2 months later that she suffered her really bad stroke on the other side of her brain.  The second stroke (and several smaller strokes to follow) is what has left her mentally and physically disabled.  Yes, it's finally registering for me that she is disabled in many ways.  As we get closer to it being a year after her major stroke, I am starting to accept that strokes cause permanent brain damage.  I think I was in denial of that for quite awhile.  I kept thinking she would just bounce back from it like she did her first (much smaller) stroke.  And one day she may regain all the abilities that she lost but that doesn't mean the damage isn't still there.  Things have always been a struggle for Ellie and I know that isn't going to change.  What comes easy for many children isn't going to come easy for her.

But Ellie is a determined little thing and I know she has it in her to keep overcoming all that is stacked against her.  I see 1 year old babies doing things that she can't do and sometimes I feel a wave of sadness but then I remind myself that they haven't overcome multiple strokes.  

As Payton said recently, "Everyone is different.  Some people have black hair and some people have blonde hair.  Some people have curly hair and some people have straight hair.  Some people have Moyamoya and some people don't."  

We aren't waiting and hoping that Ellie "gets back to normal" because to us Ellie is an normal as anyone else.  In fact, we are so used to Ellie the way that she is that we sometimes are surprised when we see typically developed kids doing things.  For instance, sometimes when I see Skyler use both hands to grab something my initial reaction is, "Woah, how did she do that?!" before I remember that most babies do use both hands.  Or when a little 2 year old at church, who was sitting in an adult sized chair, started leaning to reach play dough and I ran to be by her side because I thought she was certainly about to fall out of her chair and hit her head.  And when I go to pick up Skyler, I am always careful not to put pressure on her feeding tube (that she doesn't have!)  To say we are praying Ellie "gets back to normal" would imply that we think she is currently something other than normal and that just isn't the case at all.  Ellie is perfect just the way she is.   

Working hard in therapy

But, of course, we want to provide Ellie with the opportunities to accomplish all that she can and so she continues to receive 6 therapy sessions a week at our house through a pediatric home health company.  And so that's been the story of our lives with Ellie in 2015 so far.  

In speech therapy Ellie is making improvements in the number of sounds and ASL (American Sign Language) signs that she knows.  We are extremely blessed to have a wonderful speech therapist.  Ellie remains nonverbal and communicates mostly through screams, grunts, and pointing.  But she does have a few sounds and several ASL (American Sign Language) signs that she uses now with meaning.  Her outward communication is equivalent to that of a typically developed 9-12 month old.  

Her understanding of things is higher at about 12-18 months.  She can't identify a single color or shape even though I work with her on those things regularly.  She is starting to be able to point to a few body parts when I ask her such as, "Where are my eyes?" but won't point them out on herself.  She is also starting to point out a few common animals and objects when I ask her to find them in picture books.  She can follow directions that are very familiar to her but is unable to follow unfamiliar directions.

Playing hard in therapy

Ellie still has no use of her arm or hand.  I hear all the time, "Wow, she looks like she's moving her arm a lot more!" and I wonder what people are talking about.  Yes she bring it up as balance and can manage to move it out of her way but she's been doing those things since at least January.  There is hope that one day we will be able to get her to use it as an assist.  An example of this would be that she could use it to do things that require 2 hands such as picking up a large ball even if she does so with her hand fisted.  But for now, if she can't do something with one hand, she won't do it at all.

I think Ellie's walking is about the same as it was in April.  She walks with a limp and sometimes her toe drags and she falls forward.  Lately she's been having some trouble with falling right onto her G Button which causes her pain and bleeding.  She is getting better about going up stairs with assistance but still can't climb or jump.  

But dance, yes she can dance and she loves it!  I remember a moment when Ellie was very sick in the hospital.  She was undergoing a sedated MRI and I was sitting in the waiting room in tears.  I was attempting to distract myself with my phone, just trying to keep from melting down in the hospital waiting room when a friend wrote, "Get an image of how you want to see Ellie after this is all over and keep reminding yourself of what you want. Perhaps a really happy fun recent moment. Hold that in your mind and keep telling God that this is what you want. When you find yourself consumed with scary thoughts go back to that happy smiling active image. I'll do the same."  I responded with, "I want to see her home, dancing to Party Rockers in the living room with her sister and a big smile on her face."  That's what I wanted more than anything in that moment but Ellie was in such bad shape that I questioned whether I would ever again get to be home with my baby, watching her dance.  So now we dance every night and it's a daily reminder of how much I have to be thankful for and how far Ellie has come. 

This has been a long summer already.  Summer used to be my favorite season--- swimming, soaking in the sun, enjoying time outdoors, the long days.....  But these things aren't possible with Ellie. We live 2 blocks from the beach that Ellie can't play on and water she can't swim in because her g button can't be exposed to sand or water that isn't chlorinated. She also can't be out in the heat.  Heat causes your blood vessels to constrict and since her issues are with limited blood flow to her brain, heat could actually lead to her having another stroke.  Heat can also dehydrate a person which would also affect her blood flow but thankfully if we realize that she is at risk of dehydration we can give her extra fluid in her feeding tube to prevent it. We are outdoorsy type people so being stuck inside for weeks on end hasn't been easy.  Needless to say we are ready for fall and some cooler temperatures!  

When you are stuck indoors all summer you have to make your own fun!

Ellie will have a surgical procedure called a cerebral angiogram on Tuesday to help determine if her brain surgeries were successful in creating a new vascular system in her brain.  This is a minor surgical procedure and she should be able to go home later that day but there are risks to this procedure such as it causing a stroke, excessive bleeding, and problems related to going under general anesthesia so we certainly wouldn't mind some prayers!  Ellie has only had one other angiogram performed and it was done after her first stroke and used to confirm the diagnosis of moyamoya disease. 

Her recovery from that angiogram was one of the scariest moments of my life.  She woke up from the procedure without issue and was resting in the recovery room with Charles and I also in the room discussing the results with her neurosurgeon.  When suddenly her mouth opened really wide, she got a distressed look on her face, and she didn't take a breath.  I started yelling, "She's not okay!  She's not okay!"  Then her alarms started going off as her oxygen levels dropped.  The nurse ran in and started giving her rescue breaths.  Thankfully after just a few rescue breaths she resumed breathing on her own.   But she proceeded to do this several more times.  To this day we still don't know the cause of these episodes but we are looking forward to having this angiogram behind us.

Thank you all for continuing to follow our journey.  I will update everyone on Ellie's angiogram on Tuesday.