Genetics and G Tube

Genetics

With Ellie's diagnosis of Moyamoya, we have always been told that there is only rarely a found genetic link to the disease.  After her first stroke we discussed the possibility of genetic testing but never followed through with it.  This time we decided if we were ever going to be interested in genetic testing that we should get it taken care of now.  We were told there were a few gene abnormalities that have been linked to Moyamoya but that less than 10% of patients with Moyamoya are found to have one of these abnormalities.  That most people with Moyamoya have no known cause for the disease.  We didn't expect to find a link but felt like testing was worthwhile for Ellie's sake and the sake of Payton and baby #3.

Ellie with her physical therapist

So we were shocked when the geneticists called to tell us that they had a "diagnosis" and wanted to meet with us to discuss it.  What they found is that Ellie inherited two abnormal copies of the gene GUCY 1A3 which has been linked to some cases of early onset severe Moyamoya disease, which is what Ellie has.  It is a very rare abnormality and is estimated that only about 10,000 people in the world have it.  In order to be affected you must receive a bad copy of the gene from both parents which through testing they could see that she received one bad copy from Charles and one from myself.  Charles and I are considered carriers because we each have a bad copy and a good copy that we could pass down, which also explains why neither of us are affected with the disease.  This means that Payton and baby #3 each have a 25% chance of having inherited it too.  We intend to get Payton tested soon.  Since early onset seems to be a common with these gene abnormality, that might be a good sign that Payton didn't inherit it.  

Ellie with her occupational therapists

We are still looking into and getting questions answered as to what this means for Ellie's health.  It does appear that it might explain Ellie's ongoing problems with high blood pressure since many people with this abnormality had problems with hypertension starting at an early age.  It also gives us some things to be on the look out for with Ellie's health.  In the only published study of the abnormality that exists, 100% of the subjects (there were only 9 people they could find to study!) developed achalasia by the age of 10.  Achalasia deals with the inability of the smooth muscles in the esophagus to open and close properly, causing swallowing problems.  Although Ellie has had some recent swallowing issues, her issues appear to be directly related to her stroke, but this is certainly something we need to be on the look out for.  Unfortunately the study of genetics is all so new that they really can't tell us exactly what this may mean for Ellie's health in the future.  

Ellie with her speech therapist

God works in mysterious ways and when we found out that we were pregnant and then a week later Ellie had her first stroke, we couldn't comprehend the timing of things.  Knowing what we know now about the chances of our children inheriting this horrible disease, we never would have allowed ourselves to have a third child and risk them being affected as well.  It would have felt completely selfish to conceive knowing these odds, even if the odds are that they have a 75% chance of being unaffected.  Not to mention, having two children one with serious health problems would certainly have felt like enough.  But God has a plan for this 3rd child and a plan for our family.  None of this is a surprise to Him.  When we were saying, "The timing of this is all wrong!"  He was saying, "No, you don't understand, the timing of this is exactly how it needs to be".

G Tube

Ellie continues to do really well, getting stronger and healthier each and every day.  After Ellie pulled her NG tube, once again, this weekend, the doctors and nurses here started talking to us about getting a G Tube placed before going home.  A G Tube is a feeding tube that goes directly into her stomach.  The G tube is much more convenient because it doesn't leave a tube hanging out her nose that she could pull.  And with the NG tube, there's always the concern that it might not be placed right and so any pulled tube at home would have resulted in a ER visit so it could be reinserted and an X-ray taken to check for placement.  So the G Tube sounds like a much better option for Ellie and for us.  Ellie is eating now without issue (although she only chews with the left side of her mouth) and is beginning to drink without aspiration.  The problem is that she is unable to drink the amount of fluids that would be recommended to help insure she doesn't have another stroke.  One theory as to why she had this massive stroke in the first place, despite a relatively healthy looking MRA the week before, is that she wasn't drinking enough and therefore the blood in her brain (being restricted already by the Moyamoya disease) wasn't able to flow properly. So there's no reason to risk another stroke due to her inability to drink the amount of fluids to keep her safe when we have other options.  Her neurosurgeon said in about a year, when an angiogram can show us that the revascularization has been successful and the new vessels are circulating the blood effectively, then at that time we can be less concerned about her fluid intake.  Also, hopefully by that time Ellie will have an understanding of negotiation such as, "Okay, if you want to go play outside I need you to first drink this cup of water".

Not at all happy with her new helmet

The G Tube surgery will be tomorrow morning.  It's a minor procedure but having Ellie go under anethesia is always scary so prayers would be much appreciated!  After surgery she should only have to stay one additional night which means hopefully we will be going home on Saturday.  Saturday is Ellie's 2nd birthday so it would be awesome if we could go home on that day.  We will have been here 2 full months.  We actually wonder if Ellie even remembers our Galveston home, because I know we barely do!  It's been a long journey but hopefully this will be it for our inpatient time at TCH.  We love the people here but we are ready to be back home again, together as a family of 4.

So worn out from her last morning of inpatient therapy that she fell asleep while eating lunch

Since we are in the process of being discharged from rehab, they printed out some paperwork for me.  Something about seeing all of Ellie's diagnosis' on paper feels especially heartbreaking.  I do believe these are all things that Ellie can overcome, it's just still sometimes unbelievable everything that she's had to go through and continues to go through.  It's tough to see your child go from being a completely normal toddler to having so many serious health issues.  And most of all, it's hard to watch your child be in pain and be unable to do anything about it.  Thankfully Ellie continues to improve and I pray one day this will all just be part of an amazing story that she has to tell.

And it continues on a second page with 1 more diagnosis

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!

A HUGE thank you! And an update.

I don't know how to even begin to say thank you to those who have donated to the fund raising effort taking place for Ellie.  "Thank you" in itself seems inadequate but I will say it anyway, thank you all so very much!  Charles and I have been blown away by the support we continue to receive through all of this.  

A special thank you to our friend Julie Romano for setting up the website http://gfwd.at/1rDJjF2, updating the website, and heading up the fund raiser.  Many others offered to do the same for us and we are very appreciative for all the offers to help our family financially.  Our sweet friends the Romanos know all too well what it is like to have a sick child at Texas Children's Hospital.  Their son Johnny was diagnosed with leukemia when he was 7 year old.  In 2008 Johnny relapsed and spent 120+ consecutive days in Texas Children's Hospital.  We prayed hard for Johnny after his relapse and his story weighed heavy on our hearts. 

Then in September of 2008, while Johnny was in TCH battling the cancer, Hurricane Ike hit, devastating Galveston.  We evacuated to my parent's house where Charles and I spent almost 2 weeks living in a travel trailer with our 2 dogs and 2 cats.  Eventually Charles came back to stay with friends in League City so that he could return to work, but the city of Galveston wouldn't let the residents return home.  A couple times they announced they would let residents return home and would let people on for a few hours during the morning but then would shut the island down again, stating it just wasn't safe enough to continue allowing people to return.  I missed those opportunities to return home so when they again announced they would allow residents to return home, I decided I needed to be there at 7 a.m. to make sure I was allowed onto the island.  

The evening before returning home I read an update online stating that Johnny wasn't doing well and that they weren't sure he would make it.  Because I was planning to leave at 3 a.m. to return home, I stayed up all night praying for Johnny and his family.  I remember the drive home so clearly, praying over and over again for Johnny and his family.  I knew the majority of those on the island had lost everything they owned and yet those possessions paled in comparison to Johnny's precious life and what his family was going through.  Johnny entered heaven on that day.  My prayers remain with the Romano family as I know the pain of their loss will always be there.

The Romanos have been such a blessing to so many people following Johnny's passing, raising thousands of dollars for pediatric cancer research.  And now they are a blessing to us in our time of need, as are so many others who have continued to support our family through all of this.

It was a difficult decision for Charles and I to accept financial help.  We very much wanted to handle everything on our own, despite numerous offers that family and friends made to help.  And even with us saying, "There's nothing we need but prayers" there were people who quietly helped us out anyway.  Ultimately we came to realize that if we want Ellie to continue to get the care she needs going home from the hospital and especially into the next calendar year, then we needed to allow others to help us.  And we are so grateful to everyone who has donated, helped get Ellie's story out there for others to see, and for those who continue to pray for Ellie's healing.  Thank you, thank you, thank you!!!

And now for an update on how Ellie is doing:

Today marks 6 weeks since her stroke.  Since my update last week, Ellie has made some pretty major improvements.  My last blog entry focused on her therapists reporting that they felt at a stand-still with her therapy because she wasn't showing any initiative to attempt to do things on her own.  Well, without the help of the medications that were discussed, Ellie has suddenly started to show a great deal of initiative.  In fact, she is down right insistent on doing the things that she wants to do.  

She is no longer satisfied to just sit still.  She is constantly rolling, trying to sit herself up from a lying position, trying to pull up to a stand (she can't yet but she sure tries), and playing appropriately with all kinds of toys.  Once you help her to a standing position she is ready to walk to wherever it is she thinks she needs to go.  She can't stand or walk independently but by the way she tries to take off, she seems to think she can. Her right leg continues to grow stronger and she can move it in a walking motion as long as she has someone holding her up for balance and support.  It's actually a constant, exhausting job to keep her from injuring herself at this point and yet it's a wonderful thing to see her wanting to do the things she used to do.  I'm flat out breaking my back (it doesn't help that I'm pregnant) trying to help her stand and walk all the time and yet I am thrilled to do it because I can see how much she is improving and I want to encourage her to walk. 

Although she still has no speech, her understanding of what we are telling her has improved a great deal.  She now follows simple directions like, "Put the toys in the box", "Build a tower with the blocks", and "Can you give me that?"  If you show her a ball and a car and say, "Which one is the ball?" she is likely to grab the appropriate item.  She also has regained an opinion as to what she does and doesn't want to do.  Yesterday I was pushing her in a little pink car when she saw a tricycle that she wanted to ride.  She threw the biggest fit until we agreed to let her ride it, even though it meant she had to do her speech therapy while on the tricycle.  

Every day they give Ellie a few sips of water and with each sip she coughs and sometimes chokes.  And she has decided she wants nothing to do with thickened liquids.  Which means she is stuck with the NG Tube for now.  She has improved with being able to eat solid foods.  At first I didn't understand how she could handle solid foods but not something as easy to swallow as water.  Her speech therapist explained to me that with solid foods or even thickened liquids, the food/liquid stays in your mouth with enough time to send your brain the signal of "Okay, we've got something that needs to be swallowed, here it comes".  But with thin liquids, they can just slip down into her airways before her brain can register that she needs to swallow.  The NG tube has obviously been a life saver for Ellie but at the same time it's a royal pain in the butt, so we are really hoping her swallowing improves in the next two weeks so that she doesn't have to go home with it. 

Last Friday was Halloween and although we would have preferred to be home with our girls celebrating a "normal" Halloween, the people at TCH and the volunteers here made it a fun day for us.  Before Ellie's stroke I had already ordered the girl's costumes.  Payton insisted that she dress as Jake from the Disney Junior show Jake and the Neverland Pirates and that Ellie would dress as Izzy, Jake's sidekick.  Then a couple weeks ago the costume store Spirit of Halloween hosted a party here at TCH where they let every child pick out a costume.  Ellie didn't attend the party so Payton picked out both of their costumes.  She said she wanted to be a princess and Ellie wanted to be a "bad witch".  The toddler witch costume was really cute so we went with her suggestion.

Halloween morning I put Ellie in her Izzy the Pirate costume.  The therapists were all dressed up for morning therapy sessions and so were most of the kids so it was very fun.  Everyone commented on Ellie's costume which she looked adorable in.  During lunch Ellie got food on her costume and before nap I realized her costume already had a large rip in it.  So it was a good thing she had a backup costume.  That evening I dressed Ellie up as the "bad witch" and we went downstairs to the Halloween carnival.  Ellie surprised us by understanding all the little carnival type games and playing them.  She sat in her little pink car and she could play games like beanbag toss by us getting her close enough to the hole to drop the beanbag into it.  She loved it and got all kinds of fun little toys!

Ellie has come a long way in the 6 weeks since her stroke and with each new skills she regains we are beyond thrilled.  Thank you all for the continued prayers and support!  I'm sure I've said this more than once but we are very thankful for all of you!

And Baby Will Make 5!

I wrote this blog entry on September 22, the day before Ellie had her most recent stroke and because of her stroke and hospitalization, I never got the chance to publish it.  The story starts right before Ellie had her first stroke and initial diagnosis.  So now I’m going to put it out there and I’ve added an update at the end.

September 22, 2014:

We are happy to announce the expected arrival of our third baby who is due the first week of March 2015!   It was in mid-July that we found out we were expecting.  The news was fairly unexpected but welcome news none-the-less.  We knew this was God’s timing and plan for our family.

God’s timing and plan for our family soon because a little harder to accept when just days later Ellie had a stroke and was diagnosed with Moyamoya diease.  While Ellie was in the hospital, she wouldn’t let me leave her side.  If I had to leave her side, even just for a few minutes, she would start crying and sometimes get hysterical.  All I could think was, “This can’t be happening….. I need to be able to be here 100% for Ellie…. I don’t need another baby right now…..”  I’m still nervous about having a 3^rd baby but the good news is they take 9 months to arrive and Ellie is now doing so much better than she was during those days when I lay next to her 24/7 in the hospital.

The first several days that Ellie was in the hospital, I started experiencing pretty uncomfortable cramps due to the stress of the situation.  Prior to Ellie’s hospitalization, I had already scheduled my first OB appointment, which was scheduled for the Friday following her stroke.  I considered cancelling it because I didn’t want to leave Ellie.  But because of the cramps, I left Texas Children’s Hospital (with Ellie happily playing with her Lala and her daddy) and came back to Galveston for my appointment.  The first thing they did at my appointment was to take my blood pressure which registered pretty much off the charts.  The nurse said, “Is there a reason your blood pressure is so high?”  To which I replied, “Probably because this is the worst week of my life”.  From there I explained to her what was going on with Ellie.  She relayed the information to Dr Haver, who is my OB and was also my OB when I was pregnant with Ellie.  

Dr Haver wanted to hear all about Ellie and showed a great deal of concern for her and for me.  She then performed an ultrasound and everything looked good with the baby.  She recommended that I video the ultrasound so that I could show it to Charles when I returned to the hospital.  Then she gave me the best piece of advice she possibly could have given.  She told me, “This baby is doing great.  I don’t want you to worry even one second about it.  Nothing you are going through, no amount of stress that you are under, is going to be harmful to this baby.  This baby is on autopilot so just take care of your other baby right now because this one is doing great.”  And every appointment that I have had since then with Dr Haver she has told me the same words of reassurance which has given me so much peace of mind through all of this.  I take my prenatal vitamins, I make myself eat and drink even when I’m feeling sick, but beyond that I haven’t worried at all about the baby that I’m carrying.   Thankfully once Ellie became more stable and my stress wasn’t quite so great, my cramps went away and other than just typical pregnancy related nausea and back pains, this pregnancy has been going as smooth as possible.

The baby is due at the beginning of March and if I happen to make it to March 4^th  then that will be the date of my scheduled c-section.  However, Payton and Ellie both arrived a little early so I’m not actually expecting to make it to that date.  Just based on my previous experiences, I would anticipate going into labor in late February and then delivering via c-section.  But, as I already said, it’s God’s timing so we will just wait and see when this baby wants to arrive.  The baby is already measuring big, which has been typical of my babies and is likely why they show up a little early.  

Despite all of our doubts and fears, we are now feeling excited about the arrival of the baby who we feel will complete our family and we can’t wait to meet him or her.  Ellie doesn’t seem to really understand about the baby, but big sister Payton is beyond excited.  Payton has always loved babies and she can’t wait to have another sister or brother.    She is hoping for a brother but said she would be happy with a sister too.  When Ellie is asked “Brother or sister?” she replies with “Sister” probably because that word is familiar to her.  Payton wants to name the baby “Car” if it a boy and “Carly” if it’s a girl.  We are going to wait until birth to find out gender but either way our family will be very happy with the new addition.  Babies are a blessing and we are feeling very blessed.

Update as of October 26, 2014:

My pregnancy is still going well.  Since I wrote this post, Ellie suffered another major stroke and we have been living in Texas Children’s Hospital for over a month now.  For the most part, Ellie is currently like a 6 month old, both physically and mentally.  So the thought of having another baby to care for in addition to her is still pretty scary.  But at the same time, we hope and pray that Ellie is doing much better by the time this baby arrives and we do see her continuing to make improvements.  And we know God will take care of our family and he won’t give us more than we can handle.  We are also very lucky to have the support of our family and friends and we know there are numerous people we could turn to if we need help.

At almost 21 weeks, I am still not really feeling this baby move.  But at my anatomy ultrasound last week, the technician reported that my baby was very active and that I would likely start feeling him or her move soon.  Everything checked out perfect with this baby except the baby’s kidneys are both enlarged.  Ellie had an enlarged kidney while in utero too but by the time she was 2 months old it had resolved itself and was normal sized.  So even though it is likely something that will resolve itself, they like to keep an eye on it so I am scheduled for two more ultrasounds later in this pregnancy.

Overall I would say this has been a pretty easy pregnancy so far. I’m feeling pretty good during this second trimester.  I pray this pregnancy remains uneventful and that this baby is born very healthy!  

And now a tacky bathroom belly selfie, exclusively for my blog readers.  This is the baby in the belly at 21 weeks and is actually the first belly picture I have taken this pregnancy.....

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!

More strokes, surgery, and hospitalization

I'm writing this blog post on my cell phone while snuggling with my Ellie in a hospital bed so the chances of me proof reading it are even more slim than normal so please excuse any mistakes....

My last blog post was titled positive results and we did feel that the left side of her brain looked minimally affected by the Moyamoya disease.  But we also knew she was potentially having some symptoms.  The symptom we were monitoring was her eye blinking. But what happened a week later we never would have predicted.

Tuesday, September 23, 2014 (exactly 2 months after her 1st stroke) started as any other day.  Ellie didn't have an appetite and hasn't had one the night before but otherwise she didn't seem ill.  I dropped her off in her classroom at school and then spied on her from the hallway.  I could tell she was pretty upset. A part of me wanted to go back in and hold her but the other part told me she was okay and that I needed to give her time to get used to school.  And while I stood there questioning what I should do Miss Trisha, the assistant director of the school, went into the room and held Ellie which seemed to calm her down.

From there I went to the store to get groceries for the week.  When I was about to check out, Miss Tricia called to tell me that they hadn't been able to calm Ellie down so I told her I would be right there to pick her up.  I took Ellie home and even at home there seemed to be nothing I could do to calm her down either.  She wasn't interested in eating lunch and so I held her in my lap  because she was so upset while I ate my lunch.  Ellie has had plenty of days like this so I just gave her Tylenol and figured she had a bad headache.

I put the girls down for their naps around 1 p.m.  At just before 2:15 p.m. I heard Ellie screaming and went into the room to get her up from her nap.  When I saw her I knew immediately she had suffered another stroke.  She was lying on her stomach trying to sit herself up but couldn't.  I brought her into the living room and quickly assessed her, noticing that she couldn't sit independently and didn't appear to be able to move her right arm.  So I called 911 and explained that my baby has a disorder that makes her prone to strokes and that I felt she had suffered a stroke.

An ambulance arrived at pur house quickly.  I told the EMS that I also had a 3 year old who was sleeping so he took Ellie to the ambulance while I went to wake Payton.  I felt so bad telling Payton, "Hurry, get up, an ambulance is here to take Ellie to the hospital, she's very sick!  Sit down so I can put your shoes on!"  Payton is not one for being woken up suddenly and she was upset that her nap time clock was still on red not green (her clock turns green when she can come out of her room after nap time).  A couple minutes later, Payton and I joined Ellie in the ambulance.  Ellie was very upset so I sat on the stretcher holding her and they buckled Payton in to a seat behind us.  Payton looked like she was about to cry so I kept saying things like, "Yaaay!  Look at you riding in an ambulance!"

When we got to try hospital they rushed us in and they had to keep telling everyone coming up to asses us, "It's the baby who we think has had a stroke, not the mother".  I guess because strokes in children are so rare they figured everyone would assume I was the one who had suffered the stroke.

They moves us from one room to try next and eventually down the hall for a CT scan, with Ellie and I on the stretcher and Payton tagged along behind us.  I kept saying, "Follow us, Payton" and felt concerned about her well being in all this chaos as well.  Payton was such a trooper and I'm so thankful that she is the type of person who just takes things in strides.   Eventually Charles was able to get to the hospital (he works an hour away) and could help take care of  Payton.  And then around 6 p.m. my mom arrived from central Texas and was able to take Payton home.

While at UTMB, Ellie was pretty upset and besides the paralysis on the right side of her body and the lack of head support, we also noticed that she was nonverbal.  Around 5pm Ellie started having seizures which was really scary.  The first several seizures were the worst because her eyes went hard to the left, her face would twitch, she would drool.....  Later the seizures presented themselves as a consistent arm twitch.

From the moment we arrived at UTMB the plan was to have her transferred to Texas Children's Hospital.  But we had to wait for hours for TCH's "Kangaroo crew" to arrive.  Around 8 p.m. they arrived to transport us to Houston.  They had me ride in the front seat of the  ambulance and I couldn't see how Ellie was doing so the trip was petty nerve racking for me.

Once at TCH they took Ellie to MRI pretty quickly.  They didn't want to sedate her so they had Charles stick his body into the MRI machine to hold her down.   From the MRI they could tell that she had indeed had another stroke but that this one was much larger than the stroke she had 2 months ago.  It took up 2/3rds of the left side of her brain and blocked 2 major arteries.  This explained why both her arm, leg, and speech had been affected.  Unfortunately they warned us that with a stroke of this size the swelling might cause things to get worse.  So after getting the MRI results, Ellie was taken to PICU.

This all felt so hard to believe.  How she could go from having an MRA the week prior where her Moyamoya had been seen as very minimal to suddenly having a massive stroke?!   So just like the first time we went through this, it was very hard to come to grasps with.  The thought of, "I can't believe this is happening again!" kept running through my mind.

Once in PICU it was a comfort to have doctors and some nurses immediately remember us and who we felt comfortable with.  ICU is one of the few places where you don't take offense when someone says, "I had hoped I would never see you again!"  We had certainly hoped to have never had to be in PICU again either. 

The following day Ellie continued to act in pain and her only comfort was having me lie by her side.  I was glad that even though she seemed very out of it, she was always aware of if I was with her or not.  The next morning Ellie underwent a sedated MRA.  The MRA showed a bit more swelling than what was seen the previous evening which was to be expected.  Otherwise, just like the MRA taken the previous week, it didn't indicate a progression of the Moyamoya disease. When I asked her neurosurgeons what could then explain the massive stroke they flat out told me that they didn't know. That even though the brain still looked rich in oxygen on MRA that it must not be a sufficient amount.

Like the last time we went through this, the plan was to give her a few days to recover from the stroke and then consider going with surgery.  Because of the size of the stroke and the potential for serious swelling, Ellie was kept in PICU under close watch and high doses of sodium to help reduce the swelling.  She was also placed on seizure medicine that stopped the seizures she was experiencing.

The evening of our second night in the hospital was a scary one.  We were sharing a PICU room with a tiny 2 month old baby.  A nurse went in to check on her and then called for another nurse to come see how purple the baby's coloring was.  As the other nurse came into the room, one of them yelled, "She's not coming back up!  She's not coming back up!  Pull the code!"  Suddenly no less than 15 nurses, the PA, and doctor ran into the room.  You could hear the fear in their voices as they instructed each other on what to do.  The mother, who was there alone, went into the hall and started crying.  Charles and I just sat there paralyzed, whispering things like "Breath baby! Dear God please help the baby!"  Holding Ellie and realizing how easily that could be her, I just melted down.

They kept trying to get a breathing tube placed but the baby was so tiny that for some reason it kept slipping out of place and the fear and panic would happen all over again.  Each time that they would think they had it in place, they would need to take an x-Ray.  Being pregnant I would be asked to leave the room.  And there in the hallway was that poor mother. She had told me she doesn't speak English but I still gave her hugs and told her how I was praying for her and her baby.  That Jesus was watching over her baby and she was going to be okay.  I just didn't know what else I could say or do.  I felt so helpless and so shaken up myself.

They continued to work on the baby for hours, asking me to leave the room numerous times.  One of those times I went into the waiting room for a cup of water.  It was now the middle of the night and old lady there surprised me by taking my hand and saying, "What's going on?"  So I told her about the 2 month old who wasn't doing well and that I was also scared for my baby.  She said, "My granddaughter is in bad shape too and they aren't holding out much hope for her but I know Jesus can heal her."  Then she asked if she could pray with me and holding my hand she prayed for healing for the 2 month old baby and for Ellie.

After working on the baby for over 5 hours, they had a breathing tube in place and she was stable again.  At this point it was about 2 a.m. and we were finally able to go to sleep.  Around 4 a.m. I woke to our nurse leaning over Ellie telling her to wake up and take a deep breath.  Having just woken up, I didn't register what was going on at first.  Then I heard Ellie's alarm going off and realized her oxygen levels were dropping.  The nurse yelled for another nurse, who rushed in, and she kept encouraging Ellie to breath.  The whole event lasted only a minute but minutes like that are terrifying.  Ellie then went back to breathing normally and was okay after that.  The nurse reported that Ellie was twitching and it appeared she was having a seizure.  Because she was already on seizure meds and the seizure had stopped, they didn't change anything.

The next day the teenage girl across the hall from us coded.  It was a terrible sight as the nurses traded off giving her chest compression trying to restart her heart.  Finally after a long effort to save her, they stopped their efforts.  The girl was the granddaughter of the woman who had prayed with me the night before.   You don't know these people and yet you feel so heartbroken seeing what the families around you are going through.  Sometimes I would find myself being so thankful that although Ellie was clearly in bad shape, she was doing better then the children around her who were on ventilators.  Other times I would feel paralyzed with the fear that if this was happening to those around me, it could happen to us too.  Obviously you have to quickly push those thoughts from your mind but sometimes even still the fear has a way of remaining.

Thursday they decided to put Ellie under anesthesia to insert a PICC line to make blood draws and IV usage easier.  A PICC line is like an IV only it has a line that goes up her vein towards her heart making it more reliable than an IV.  The following day they did a swallow study on her which came back fairly inconclusive because she was really upset.  Ellie has no interest in eating or drinking so they had to force the foods down her throat so it's no surprise that it was upsetting to her.

By Saturday Ellie hadn't had anything to eat or drink since Tuesday morning so they inserted a NG tube (a feeding tube).  She started receiving PediaSure through the feeding tube and they were able to cut back on some of the IV nutrition and fluids.  They continued to pump her full of sodium to help reduce the swelling in her brain.  As long as the swelling wasn't excessive, the plan was for her to have brain surgery on Wednesday.

Tuesday morning Ellie had an MRI to see how her brain was healing from the stroke and to ensure surgery could proceed the following day.  They decided to do a quick MRI without sedation.  Ellie was hysterical during the procedure.  When they brought her out of the MRI she was still screaming and crying.  In the middle of the hysteria I watched as her eyes opened really wide, became fixed in place, her mouth opened in a strange way, her back arched up off of the bed, and her immobile arm lifted up.  I said, "I think she's having a seizure!"  The nurse said, "Let's just get her back up to ICU".  On the elevator she had another one and once in her ICU room her seizures were coming approximately every 2-3 minutes and lasted for 7-10 seconds each.  They gave her a dose of emergency anti-convulsant medication and when that didn't help they gave her an increased dose of the preventative seizure medication that she was already taking.  She continues to have the seizures so they gave her another dose of the emergency medication.  Finally the seizures became less intense in nature and eventually stopped all together.  Because of the high dose of medication they had given her, they had to put an oxygen cannula on her to monitor her oxygen levels since some people have breathing difficulties after such medications.  Thankfully she was just really out of it for the rest of the day but didn't experienced any breathing problems.

Soon after the seizures, Ellie's neurosurgeons came to us with bad news about her MRI results.  Not only was the swelling worse in her brain but they could see that she had experienced 2-3 new small strokes in the last week.  These new strokes had occurred on the same side of her brain as the initial massive stroke but in a location they aren't used to seeing strokes in Moyamoya patients.  And they admitted they had never had a patient who continued to have new strokes after the initial stroke.  The initial plan had been to postpone surgery if there was still a lot of swelling and wait until the surgery could be done when her brain was more recovered from the stroke.  But given the new strokes they said although the surgery would be more risky, they dared not wait seeing that she was continuing to get worse.  Since they'd never run into this situation before, they agreed to call their friend Dr Scott of Boston Children's Hospital, who is considered one of the leading Moyamoya surgeons in the world, to see what he has done in this kind of situation.  Unfortunately Dr. Scott said he had only had 1 patient who after the initial stroke continued to have additional strokes.  In that patient he made the decision to wait until the strokes had stopped and the patient had time to recover before proceeding with surgery but sadly the patient ended up passing away before surgery could be attempted.  Hearing this was the nudge we needed to make the decision to go with surgery even if the surgery would be considered risky.  Ellie's neurosurgeon told us that during the conversation Dr. Scott had said, "I am so sorry!" to which Ellie's neurosurgeon said, "Don't be sorry, you would never know things were this bad if you saw how well this child is doing".

The other thing we had going against us is that surgery isn't a quick fix.  The intent of surgery is to provide the brain with new blood vessels to start transporting the blood in the brain in place of the diseased vessels but it takes weeks to months for those vessels to grow and start to transport the blood.  Although neither Dr Dauser (our neurosurgeon) or Dr Scott had done surgery on a patient continuing to have strokes, they both agreed that for some unknown reason patients who were experiencing repeated TIAs (mini, non-permanent strokes) prior to surgery tended to stop having them immediately after surgery.  So the hope is that Ellie will have the same results and will not suffer additional strokes following surgery.

I've had a lot of scary moments lately and Ellie's brain surgery that took place on Wednesday, October 1, 2014, was definitely one of them.  We knew how risky the surgery was going to be.  The plan from her neurosurgeons was to open her skull and assess the amount of swelling on her brain.  If the swelling didn't look excessive then they would put in a drain to drain off some of the fluid and then go ahead with the dural inversion procedure.  If there appeared to be too much swelling and the procedure would be considered too risky then they wouldn't do it and would close her back up.  They said with the entire surgery they were going to try to do it fast to get her off the operating table as quickly as possible.  Of course what they consider fast (2-3 hours) feels incredibly slow when you are sitting in the waiting room without knowing how she is doing. 

When surgery was complete and the neurosurgeons called us into the consulting room, I could see smiles on their faces and when they said everything had not only gone well but had gone better than expected, I breathed the biggest sigh of relief.  It had gone better than expected because when they opened her up they found the swelling not to be bad at all and didn't even need to put in an external drain.  She also had no issue with anesthesia and woke from surgery able to breath on her own.  So many people were praying during Ellie's surgery and we know it was through those prayers and God's grace that surgery went so well.

The first few days after surgery were tough.  Initially we were dealing with trying to manage her pain and keep her comfortable.  She had a high fever that lasted several days and didn't respond well to Tylenol.  They felt like it was her brain having trouble regulating her body temperature which is a problem she had off and on after her first stroke too.  She also started having trouble focusing her eyes (they would dart to one side repeatedly) which we feared was a sign of another stroke or seizures.  An EEG, which was hard for her to endure, indicated they weren't seizures and our neurosurgeons reassured us that it could be caused by brain swelling and should resolve itself as the swelling decreased.  They seemed to have been right as it did resolve itself.

We dealt with ongoing high blood pressure issues.  Ellie's blood pressure always runs high but there were times following her surgery where it would get scary high for extended periods of time.  Her doctors are very hesitant to medically treat her high blood pressure since having her blood pressure drop could be very dangerous for someone with Moyamoya.  But after hours of her systolic pressure being in the 160s and 170s, they did end up treating her.  Just as a side note, a systolic number in the 90s is what is common for someone her age while a good number for Ellie is in the 120s.

About 5 days after surgery, we noticed Ellie's stomach had become extremely distended.  We tried monitoring it for awhile and gave her laxatives and stool softeners to get things moving since they felt the distention was gas trapped in her stomach but nothing was working.  Then one day she pulled her NG tube out.   This left Ellie without receiving an NG tube feed for over 4 hours.  And yet when the nurse drew back residuals (they pull the fluids back out of the stomach to evaluate how much is there and then they put it back), she drew back 150 cc which was 4 hours worth of food.  Meaning she wasn't able to digest the formula they were giving her and was backing up.  We remembered back to when she was about 3 months old, having blood in every stool, and was diagnosed with a milk protein intolerance and we wondered if that's why she was unable to digest the formula.  After trying a couple different formulas, she ended up on a hypoallergenic formula called EleCare which she seems better able to digest.

Also at about 5 days after surgery, a physical therapist came to work with her and she put Ellie on her stomach to encourage her to use her arms to support herself.  Ellie became hysterical and yelled/cried what sounded like "Mama, Mama!"  This was the only time since her stroke that she has spoken and we unfortunately haven't heard it since.  I can't wait for the day I hear her say it again!

The first several days after Ellie's stroke she did not smile, laugh, or really focus on anything said to her.  She simply rested and when anyone tried to mess with her she cried.  This included if I tried to show her a book or a toy or anything.  Everything was just too overwhelming for her traumatized brain at that point.  A day before surgery she started smiling and squealing again when I did things like kiss her neck and played peek-a-boo with her.  But after surgery she went back to not feeling well enough to play or smile.  But after about 5 days, her little personality emerged again and her smile returned.  She thought it was funny when she stole the glasses off of my face and I put them on her and then showed her what she looked like on my cell phone. 

After spending 12 nights in PICU, on Sunday October 5, 2014, Ellie got moved out of PICU and to a regular hospital room on the neuro floor.  Our nurses and doctors during our time in PICU had been phenomenal and while we will miss them, I can't say that we will ever miss being in PICU.  Being in a regular hospital room feels like such a luxury after being in PICU, with our own bathroom, shower, and couch for Charles to sleep on.  Although we are also very grateful for the access we had to the Ronald McDonald House during our time in PICU which gave us a place to shower and a bed for Charles to sleep in so that he only had to spend one night in the PICU waiting room. 

We spent 8 days on the neuro floor.  During that time we continued to deal with her digestive issues.  Her appetite finally returned (prior to this she absolutely screamed if you tried to offer her anything to eat or drink) but when we would give her baby food we would then hear it in her chest which meant she was silently aspirating it.  Her stroke had weakened her swallowing muscles so some of her food and drink were going into her lungs rather than into her stomach.  This can be a dangerous problem so we continued to give her a few spoon fulls of food per meal so she could practice swallowing but otherwise didn't allow her to eat or drink. 

Overall we could tell she was starting to feel better and becoming more alert and interactive.  The occupational therapists, physical therapists, and speech therapist started coming in to work with her daily.  Initially therapy was terrifying to her.  She had been caused pain by so many people that she immediately assumed anyone coming to mess with her was going to hurt her.  Also doing things like being in a sitting position was very scary to her.  Her head support had mostly returned but she had little core body strength so she required a lot of help to sit upright. 

After a few days on the neuro floor we noticed her core body strength returning and all she required was one hand on her back to help her stay in a sitting position.  Also, when held in the standing position, she would sometimes stiffen her weak leg to help her stand. 

The weekend of October 11-12, after not seeing Payton for a few days, she and my mom stayed in a hotel across from the hospital.  It was fun to be able to spend time with them and for Payton to finally get to see Ellie again.  Ellie enjoyed being held in our laps, watching Payton cruise up and down the hospital hallway on a little tricycle. When Payton would ride by, we would stick Ellie's hand out so she could give her a high five.  One evening I said, "Payton, stand by Ellie for a picture".  Payton did and Ellie reached out and took her hand.  Ellie had not been wanting to be touched at all and yet when it came to her sister, she wanted her touch.

We wanted to make Payton's birthday week special so that Sunday Charles took Payton to a trampoline place to have some fun with her.  The following day, my mom stayed with Ellie while Charles and I both took Payton on the metro train to Hermann Park.  She was able to play at the park for a little under an hour when it began to rain so we then spent another hour riding the train for fun.  Payton had a great time and so did we.

On Tuesday, I went back to Galveston and took Payton to school.  I had an OB appointment which my mom joined me for.  The baby I am carrying had a good, strong heartbeat and everything else checked out fine as well.  After the appointment we went to Academy to pick out a "big girl bike" for Payton's birthday present.  Payton has only seen the movie Frozen once but she has a couple of the books and she likes to play Frozen with her friends so we picked out the Frozen bike for her.  We then went to her school where we celebrated her birthday with her classmates.  Payton had Jake and the Neverland Pirate party favors and Hello Kitty cupcakes to share with her friends.  She and her friends seemed to have a fun time.

While I was in Galveston, Ellie got transferred from the neuro floor to the inpatient rehabilitation unit.  Charles was with her for the room transfer.  We had been anticipating this move and have been told that they estimate she will be here for approximately 3 weeks.  But that it is based on her progress and could be up to 5 weeks.

Wednesday, October 15, 2014, was Payton's 4th birthday.   In the morning she and my mom took her to the Houston Zoo which is conveniently located just down the street from the hospital.  It was a beautiful fall day!  We started by taking a train ride around Hermann Park.  After that we asked Payton what animals she wanted to see and she said the flamingos.  After finding the flamingos we saw a few more animals before ending up at the petting zoo and playground.  Payton loved petting the goats and playing on the very crowded playground.  She kept going back and forth between the two activities and didn't want to leave them.  Eventually we left that area and went to ride the carrousel.  After that we ate lunch by the giraffes, rode the carrousel one more time, and then returned to the hospital. 

Charles reported that Ellie's first day of rehab had gone well.  That she had stayed in a sitting position unassisted for a couple of minutes and she ate pureed food well for the the speech therapist without sounding congested.  Ellie seems fairly comfortable going to the room that they call the "gym" for therapy and is getting more comfortable with having therapists work with her.  She still often gets upset when they try to get her to stand and walk with assistance and when they try to force her into positions to be weight bearing on her immobile hand/arm.

Payton went home to take a nap and then late that afternoon Charles drove to Galveston.  Payton opened all her birthday presents and then they went out to eat at her favorite restaurant, the Rain Forest Cafe.   The Rain Forest Cafe has a frog mascot named Cha-Cha who walks around the cafe while you are eating.  Payton has always loved Cha-Cha so it was really funny when they arrived at the Rain Forest Cafe and the cafe was hosting a birthday celebrating for Cha-Cha.  When Cha-Cha came to their table, Payton excitedly told him, "It's my birthday too!!!"  Because it was Cha-Cha's birthday, Payton got all kinds of fun little toys and she couldn't have been more happy to share her birthday with her favorite frog!   After eating they went back to the house and had Hello Kitty birthday cake with candles and singing, of course.

The next day, Payton and my mom came to the hospital to visit during Ellie's nap time.  It might have been bad timing except that the store Spirit of Halloween was throwing a Halloween party at the hospital for patients and their siblings.  Payton got to attend the party where she picked out costumes for she and Ellie.  She announced, "I want to be a princess and Ellie wants to be a bad witch!"  Thankfully the bad witch costume is really adorable.  I already have Jake and the Neverland Pirate costumes for both girls for Halloween because that's what Payton had requested but my girls love to dress up in costumes year round so I know these new costumes will get lots of use.  Spirit of Halloween also gave out all kinds of fun hats, socks, and toys.  And Payton got to paint a pumpkin and decorate a mask. It was such a cool event!

So that leads us up to today.  This Tuesday will mark 4 weeks since Ellie's stroke.  For the first 1 1/2 weeks after Ellie's stroke she remained like a newborn.  Unable to support her own head or body, uninterested in things, unable to communicate beyond just crying, unable to eat, etc.  Now I would compare Ellie developmentally to about a 6 month old.  She can now sit unassisted but you still have to watch her because if she gets tired or distracted she will fall over.  She is doing a lot better with eating purees and has started to be able to chew puffs.  She is still on a feeding tube because she isn't yet taking enough orally to fulfill her nourishment and hydration needs.  The main issue with this is that we think she is likely to still silently aspirate liquids so she can't drink water or anything other than some thickened juice and would likely have a very hard time taking oral medications.  

When one person supports her trunk from behind and another person holds her hands and guides her, she will sometimes move her legs in a walking motion.  This is as close to walking as she is right now and doesn't have the balance, coordination, or strength to be close to independently walking at  but we practice this several times every day.   Her leg does have the ability to stiffen to help her stand as long as someone is supporting her.  Her leg and foot are beginning to stiffen in an unnatural way so they are having a brace made for her leg to help prevent this.  Her right arm and hand remain completely paralyzed.  She does occasionally have a little involuntary movement in her arm (when sleeping) but has no intentional movement of her arm.  It stays limp by her side.  Her fingers at times are showing signs of spasticity (curling up in a tight fist) so she wears a hand/arm brace to keep her fingers straight.  In general, she acts as if she doesn't realize her right arm, hand, or leg even exist so much of her therapy is designed to try to bring awareness to that side of her body.

She currently has no speech.  She will squeal and laugh when happy and cries when upset.  She seems to understand some of what we say but generally doesn't follow basic instructions.  She doesn't accurately identify basic objects.  By this I mean if you hold out a ball and a car for her and say, "Which one is the ball?" she is just as likely to grab the car instead.  She doesn't point, shake her head yes or no or communicate in other nonverbal ways beyond smiling or crying.  And yet if you ask her, "Do you want to eat?" you had better give her food immediately or she will start fussing at you.  She also finds things like pulling my hair to be hilarious, enjoys playing peek-a-boo, and laughs at us when we are acting silly.
 
At times it's really hard to see her like this but at the same time we continue to see her improve and are so thankful that she continues to head in the right direction.  It's just really hard to watch someone you love go through so much pain.  We are very grateful for all of the prayers she has received and we believe she is doing so well thanks to those prayers on her behalf.  As long as she doesn't suffer another stroke, because she is so young her prognosis is good.  Her young brain should continue to heal and create new pathways to compensate for the damaged areas of her brain.  It's just going to take time.  Because the surgery isn't a quick fix, Ellie does still remain at an increased risk of having another stroke so we appreciate all the continued prayers for her.  She has been a rare and severe case of Moyamoya disease and on MRI her brain looks very damaged.  And yet she is here and alert and has a sparkle in her eye again.  She is gaining strength and making progress in therapy.  She is doing well, is oftentimes happy, and we have high hopes for her future.  She is a fighter but most of all she has a whole lot of people praying that God would show his power and glory through her healing.  God clearly has a special plan for her life and she is one of the greatest blessings in our lives.