One Month Since Stroke and Where We Are Today

Today marks exactly one month since Ellie suffered her second major stroke.  One month of living here at Texas Children's Hospital.  We miss home but most of all we miss Payton.  My mom has been wonderful about bringing her here several times a week but we still miss her a lot.

We have been in inpatient rehab for over a week now and most of what I updated on the blog this past Sunday remains true today.  On Thursdays, all of Ellie's therapists, the IRU physician, and our case worker all have a meeting to evaluate how Ellie is progressing.  Today the discussion revolved around all of the therapists reporting that although Ellie is making small progress, they are feeling at a stand-still with her because she fails to show any initiative in doing things herself.  If they lay her on her belly she will scream until someone sits her up instead of trying to roll over or sit up, if she is sitting and they try to tempt her with toys she will make no attempt to move her body to get to the toy, she doesn't communicate with them beyond crying, and she no longer puts one foot in front of the other to walk when being held up. 

The doctor explained to me that the part of her brain that was damaged by the stroke is the part of the brain that controls a person's initiative to do things so this makes sense that she would struggle in this area.   He told me that sometimes if they give people with brain injuries medications normally used to treat ADHD, like Ritalin, that it can help to stimulate this part of her brain.  But we all agreed to give her more time before exploring a medical option like that. 

Initially they estimated our stay in inpatient rehab would be about 3 weeks but now they are discussing keeping her for 5 weeks.  This is clearly the place where she will receive the best possible help, the catch is that insurance won't continue to pay if she doesn't continue to show progress.  So, she is showing slow progress, we just have to make sure she keeps going in that direction.

I know this all sounds really negative but earlier in the week Ellie's neurosurgeon told me something that made me feel very hopeful about Ellie's recovery.  She told me in children who have severe problems with seizures, they will sometimes remove an entire half of that child's brain.  She said when they do this in a 10 year old child, the child will never walk again and will lose a great amount of function that they will never regain.  But when they remove half of the brain in a child under the age of 2, that child will eventually be able to learn to walk, run, throw a ball, etc.  This is not something they are considering doing with Ellie, by any means, her neurosurgeon just used this as an example to show that she feels Ellie can make a really good recovery from all of this.  So even though Ellie's brain is badly damaged from the strokes, we are really fortunate that she is so young and her brain can continue to make new connections to regain the functions she has lost.

And on to some other positives.....  Sometimes Ellie shows Charles and I things that she doesn't necessarily show in therapy.  I have seen her voluntarily move her right leg recently.  If she's in her stroller and is excited to be going for a walk she has started to move it around in her excitement.  I have also seen her move it a few times while she attempts to adjust her position in bed.  

Other improvements we have seen:  When she is lying on the bed and the bed is at an incline, she can oftentimes sit herself up.  She continues to improve with her ability to sit unsupported.  Ellie is getting pretty relying about giving high fives on command.  She enjoys playing with toys and gets very excited about being pulled around in a wagon.  She enjoys spending time with Payton.  Ellie is showing improvements in her ability to chew and eat soft solid foods.  She is good about using her tongue to move things to the left side of her mouth since the right side of her mouth doesn't seem able to chew properly.  She doesn't appear to be aspirating purees anymore.  All signs of progress!

The past few days she has acted in pain but we've been unable to pin point what is hurting.  She has also not had much of an appetite during this time.  Tylenol does sometimes seem to help so we are hoping it's just something like teething and nothing serious.  

Even if she isn't progressing as fast as the doctor and therapists here would like, I just thank God for every single day we make it through where she hasn't had any major medical issues and continues to show improvements no matter how small.  That's what really matter at this point! 

Thank you all very much for the continues support and prayers!