The Latest Update on Sweet Gia

It's been awhile since I've update the blog... and I've realized this week that I DO have news to report.

We had been waiting to hear back from the Neurologist who lives out of state - to find out what he thought of her scans, and what tests to run further.  It took awhile... so we'd been waiting.  Dr. Kleber (our natural doc) called to have me come in this week to talk about which tests he thinks we should order.

I had some puzzling - but good news to report to him - which I'll share with you all as well.  Over the past 2-3 weeks - I have not been noticing nearly as many seizures in Gia.  At first, I thought it was the good weather we'd been having (that the girls had been playing so much outside - maybe I'd missed some?)  Still... it seemed I only saw one every 3 days or so... (as opposed to 2-4 per day, consistently).  Last week everyone got a stomach bug.  Gia wanted to be held constantly - and we were all inside, sicky.   In that whole week - I saw NONE.  And still - as of today... her seizures seem to have slowed to a complete stop.  Thank you, Lord!!

When I shared this with our doctor - he said he was glad to hear it, and that he'd rather see them be irregular, rather than predictable and consistent.  The way he explained it was - (he used his pen to make a line) - there's a threshold that she crosses.  When she does, she has seizures, when she's on the other side of the threshold, she doesn't.  It seems she is living right on or near this threshold, and it could be many things that push her over it (the line, or threshold) - where she ends up having the seizures.

Both Dr. Kleber, and the other Natural Neurologist both seem to feel that her brain condition is not something to be gravely concerned about.  When we sent the MRI and EEG results to the Neuro in Milwaukee - Dr. Kleber asked him if this was something that would seriously affect her for the rest of her life... he said 'absolutely not'.  

The more I've had time to let the news of her 'brain abnormality' settle.. the more I wonder... if everyone were to have their brains/bodies scanned - would we all look the same inside?  Wouldn't there probably be many 'abnormalities' in us - some causing problems, some not?

Obviously, since her seizures were happening in the same part of the brain where the 'abnormality' was seen - there is something there.   For now, I guess I see it more as a 'weakness' in her body that makes her prone to having seizures.  (It is strange to me, that her being sick with the stomach flu didn't trigger any - she had none during that time).

Dr. Kleber said there could be many things inside her system that could cause her to cross that 'threshold' - a low-grade infection in her body,  a blood issue, thyroid imbalance... many things.
We plan to run the tests that he is suggesting - a full blood panel, and a urine test which will show neurotransmitter activity.  These tests are expensive, so we need to save up for them...but it will be interesting to see if something stands out that might be a trigger in her system.

 
It is crazy to me to think that our Pediatrician  wanted to start her on anti-convulsant drugs even prior to having the MRI scan. To think... if we had gone down that road so early...we all would have thought that it was the drugs that made her seizures stop... and then we'd have probably been afraid to take her off of them.


I know that the future is still so unknown.  She may have more seizures - it may get better or it may get worse.  We are trusting in God's perfect plan for our baby girl - and are just so thrilled and thankful for now - that she is doing so well.

So that's the update!!  Thank you for all of your love and prayers for Gia Rose.

Opening a gift in the mail... excited!

Pretty eyes... picture taken by big sister Ruby

Visit with the Natural Doc

Just a quick, rather uneventful update.  We had a good meeting yesterday with our Natural Doc., Bill Kleber.  Jeremiah and I went alone (thank you, Auntie Dana for watching all four!) 

We shared all of the MRI, EEG and diagnosis info. with him and he gave us his perspective.  Basically, he wants to consult with a specialist.  I'm thankful that it sounds like he has a good connection to a Neurologist who takes a holistic approach.  He got on the phone and called his office while we were sitting there. 
We hope to have a three way conference call with this doctor next week to get his opinion on Gia's brain scans.  I will be sending over all of Gia's reports and scans for him to review.

Until we get several opinions - we probably won't start any treatments for Gia's seizures. 
This was an encouraging step, to have a referral to a specialist with a natural approach to medicine.  He practices out of Milwaukee, so to have Dr. Kleber calling him for us - is awesome.

That's the update there.  Gia is doing well.  Same amount of seizures as before... and is her happy, demanding, 2 (almost 3) year old self.  Love this little stinker girl!

Call from the Neurologist

I got a call late today from our Neurologist ... (just in time.. I was about to call down there.).  He told us that after consulting with several Radiologists to look over Gia's MRI, they all seem to agree that it looks like the cortical malformation was the result of Cytomegalovirus - or CMV.   CMV is becoming very common - 80% of adults are infected with the virus.  Although it is common, it is most dangerous to babies born with mothers who are infected, or to people with severely weakened immune systems.

The Neurologist said that the damage done to her brain is most likely - no longer active, meaning it won't get any worse. The seizures she is having are coming from the part of the brain that was most affected.  The white spots on the MRI are, what he believes to be injury to the myelin tissues (done by the virus).  These are not causing the seizures.

He still wants to pass her MRI around to some other doctors to get their opinions, but this is what all those he's consulted with agree on.

Since there is no way to reverse the damage done to her brain, and no treatment for it - we can only treat the symptoms.  That is where we are at.   The neurologist will share this info. with our Pediatrician, who will most likely consult with us further on where to go from here.

We plan on researching ways to stimulate the health of her brain naturally... certain foods, supplements that may stop her seizures, and medication if those first attempts do not seem to help.  We see our (natural) family doc on Tuesday for his ideas and opinion.

From what we understand so far - the only danger is that her seizures, if they continue - might spread to other parts of the brain or become more frequent (if nothing is done to help stop them).  This is not certain... only a concern.  She may also have other learning or developmental difficulties to overcome in her life - (or maybe none).

I guess on the whole, I feel encouraged, sad and thankful.  I know we still have lots of questions to ask, and we may get new information that changes all of this.  For now I am thankful that my sweet little girl hopefully will not continue to have degenerative brain problems in the future.  I am hopeful that we are learning this early, and can work on ways to help her.  We have so many things to be thankful for - to live in a country with access to so many specialists and doctors is such a privilege.

We could use prayers for comfort and encouragement, too - as we continue to grieve over the realization of her condition.  God is walking with us through this, He is not surprised by this - and He will use it for good in His own (incredible) way.  He may choose to heal her completely - or to use this struggle in her/our lives to touch or bless others.  I want to continue to choose to trust him, even on days when I feel I'm sinking into sadness and discouragement.

My dear friend shared this passage with me today and I love the honesty of a person struggling to trust in the goodness of God despite severe trials.   Notice how many ups and downs there are in this psalm!

Psalm 42
¹ As the deer longs for streams of water,
      so I long for you, O God.
 ² I thirst for God, the living God.
      When can I go and stand before him?
 ³ Day and night I have only tears for food,
      while my enemies continually taunt me, saying,
      “Where is this God of yours?”
 ⁴ My heart is breaking
      as I remember how it used to be:
   I walked among the crowds of worshipers,
      leading a great procession to the house of God,
   singing for joy and giving thanks
      amid the sound of a great celebration!
 ⁵ Why am I discouraged?
      Why is my heart so sad?
   I will put my hope in God!
      I will praise him again—
      my Savior and  my God!
   Now I am deeply discouraged,
      but I will remember you—
   even from distant Mount Hermon, the source of the Jordan,
      from the land of Mount Mizar.
 ⁷ I hear the tumult of the raging seas
      as your waves and surging tides sweep over me.
 ⁸ But each day the Lord pours his unfailing love upon me,
      and through each night I sing his songs,
      praying to God who gives me life.
 ⁹ “O God my rock,” I cry,
      “Why have you forgotten me?
   Why must I wander around in grief,
      oppressed by my enemies?”
 ¹⁰ Their taunts break my bones.
      They scoff, “Where is this God of yours?”
 ¹¹ Why am I discouraged?
      Why is my heart so sad?
   I will put my hope in God!
      I will praise him again—
      my Savior and my God!


Jesus... my 'God who gives me life'... Thank you, God for life!!   I am reminded of what a miraculous gift our bodies, our health and life are!  What a gift from you to take each breath!  Help me to cherish each day that you give me.  To live in each moment with my children, family and friends.  I know I'll again feel overwhelmed... broken hearted...  forgotten .... discouraged...
Help me to remember that You are the one who saves ...help me to again put my hope in You, and to remember Your unfailing love.

Ok....  For this moment, at least - my heart is at rest.  So thankful to have Truth that anchors my soul.

We'll keep you all posted if anything new comes....
hugs and love,
Sarah

Back from the Mountains, Neurologist Visit

Hello Everyone,

We are back from our trip to Breckenridge with the Sailer fam.  We had a great time, despite driving down to Children's Hospital and back on Saturday.  It was a much needed time of rest, as well as wonderful bonding time with the entire family.

Our doctor's visit on Saturday went well.  It was one of the first Saturday clinics that the hospital has done - so there were very few people there.  We saw Dr. Brad Miller in the Neurology Dept.  He gathered all of the information from us, looked at our videos and observed Gia having a seizure right there in the office.  I was thankful he saw it firsthand.  He reviewed the MRI and discussed his thoughts with us. 

He does NOT believe she has Tuberous Sclerosis, in his opinion.  He says it is not at all on the top of his list from what he sees in the MRI.  He believes there would be other signs, if she did.

The right side of her brain is where the seizures are coming from.  He believes that area (with the smudged appearance, more white matter where there should be defined areas of gray matter) is a malformation of the frontal cortex.   (i.e. - her brain did not develop normally in utero).

He is not certain, however what explains the white spots (or growths) that are on both sides of her brain.  He has some ideas, but kept our MRI disc to discuss with other radiologists at Children's.

We hope to hear from him soon - and that he will have new insight after discussing her case with others. 

He did give us three medication options to research.  When we told him our hesitations, he was somewhat understanding.  He said it is our decision to do what we feel is best for our daughter, and that he is only a counselor. (answer to prayer there!)  When I asked what he thought about natural treatments such as Omega-3 fish oil, etc.  He said this:  'I wouldn't prescribe dangerous, expensive drugs if I didn't think they were our best bet.  The reason I don't prescribe the natural options is because they don't work.  But if you find something that does, great'.  Even hearing him admit the dangers of these meds was again, another confirmation to us that we want to think of those drugs as a last resort option. 

He did say that although the seizures are not harming (doing damage) to her brain - there is a belief among neurologists that 'seizures beget seizures'.   In other words, if nothing is done to stop the seizing in her brain - she may start having more and more, and in other parts of the brain as well.   

Our next steps will be to do more research, visit with more doctors, nutritionists and health care providers.  We are praying we can find a way to stop her seizures naturally. 

As far as the unknown aspects go... (not knowing what those white growths are ) ... we are purposefully choosing faith instead of fear.  Our God loves us, loves little Gia and has a plan for her life.  We will choose to trust Him for today - and leave tomorrow up to Him. 

Some pics from our time this week:

Our view from the house

Surrounded by all the Sailer cousins

Walking the halls at Children's Hospital with Dad

Checking out a really cool display at the hospital

Although  no parent ever wants to visit here, the hospital really is amazing.

REALLY excited about her hot choc-o-late in Downtown Breckenridge

At the sledding hill with Mom

All cozy with Daddy

We love you all and are so thankful for your love and support,

Hugs,

Sarah and Jeremiah

Gia's MRI and Results

Sent March 2, 2011

Hi Everyone,

We are exhausted... and our emotions are kind of numb.

Gia did great this morning.. only said 'I'm hungry' twice before the test.   She was so sweet and a bit leery as we went in (I think she is beginning to recognize hospitals).  I had asked the anesthesiologists if I could be with her while she goes under anesthesia, but they said no.  I was kind of stubborn and kept asking why... telling them I'd really like for her to be calm when she went under, and not crying for us while they wheeled her into another room, etc.   I got a lot more information from them by pressing this, more understanding from them - but they also seemed to accomodate us more. They ended up letting us wait just outside the room she was in for the MRI, I rode with her on the bed (she had already taken some medication that was making her very drowsy), so by the time they took her from me into the MRI room - I felt at peace being near her and she was calm.   God is so good to ease my concerns there.

As soon as the scan was done we went in with her to the PACU room.  She had a very hard time coming out of anesthesia.  Screaming, throwing angry fits, etc... poor baby.  That was hard.  (Jeremiah lost it then) but she fell back asleep and little by little got back to her normal self.  She will be cranky and tired today, they said.

After only about 20 minutes being home, I got the call from the Pediatrician's office.  I was shocked to hear back so quick!  The nurse was calling me to ask if I could come in to meet with our doctor to discuss results.  My stomach sank.  She asked if we could make it at 4pm.  I asked if there was any way we could talk on the phone or see him sooner - and after asking - she told us to come over right away.

The good news:  NO TUMORS.

The hard news:  Gia has some brain abnormalities that were very visible on the scans.  There are, what they call 'tubers' - small white spots in many areas of the brain.  These are not tumors - but growths of some kind.  There is also more white matter on the right side of her brain (visible clearly in the scan) which is also the same area that the EEG showed the seizure activity. 

Our Pediatrician suspects it could be a genetic condition called Tuberous Sclerosis.  The outlook varies greatly - from mild (children with overall normal health and mild seizures)  to severe mental retardation.   He currently sees a patient who has this condition and they have to routinely do scans to check on these tubers in her brain, to make sure they don't develop into a mass that needs to be removed. 

We are sighing with relief that there is nothing to immediately fear - (tumor, cancer, etc) - yet still processing all of this hard information.  It will be good to get more details on Saturday (we are being seen sooner at Children's Hospital!)  when we talk to the Neurologist and get his diagnosis and opinion.

THANK YOU SO VERY MUCH for all of your prayers and support.

I can see how clearly God has answered in giving us comfort... specifically in how quickly we found out.  It could have been a long, agonizing day.  Makes me think of the meaning of her name.  Gia means 'God is gracious' in Italian.  So thankful for His grace as we go through all of this.

We love you all and will keep you in the loop as we go...

Here are some pics from today.

Sweet girl, on the way - feeling hungry

Checking out the fish in the waiting area

Getting used to the staff

Heading back to the MRI area

Fuzzy, but sweet

Not so sure about this heart monitor thing...

EEG Results

Sent on Feb. 28, 2011

 

Hi All,

Just sending an update to say we got some hard news today.  The pediatrician called to tell us the results of the EEG were not typical for what we thought was causing the seizures.  (It was not the typical spike and dome of Petit Mal Absence seizures, as we thought).  She is having seizure activity on the right side of her brain, which is a concern.

 

The Pediatrician consulted with a Neurologist down at Children's Hospital - and they want to schedule an appointment sooner than April 5th.  He also wants us to have an MRI done now.

 

So....please pray for little Gia this Wednesday, at 9:30am we have to take her to McKee Hospital for the MRI.  She has to go under general anesthesia since she's so young (you can't move at all during the procedure).    I'm sad she has to have an IV and go through all this.

 

The hard part was looking at the physician's orders on the paperwork that the Radiology Dept. gave me.  My Pediatrician wrote 'abnormal EEG' - 'Brain Mass/Abnormality'.   Of course this is not a diagnosis... but the MRI is being ordered to rule it out.  Still hard to see those words on paper about your child.

 

I wanted to share how loved we feel - in the midst of this hard news.  Last night we had a wonderful night out with the girls for sushi (unusual for a venture out like this to go well)... it was a special gift to really enjoy eachother and have fun as a family.  Then, that night - Jeremiah and I had some extended time in prayer together and felt the Lord speaking encouragement to us through these recent trials.  Specifically, for me - I believe the Lord said 'I want to give you joy in the midst of this'.   I had been praying about other circumstances I'd been dealing with, realizing how much I had recently been allowing myself to dwell on my sorrows and stay in a place of discouragement.   I woke up this morning and began writing down verses on joy.  I really felt that the Lord wanted me to focus on JOY. 

 

That was all prior to hearing the news from my Pediatrician.   I really believe that our Heavenly Father was preparing our hearts to receive this news. 

 

We are also amazed at the timing of getting the medicaid coverage when we did.  As much as it was difficult that Jeremiah experienced a downturn in work over the holidays - it was the reason we qualified for Medicaid this month.  SUCH a blessing that we don't have to be worried about more medical bills on top of the anxiety that these tests are bringing.  God is so in control of the details of our lives!

 

How thankful I am to have Him going before us.  I am trusting in his love to carry us through, and choosing to cling to His goodness - and His promise to give joy.

 

Thank you for your prayers and love,

Sarah & Jeremiah

Psalm 30:11 -12

You have turned my mourning into joyful dancing.
      You have taken away my clothes of mourning and clothed me with joy,

that I might sing praises to you and not be silent.

O Lord my God, I will give you thanks forever!

 

Jeremiah 29:  11-14

"For I know the plans I have for you," says the Lord. 

"They are plans for good and not for disaster, to give you a future and a hope. 

In those days when you pray I will listen. 

If you look for me in earnest, you will find me when you you seek me. 

I will be found by you," says the Lord.  "

I will end your captivity and restore your fortunes.  I will gather you out

of the nations where I sent you and bring you home again to your own land."       

Second Update on Gia

Sent on Feb. 26, 2011

Hello All...

 

We've decided to send updates on Gia via email to keep everyone updated.  Some of you did not receive my last email - (I've included it at the bottom if you didn't get it before).  At first, we put some pictures up on Facebook (to share with  many of you who are far away)... but I felt wierd about that, so I took them down.  I will use email instead, to a select group of dear friends and family.  We are totally fine with you forwarding these emails to other family/friends who would like to keep Gia in prayer... it just didn't feel good having those pics out on Facebook for all to see...

 

The latest news is that Gia did wonderfully on Thursday for her EEG test down at Denver Children's Hospital.   Gammie and Papa took the older three girls for a sleepover Wed. night.  We had to keep her up till midnight, then wake her at 4am (she had to be sleep deprived for the test).  We took her swimming at our gym until 10pm, she loved it!  She was chatty and playing all the way until midnight... such a night owl, that girl!

 

Thursday morning we headed out at 6:45 am to the North Campus of the Denver Children's Hospital.  She was so brave, such a trooper (and amazingly, for a 2 year old) laid there very still while the technician applied the wires to her little head and got the readings necessary.  We hope to hear early next week what the results are from the test.  A Pediatric Neurologist will read the test, dictate it and send it to our Pediatrician.  Hopefully there will be some good news there.  We probably won't know many details though, until April 5th when we meet with a Ped. Neuro down at Children's Hospital, main campus.

 

Thank you for all of your prayers... I know that is why she did so well on Thursday!

We love you all and appreciate your support and love!

 

Here's some pictures from Wed. and Thursday....

 

Packing her essentials to bring to the gym.

Checking out the pool

 Not sure she really wants to get in...

Little Sassy Pants

Loving it!

A little unsure and SO tired...

Sweet Pea, stayed there so still!

Chapstick in hand (her favorite) and some toys to distract her.  She did so well.  Thank you, Lord!