Neurosurgery and Neurology Updates

Well we're closing out the year with our usual neurosurgery and neurology visits.  We met with the neurosurgeon for both kids two weeks ago.  It's always good to see Dr. Myseros and get his perspective on the latest in the world of scans and shunts.

He said Reagan looks good and although he wants to continue to see her periodically, there is nothing overly concerning.  He did say that he's surprised we haven't considered tapering her off her epilepsy medication naturally by weight to see what happens.  I'm sure that will come up again when we meet with the neurologist, but as I've shared, her scans still show significant epileptic activity so it wasn't advised.

Dr. Myseros said Cole looks good and we talked about when he should have his next scan.  He'd like to have him scanned again before our next visit in the Spring.  Although we've been on this journey for over 8 years, I am always learning new things about my kids' diagnoses.  He shared a story about a patient who hasn't seen him in 8 years and although had no symptoms he decided to have her get a CT to check the shunt function.  The scan showed the tubing was broken despite not having any symptoms.  It gave me hope to hear that she may have become shunt independent.  Although he said he would never remove of the valve in the brain (unless it's malfunctioning), he will be conducting surgery to remove the tubing in her stomach and leave her "open" for a few minutes to see if anything is draining into the peritoneal cavity.  He said it is sometimes possible for the tubing to build up a "barrier wall" that allows the fluid to drain through tissue build up so that it looks like you are shunt independent but actually there is still drainage.  Anyway, the point is that he said there are significant long term complications from all that tubing in the body and it should be removed if it's not needed.  And BAM...there's the kick to the gut needed to shift you from hope back to reality.  But we live a life knowing his rate of shunt failure is 99% in the first 10 years so this isn't a surprise.  We are very blessed that Cole hasn't had any issues and pray that continues.

On to neurology...as you may remember, Cole graduated from his neurology appointments in the Spring but Reagan continues due to the epilepsy medication.  It was a good appointment and nothing new to share.  He said she looks good and is still within the therapeutic level for her medication so we decided not to increase it.  I did mention Dr. Myseros's question and he said that he believes in being more aggressive.  If she's ready to come off the medication he prefers to wean down over a 6 week period rather than coming down naturally based on weight.  He said he would like to have another EEG in the Spring before the next appointment and consider taking her off next summer.  I am definitely not going to get my hopes up, but it gives us something to look forward to.  Unfortunately, even if she appears to be seizure free they can always resurface like they did last time. It may be weeks, months or it could be years.  Being seizure free for 5 years definitely increases the chances of being able to consider coming off the medication except that the statistics are very different for cases with structural causes for the epilepsy.

Just as Cole could have a shunt malfunction any day and end up in brain surgery again, we've come to accept that Reagan will always face epileptic recurrence.  And while we so desperately want her to be independent of the medicine, I sometimes wonder if it's better to know she's medicated and safe.  The thought of letting her go swimming or climbing on a jungle gym not knowing if that will be the moment she has another seizure will bring with it another set of concerns.  And yet I worry about her being able to drive or bear children.  And although this is a long way off, and new medical developments may occur, it's hard to think about her being told she can't have her own children.   And so we continue with this thing called life and take every moment to enjoy what we have today not knowing what tomorrow will bring.

We were lucky to have a beautiful day to cut down our Christmas tree.  It's a family tradition for us to go the day after Thanksgiving.  Despite fighting over who got to pull it to the bottom of the hill, we had a great time and had a fun afternoon decorating it.  I'm very lucky Reagan loves putting on the ornaments as much as I do!  We also got their school pictures - they look so grown up!

Ophthalmology, Pediatrician, NuEyes, Read-a-Thon and Annual IEP

As we move into the Fall we have several doctor appointments that started with the Ophthalmologist, Dr. Jeffries.  We had a very good visit and I marvel at how much easier the appointments have gotten now that the kids are mature enough to follow directions and sit quietly so I can talk to the doctors.  Cole had his eyes dilated and his prescription was updated.  I am excited to share that his vision has improved slightly! Not by a lot, and we don't expect that to necessarily continue, but it was a nice surprise.  Unfortunately he is still considered legally blind, but any improvement is always welcomed. As he is able to better understand the tests we hope we will get a better idea for what he really can see.  The doctor believes the improvement was a result of the surgery that allowed better alignment, reduced shaking and from his increased ability to accommodate by adjusting his null point to see (off centering his head to get the clearest image).  One big difference with this appointment was that the doctor recommended Cole get bifocals.  What I didn't realize is that the prescription he needs causes images to get smaller.  So by adding the bifocal for reading, we can slightly increase the size of what he reads to help him see it better.

After the appointment we drove to the optometrist's office (located with the low vision specialist) to order his new glasses.  I've been wanting to get glasses without a strap for a while now, but he still tends to throw them at me when he gets mad so the durable rubber has been a very good option.  He has been wearing the Miraflex since he got his first pair at 11 months old.  Unfortunately I didn't realize how good we had it!  Finding a pair of glasses that work for Cole was VERY hard. First, he has a thick prescription which rules out any wire frames.  Then, the bifocals rule out any rectangular frames because the real estate is too small for the bifocal.  And given his prescription we can't do progressives because again, he would lose too much real estate on the lens. One thing I didn't realize was that his temples are actually pretty wide, possibly from the plagiocephaly he suffered from his extended stay in the NICU.  So many of the glasses were too tight on the temple and would push the glasses down on the nose.  After an exhaustive search and lots of attempts, we got to pick from two pair.  But we both really like them and they are working out well.  I did take him back once already to have the arms adjusted so they would stop falling on his nose.  He is adjusting well to the bifocal and seems to be happy with them.

While visiting the optometrist I spoke with the low vision specialist about our upcoming appointment with the rep from NuEyes, the visual prosthetic magnifier.  He further explained that the reason these glasses will help Cole is because we can adjust the refraction with glasses, but the tissue center of his eyes is permanently damaged.  He said that pretty much everything Cole sees is fuzzy, but when something is small, just losing a few "pixels" of an image makes it difficult to discern.  When you enlarge an image, losing a small pixel has much less of an impact because the percentage of the image that you lose is much smaller.  So the more we can magnify images for Cole, the better he will be able to see them.  We discussed the many questions I had for the rep and was glad we were able to touch base.

The following day I met with the rep from NuEyes, Kristi, and she setup a full demonstration of the glasses with Cole's TVI at the school.  We discussed models, durability, usability, and future upgrades.  Then we brought Cole into the library to try them.  He immediately went to the fish tank in the library to look at the fish.  The TVI said he had tried to look at them the previous day but of course you can't get close to a fish.  In the picture shown he went from only being able to read the first two numbers (he read the 6 as an 8 likely because it was fuzzy) to being able to read all three rows of numbers with the glasses.

Although the glasses are VERY cool (much like virtual reality) they will take some getting used to.  They are voice activated for zoom (up to 12 times) and will allow him to see more of what's going on in the classroom and have them read to him if his eyes start to fatigue.  One example is using them for group reading in the classroom.  Long term he would also be able to do internet searches.  Outside of the eduction setting, he may also be able to go games or shows and see what's going on.  Unfortunately it will be another technology to integrate into the curriculum and determine what and how it should be used.  Not to mention they are $5,995 and you probably remember he broke his cane in half the first week he had it.  The rep said The Lion's Club focuses on grants for visual disabilities so we are investigating what opportunities may be available through them.


We also kicked off our school fundraiser that day so I was able to go into the kids' classrooms and have them read to me.  I was so impressed with how much progress Cole has made this year using his CCTV.  Although it's still hard to position physical books and worksheets, he has mastered online reading on the device and that is a great option for him.

Cole also had his 7 year check up and flu shot.  Although he resisted the flu shot and had to be held down, the appointment went well and the doctor is pleased with his growth pattern.  He struggled for so long to even be ON the chart that it's nice to see an even, upward movement for height and weight and go into an appointment with no real concerns to address.

It's also IEP time for Cole which mean his school goals need to be reviewed and updated.  We had his meeting today and I have mixed feelings about the changes.  Most of his services will remain stable into the new year with the exception that his occupational therapy has been reduced to consult only (no service time).  I am slightly concerned about whether his hand writing will decline given they have worked on this a lot, but just as with private OT, his therapist feels he has made amazing progress and is no longer delayed compared to his normally developing peers.  But I know this is something we can and will work on at home to improve the clarity.  Also, the team talked about the option of the NuEyes and we decided to reinvestigate at the end of the school year.  The team is worried about integrating another technology when he's just getting proficient on the ones he has now.  Also, he struggled slightly to figure out how to use the glasses and we think a little more maturity will greatly help his ability to use them to their potential.

A lot of updates, but all good.  Next up is neurology and neurosurgery in November!

Cole's Monster Mash - Cole Turns 7!

And just like that, 7 years have come and gone.  Cole chose a Monster Mash birthday this year and invited his 1st grade class and friends to the house for a costume party.  It was a little chaotic given I was gone all week on a business trip and got home Friday night.  On top of that Johnny was deployed to Puerto Rico helping with the disaster relief of Hurricane Maria.  But I was able to pull it together!

Within two hours of getting home from St. Louis I had most of the decorations up and the table and tableware set and ready for the next day.  I still needed to get the mums purchased and planted so the house was presentable - all my flowers died since I forgot to leave a note to water them while I was gone.  I needed to grocery shop, pick up the cake, make the balloon spider for the ceiling, make the skeleton lanterns and of course get the dry ice for the magic potion!  After getting all I could done, Reagan and I took Cole to Cheesecake Factory for his birthday dinner with my friends Vicky and Justin. It's his absolute favorite so of course we had cake and sang Happy Birthday.

The next morning we had a lot to get ready but it went smoothly.  Mums were purchased and planted.  We were visited by a beautiful memory of Kendall when a butterfly landed on one of the mums.  When we got home one of Johnny's co-workers stopped by the house to drop off a present for Cole with a balloon.  He and his wife then offer to get the dry ice for the potion - huge help!!  After they left Cole looked at me kinda sad and said, "mom, it's not fair this whole day is about me and nothing is about Kendall.  Can I send this balloon to her in Heaven?"  My sweet, sweet boy...so we wrote her a note,  he let it go and we watched as it disappeared into the beautiful blue sky.  It was a bitter sweet day holding the party on the anniversary of her loss, but I love that he was thinking about her and wanted to give her something for her birthday.  Not a day goes by that we don't think about her and wish she were here.

Overall the party was a success, but I had a lot of rowdy 7 year olds!  The kids had fun playing on the moon bounce, painting pumpkins, beating up the eyeball piñata and running crazy in the basement.  One thing I love about our house is that we have a basement made for play.  Between the rock wall, monkey bars, air hockey, roller coaster, balance beam, see-saw and drum set with microphone for singing, there is something for everyone. For those who didn't come in costume I had lots of options for masks the kids could wear and then take home.  And of course they were able to take home the pumpkins they painted.  Cole's costume this year is the Scream character with a two layer plastic mask that releases blood when you squeeze the "heart" bulb in the costume.  I never would have imaged that two other boys from his class had the exact same costume! They thought that was pretty funny...but I doubt any of them have actually seen the movie or they wouldn't be laughing!  The kids had eye ball cake pops, chocolate covered finger pretzels, mummy hot dogs and a magic fogging punch (with dry ice).

Needless to say we were all exhausted by the end of the day and slept well!  We also celebrated Cole's birthday Sunday with my parents and sister and then again on Monday with Johnny's parents.  So it was a four day celebration!  It was hard not having Daddy there, but we are so proud of the work he is doing to help the people in Puerto Rico and hope he will be home soon!

Cole Graduates from OT! The struggle to feel normal...

Another HUGE milestone for the Bischoff Family was reached today! Cole has graduated from occupational therapy at INOVA Loudoun Hospital!

Cole started weekly therapy in the NICU at Fairfax Hospital.  It was mostly stretching and positioning, but it was therapy.

After discharge he started Early Intervention at home with Heather and then physical therapy with Jill (Reagan's therapist)  and has been in therapy ever since.  That's 7 years of weekly therapy and for a while he was doing both physical and occupational therapy so he went twice weekly.  He didn't walk until he was almost 2 years old.  His journey has been very long and he has worked very hard. Anyone who has gone to physical or occupational therapy know that everything they ask you to do is hard...or it wouldn't be a goal.  He's had many therapists over the years and unfortunately we had to move from Children's Therapy Center to INOVA Loudoun Hospital when our insurance changed.  We definitely miss our therapists.  They truly have made such a big difference in both our children's lives and we owe them a debt of gratitude.

Although we are now free from private therapy, both kids are still receiving occupational therapy services through the school.  Their goals in school are very different because they must focus only on skills that impact their education.  For example, being able to open glue containers or effectively use scissors, or write legibly within the lines.  In private therapy we are able to work on those skills in addition to goals related to skills like dressing (e.g., buttons are hard for both kids) or other life skills.

You would think I should be ecstatic we have one less appointment and that Cole's therapist, Christine, thinks he is ready to take some time off. But it comes with mixed emotions.  Although I'm happy he has achieved his goals, there are still areas in which he needs extra work.  I am happy that she thinks he can achieve gains through his other activities, but it also increases the pressure of making sure we work on those things at home or through activities.  We have cut back on a lot of activities for a few months to try to settle down our hectic schedule and see if that helps the signs of sensory processing challenges.  Christine is going to build a home program for us to follow and we will focus on those to help him continue to see gains.  When you see how tiny he was when he started, and how happy he is today, I couldn't ask for more.  He couldn't even sit up on his first visit!

I've struggled for the last few weeks as life has started to feel "normal" again.  The doctor appointments continue to become fewer and further between.  Now with therapy being discontinued, it's closer to normal than we've felt in over 8 years.  But each time I've allowed myself to feel "normal" we've been kicked in the gut...either more seizures, or a concern about a shunt failure or finding out Cole needs to learn braille.  So my nature is to have my guard up.  But normal feels really good.  I still worry about what kind of job Reagan will have that doesn't require typing.  I worry when Cole grows up where he will live so he can catch a bus to get to work.  And as he is doing more reading now in first grade I am realizing that he will definitely need an alternative solution for learning - either braille or text to speech translation.  But we will carry on and find our way one day at a time.

So when I say "normal" I guess I mean nothing is emergent anymore...it has become a lifestyle and is therefor normalizing.  We have a child with partial paralysis of the left side.  We have a son who is legally blind.  We have a daughter in Heaven, and yet I find myself feeling guilty that they are doing so well.  I lost my 7 year old God son one month ago to an unexpected aneurism.  It has been devastating to lose him and heartbreaking to see how much pain it has caused his family and friends and how much our lives will forever be changed.  My father always says that God creates your spirit but a husband and wife create the body.  God does not create pain and doesn't cause or choose medical issues.

We had an interesting discussion this week about God's will.  When we face tragedy we pray and ask God for help. I remember praying, "God, please let Reagan live through brain surgery."  "God, please keep Kendall and Cole safe in my belly so they are healthy when they are born."  When our prayers are answered people always say, "Praise the Lord" as if he chose to cure the cancer or prevent death.  We search for answers for why God allows good people to feel such pain and face tragedy.  But truthfully we need to pray NOT for the outcome, but for the understanding.  So maybe instead of praying for good health, we should pray for the strength to face the illness if we get sick.

We pray and ask God not to take our child and then ask God why he let our child die.  We get confused and angry when our prayers aren't answered.  We get angry because we don't understand why He would allow this to happen to good people.  But maybe He is not in control of all the things we ask him to help us with in our prays...and therefore we are praying for the wrong thing.  God doesn't DO these things to us like give us a tumor, just like he doesn't create the hurricane that kills people and levels a town.  These things that happen are biological or nature at work.  We must pray not for an OUTCOME but rather for the ABILITY to handle the outcome.  It's interesting because if we accept this to be true, then the anger and frustration that something so horrible could have happened is not blamed on God, but rather He becomes a savior to help us move past the pain by
asking Him for strength.

As I continue to pray for strength and understanding, I want to share a photo I found this week.  It truly speaks to me.  I have often considered ending my blog now that life is no longer emergent, but I still want to believe that my journey as a purpose...and I don't know who I can help by sharing that journey. This photo is part of a project to help others understand the feeling of losing a child.  It is such a truly empty feeling.  A feeling I had almost 7 years ago and one that I feel again with the loss of my God son.  But today I have a new understanding.  I don't ask God why.  I ask God to give me the strength to move forward, feel happiness again, and support my friend and her family as they learn to live with a silence in their home that is truly life altering.  If you believe, please lift them in prayer as their journey to healing will be a long one. (You can click on the photo to view it larger.)

Empty Photo Project by Susana Butterworth