Sunday, July 20, 2014

That thing that took half of my daughter's brian

I don't really like to talk about the "thing" that took half of my daughter's brain. As my husband says "It's hard on the soul".  But that thing - CMV (cytomegalovirus) is a common virus, that is  not really talked about in the medical community.


For me it is a sense of healing to know that maybe by spreading the word we can somehow prevent just one family from going through what we went through, then my life mission would be complete.


I recently shared the story of our daughter on the Houston Mom's Blog and wanted to share the link here as well.


Lillian's story ( I didn't get into it in this article, but her brain malformation eventually led to intractable epilepsy and the need for a hemispherectomy brain surgery, a complete disconnection/and partial removal of her right brain. The brain removed in surgery was sent to pathology and showed CMV still in the brain, even after going through  8 months of antiviral treatments, that's how horrible this virus is!!)


http://citymomsblog.com/houston/cytomegalovirus-lillian-graces-story/


And of course tips and ways to prevent CMV


http://citymomsblog.com/houston/cytomegalovirus-facts-prevention/




Please read an pass on to a loved on, you just might save a life!! <3











Friday, January 31, 2014

Video

So I recently used nap time and the evenings to put together this video to show my brave Lillian Grace overcoming obstacles and to hopefully inspire others!!! Hope you enjoy!





Saturday, December 21, 2013

8.8.13, The day of Lillian's Hemispherectomy

Well this is more than 4 months after the fact but I thought I would write a post and tell you all about Lillian's hemispherectomy surgery!  It was very scary but we are so fortunate/happy/ecstatic to be on the other side of this surgery!!

The day before surgery was a celebration of hope for our daughter to finally be free from her daily seizures! The neighbors brought over a care package and we had a wonderful time.

 My sweet younger brother flew in from California, as well as my in laws, and my parents drove down from Indiana!  Here is Lillian modeling a hospital gown made by my godmother Aunt Genevia.
 The morning of the surgery we woke up super early, well I am not even sure that we actually slept that night. I remember driving through the starbucks drive thru on the way to the hospital and they were like "have a great day!" and I was thinking "oh yeah, it's going to be great, just disconnecting 1/2 of my daughter's brain today" but ... of course I didn't say that!

Here is Lillian in the pre op room at Texas Children's Hospital. I honestly don't remember much of the day because I think your mind has a way of protecting/blocking you from remembering things that are very difficult.  Yes we were very excited about the possibility of seizure freedom but very scared about what *could* go wrong in surgery. The risks of complications is pretty high for this surgery.


Then the hand off took place around 8:30 AM.... I was so scared for Lillian but the nice hospital staff reassured that they would take excellent care of my baby.  First incision was made 10:15 AM, surgery finished around 5PM, we got to see her around 6PM.

After the hand off we all settled in a small conference room that fortunately was not in use that day. We knew we could have the possibility of waiting up to 12 hours and wanted to do that in privacy with our close family and friends. Our best friends Mike and Katie and their baby Connor came to support us.  My mom made a huge college of Lillian's supporters and we hung it up in the room. Everyone wore purple that day! (Purple is the color for Epilepsy awareness).

 
We had many visitors that day, and lots of prayers! Here is a picture of our lovely neighbors Len and Dolph Arnold. 
 Grandma Liz snuggling with Vivian

 You gotta eat, right? My brother Stephen in the hospital café.
 While eating lunch we had a wonderful surprise, Sophie (a hemispherectomy survivor!) and her mother Misty came over and brought us the traveling awareness bear. I don't think they had any problems finding us because we were the purple table!!
 
Our infectious disease doctor Gail Demmler-Harrison and her team wore purple that day to support Lillian! Dr. Demmler sees Lillian and manages her long term effects of being born with congenital CMV.  They came by multiple times to check on our family. What great support!!
 
 
 
And we had another sweet hemispherectomy survivor visit us!
 
 
Another wonderful set of neighbors Becky and Wayne Sneed
 
 
 
Around 5 PM our surgeon Dr. Curry came in to tell us that everything was finished up and great!! Our room gave him a standing ovation and applause!!!   Throughout the surgery we would get messages every hour or 2 from the nurse in the OR, she was always stable and doing well. They ended up giving her a blood transfusion which is not uncommon in this type of surgery.  
 
 
 
Here we are waiting to see Lillian in the ICU.



YES!! First glance at our baby!! around 6PM surgery day!! She was stable and doing great!! She spent one night in the ICU and then was transferred to the 10th floor Neurology floor the very next day!



 
I posted many updates on the event "Wear purple and pray for Lillian Grace". I received hundreds of pictures of friends and people I didn't even know wearing purple and praying for Lillian that day!! So awesome and humbling. Some day I will continue on with posts about our hospital stay!
 
https://www.facebook.com/events/174874732695193/

More information about Lillian:

Lillian was born with congenital CMV, a disease that attacked her brain and caused it to form "too many small folds" or polymicrogyria.  Due to this severe malformation she was having hundreds of absence seizures daily. Fortunate for our family the malformation was ONLY on the right side of her brain, and encompassed about 90% of the right side. This made her an excellent candidate for hemispherectomy surgery, in which the doctors completely disconnected her right side of the brain and removed parts of it as well. I am happy to say that 4 months post op my daughter is back to her baseline, and even better, and we have never regretted this decision! In fact we just received a seizure free report for the first time EVER!

Friday, August 9, 2013

Video for Lillian

Most of you have already seen this because it is up on Facebook. These are all pre-op photos. Lillian successfully completed her right hemispherectomy on 8.8. She is now recovering at the hospital. Thanks for the prayers and kind notes and photos :)


Sunday, July 28, 2013

A prayer from a 3 year old big sis

Today at dinner time Vivian kept telling me all the prayers she had for Lillian. They were so sweet that I got out a pen and started writing them down.  Here is a prayer from 3 year old big sis to 19 month old little sis Lillian.

Dear God,

I hope Lillian doesn't get lost. I wish Lillian can grow bigger and bigger. I hope Lillian doesn't get hurt ever. I hope Lillian doesn't have anymore seizures for her whole life. I want Lillian to walk and talk like a big girl. I wish Lillian's whole life can be a parade. I wish God can help Lillian get bigger and bigger like a mommy.

Love,
Vivian

I just thought it was super sweet of Vivian. Although she is only 3 she has a very good understanding of Lillian and the challenges that she faces. I can only imagine the bond will continue to grow as they get bigger. More later on our trip to Cleveland clinic!

<3
Sandra



Sunday, June 23, 2013

Upcoming Appointments

The next few months for Ms. Lillian are going to be difficult and will include many procedures/appointments!  And we are trying to still keep up with all her therapies so she doesn't fall behind!

 Please keep her in your thoughts and prayers, she deserves to live a beautiful and long life!! <3

Tomorrow we are going to check back in to the Epilepsy Monitoring Unit at Texas Children's Hospital to have another 24 hour Video EEG to see the status of Lillian's seizure activity. I notice staring spells daily, some days worse than others.  This visit will help us understand whether or not the new med (her fifth anti-epileptic drug) Onfi is providing any benefit to her.

Then we will head out to Jacksonville, FL for the first annual Polymicrogyria Conference! I look forward to seeing some of our friends and to meeting new ones!!

On July 1st Lillian will have a sedated PET scan to look at her brain activity.   I do not understand this fully but apparently it can show areas of the brain that are active vs. dormant.

On July 3rd we will have our consult with the Cardiology department at Texas Children's. An EKG showed that Lillian has a new and frequent abnormal heart rhythm called Ventricular Bigeminy where she has a strong heart beat followed by a weak one. This has caused her to have a rapid pulse rate at times, and we had a visit to the ER for this as well as a holter monitor.  Another EKG will be performed at this visit...lets hope it goes away as fast as it came!!

On July 10th Lillian will have a quick visit with her Infectious Disease doctor and then will go in for a sedated MRI brain scan. She hasn't had one in almost a year and it will give us new pictures of her brain.  On July 12th we meet with our Neurologist for a regular office visit.

The week of July 22nd we will be inpatient at the Cleveland Clinic in Ohio for a second opinion regarding her hemispherectomy surgery. The team there will do a separate and unbiased workup on Lillian and will present her case to their multidisciplinary conference on July 30th. We shall see if they come to the same conclusion for hemispherectomy surgery or have alternate suggestions.  They also have some machine that can do a MEG test (another brain test - sedated - and currently there is no machine for this at TCH)

On July 30th Lillian will have a sedated ABR (Auditory Brain stem Response) test to check her hearing and also a follow up with her ENT regarding the tube surgery she had last week.

We are already "penciled" in to have her hemispherectomy surgery done at Texas Children's on Aug 9th but that is dependent on a lot of things. 1. Whether or not Cleveland Clinic agrees with this decision  2. Whether or not she can get cleared through Cardiology to undertake this surgery. 3. If we are able and strong enough to go through with this!! It will be a 6+ hour operation and very risky, they will disconnect Lillian's entire right hemisphere of her brain in effort to stop her seizures before they damage the good side (left side of brain). It is dramatic but may be the only way to save her brain from being totally damaged by the seizures. The recovery is long and difficult and will involve a 2-6 week hospital stay plus intensive therapy.

Thanks for reading and your prayers/kind thoughts. I hope and pray we can figure out the best course of action for Lillian over the next few months.

Sandra

Working through the pain in Occupational Therapy  (she is holding the ball with her left hand but does not want to!!)


 
Watching sister do gymnastics (STANDING at the window!)
 
 
 
ABR Hearing test


Lunch and kisses from daddy!
 Dinner time!
 Aquatic therapy with Mr. William!
 
Check up with Dr. Gail and Holly <3







Stair climbing (above)
 
 Pic of the hospital at sunrise!

 
 Pointing to her nose!
 
 
 Visit to the train at the Abercrombie Building across the street from TCH West Tower
 
 
 Our Infectious disease Dr. Gail on the CMV awareness poster!

 
 Learning "B"'s in therapy - ball, bow, bottle, bear, blocks, book....she doesn't reply often but listens carefully!!
 
Looking out the window after an appointment at the hospital!
 
 
Working hard in PT
 
 
 

Wednesday, May 22, 2013

Happy Post - Milestones

It's been a little over 2 weeks since the doctors told us that Lillian needs a hemispherectomy and I still feel very overwhelmed by this!! She is doing so well and it's hard to justify such a radical operation. But I do know we can not let this go on forever.

I see seizures every day, sometimes 15 an hour - they are mostly staring spells or stiffening of the left side, then she snaps back into whatever she was doing before. Sometimes I get really discouraged by this but then I remember that we are so fortunate to have surgery as an option for Lillian! Plus these are short seizures, and not full body convulsion ones, but still scary for our family.

Despite all of the seizures Lillian continues to progress every day! I wanted to share a few things that she is doing - she will be 17 months on the 28th of May.  The doctors tell us she is functioning at close to a 10 month old level.

Crawling - Lillian started crawling at 15 months and has rapidly progressed! This little video is from when she first started to crawl. She sometimes fists her left hand when she crawls which causes her to get scratches from rubbing on the floor and I can see her struggle pulling the left leg through, but she does it!! *She even climbs stairs now!! *

 
 
"Play" feeding the dolly. This is really like a 15 month milestone and she did it for the first time in Dr. Demmler's office! We all cheered for Lillian. She has since continued to do this, it's sooo cute!
 
"Coming into standing at objects" - this is a pic of Lillian during her last EEG, she recently started coming into the standing position on her own at furniture/etc.. The second pic was at a doctor appointment, and yes I was right there to make sure she didn't fall!!
 
Responding to "give me" (SOMETIMES!! haha) Also I thought it was funny that she wanted to do her therapy from inside the cabinet one day. Silly girl!

Fine motor - Lillian held on to this toy with her left hand for 20 seconds! It was during Occupational Therapy and I was so proud. Normally if you put something in her left hand she drops it.  Also she is opening her left hand sooo much more rather than keeping it fisted!
 
A very interesting feature about Lillian - despite her delays she handles crayons and other writing objects like a pro! She colors all the time and holds the crayon correctly!


Aquatic Therapy- This is Lillian's absolute FAVORITE therapy! She works so hard and loves the water so much that her therapist William calls her "Water Lilly".


 

 
And she *tries* to take a few steps when you guide her and hold onto her. She is still really uneasy with this but I know it won't be long!
 

 

 
Recently my parents were in town and decided that Lillian and Vivian needed a slide to play on. It gets so hot in Houston that we decided to put it indoors...haaa...awesome décor for the living room! (Well it used to be a formal living room...now it's the therapy/toy room and much better served as such!!!)
 
Thanks for reading and your prayers and kind thoughts for Lillian! We are so blessed to have such wonderful family and friends rooting for her. <3
 
Sandra