What's new with Ellie Boo?

Displaying a check received from a fundraising event held at Nicholls State University in Thibodaux, Louisiana.

Our sweet Ellie continues to do well.  Every now and then someone tells me they are still praying for Ellie and that means the world to me.  I even still get cards in the mail, sometimes from people I don't even know, letting me know that they are still praying for Ellie.  And Ellie, with her pink decorative helmet, has become fairly well known around town so we often have people asking us how she is doing. We have received so much support during Ellie's illness and words can express how appreciative we are.

In mid-January Ellie had her first MRI since her brain surgery.  From the MRI they could confirm that she hasn't had any additional strokes and that the middle meningeal arteries appear thickened which would imply that the arteries are starting to take over the role of supplying blood to the brain.  So it was a good report.  The plan is for Ellie to undergo an angiogram this summer where they will run dye through the arteries in her brain and from that we should get a good idea as to how her blood flow looks and if the new arteries are transporting the blood as we pray they are.

Waking up from the MRI anesthesia

In February we switched from driving to Clear Lake for out-patient therapy services to home health services that come to our house.  I really loved Ellie's therapists at Texas Children's Clear Lake but I knew it would just be too difficult to make the 40 minute drive 4 days a week with a baby.  So now therapists come to our house 6 times a week to work with Ellie.

Working hard in therapy

Ellie, who is almost 2 1/2, is currently meeting the milestones of a 12-18 month old.  So she is still significantly behind but continues to show improvements all the time.  Since we began home therapy, we have seen her communication skills jump from that of an 8 month old to a 14 month old.  Her speech therapist has 25 years of experience and is really wonderful with her.  Ellie is still non-verbal but she is finding more and more ways all the time to communicate her wants and needs to us.  One way she is learning to communicate is through sign language (ASL).  She regularly uses the sign for "Please" (and verbally says |E|) to get what she wants and the sign for "All done".  She also knows the signs for open, bird, dog, hat, brush teeth, and thank you.  Verbally she can make the following sounds-- |E|, Ah, Ma, Nah, Mm, Uh, Ha.  She waves and says "Ha" and will repeat "Uh" when she wants to be lifted up.  She points to what she wants and will nod her head "Yes" or "No" in response to questions.  Ellie can follow basic commands like "Sit down", "Come here", or "Can you get that?"  She generally can't follow directions of things that aren't familiar to her unless you demonstrate something for her and then she is really good at being able to imitate what you do.  

She loves to play in the dirt!

My little gardener

Ellie has gotten good at walking, even walking fast.  Although she does still fall a lot, especially when she gets tired.  She wants to walk everywhere, all the time, and is unstoppable.  She also can get herself to her feet pretty effortlessly, using just her one good arm to push herself up.  She is working hard in physical therapy to get her legs strong enough to go up and down stairs but still seems to have a long way to go with that.   

Happy fairy

We are all crazy about our new baby

Ellie still has no use of her right arm/hand.  Her occupational therapist does a good job of pushing her to the point of frustration and then backing off and then pushing her again.  We put objects inside of her hand, direct the hand to objects, push the hand against objects so the hand is weight bearing, etc.  The other day her neurosurgeon said that Ellie may not get back fine motor skills with that hand but that she will absolutely get back some use of the hand with time.  As a result Ellie has become a lefty and is getting good with using her left hand for everything.

Crying because I had been trying to take pictures of Skyler and not her

Ellie's head has felt fairly uneven since her surgeries but recently we had noticed that the entire left side of her head seemed to have sunk in.  This created a dramatic feeling ridge along her surgical site and you can also feel a knot from a screw.  Feeling her head is a little disturbing and when her hair is wet you can see that her head is no longer shaped right.  So a few weeks ago we took her in to see her neurosurgeons and both of them reassured us that although this isn't supposed to happen, it's purely cosmetic and of no concern.  They said because of her extensive stroke damage, it has caused her brain to shrink and so as the brain has shrunk, her skull followed by sinking in.  We were relieved that there is no concern about this and her hair, that has started growing curly, covers it up so it's not noticeable.  Shrunken brain or not, Ellie is a smart little girl and is an overcomer.  

Indention in her head

Sweet sisters

Have yall heard the Christian rock song by Mandisa called Overcomer?  If not you should Google it and listen or watch the music video.  That's Ellie, with God's help she is in the process of overcoming all of this.  And really that's all of us because we all have things we are working to overcome.  We just have to put our trust in God because we may not be able to do it on our own but He can help us overcome all things.  So I'll end this blog entry with some of the lyrics to that song....

You're an overcomer
Stay in the fight ‘til the final round
You're not going under
‘Cause God is holding you right now
You might be down for a moment
Feeling like it's hopeless
That's when He reminds You
That you're an overcomer
You're an overcomer

Easter egg hunting