Olivia's Latest MRI

As many of you are aware, Olivia had an MRI last week. A couple days later I called the office to get the results and was told "No changes." Hurray!! I had family in town so the news passed quickly. As I always do, I asked them to send me the MRI report. It came and after reading it, I realized there was a new finding. Boo.

The wording was confusing:

"Unchanged appearance of multifocal T2 Hyperintense signal in right orbital, observed in retrospect, most likely representing I CN V1 plexiform neurofibroma."

I didn't understand all of those words- still don't. But "plexiform neurofibroma" is a big phrase in the world of NF and it's something Olivia hasn't had in her MRI's before. (Olivia's 9 MRIs have all been of her Eyes/Face/Neck & Brain).

So I called Olivia's specialist on Monday- he had also missed the new finding and wanted to speak with the radiologist who read the MRI before he could give me any specific information.

Wait. Wait. Wait.

I'm not very good at waiting for doctor's to call me back. Especially when I'm worried. Plexiform neurofibromas can grow rapidly and get big, potentially causing disfigurement- Diagnosis of NF1- scroll down to complications and #1 Disfigurement talks about what plexiforms neurofibromas can do. All this has been swimming around in my brain as I wait, wait, wait.

So I called him back a couple days later before he had a chance to call me. What?? He's busy with hundreds of other patients and I only have my girl to think about.

Olivia does have a "new to us" plexiform neurofibroma in the right optic canal, separate from the optic pathway tumor on her right optic nerve. The specialist said, "the radiologist said he went back to see who was the idiot that missed it 6 months ago, and Oh! it was me." So, it was there and hasn't changed in the last 6 months, which is good.

I don't understand where it is growing from- Olivia's specialist said the radiologist had to pull out a skull to explain it to him, and all I have is the specialist's phone explanation. So here it is, for what it's worth- the long, narrow growth of cells is coming into the optic canal through a small opening in the bone- possibly growing on a cranial nerve. If it were to grow and become more noticeable, it would show up on her eyelid or eyebrow. The position of this neurofibrmoma is rare, but it does exist in other people. There is enough space that it shouldn't put pressure on the optic nerve and affect her vision. It could fill up the opening it is growing through and erode or put presssure on the bone. It could fill up the area behind the eye and cause the eye to protude (medical term- proptosis).

For now, we watch and wait. In 6 months Olivia will have another MRI to see how everything is doing inside her beautiful head.

The other results from Olivia's MRI:

The optic pathway tumors on the optic nerves of both her eyes are unchanged. The report says, "Enhancement is less conspicuous that on the prior exam" which is good, though in all the other excitement I forgot to ask the specialist exactly what that means.

And the best news, the other tumor we were watching in her brain has SHRUNK! It was 9x9x9mm and is now 7x6x6mm. Super exciting!!

Lately, I've had many people asking me "How is Olivia doing?"

Olivia spends her day in typical 5 year old fashion- playing and fighting with her siblings, biking or swimming, watching cartoons, digging in the sand box, jumping on the trampoline with her friends, reading with Mom, going to the park- we feel incredibly blessed that Olivia is doing so well.

She does get tired much quicker than other kids- she's always the first one to head inside, she's always the first (and often the only one) ready to go home from outings and activities. She's my only kid who willing rests on the couch during the day. She'd probably still nap if I let her. She's never happy when I make her walk all the way home from the park, but I know the exercise keeps her body strong and her energy levels up.

And there's always something to worry me- if she has a headache is it because she's tired or is it the NF1. When she complains about her knee hurting, is it growing pains or is it related to the NF1.

I cannot tell you how grateful our family is for everyone's concern, love, and prayers for Olivia. This would be so much harder without our family and friends supporting us.

Olivia & NF1 Update

Olivia is my hero.

Whenever a new contraption is brought out she is willing to do what she is asked, and usually she does it with a smile.

In January, Olivia saw her eye specialist and aced her eye exam (20/20 - 20/25). Both of her eyes are healthy. We love good news!

Olivia continues to see her speech therapist and we are trying to figure out why Olivia is hard to understand. She struggles with her /l/ sound, but that's pretty common, her pronunciation is improving, and it's not a big concern right now. She pronounces all the other sounds great, especially when we're working one-on-one with her.

The speech therapist decided to do some other tests and try some other thigns based on the report from Olivia's visit to the ENT last year (a report that I don't even come close to understanding because it's all iin doctor-speak). The contraption pictured above measures how much air is escaping out her nose when she talks, but the results were within the normal ranges. Right now the speech therapist is focusing on Olivia's pitch - helping her understand when she is talking "bumpy" or "smooth" - and we'll see if that helps.

Nothing very exciting and we like it that way!

Olivia will have another brain MRI in April so I'll do another update then.

Racing4Research Watch Party

Yesterday I took Austin, Nyah and Olivia to the Racing4Research watch party for the Rolex 24 at Daytona.  We were cheering on the #4 car, which races and raises money for the Children's Tumor Foundation. The race was projected on the big screen, people brought laptops to chat with the team, we had some yummy food, there were some activities for the kids, and we spent a lot of time meeting and talking with other NF families. It was wonderful!

P.S. Should you, or anyone you know, eat at Legends Pub & Grill in Salt Lake City, mention the Utah Neurofibromatosis Chapter and a portion of your bill will be donated to the Children's Tumor Foundation.

Olivia Updates

This week Olivia had an MRI to check on the glioma in her brain and a follow up visit with Dr. Viskochil. The MRI shows that the gliomas on her optic nerves and in her brain are all stable, and there are no new findings.  HURRAH! It also looks like her MRIs will be every 6 months, instead of every 3 months - a little bit of a graduation.  HURRAH! HURRAH!

The only other concern I've had with Olivia is she seems to get tired quickly or want to be done when we are doing activities (swimming, biking, playing outside, hiking, etc.) and we discussed a couple reasons why - Kids with NF1 tend to have shorter attention spans and grow bored quickly. Kids with NF1 tend to have less coordination and weaker muscle tone, requiring more energy to do activities, so they are tired quicker. But there isn't really an easy, measurable answer so its another thing we get to watch and wonder about. 

Other updates about Olivia -

Over the summer Olivia had her speech assessed and we found she could use some help (those darn L's, R's, and blends), so she's been attending 3 or 4 times a month, and her speech is improving.

The speech therapist was also concerned about Olivia's voice quality - she has a gravelly, monotone voice - and we had to get her throat checked out for anything possibly growing on or hurting the vocal chords.  She saw an ENT through Primary Children's, had a *lovely* exam with a spray anesthetic and an endoscope down her nose while she had to say a variety of sounds and words. Can I tell you how awesome and amazing she was? No tears or crying or howling like some other kids did while we were waiting for her turn. She just did it. There were no findings on her vocal chord, but she does have a weak palate muscle which is common with NF1 kids (weak muscle tone again) and is a contributing cause to her speech problems. Which is good news because we are currently appealing our insurance's denial of coverage for her speech therapy- they are saying it needs to be for an injury or illness, and we are saying Duh! (in a much nicer and medical-letter supported way of course). 

Thank you to everyone who loves and cares for Olivia. We would be lost without the wonderful support of our family and friends, and especially without the love, blessings, and guidance from our Father in Heaven!

Salt Lake NF Walk 2011

The BIG day finally arrived!!! I was so excited I could hardly sleep the night before!

With some other NF Moms - Kelly, Andrea, & Me :)

Lots of activities for everyone - breakfast, face painting, princesses, fire trucks! Oh my!

Family!!! Unfortunately, I didn't get pictures of everyone who came, but here is most everyone :)

Time to Walk!

All of my girls were thrilled to meet the Disney princess' who came to support the walk.

We were so fortunate to have Maurice Simpson as one of the NF Heroes who spoke.  His message of "Everyone is Special" is still circulating around our house.  The woman in the background is Kelly Mills, the Children's Tumor Foundation respresentative. 

The fire trucks were also a big hit!!

Afterward everyone came back to our house for food and fun!

It was a beautiful day! I knew we were in the right place and doing good things.  Can't wait for next year!!

THANK YOU! THANK YOU! THANK YOU!  Olivia's Team was the top fundraising team thanks to everyone's kindness and generosity. Altogether we raised $3,650 - septupling (is that right?) our original goal of $500. We also surpassed our goal of 20 team members, and had 24 walking for Olivia's Team.  Everyone's love and support has been amazing and we are so grateful for this wonderful experience. 

THANK YOU!

Asa & Paula Laws

Beth Hicks

Brad & Katie Laws, Ruth & Will

Brent & Amelia Duke

Brian Laws, Ben

Erik Richards

Hart Laws

Joshua Fouse

Justin & Jesse Betts, Jude

Karilyn Morrison-Bearup

Ken Thurston – Feel Good Foundation

Keshia Laws

Kyle Morrison

Nate & Kristin Nevins, Joey & Daniel

Nathan & Elaine

Raymond Scott

Rhea Laws

Scott Rogers

Val & Brenda Laws

Yote, LLC

Zlotnick, Laws & Sandoval, P.C.

And everyone else who has supported Olivia’s Team!

Wow! Wow! Wow!

We know our family and friends are amazing, so the many generous donations they've made to support Olivia's Team and the Children's Tumor Foundation isn't surprising. We ended up raising our goal by 200%. We are incredibly grateful for all your generosity!!

 The Salt Lake City NF Walk is 10 days away - its time to sign up!!!

The Salt Lake City NF Walk will be on Saturday, October 1, 2011 at Liberty Park {600 E. 900 S.} in Salt Lake City, UT.  Check in and day-of registration begins at 8 a.m. and the walk starts at 9 a.m.

The walk will be a single loop {approximately 1 mile} around Liberty Park followed by guest speakers, including NF Heros and Dr. Viskochil {Olivia's genetic doctor}, as well as prize raffles, breakfast, and entertainment!

Olivia's Team Page - click "Join our Team" at the top of the page to register for the walk. 

Olivia's Family Page - if you aren't able to join us for the walk, consider making a donation to the Children's Tumor Foundation.

We've been working on a little surprise for everyone who will be a part of Olivia's Team - can't wait to see everyone!!

Thank you! 

Children's Tumor Foundation NF Walk - Salt Lake City


WHAT is Olivia doing? Phineas & Ferb's Summer Belongs to You! - "Welcome to Tokyo" Olivia loves Phineas & Ferb!!

Please consider making a donation or joining Olivia's Team for the Children's Tumor Foundation NF Walk in Salt Lake City Utah. 

More information can be found here:

Salt Lake City UT NF Walk - General walk information

Olivia's Team Page - Register to join us on the walk. We are working on a special surprise for all our team members to wear with their Children's Tumor Foundation t-shirts!

Olivia's Family Page - If you are interested in making a donation that will go towards our fundraising goal of $500.

If you are unable to make a donation or join the walk, but may be interested in volunteering the day of the walk, Oct. 1st from 6:30 to 1pm, please email me at k_luvs_k@yahoo.com

THANK YOU EVERYONE!!

 

Olivia's Eye Exam

Last week Olivia had an eye exam and according to the doctor her vision is now "better" than it was last year.  Which really means her vision was not bad and there was bad communication going on last year.  But good news is still good news and we are happy she had a good visit. 

We also had the opportunity to meet with a couple other NF1 families who live here in Utah. They both have boys around Olivia's age. Meet our new friends:

T's Nf Journey

The life and times of the Davis clan

Olivia - NF1 Update

Last week Olivia had an MRI to check the tumors on her optic nerves and the new tumor near her cerebral aqueduct and last night I spoke with her genetics specialist about the MRI report and a few other concerns from our April visit. 

First concern: Tumors- 

Optic Pathway Tumors - remain unchanged and stable, we will continue to monitor them in future MRIs. 

Cerebral Aqueduct Turmor - appears slightly larger, however the image is a different cut (me trying to explain what that means: in an MRI, images are taken in layers every 1/2 cm or so, and its hard to match up exact layers from previous MRIs).  They aren't certain if the volume of the tumor has increased or if it appears larger in this different cut.  Dr. Viskochil plans on discussing with the radiology team and we will be doing another MRI in 3 months to check on the tumors again. 

Next concern: Growth Velocity-

From the notes of our last visit with Dr. Viskochil: "a height of 114.3cm (>97th centile). Her height reflects a growth velocity of 1.35cm/month or 16.2cm/year, which is highter that we typically see in NF1 . . . It is notable that she has tall stature, which is unusal for NF1.  More important is her growth velocity that I only noted after the visit while plotting her growth parameters.  It is possible that the hypothalmic-pituitary axis is stimulated by the gliomas, and I recommend ongoing close attention to her growth and pubertal status."

As this says, this is something he noticed after we had left and we didn't learn about it until we had received the letter with the appointment notes. It came as a bit of a surprise and caused a bit of worry (mostly for me).  In some cases of NF1, gliomas in the brain can put pressure on the hypothalmus and pituitary gland and possibly cause early puberty (precocious puberty). 

Fortunately, a couple weeks later Sophie had a well-child visit and I took Olivia with me so we could discuss the letter with our family doctor.  Dr. Daynes measured Olivia on both of the office's wall rulers) and measured her at 110.5cm each time.  He wrote a letter and faxed it, as well as her growth charts from her last visits with him, to Dr. Viskochil. 

Last night when we discussed this the first thing he asked was "Did we see you at the Riverton center?" which is where I scheduled the appointment because its only a 10 minute drive instead of an hour.  Well, the nurses there aren't familiar with how important growth measurements are to these type of conditions so its likely there was a mistake made when they measured her.  In addition to this, Olivia has always been in the 95th+ percentile for height and she comes from a tall family. 

Because of the tumors we will continue to monitor their possible affect on the pituitary and hypothalmus, but the latest MRI shows they look good , so early puberty is NOT a current concern.  YES, I love it when we don't need to be worried about something.

Last concern: Speech-

Following our April visit, we scheduled a speech assessment for Olivia, which we did in May, as well as an audio assessment.  She does need speech therapy.  She is on a waiting list to begin this hopefully soon with Primary Children's.  Unfortunately, our health insurance has denied our claims because they feel it is a development issue and not related to injury or illness.  I know what your thinking - WHAT?! According to Dr. Viskochil, studies show that ~90% of kids with NF have speech delays.  Anyways, Dr. Viskochil will be sending them a letter as well as several medical studies and published journal articles that will hopefully help them see the error of their ways :)  Well, we'll see what happens.

Olivia's NF1 Story

I've wanted to put Olivia's NF1 journey together in one post for some time now.  I've typed up the beginning and included the links for all the updates I've blogged about.  I will add links as we have more updates. 

July 2007

Olivia was born January 2007.  When she was around 1 month old I noticed two birthmark-like spots on her torso.  I knew they weren't there when she was born and wondered if I should be concerned.  However, our family was in the middle of moving so we didn't see a pediatrician again until she was around 3 months old- April 2007. 

This pediatrician visit (a late 2 month well-child visit) was, and is still, the worst doctor's visit I have ever been a part of (aside from Olivia's skull fracture).  The office was dingy, the staff was unprofessional, the doctor's partnership/office was in the middle of splitting and it didn't seem amicable, the doctor had the nastiest toupe - overall horrible horrible horrible.  To top it off, the pediatrician took one look at the spots and spouted out the longest, scariest sounding word I'd ever heard -

NEUROFIBROMATOSIS. 

He offered no explanations- no why or how or genetic information or traits of the condition or anything.  He did make us an appointment with a medical genetics specialist at Primary Children's and wrote "neurofibromatosis" on a post-it note when I asked how it was spelled.  We got out of there as fast as we could and I cried all the way home, partly because of the horrible experience and partly because of the big new word that had entered our lives. 

At home I tried searching online for more information and all I found were scary, extreme situations and pictures, and quickly decided that for my sanity I couldn't look any more.  So we waited. 

Our first genetic appointment was in May 2007 and we didn't get any clear answers. We did receive basic NF1 information, but it seemed so removed from our sweet girl. With NF1 around 50% of people who have this disorder inherited it from one of their parents and 50% of people who have this disorder are the result of spontaneous genetic mutation (I always think of superheroes when I say that, but I promise no radiation was involved!).  Kurt and I do not have NF1 - Olivia has NF1 due to changes in her own genes. As with many genetic disorders, there is no way to predict if Olivia's NF1 challenges will be mild or severe.

Olivia's cafe au lait spots (birthmark spots) are only 1 potential sign of NF1 so we left the appointment with a "maybe."  The genetic doctor was also concerned with a slight bowing in Olivia's legs, possibly due to bone dysplasia. Her legs were x-rayed and no signs of bone dysplasia were found and they no longer have any bowing.  An appointment was made with a pediatric opthamologist (kid eye doctor).

For more info on the signs of NF1 -  Link-Diagnostic Criteria 

Olivia's first eye appointment showed her vision was normal and no additional signs of NF1 were found in her eyes.  The eye doctor was concerned with a slight proptosis of her left eye (a forward displacement of the eye), possibly because of an optic glioma, so he ordered an MRI of Olivia's the orbits (eyes) and brain. This was done in September 2007 and showed no signs of an optic glioma or other manifestations of NF1. Olivia's proptosis is normal for her.

We saw the genetic doctor again in November 2007.  Now there were a few more cafe au lait spots and more freckling in areas where the sun doesn't shine.  The genetic doctor also found a couple dermal neurofibromas beginning to emerge on her back.  Just like that she went from a "maybe" to "certainly."  Olivia had NF1.  Yet, aside from these "surface" concerns, there were no major worries. Her development, physical and cognitive fell well within the "normal" parameters.  We were already scheduled to see the eye doctor again 6 months from the first visit and would follow up with the genetics team in 1 year.  

We saw the eye doctor again in March 2008.  Olivia's vision during this time remained stable and there were no other manifestations of NF1.  We scheduled to see him again in 1 year's time

I have blogged about Olivia's doctor visits related to NF1 in the following posts:

March 2009

Skull Fracture Posts:

November 16, 2009

November 18, 2009

November 19, 2009

November 23, 2009

NF1 Updates Continued:

December 9, 2009

December 17, 2009

February 5, 2010

2010 Chemo Scare:

May 6, 2010

May 13, 2010

May 24, 2010

May 26, 2010

June 15, 2010

July 13, 2010

NF1 Updates Continued:

December 14, 2010

April 4, 2011

April 23, 2011

Olivia is super brave when she gets an IV and doesn't cry anymore.  This last time she wanted to watch it happen.  She's friends with Valerie, the nurse she usually has when she gets an MRI.  She knows she'll get to watch the trains in the lobby at PCMC and we always try to guess which elevator we get to ride in (elephants are her favorite).  She knows what toys she wants to play with at the hospitals/offices and where the cafeteria/vending machines are so we can grab an ice cream or treat after appointments. NF1 is a part of Olivia's life, however, it isn't her WHOLE life.  She is an active, normal girl who loves to be with her family, play with her siblings, go swimming, and ride her bike.  She gets into trouble (usually with help from her younger sister & sidekick, Jolie) and throws tantrums when she doesn't get her way. She likes cartoons and reading books.  She wants to be friends with everyone she meets. 

We love you Olivia!

Latest Updates:

July 2, 2011

July 21, 2011 - Eye Exam

March 26, 2012 - Update

April 20, 2012 - MRI Update

National Neurofibromatosis Awareness Month

May is National Neurofibromatosis Awareness Month

Neurofibromatosis Type 1 is one of the most common genetic syndromes, affecting ~1 in every 3,000 live births. It is an autosomal dominant disorder of chromosome 17.  Over 50% of all new cases of NF1 are the result of spontaneous genetic mutation.  Spontaneous mutations occur more often in the NF1 gene that any other human gene.  (Primary Care for Patients with Neurofibromatosis 1, The Nurse Practitioner, Vol. 30, No. 6, pgs. 38-43, www.tnpj.com)

National Doodle Day - May 12

Children's Tumor Foundation

Neurofibromatosis, Inc.

Olivia NF1 Update

A couple days ago we met with Olivia's genetic specialist, Dr. David Viskochil.  He is a wonderful doctor! He pulled up Olivia's March 2011 MR images so we could look at the new glioma growing near the cerebral aqueduct, and then we compared these images with past MRI's. 

The following brain MR image is NOT Olivia's. 

I found it online to help explain where her new glioma is located (I lost the website where I found it or there would be a link). 

The cerebral aqueduct is the dark triangle-ish shape in the lower half of the picture:

Above the cerebral aqueduct there is a lighter gray area and the bottom part looks like a, well, a bottom :) It looks like a bum, okay?  I can't think of any other way of describing it - Sorry!  Anywho, the new glioma is on the left bum cheek.  The MRI report says the glioma is 9.5 mm wide and it is causing a mild displacement of the aqueduct.  Basically, the left bum cheek is bigger/bulging more than the right. 

There is still good flow through the cerebral aqueduct.  There is no evidence of obstruction, though Olivia does have a greater risk of future aqueductal compression and hydrocephalus.  In 2 months Olivia will do another MRI to see if the glioma has grown. 

The part of the appointment that I found to be the most helpful is when the doctor explained the nature of NF1 gliomas.  He said they usually have a burst of growth and then stop growing.  Sometimes they may have future bursts of growth, but usually they are done growing after their initial burst of growth. Hopefully, this will be the case with Olivia's new glioma. 

The only other concern the doctor had after examining Olivia is about her speech.  He thought her voice sounded gravelly and monotone and wants her to get a speech assessment.  She will possibly need speech therapy.  This wasn't a surprise as we've noticed she is sometimes difficult to understand and she has to work harder to pronounce words correctly, well, as correct as our Utahn accents can be :) 

Olivia NF1 Update

Olivia had an MRI on March 21st to check on the optic gliomas on the optic nerves of both eyes. We FINALLY heard back from the eye doctor today.

So, the latest and greatest news first:  the gliomas and visual pathways do not show any changes - "They look great!"

The not-so-great news:  incidentally, a new glioma was found on her cerebral agueduct. Right now, there is no evidence of a blockage or other problems (great news), but it can potentially cause a blockage and hydrocephalus.  An excellent book about NF1 is now available at Google Books - pg 112 for an explanation of Hydrocephalus as a result of NF1. 

Because it was the eye doctor who ordered the MRI and called today (and not the genetic specialist) I didn't get information about follow up or what kind of treatment or anything like that.  I would say its another watch-and-wait type thing as long as it isn't causing problems. 

We are supposed to see the genetic specialist the end of May, but that appointment will probably be moved up so we can get in sooner.

More of Olivia's NF1 History -
December 14, 2010
July 13, 2010
(I did start working on the WHOLE STORY, but haven't finished it yet).

So please keep Olivia in your prayers!

Hurray! - Olivia Update

Yesterday was another follow-up eye appointment for Olivia.  She aced it! Her vision is 20/25 in both eyes, which is actually slightly *better* than her last visit (July 2010).  The doctor said her optic nerves look pink and healthy, her visual acuity is excellent, and some more good things I don't remember the exact terminology for :), but its all GOOD NEWS.  She will go back in 3 months for another check up. 

If you would like to learn all the details about the last year of Olivia's journey with NF1 you can read HERE.  As I was looking through past posts I realized I haven't ever published the WHOLE story from the first cafe au lait spot appearing when she was a wee little one month old baby - I am going to try to do this sometime soon. 

MORE SUPER DUPER FABULOUS GREAT WONDERFUL TERRIFIC NEWS

Yesterday was the BIG day for Olivia's eye exam! We were following up from the May visits when her team of doctor's felt like there was *possibly* enough vision loss to start chemotherapy.
Here are some links to past posts and a little bit of history if you are catching up on the details:

December 9th Update - CT scans done following Olivia's fall from a shopping cart show an optic glioma on the left optic nerve (and a skull fracture!), so we do more tests once she is recovered from the skull fracture.

February 5th Update - At this appointment the eye exam results were 20/30 in the left eye and 20/25 in the right eye


May 13th Update - At this visit Olivia's vision was 20/80 in the left eye and 20/40 in the right eye. This is where the doctor's became seriously concerned and pretty much wanted to throw her into chemotherapy right away. Kurt and I were concerned about making sure chemotherapy was really needed, so we stalled them by insisting on meeting with her genetic specialist and doing another eye exam.

May 26th Update - At this visit Olivia's vision was 20/40 in the left eye and 20/30 in the right eye. The doctor's involved decided to have her come back in "exactly one month" (doctor's words) to do all the testing again, and see what the results showed.
And then the week before we were supposed to go back, the doctor's office called to reschedule everything because the doctor was going on vacation (to Italy, where his wife is from, doesn't it sound lovely?). But this wasn't really a big deal for us (other than the whole "I'm having a baby that week so can we please do it all the next week instead?").

So, you are wondering what the results of yesterday's eye exams are? Well, remember I have MORE SUPER DUPER FABULOUS GREAT WONDERFUL TERRIFIC NEWS.

Yesterday, a totally uncooperative 3 year old who didn't want to be at the doctor's AGAIN, didn't want to sit still, didn't want to look at the screen, wasn't amused by the robotic doggy barking and doing flips, wasn't tantalized by promises of getting to pick a Dora sticker or a prize or "you are almost done", who didn't want to name the same pictures over and over again, still managed to have 20/30 in her left eye and 20/25 in her right eye. WHOO HOO!!! Right back where we started from a long long long time ago in February. The MRI she did last week also showd that there was no new growth or change of appearance of the optic pathway tumors. HURRAY!! Her doctor spent at least 15 minutes apologizing for the "false alarm," but I was gracious and said nice things like "Well, we needed to be sure."

It is a little exasperating that many hours and hundreds of dollars later, the biggest result from all these tests is that now we know we have a sometimes uncooperative child who doesn't always perform well on eye exams, which isn't really surprising since we know her better than any team of doctors, but we'll take it. We celebrated with ice cream cones. YUM :)

And I want to thank everyone again for all your prayers on Olivia's behalf. We certainly wanted these wonderful results very badly, but we also know that this could have ended a completely different way. We have felt the Lord supporting, comforting, and guiding us through all of this, and we know whatever the future will bring for Olivia is in His hands. Love you all!!

Introducing . . .

Sophie Mae

born July 1st at 5:28 pm - 7 lbs. 4 ozs. - 19.5 inches long

Everyone adores her and they always want to hold her. So far she is very sweet tempered and willing to be held.

This morning I woke up with Sophie sleeping curled next to my chest, Jolie sleeping against my back, and Olivia sleeping in the circle of my legs - thank goodness we have a king-size bed!! Unfortunately, I couldn't figure out how to take a picture without waking everyone up, so I went back to sleep!

I am doing great - I don't remember feeling as good after the other pregnancies so that is a wonderful blessing. Don't worry - I'm not trying to do too much. Mostly just hanging out in my bed watching Avatar: The Last Airbender cartoons and reading Harry Potter again. Sophie is also doing really good - dealing with all those new baby challenges of suddenly being born.

~ ~ ~ ~ ~

This week Olivia will have an MRI on Thursday and eye tests this upcoming Monday, so please keep her in your thoughts and prayers. These are all follow-ups to the events in May to decide whether she will need further treatment for the optic gliomas on her optic nerves or if we will just continue to watch them over time.

SUPER DUPER FABULOUS GREAT WONDERFUL TERRIFIC NEWS

I heard from Olivia's NF1 specialist yesterday to go over what was discussed at the Tumor Board. It was SUPER DUPER FABULOUS GREAT WONDERFUL TERRIFIC news.

The 2 main points discussed:

1. The recent MRI - at the meeting the radiologist said there wasn't obvious progression of the tumors. I pulled out my copy of the MRI report and it says the right optic nerve has a slight enlargement (4.1mm to 6.3mm now) and the left optic nerve is stable. So the radiologist wasn't convinced this was "progression" of the tumors.

2. The eye exams - the NF1 specialist said they obviously couldn't count the results of Olivia's May 3rd eye exam as visual regression (results were left eye 20/80 and right eye 20/40), because her May 19th eye exam were so drastically different (results were left eye 20/40 and right eye 20/30). So they have to assume the May 3rd exam results were because she's 3 and all the challenges that go with giving an eye exam to a 3 year old. She calls the picture of the telephone a chair, the cake is called candles, she mixes up the cake and the hand, the bird is sometimes called a duck, and she guesses when she doesn't know - add in she isn't always the clearest speaker, she doesn't like going to the doctor's, we always have to wait around and get bored, and you can see how her results might be a bit like a roller coaster. Here is a link to the pictures she uses in her exams. I think if we took her to 5 more eye appointments we would end up with 5 different results - but maybe that would give us a median idea of what her vision really is.

Despite all that, there still seems to be a slight worsening of her vision, which means we have to keep plugging forward. Everyone at the Tumor Board agrees there isn't enough evidence to jump into chemotherapy, but we do need to keep a close eye on her eyes and vision. It is horribly ironic that had the oncologists had their way Olivia would have had her port surgery and first round of chemotherapy today. Well, they wanted to do it last week, but Kurt and I put them off a week for more tests. So it was scheduled for today.

And that's what our future holds: more tests!

So on June 17th she will have an MRI at 6:30am, the Visually Evoked Potential Test at 2pm (supposed to last an hour), followed up with another eye exam at 4:30. I have no idea why they think she is going to perform well with the eye exam after a long day of being poked and prodded, and under anesthesia and recovering, and staring at a screen for an hour, and sitting in the car and waiting rooms. After all, she will still be 3 in a month.

Lamb & Wool Festival, Olivia Update

Kurt was out of town over the weekend and by Saturday I was a little stir-crazy so I made the crazy decision to take the kids to the Lamb & Wool Festival at Thanksgiving Point's Farm Country. I also forgot to load a stroller so I spent most of the time trying to chase 4 kids in 4 different directions through the crowds. In spite of all that we had a fun time. I didn't have my hands free very often, but still managed to take a few pictures.

Checking out the freshly shorn sheep.

Feeling the cut wool.
Pony ride

Watching the sheep dogs herding sheep, well, at least Austin was. :)

My kids favorite place at the Farm is the soil room. The cards have different fruits or vegetables pictured on them. They "grow" in these tires or hanging from a peg on trees and then the kids "harvest" them and take them to market.

There are also a couple interactive bug panels that they really like.

And what toddler can resist a tractor?

In my last post about Olivia I mentioned the eye doctor wanted to postpone chemo and do more testing in a month. Well, the next day the NF1 specialist called and said he wasn't sure that was the best plan, but he and the other doctors involved were going to the have a Tumor Board and would discuss Olivia's case and get back to us. I wanted to be able to post an update with their recommendation today but I'm still waiting to hear from someone. Will post when I do :)