Positive Results

Thank you to everyone who prayed for Ellie during her sedated MRI/MRA.  She thankfully had zero problems with anesthesia and after about 40 minutes in recovery we got to come home!  Because of her past incident with anesthesia we don’t take that for granted at all and are very relieved and thankful that everything went so smoothly. 

The results from the MRI/MRA showed the same stenosis of the interior carotid artery as was seen in her angiogram.  In other words, they saw no disease progression on the left side of her brain (the side we are monitoring for disease progression).  The radiologist did note an additional stenosis but both neurosurgeons feel it’s an error on the picture and not an actual vessel stenosis.  There was also no sign of any strokes on that side of her brain.  

On the right side of her brain (surgical side) they are already seeing improvements (growth of the new artery) which they wouldn't have expected to see this soon but think she is improving faster than most because that side of her brain was so starved for oxygen prior to surgery.   So this was wonderful to hear and hopefully indicated that the surgery on that side of her brain was a success.  

The neurosurgeons are still concerned about Ellie’s blinking episodes.  The concern is that the blinking could indicate that she’s having TIAs (mini-strokes).  So neurosurgery is referring us to neurology to see what their opinion is on the blinking.  Ellie does the blinking thing multiple times every day and we haven’t been able to establish a pattern as to when or why she does it.  It does seem that she does it more often when she is upset but she also oftentimes does it when she’s not upset. 

Her neurosurgeons seem fairly on the fence as to when we should proceed with surgery on the left side of her brain.  Initially they said they would give her time to recover from the first surgery and would do the second surgery approximately 6 weeks later.  But since that time they have taken a more “wait and see” approach because they are concerned if they proceed with surgery too soon that the surgery will be less likely to be successful.  We only have one shot at the surgery so we certainly don’t want to jump too soon.  At the same time, we also don’t want to wait too long and risk her having a stroke in the meantime.  Her neurosurgeons are still talking as if they intend to proceed with surgery in a matter of months not years but there is no set timeline right now.

I’m not going to lie, the weight of this decision and the uncertainty of it all is highly stressful.  For now, we are just trying to take things one step at a time and so right now we know the next step is to see what neurology thinks of her blinking.  

Otherwise she continues to do great.  She loves to play with Payton, loves Dora the Explorer, enjoys being outdoors (when it’s not too hot), likes cats, and likes to dance.  She is very opinionated, throws huge temper tantrums when she doesn’t get her way, and doesn’t yet enjoy attending preschool.  In other words, Ellie is your typical almost 2 year old and we are very thankful for that!

EEG Results and MRA Tomorrow

Ellie Update

  

Overall Ellie has been doing really well.  Two weeks ago, on the way home from her second day of preschool, I noticed her do this thing where she blinks her eyes really fast and she has been doing it a lot ever since.  She will usually blink anywhere between 6-15 times really fast and then within seconds she goes back to whatever it was she had been doing.  She doesn’t act “out of it” or anything, it’s just a strange blinking thing she has started doing.  

Two days later, we were at the first Texas A&M home football game of the season.  It was a night game but in order to get into the game we had to wait about 40 minutes in the sun.  Ellie looked pretty hot and so, following her neurosurgeon’s orders to not let her get over-heated, I took her to the medical room and asked them if it was okay if we sat in the air conditioning for a few minutes.  The young EMT in the room was very interested to learn about Moyamoya and as I was explaining it to her and pointing to Ellie’s head, I realized Ellie had a golf ball sized knot over her surgical site.  This was alarming and after returning to our seats I told Charles and he went and started trying to make phone calls to talk to the on-call neurosurgeon at Texas Children’s Hospital.  My dad (who is an orthopedic surgeon) was with us as well and it was reassuring to hear from him that sometimes fluid just forms over surgical sites and that it was likely not serious.  The on-call neurosurgeon seemed to agree and advised we call Ellie’s neurosurgeon the following Monday to make an appointment.  In talking to Ellie’s neurosurgeon, she didn’t feel like the lump on her head was significant but she was concerned about the blinking spells so she ordered an EEG to be performed that Wednesday.  

For the EEG they had to “glue” and then tape a whole bunch of leads (I believe the technician told me 27 leads) to Ellie head and she did not appreciate this process at all.  It probably took about 20 minutes and she screamed her head off the entire time.  Once the leads were in place, they had her and I lie down on a bed and they turned the lights off and told me to try to get her to go to sleep.  Ellie was fairly quiet and calm throughout the test but didn’t fall asleep as they had hoped.  Following the EEG we went to the neurosurgery floor of the hospital and were able to get both of her neurosurgeons to examine the lump on her head.  Both agreed that it was likely just a collection of fluid and should resolve itself.

 

Thursday afternoon a neurosurgery nurse (not the one we are used to talking with because she was on vacation) called to tell us that the EEG results didn’t show any signs of seizures but what it did show was decreased brain activity on the right side (surgical side) of her brain.  And as a result, her neurosurgeon wanted to move her MRI/MRA up from October 29 to the following week.  Our first reaction to hearing this news was, “Well wouldn’t you expect to see decreased activity given the fact that the surgery probably hasn’t had enough time to take effect and she had almost no blood flow to that side of her brain prior to surgery??”  But we also thought “Well, her neurosurgeons knows this and something they are seeing is causing them to be concerned enough to move up the MRA”.  So then the concern was, “What if they are thinking the surgery wasn’t successful….?!”  We called back and asked for a neurosurgeon to call us back.

Friday Charles called again and was able to speak to Ellie’s neurosurgeon.  He found out that the nurse had told us wrong and the “slow” activity was noticed on the left (non-surgical side) not the right side.  This made immediate sense as to why that would warrant concern and why it made sense to have the MRA moved to next week.  We know the left side of Ellie’s brain has Moyamoya disease and we know that Moyamoya disease is said to be 100% progressive.  However they can’t do the surgery on that side of her brain until that side of her brain is thirsty for oxygen otherwise the surgery won’t work.  But at the time, we need to be sure not to wait too long because we don’t want to risk Ellie having a stroke prior to surgery.  Because this will be the first follow up MRA, we aren’t sure how fast or slow her disease may be progressing.  The neurosurgeon said the slow brain activity (as seen on the EEG) could be a sign she is dealing with TIAs or possible strokes or it could just be the way Ellie’s brain is firing.  Regardless, it isn’t worth the risk to just wait around for something bad to happen so an MRA has been scheduled for this Thursday morning.  

The MRI/MRA will take place tomorrow, Thursday September 18,  and Ellie has to check into the hospital at 6 a.m.  With such an early check in time, we decided to get a hotel room for tonight close to the hospital so that we don’t have to get ourselves and the girls up quite so early.  So we’re going to enjoy our evening in Houston---- go out to eat and then if it’s not raining, go swimming in the hotel pool.  Both of our girls love to swim and are looking forward to this plan!

For the procedure Ellie will have to be put under anesthesia.  Ellie has undergone anesthesia 4 times now and 3 out of the 4 times she has done fine.  However once, following her angiogram, she stopped breathing 3 times and had to once be resuscitated so anytime she has to undergo anesthesia we feel concerned.  Anesthesia can be more dangerous for people with Moyamoya because they already have problems with not getting enough oxygen to the brain and anesthesia can make the problem worse.  So if you’re thinking of us tonight or tomorrow morning, please say a prayer that Ellie tolerates the anesthesia without issue and also that the MRA gives us definitive results as to the progression (or lack thereof) of the disease so that we will know how to proceed with things from here.

Thank you all so much for the prayers and we will keep you updated tomorrow (on Facebook) as to how things go!

First Day of School 2014

Payton is in PreK-3 this year.  She couldn't wait to go back to school because she gets to be in an upstairs classroom this year "where the big kids go to school".  She also was excited about seeing her friends again.  I dropped her off first and before I could leave she was already too busy playing to bother saying "goodbye" to me.  

Ellie is starting school for the first time in the "Toddler Room".  We have been talking to Ellie a lot about school but she doesn't respond in a way that makes us believe she has any idea what we are talking about when it comes to this topic.  She immediately started playing when I brought her into her classroom and then I told her goodbye and that I would be back to get her soon.  She watched me walk out of the room and then went back to playing.  From there I went to complete the required paperwork.  By the time I got back to the one-way glass window to her classroom where I could watch her without her seeing me, she was sitting in a chair at the table.  Her teacher wanted her to come wash her hands so that she could have a snack but she kept saying "No" and when the teacher would try to help her out of her chair she would push the teacher away.  Eventually she agreed to wash her hands and was given the watermelon I sent for her.  She tried a piece, said "No" and handed it back.  They asked her if she wanted cheese which she said "Uh huh" to and she did eat some of the cheese.  I was laughing watching this because it's so much like Ellie to make it clear what she wants and doesn't want.  I was shocked that she wasn't upset and since she seemed fine I decided to leave.

When I picked Payton up she was excited to tell me about her day.  I was also very happy when the assistant teacher in her room told me "Payton was a good friend today".  Which was awesome because we've been talking to Payton lately about how a good friend acts and what a good friend should do.  I asked Payton what she learned today and she told me she learned about "Angry Birds".  I said, "Angry birds?" to which she explained, "Yes, like the game I play on Papa's iPad".  I said, "What did you learn about angry birds?" and she told me she made an angry bird using paint and her hand print.  She was very excited about it. lol

When I picked Ellie up, the assistant director was playing with her and said she'd had some crying but overall had done well.  They said they went outside and she was fine and then suddenly she started crying and eventually screaming.  That she was able to be consoled but that she wouldn't let her teacher put her down.  After that she had some crying off and on, especially when she needed her diaper changed.  And that she's a "Girl who knows what she wants and doesn't want" and was very often "Done, done, done!"  Which isn't news to me although I thought she might be a little less opinionated at school but I guess not.  Ellie didn't act excited to see me when I showed up to get her and when I asked her, "Are you happy to see me?" she said, "No".  Such a turkey!  Overall she did well and I think once she gets comfortable at school she is going to enjoy it.  I really appreciate the amount of concern the staff has shown for Ellie's health and at the same time I hope they don't feel overly concerned about her.  I'm so thankful that I can drop my girls off at school and feel confident that they are being well taken care of!

Ellie's report from the day.

Back to School Feast

Before anyone compliments me on what a creative, fun idea it is to have a back-to-school feast the evening before the first day of school, let me first admit that this wasn't my idea.  Last year I was searching online for "back-to-school traditions" and found this idea which I thought would be fun.  So this is our Second Annual Back To School Feast, being held on Labor Day, the day before the girls begin school.

This year I again made the girls new personalized crowns for the occasion, although Charles and I just wore the crowns that I made for us last year.

The girls helped me decorate the cupcakes for the feast.  I asked Ellie if she was also tasting the icing and she told me "No" so I have no idea why you would think that. ;)

Here is the scene from the feast:

And here is the scene from last year's feast, just for a fun comparison:

NOW she is eating the cupcakes:

And finally, my big 3 year old and I.  She said, "We're friends!"

I hope my girls have a wonderful school year!