Stronger Every Day!

A week or so after Ellie's second brain surgery, her neurosurgeon said to me, "If we can just get her 6 weeks out from surgery, we should be good".  What he meant by this is that at 6 weeks out from surgery with Ellie's first brain surgery, they could already see the new vessels in her brain "thickening" which means they were starting to transport blood.  Since Ellie continued to have strokes the week prior to surgery, we were very unsure if the strokes would continue after surgery or not.  Surgery itself shouldn't necessarily stop the strokes right away since it takes weeks to months for the new vessels to start transporting blood.  And while our neurosurgeons could tell us, "We aren't sure why it happens this way but patients who are having repeated TIAs (mini-strokes) prior to surgery seem to stop having them after surgery".  But since Ellie was the only patient they have ever seen to have multiple actual strokes leading up to surgery, they could offer us know guarantees as to how she would fair after surgery.

But here we are, 6 weeks after surgery without another stroke!  She also has not had any seizures since surgery either.  God is so good!  I have no doubt that it is through the prayers being sent up by so many that allowed the strokes and seizures to stop.

We won't know for sure how successful the surgery is until 6 months or so from now when they perform another MRA on her to see and really we probably won't get a very accurate idea until possibly a year or so from now when an angiogram can be performed to look at her brain.  But, as long as she continues to not have another stroke, we can assume the surgeries were a success.  Although Ellie will always be at a higher risk of stroke than the general public, successful revascularization surgeries can significantly reduce her life time risk of having another stroke.

No more PICC line!

In addition to making it to this extremely important milestone, yesterday afternoon we had our pre-discharge family conference with Ellie's therapists, doctors, social worker, etc.  Ellie is still set to go home November 19, which is next Wednesday.  We have been here for over 7 weeks now and we are definitely looking forward to going home!  In the conference, each one of Ellie's therapists updated on the progress she is making.  

In physical therapy, Ellie is now walking with only trunk stabilization assistance and is beginning to be able to walk with one handed assistance.  Right now she can take a few steps with one handed assistance and her physical therapists (Robin) hopes that by the time she goes home she will be able to walk up to 50 feet with only one handed assistance.  Ellie can also stand on her own for limited periods of time while holding onto an object for stabilization and can stand independently for a few seconds at a time.  With a little help she can bend down to pick up objects and then stand back up.  Robin reports that when evaluating her physical milestones, Ellie's abilities fall in the range of anywhere between what a 10-16 month old can do.  I think the last time I posted as to where Ellie was at with her developmental milestones I had estimated she was at about what an average 6 month old could do, and now I completely agree with Robin in that I would estimate her abilities to be about that of a 12 months old.  So she is progressing quickly!  Ellie was measured for a helmet that we should receive early next week to help protect her head as she continues to become more mobile.

Ellie's occupational therapists, Alli and Kristin, report that although Ellie doesn't have any functional use of her right hand/arm, they are noticing an increased awareness of that hand.  They notice that she will use her good hand to pick up and move her weak hand.  This is especially noticeable when Ellie grabs her weak hand and then brings it to her mouth to chew on.  Ellie, who was right handed before this, has shown a great increase in her abilities to perform tasks with her left hand.  It's not by choice, but she is going to be a lefty and she's doing just fine in learning to use the good hand that she has.

With speech therapy, Ellie has yet to begin talking again or making sounds on command.  She did this week learn to buzz her tongue which she has been doing all the time now.  Also with speech we are trying to encourage her to communicate non-verbally.  The other day we took Ellie and Payton to ride up and down on the hospital escalator.  Ellie was very excited about this so when we told to wave, she waved to us.  We haven't gotten a wave out of her since, except when taking her back to the escalators.  This is the first non-verbal gesture we have accomplished with her.  Her speech therapist, Jean, reports that she's seen a big increase in Ellie's ability to follow basic directions and some success in matching up pictures with a simple three piece puzzle.  

Speech therapists also work with children on eating and drinking issues.  Jean commented on Ellie's absolute refusal to drink.  From there we talked about how Ellie is more than likely going to be going home on her feeding tube and so Charles and I will receive the proper training on the use of it.  We were very much hoping she wouldn't need the feeding tube by discharge but at this time that doesn't appear to be the reality of the situation.  Not getting enough fluids can put a person with moyamoya at an increased risk of stroke and that is certainly not something we want to risk.  Not to mention without the NG tube she would need to be able to take her medications by mouth.  They are, however, planning a 24 hour trial of no fluids through the NG tube to see if Ellie will drink if she gets thirsty enough.  And next Tuesday they will do another swallow study on Ellie to see if she is continuing to aspirate thin liquids.  With the swallow study they have Ellie swallow barium and then use x-ray to see if that barium goes to her stomach or to her wind pipe.  In the out patient rehab program there is a therapist who specializes in feeding issues and so they will recommend we get some sessions with her to work on getting Ellie off of the feeding tube.  Ellie also should be receiving an audiology exam in the next day or two to make sure that a hearing deficit isn't contributing to her speech problems.

When it comes to out patient therapy, Texas Children's Clear Lake clinic doesn't have openings right now so it looks like at least initially we will be driving here several times a week.  They are still finalizing her out patient schedule but each week she will receive 2 PT sessions, 2 OT sessions, and 3 speech sessions.  Her case worker said, "She will also need followup appointments with neurosurgery, neurology, nephrology, genetics, rehabilitation, nutritionists, her pediatrician....."  There were several other doctors she listed us following up with but I just can't remember them all!  I just laughed when she read off the list of followup appointments, as did a couple of her therapists.  The way it's sounding, I think we need an apartment near TCH because even though we'll be out patient we will still be here constantly! lol  

The motto of the inpatient rehabilitation unit is "Stronger Every Day" and that's what Ellie is doing.  She is getting stronger each and every day.  It's amazing to look back and see how far she has come in the past 7 weeks.  I remember lying next to her in her ICU bed, her eyes unfocused, constantly darting to the side, her inability to move, to comprehend, to communicate.....  I couldn't help but wonder if she would always be like that.  Would she be like a vegetable?  Would she even survive all of this?  And now here she is--- constantly wanting to walk and play and laugh!  Her therapists are always saying things like, "She remembers everything!  She's so smart!"  We are so very blessed!

And blessed with big sister "Super Payton" too!