Neuro Optho Joins Team Colton

Wow - I can't believe how busy we have been!  I have been working almost full time on a contract for Comcast to build a briefing center in Chicago and Johnny's work has been extremely busy with some tough cases and long hours to stay on top of things.  But life doesn't stop, so we just keep trecking....

We decided to visit a neurological opthamologist, Dr. Avery from Children's National Medical Center.  He was very knowledgeable and we are very happy we took the time to see him.  He is very familiar with Dr. Jeffery and was glad to hear we are under her care.  He agrees with her current direction and clarified the difference for us between a neuro optho and a traditional optho.  His focus is on neurological reasons for vision issues, like a tumor constricting the optic nerves.  He does not prescribe glasses or do the surgeries that Dr. Jeffery said may be in our future.  He said he is interested in joining Team Colton but that we may choose to see him yearly, every other year or if we are considering surgery to get his second opinion.  He did recommend we start Cole in school in the Fall and start to research vision services such as the Virginia School for the Blind.  He also recommended a vision treatment center in Bethesda which I have called to see if they take patients as young as Cole for vision rehabilition.  He said he does not agree with vision therapy so we are trying to find the line between the two and determine if we want to start those services.

We also requested his Early Intervention Specialist bring a Vision Specialist with her for Cole's monthly appointment.  We met with them today and it was very a good appointment. She said there are a lot of new vision technologies that help kiddos like Cole.  For example, she said many schools have camera carts that can sit right next to Cole's seat with a monitor that he could zoom into content on the board or on the teacher and see it on his monitor.  So although it's discouraging that we have to worry about these services, we hope the more we learn the more we'll be able to advocate for Cole.  We have several new therapy tasks including beading, stacking and continued work on object identification.  Both therapists felt the delays that we see with Cole may be attributed to his inability to see versus a cognitive disability to learn. 


Reagan also had a busy couple weeks.  We have been talking about putting her in a restraint camp but haven't found one for her age.  Constraint Induced Movement Therapy (CIMT) is a therapy designed to specifically treat “learned non-use” of the affected arm as a result of stroke, cerebral palsy, or brachial plexus injuries. CIMT involves using a cast to constrain the dominant arm while providing simultaneous intensive practice of movements in the hemiplegic arm.  We had the cast made this week and the therapist will add a fleece liner and velcro closures.  We will be able to pick up the cast next week and are hoping we can convince Reagan she has not one but TWO super gloves ;)  It's all about the spin right?!

Our little rock star also graduated from Swim Tots 1 to Swim Tots 2 !  That means she will get her face wet and is able to blow bubbles.  After class she was told to stand on the stool, ring a bell and they wanted to take her picture.  The poor kid - she was deathly afraid she was going to fall off the stool and was really cold.  But she is very proud of her accomplishment and is looking forward to continuing to take swim lessons.

She also had her first experience with Build A Bear.  We went with my friend Lisa and her two children, Kaitlin and Evan and my nieces Emily and Allison.  Clarice is her new best friend and goes with her everywhere. She had a great time and is already talking about going back to get Rudolph! 



 



Ophthalmology Visit - the good, the bad and the ugly

We had a follow up appointment for Cole today with Dr. Jeffery. Reagan also had a new patient visit because she had questionable results on her vision exam at her 3 year appointment with the pediatrician in May.

Reagan's appointment went very well and she passed with flying colors!  Only the mom of a baby with brain damage is excited when she hears, "Her optic nerves are bright pink and plump."  We are very relieved to know that her eyesight is good and we don't need to bring her back for several years.

Dr. Jeffery was also very pleased with Cole's progress.  She said he is using both eyes very well and she recommended we stop patching!  This was a big surprise and we are very happy patching is behind us even if it is temporary.  She wants to see us again in 6 months to check his progress.  As with many appointments during the 3 year journey with our children, however, I then got kicked in the stomach.  A blow I should have been prepared for, but wasn't.

I asked Dr. Jeffery to help me understand why Cole is running into things, walking off curbs and why he holds the iPad three inches from his face.  She said we need to remember that he has a lot of issues with his eyes.  Hopefully I will relay the explanation clearly...

Cole has two different problems - 1) he has structural issues with the eyes and 2) he has damage in the visual center of the brain.  The shaking in his eyes (nystagmus) is the outward sign that the eyes and brain are having trouble communicating.  If your eye is longer or shorter than what it should be, a corrective lens can change the refraction to adjust the image and ensure it lands on the retina.  Thus, glasses adjust where the image lands after it is received and therefore help with the structural issue. 

The reason Cole's issues are so complicated is because he also has brain damage from the brain bleed (IVH).  This isn't new information, but I have to admit that I didn't fully understand the dynamics between the structural and neural connections until today.  Cole can point out images in his environment, he is learning new words everyday and we have been so happy with his progress.  He knows several of his alphabet letters, he knows almost all his shapes including hexagon, pentagon and trapezoid.  So today was a sobering reminder that we have a very large hill in front of us. 

Glasses will help the image get to the retina but once the image is sent to the optic nerve (which we know is damaged because it is a pale pink) the brain has trouble processing that image.  Dr. Jeffery said Cole will probably never have better than 20/70 sight.  She expects he will need special services at school to help him in the classroom - whether that means just sitting in the front row, bigger printed textbooks or possibly more significant support requirements.  She said we probably won't know the true extent of his issues until he can start communicating with us (hopefully by his 3 yr birthday).  The vision requirement to drive is 20/40.  Whether his lenses will be able to get him to that minimum level is yet to be determined. 

It is hard to share how it feels to be told your child may not be able to drive.  Ask any parent who has a preteen how many times he asks how long until he gets his permit.  You would think after everything we have been through that I wouldn't be surprised by this news. And that after thinking he may be blind, that just knowing he smiles when he sees me pick him up should be satisfying enough.  So perhaps I'm looking a gift horse in the mouth....perhaps I'm counting my blessings and I should just be happy that I have any to count at all.  But I can't imagine how not being able to drive changes everything in your life.  How do you get to work?  This controls where you can live to have public transportation.  How do you take a girl on a date?  Don't get me wrong - I know we are so blessed to have Cole to love and hold.  Not a day goes by that I don't remind myself how lucky we are.  But with every bit of progress we see I want more.  I feel selfish wanting him to be ok but I know that is the dream every mom has.  My heart is heavy tonight as we are reminded to be thankful for every bit of progress that Cole makes.  This appointment has reinforced my interest in getting his Child Find assessment to learn what vision services are available.  We have an appointment with Early Intervention next Tuesday and we will discuss it then.  It is a lengthy process and he won't be able to start school until next Fall, but at least it helps his mom and dad feel like they are able to do something to help him.  The feeling of helplessness came the day he was born and I couldn't hold him.  The first day he was hungry and I couldn't feed him.  And even though today I can hold him and feed him every day, that feeling of not being able to help him seems just as challenging...

Ophthalmologist ~ Second Opinion

We decided after Cole's 2 year appointment with the pediatrician to get a second opinion from an alternative ophthalmologist.  We have noticed that Cole often walks into things (posts, fences, people).  I noticed that he usually looks down when he's walking, as if he's looking at his feet.  Given he has only been walking for 2+ months we were hoping his issues are due to being unstable and needing to watch where he is walking (especially due having low tone).  He is a lot more stable when he walks now (on flat ground anyway) and is running a lot more often.  So running into things is becoming a little more common and he hits harder when he does run into something (or walks right off curbs).  Additionally, we have noticed that he won't watch TV but if I give him the iPad or my phone he will hold it about 2 inches from his face and watch for 20 minutes.

Both Johnny and I were hoping that Cole's prescription may be wrong so we could correct the problem easily.  We met with Dr. Butera at The Eye Center (where Tiger Woods had his surgery).  I guess we should be happy with the appointment because she agreed with the course of treatment that Dr. Jeffrey has recommended and her diagnosis. 

I'm still trying to understand how he has a prescription to correct the visual issues but still walks into things.  I was told to remember that he has a very rough history with 3 major issues with his eyes and can't expect him to have good vision.  Personally I don't think it is asking too much to just have him safe....but I was reminded that "time will tell us how well he's going to be able to see."  His biggest challenge is that one eye is farsighted and the other is nearsighted.  So after several months of feeling really good about the fact that he is growing and developing, we are once again faced with a "wait and see."  There is still no certainty that he will be able to sit in a mainstream classroom and be able to see the board.  But there are so many amazing technologies these days, that we are hopeful he could have visually assistive devices that would help him.

I reread my journal entry from our ophthalmology appointment last year at this time and had forgotten how bleak our outlook was for his eyesight.  So once again, I find myself trying to remind myself that it could be worse.  And trying to be thankful that he is able to walk, able to talk, and able to smile when he sees my face.  With every discouraging visit to a doctor, I try to look on the positive side.  He does have some ability to see and for that we need to be thankful.

And with that, I am off to bed thinking about my day tomorrow - on top of a full day of work I need to start reviewing the new health insurance policy we will have in January.  With the list of specialists we have, it may be an all day activity to see what will be covered and what new problems we may be facing. 

Activities for Spasticity Hypertonia

Since so many of you comment on my Favorite Phrases updates, I will keep them coming !  Since my last post I got two new comments worth having a good laugh about.  The first was a waiter who said, "Are those fashion glasses or does he actually need them?"  The second was a man waiting for table at a restaurant.  He very innocently asked, "What's wrong with his eye" (Cole had on his patch).  After a two sentence explanation he said, "Well he probably just wanted to be a pirate."  Nice.

Well we rarely update about mom and dad on this site, so I wanted to add an undate that is non kid related!  I was recently voted in as a new member of the Board of Directors for Preemies Today.  I have been a member of the non profit since the twins were born and it has been a great resource for information about preemie related issues, building amazing new friendships, and a good way for me to support other parents traveling tough journeys.  I am honored and humbled to be asked to sit on the board and look forward to helping increase the awareness about our programs.  If you haven't already visited the link I have on my blog definitely take a look and share with others who might need our support.  www.preemiestoday.org 

Johnny has also had exciting developments with work at the National Center for Missing and Exploited Children.  He has moved internally and is now the Executive Director for the Missing Children's Division.  He has a lot more responsibility and a lot more hours but he is excited about the new challenges.  Although work in his industry is very difficult some days, it is also very rewarding.  I am so proud to know he goes to work every day to make our world safer for children everywhere.

We've had a very good week with appointments.  Cole had therapy with Heather this week and she is very pleased with his progress.  He is now able to identify several alphabet letters and can identify most shapes, including trapezoid, pentagon, octagon, circle, square, oval, triangle and diamond.  Notice I didn't include rectangle - he still confuses that with the square so we're working on that one still.  Most two year olds should have a 150 word vocabulary and be combining two words.  Cole is definitely on track developmentally and even a little advanced since he sometimes combines three words and says three syllable words (like trap-e-zoid).  Of course we don't assume this means he won't have developmental delays, but we are so excited that he continues to learn new things and is a very happy and destructive little boy.

Reagan also had a very good week at physical therapy.  Now that she is older, there are a lot of new activities we can do to help her improve movement.  As you know, she has spasticity hypertonia (high tone) in her left leg.  We focus on activities that require her to depress her heel and bring up her toe.  Her feet are finally big enough to try swim flippers.  This is a great activity with kids with spasticity because you really have to lift your toe to walk and not trip on the flipper.  She also practiced with moon shoes.  Again, these are made for kids with bigger feet but Reagan rocked those shoes!  The premise of this activity is that her feet are supported by rubber bands that are suspended in the shoes.  By setting the rubber bands tighter in the front, her heel sinks deeper and it stretches her foot as she walks.  The third activity we worked on this week was walking on bubble numbers.  These are soft plastic dots that she must walk across from one to the next.

Reagan also had a very good occupational therapy session this week.  She was fitted for a new glove and we got it this week.  It just happens to be pink.  Shocked?  I convinced her it is a Super Glove for her Super Bat Girl costume and she has been very good about wearing the glove more than she has in the past (she grew out of the blue one we've had for about a year).  Reagan's biggest challenge is being able to control her fingers.  The glove helps her extend her thumb.  She also has a hard board we can velcro the glove to so her other four fingers are extended.  Our hope is that if her hand is kept in this position more often, it will be more natural for her and help her learn to open her fingers.

Not sure why I didn't see it coming, but the new glove has also brought about a lot of questions from strangers.  The first few times people asked what was wrong with her hand I would answer, "she has cerebral palsy and has trouble using her hand."  This comment always ends in awkward silence and a sense of pity.  I now respond, "Reagan, why do you wear the glove?"  And with a big smile she proudly says, "it's my Super Glove and it helps me stick my thumb out."  Generally this ends the questions and helps Reagan to be proud of her glove.  The older she gets the more she is recognizing that things are harder for her than for her friends.  It is an ongoing struggle for me to know how to coach Reagan to feel confident.  What do I encourage her to do so she can succeed?  What should I help her avoid?  A child recently told her she was clapping wrong (because she can't get her fingers straight).  She fell to the floor and with a tear in her eye she looked up at me and said, "but mom, it's hard for me."  It took everything in me not to cry with her.  I pray daily that the spirit you see in this picture lives strong within her for her whole life - regardless how many people ask what's wrong with her. God give me strength to remind her every day how amazing she is and how proud I am of the many things she does so well.

Cole Turns Two !

Monkey See Monkey Do,

Our Little Monkey Made It To Two !
 

It has been a busy week.  We celebrated Cole's 2 year birthday on Saturday, October 6th with a monkey themed party.  We felt very blessed to be surrounded by so many of our friends and family who have prayed for Cole over the last two years.  He had a fun time playing on the jungle moon bounce, watching his friends get their faces painted, playing chase with his friends, swinging in the basement and playing in the infamous "tent".

I am excited to share that he had his 2 year pediatrician's appointment today and he is finally on the growth chart!  He is 1% for weight and 4% for height.  Praise the Lord!  And that is without correcting for age (he is technically 3 months behind but they stop correcting at age 2).  So the moral to the story is....slow and steady wins the race?  Or maybe PERSISTENCE?!  Any way you look at it, we are so proud of Cole for the accomplishments he has made over the last year and can't wait to see what the next year will bring.  I am always amazed with all I can learn from such a young man.

To follow our new annual tradition, we also spent private time as a family on Sunday to remember Kendall.  We went to my parent's property in Philomont to start a small bonfire and light a lantern in memory of Kendall on the anniversary of her ascension into Heaven.  Unfortunately it was a little colder than last year and definitely a little more rainy.  Even though they don't understand the intentions for our memorial, the kids were really good sports about the cold and rainy activity. 

As we watched the lantern rise into the sky toward Heaven, we reflected on how much we have learned from our little angel.  The memories of holding Kendall are still very close to our hearts and the pain of not being able to watch her grow up will always sting.  But as I reflect on our loss, I wonder if I have misunderstood her purpose.  I have always believed that Cole was delivered early and suffered selflessly to give his sister a chance at life.  When Johnny and I were given the option to let her perish in the womb to give Cole just a little longer to get stronger we both believed if we could ask him that he would want to give her a chance to live. 

As I thought about Kendall yesterday I started to think....perhaps she is the one who fought selflessly to give Cole a chance at life.  She started to lose amniotic fluid at 18 weeks.  The fact that I did not get an infection and that she lived until 25 weeks and 6 days is a miracle in itself.  Perhaps Kendall is also a hero for fighting her battle for so long to make sure Cole was able to have the energy to fight the battle he would soon need to face.

We miss our baby girl.  And although a day doesn't go by that I don't question why God has taken us on this journey, I thank Him for the two beautiful children that keep me wanting to be a better person. I marvel at every new thing they learn and I am reminded that miracles do happen.  If blessings were dollars I would be a very rich woman....

What not to say to a kid with glasses...

As we get closer to Cole's birthday we've been reflecting a lot on the last year and how far we've come.  I thought it might be comical to detail a few of the bizzare comments we've heard about Cole over the last year.  Below are several of the characters people think look like our son.  Although I find the comments commical, I would love some recommendations for good one-liners to respond.  Anyone have anything they'd like to share?  I don't want to be rude because I know most people are just trying to find something to say.  My advice to all of you is that it's ok to just tell someone their child is cute. Or tell them he has amazingly blue eyes or adorable blond hair.  This goes for children in wheel chairs, with braces, or any other less common assistive devices.  My theory is that people are uncomfortable because they look longer at children with assistive devices (like wheelchairs or very small children with glasses or patches) and then they think they need to say something.  I can guarantee we won't be getting comments like this when Cole is 10 years old. 

We've gotten all of these comments...Harry Potter, a robot, the kid from Jerry Maguire, Alvin (I'm assuming she meant Simon since he has glasses)...The only one below that appears anywhere close is the kid from Jerry Maguire.  Just for the record, his name is Jonathan Lipnicki.

The latest is Shirlock Holmes.  I couldn't find a single image on the Internet with Shirlock Holmes wearing glasses....except the ones of Robert Downey Jr.  Oh, and after telling us Cole looks like Shirlock Holmes he proceeded to tell us, "he looks so smart - he will probably be smarter than all of us combined."  The foot just kept getting buried deeper and deeper !  So did he look like Shirlock Holmes because he looks smart?  I'm still confused !

Bioness Muscle Stimulation - So Cool!

Wow - it's Friday already!  Cole had therapy Monday and it went very well.  Although happy with his progress, Heather agrees with Jill's assessment two weeks ago that he has abnormal extensor posturing which is causing him to arch his back and protrude his belly.  The good news is that it should resolve itself over time.  I asked both therapists about it because I was worried it was a developmental issue with his spine.  We have a few new exercises that will help him build the muscles necessary to "even out."  Any activities that require him to carry something with two hands will be helpful.  We are going to have some fun being creative!

Tuesday Reagan had PT and Jill explained an option we may consider in a few years to help with her high tone.  I've mentioned botox and achilles tendon surgery previously but this is something different.  It's an advanced technology from Bioness Inc. The system sends an electrical stimulation in a precise sequence, which activates the muscles to lift the foot to take a step.  As you know, Reagan trips because her brain isn't efficiently sending the signal to the muscle to raise her toe.  Similarly, there is a system for her hand since she has trouble straightening her fingers.  If she is able to tolerate the impulses it could eliminate the use of the foot brace completely.  Feel free to read more about the solution - Bioness Leg Cuff

Wednesday Cole met with his neurologist, Dr. Lavenstein, and we had a great visit in the new office in Fairfax.  He was very happy with Cole's progress and we reminisced about Cole's humble beginnings, the night he started having seizures, and how Dr. L finally tracked me in the hospital cafeteria to give me the bad news that Cole needed an EEG.  Cole's skin was so thin we were specifically told by the nurses that we could touch him but should never move our fingers on his skin because it could bleed/breakdown.  I couldn't imagine the glue and probes attached to such a tiny, fragile baby. 

As usual, he asked a lot of questions about cognitive and physical development.  As part of the questions he asked if Cole is seizure free.  Caught a little off guard, I confirmed he is and asked if we should be worried about seizures for some reason.  I know seizures can occur if he has a shunt malfunction, but perhaps I blocked out that Cole has an increased risk of seizures since he has a foreign object in his head.  Ugh...I think one child with epilepsy in this family is sufficient.  We go back to see the neurologist in January.  After Cole's 2 year check-up and the ophthalmologist with both kids in October we don't have another doctor's appointment for 3 months!  That means we can relax and enjoy all the upcoming holidays!  In January we have two neurology appointments, two neurosurgery appointments and a CT scan for Cole but we will think about that after a birthday party, two halloween costumes, a turkey and a guy with a white beard in a big fuzzy red coat.

Reagan also had OT today and it went well as usual.  In addition to growing out of her foot brace she has also grown out of her hand brace.  We will have her fitted next session for a new one.  Perhaps purple this time?!

The most exciting update that I have for this entry is that Cole started using three word phrases yesterday!  As you may remember, combining words is an 18 month skill.  Cole started putting together words at about 22 months such as, "close it" and "shoes on."  Out of the blue I was cleaning him up after dinner last night and he looked up with those beautiful blues and said, "Thank you mommy."  I just about fell out of my chair.  Then we started our nighttime routine and when he leaned in to kiss daddy to go to bed he said, "night night daddy". 

I know to many of you these developmental steps may seem "standard" but for a mom of a child with such a tough beginning, many tears have been shed not knowing if he would ever learn to talk or have any cognitive processing at all.  "Standard" is so exceptional.  The fact that he is not only putting together three words but also non-tangeable concepts is a signficant developmental step (a "shoe" is easier to conceptionalize than "thank you").  We are so excited for our little Ironman. 

As we move closer to Cole's birthday the memories of where we were two years ago come flooding back.  I finally ordered Cole's Caring Bridge book and have been reading the journal entries.  Although the memories are still painful we are in awe of how far Cole has come in the last two years and look forward to seeing where life takes us in the next two!  

Beachin' It!

The Bischoff family took a much needed trip to the beach this week!  We were blessed with amazing weather that made the vacation absolutely perfect.  We rented a beautiful house in Rehoboth, DE with several friends - the Golino's, Solomon's and Coullahan's.  With 8 adults, a four year old, two three year olds, an almost 2 year old and 3 infants it was definitely a week filled with activity!

We spent our time on the beach, going for walks on the boardwalk, fishing, painting ceramics and shopping at the outlets.  Reagan spent the week with Abby and Emma, her two BFFs (best friends forever).  Although like most 3 years olds she had a little trouble sharing sometimes, she thought it was pretty neat getting to sleep with them every night.  On the second night I was putting her to bed and she said, "mommy, who's house is this?"  I tried to explain the house is like a hotel and we're just borrowing it for the week.  On our drive home today she said, "mommy, do we have to go to our house now?"  When I said yes, she started crying and said, "why can't we borrow that other house?"  So cute to see how kids think!

 

Reagan had a great time painting ceramics.  After she picked Mickey Mouse I promptly showed her the one already painted to help her know what to do.  When the store manager took her to pick colors she said she wanted to paint Mickey orange.  After telling Reagan that Mickey is red and black I got a nasty glare from the store manager who looked at Reagan and said, "honey, this is YOUR project.  You pick whatever colors you want."  Although slightly taken off guard, the project quickly became a very good exercise in letting go.  She had a great time, did a great job and is very proud of her piece that is displayed on our mantel at home. 

I try to remind myself that I am going to blink and my children are going to be grown and gone.  I try to take mental pictures to slow life down but haven't found it works.  Although hard to return to the daily grind, we are glad to be back at home where there isn't sand on the floor and we look forward to being back in a routine that includes nap time again!  We are gearing up for a busy week with three therapy appointments and a neurology appointment next week.

 

 



Trip to the Eye Dr. & New Kicks for Reagan !

Wow, what a busy week! Cole had an appointment with the opthalmologist, Dr. Jeffery.  The appointment went well and she said his eyes look good.  She recommended we reduce the patching from four hours to two hours.  We were definitely excited to hear that!  She said it's important he has time for the eyes to work together (to reduce the crossed eyes).  I also clarified the discussion we had about surgery.  Dr. Jeffery said the surgery for his nystagmus would probably be done sometime between age 3 and 5.  The goal is to tighten the muscles and reduce the shaking since it causes his eyes to have more trouble focusing.  We originally thought this surgery would be much sooner so we are glad to have a little more time before we have to think about it.  She asked to see Cole again in 8 weeks.  Because Reagan's school schedule changed she wasn't able to make her appointment but she has an appointment with Cole on October 22nd.


In addition to putting in a lot of hours this week to meet a deadline for work and going to the opthalmologist, Reagan also had a therapy appointment to get her new brace fitted.  One of my goals for this blog is to share tips and tricks with other parents who struggle with the issues involved in having a special needs child.  Leg braces are one of those!  Because Reagan only wears a brace on one leg she needs two different size shoes.  Because it's hard plastic it's very difficult to find shoes that open wide enough to fit them.  Most kids shoes at Reagan's age have tight elastic laces so parents aren't always struggling to keep them tied.  Unfortunately the only store we have found that will sell two different size shoes is Nordstrom.  They have been AMAZING and I highly recommend them to anyone who needs to have shoes fitted for their children. There is also a store in Potomac called ShoeTrain.  They specialize in fitting children who wear braces, and they will sell us two different sizes, but will charge half price for the second pair of shoes.  So we generally go to Nordstrom and purchase whatever shoe will fit the brace.  We usually end up with about two to choose from.  We cross our fingers that we like the way they look. 

Reagan currently wears a Jumpstart Kangaroo DAFO (Dynamic Ankle Foot Orthosis).  The cerebral palsy (CP) causes her gastrocnemious (calf muscle) to always be tight.  Some children with CP have the opposite issue and have low tone.  The high tone causes Reagan to point her toe and therefore trip.  The DAFO forces her ankle to remain at 90 degrees and prevent her from pointing her toe.  We do stretches to also loosen the muscle but the brace helps reinforce that angle.  Future treatment options include botox shots and/or a surgery that lengthens the calf (it's called gastrocnemius-soleus intramuscular aponeurotic recession).  At this point we are hoping that with enough stretching, therapy and the right physical activity she will be able to avoid these treatments.  After a trip to the Nordstrom in Tyson's Corner today we were able to find a pair that fit.  She's very excited about her new shoes and we're hoping they will last as long as the brace does!  As you can tell from the picture, she still loves pink ! 

First Day of School

Reagan started school today!  We received her pre-K schedule last week but it wasn't exactly what we expected.  Last year Reagan was in Ms. Torry's class on Tuesday, Thursday and Friday with private therapy on Monday and Wednesday.  This year she is in Ms. Carolann's class Monday, Wednesday and Friday and we are trying to move her therapy to Tuesday and Thursday.  It's not an easy feat when some kids stay with the same therapist for 10 or 15 years.  We went to the Open House Friday and are very excited about her new classroom.  She is the only girl with 10 boys!  There are four other children with Cerebral Palsy in her class and we talked to her about why some children need wheelchairs before her first day of school today since two of the boys are in wheelchairs.  She was excited to go to school this morning and had a great time.  Ms. Carolann said she quickly became friends with Raphael (one of the boys in the wheelchair) and although she didn't talk much about her day, she seems excited to go back on Wednesday.

 

We've had a busy week. Cole also had his monthly visit from Heather from Early Intervention. She was very happy to see his progress and we have a few new activities to work on this month. He has been eating very well, walking around more confidently, and he continues to learn new words every day.

We also supported Macy's Shop for a Cause event at Fair Oaks Mall Saturday.  The promotion gave shoppers the option to purchase a $5 coupon giving them 25% off all their purchases.  100% of the coupon price was donated to the March of Dimes.  We were honored to be invited to share our story. Reagan drew pictures for several of the people on the sales team who raised money.  Evelyn (holding the picture) had the top sales and was born at 25 weeks.  With each event we support we get better at sharing our story and helping others understand the journey of a premature baby.  Someone said, "I had no idea a two pound baby was the size of a Chipotle burrito or that a baby that small could live. He looks so good."  Although each experience is a difficult remembrance of our past, they remind us how far Cole has come.  Not a day goes by that I don't marvel at the new things he learns and wonder how we are so blessed. 

Great Book - I Believe in You

One of my goals for the Bischoff Adventures blog is to encourage parents to share insights.  One lesson I've learned in the last three years is that we can't parent alone.  Our friends and family have been an important support for us.  I recently bought this book and want to share it with everyone and encourage you to post comments about similar books that you recommend.

Reagan is only three and I can already see how important it is to encourage her through the up's and down's of life.  I continue to admire Reagan when I hear her squeal, "Look mom, I'm doing it with lefty!"  How do we as parents encourage that excitement in our children's lives?

This book does an excellent job of sending the right message about facing adversity, learning from it and remaining positive.  I found a good book review if you are interested.  Enjoy!

CT Scan Results are Discussed

We met with Cole's Neurosurgeon, Dr. Myseros on Tuesday for a 6 month check and he was very impressed with how Cole is doing.  Specifically he was very pleased with his speech and that he was walking.  When I mentioned he is still seeing an Early Intervention Specialist and they are tracking him about 3-5 months delayed still he said, "no child born at 25 weeks with hydrocephalus will escape delays."  Something we of course know, but it's hard to hear.  Of course my question was, "does this mean he won't get A's or does this mean he won't be able to take the same classes as other kids?"  His answer, as with most doctors was, "time will tell."  We are so happy with how he's doing that we choose to focus on the positive progress we've seen lately.  We took him to Sports Authority the other day and let him walk (instead of being carried or ride in a cart).  At one point Reagan ran one way and Cole went the other and I thought, "here we go!"  We are so pleased he continues to progress.

Unfortunately we missed the doctor at the last appointment in February due to a scheduling issue (his morning surgery ran long) and saw the nurse practitioner. So we had a more detailed conversation about the CT scan. Overall he said the shunt looks good (the white spot in the middle of the brain on the picture below) but that his ventricles are "teeny tiny" (the dark spots at the bottom).  This is not necessary a good thing - it means that the shunt is withdrawing too much of the Cerebral Spinal Fluid (CSF) from the ventricles.  There have been many attempts at creating a programmable shunt so doctors can modify the "flow" of CSF, but they have thus far proven to cause more issues than be helpful.  The biggest concern with an overactive shunt is that the ventricles will occlude the catheter.  Think of it like a soaker hose in the garden - you need the holes in the hose to let the water out.  If the dirt gunks up the holes it backs up in the hose and can't release the water.  The shunt is the same way - the catheter has holes to drain the CSF but the small ventricles collapse on the catheter restricting the flow.  Unfortunately there is nothing we can do to fix it.  The US statistic for probability of a shunt revision in the first year is 40%.  However, Dr. Myseros's statistic is 10%.  We beat those odds!  We know we are in good hands and that he will make the right decisions for Cole. We know the probability of a shunt revision in the first 10 years is 99% but with the decreased ventricular size Cole has an increased risk of a malfunction.  We will just keep praying that it waits as long as possible and that we catch it quickly.  Cole will need another CT in February and we will have a follow up with Dr. Myseros then.

We also talked to Dr. Myseros about taking Reagan as a patient.  He said he would love to have her and that he doesn't see any issue with performing epilepsy surgery if it's needed.  As he said, "it's really not that hard Danielle, grey matter is grey matter."  He recommended we bring her back with Cole in February since she was just seen by Dr. Yaun. Below are two pictures of Cole with Christine Mason, Nurse Practitioner and Dr. Myseros, Neurosurgeon.

MRI Results Are In !

Wow - we've had so many adventures that I need share with everyone.  I apologize in advance for this being a long entry.

Reagan's Neurosurgery Appointment
The most critical update is our meeting with Reagan's neurosurgeon today, Dr. Amanda Yaun. We haven't had a face to face meeting to discuss the MRI results from May and were anxiously awaiting this appointment. If you remember, we were told Reagan had abnormal activity throughout her entire brain. We were happy to learn today, that Dr. Yaun believes the seizures are coming from the original seizure focus. When an EEG is conducted, probes are placed all over the head. Given the area of resection was so deep in her brain, Dr. Yaun thinks the leads from the left side of the head were triggered by the original area. This is good news. She said she is hopeful that we can avoid surgery given the medication appears to be working. But she also said it's really too early to tell. The good news is that surgery is an option, however. If they have to do surgery, given the location of the seizure activity in the brain, she would suffer additional motor delays since it's so close to the motor strip. To avoid removing any white matter that isn't necessary, they would open her brain (same scar as before), they would lay an electrical grid (like last time) on the brain, and then close the skull with the wires hanging out. She will need to have seizures for them to triangulate the exact location that is causing the problem and it's unlikely for her to have seizures when she is sedated for surgery. So they will wake her up, let her play for potentially days until she has enough seizures to collect the data needed to complete the resection. Then they would schedule another surgery to open her again and remove the brain matter causing the problem. While we don't even want to think about this alternative, it is nice to know that it is an option. She said we will try numerous medications before we get to that point, however. Each one has different side affects for different children so it's just a matter of finding the right one for Reagan. Right now, we are hopeful that we have found one that works without keeping her so "snowed" that she can't stay focused. Unfortunately we also learned last month that Dr. Yaun has been given a promotion. She will be moving to Children's Hospital in Oklahoma City to launch the only Epilepsy surgical team in the state of OK. While we are excited for her and know it is well deserved, we are anxious about her replacement. She agreed to continue as a second opinion for us and asked to keep her updated on Reagan's progress. She wants us to return in six months for a follow up with the new neurosurgeon. Below is a picture of the MRI that shows the void where gray matter was removed and has now filled with spinal fluid.

Tiny Warrior Weekend
We were invited to the First Annual Tiny Warrior Weekend at a friend's house on the Shenandoah River in WVa.  This was a reunion with special friends who were all in the NICU around the same time as Cole.  The weekend was a celebration of our friend's daughter Avery's second birthday and a celebration of the memory of her twin sister, Sienna.  Cole followed Avery's path almost exactly, although she had two additional surgeries.  It was wonderful catching up with 15 other 2010 Fairfax NICU preemies and their families (about 120 people were there), but it was also a very emotional weekend thinking about how far we've come and how much we miss Kendall.

Cole's Big Step
Another important progress to share is that Cole is walking more than he's crawling!  With this new milestone his Physical Therapist, Jill, has recommended that we discontinue therapy.  She wants to have me bring him with Reagan every once in a while so she can keep an eye on him, but he has given his monthly slot to his sister.  So she now has OT weekly and PT every other week and he has therapy with Early Intervention monthly.  We are very excited about this developmental milestone!

Reagan Is Potty Trained !
I forgot to mention this in my last blog.  As they say, all good things come to those who wait.  After our trip to Hilton Head we decided it was time to be a little more dedicated to the potty training cause.  A few cute princess undies and a cool seat cover and she was trained in less than a week!  We are very excited for her.  Although she struggles pulling clothes up and down given her left sided weakness, she is very good at adapting and has almost mastered it.  Letting go with her right to wipe on a public seat is still very difficult as she can't balance with her left, but again, she has been a great trooper and is learning to accomodate.

Preemies Today
I may not have shared with you (or maybe I have and forgot) but I have been a member of the Preemie's Today organization since the twins were born.  It has been a great way to stay connected with other moms who have similar challenges and support new moms to give them hope.  It has been a very cathartic experience.  I recently volunteered to be the NICU ambassador !  This means I will be working with the local NICUs to share information about our program and ensure moms from that hospital have the support they need when they go home.  I feel honored to be considered for the position and look forward to getting started!

KeCoRe LLC is on FIRE!
As many of you know, I started a consulting company to stay involved in corporate and government business.  I just finished one contract developing training for a nationwide utility company.  I will be starting another project next week developing a web based training for a government contracting agency.  And I will also be deploying training for the VA Department of Emergency Management to firefighters in Central VA.  Feel free to check out my website - www.KeCoRe.com or follow me on FaceBook.

Reagan Goes Fishing

Reagan also went fishing for the first time this month!  After weeks of anticipation having watched Micky Mouse Clubhouse and seeing "gooey fish" she was very excited to go with dad and her pink fishing pole.  And kudos to dad - they caught one! It wasn't pink like she hoped, but she was excited none-the-less.









It's a busy season with numerous doctor's appointments.  Neurology last month, 7 therapy appointments, two neurosurgery appointments, and two opthalmology appointments this month and neurology in September.  You will hear from us again soon ! Hope you're having a wonderful summer!

The latest Bischoff Adventure was a quick over night trip to Ocean City, MD for Reagan, Cole and Mommy with my sister and two of my nieces.  Although the weather was less than desirable, we had a good time and a safe trip.  We stayed at the Carousel Resort and although it's an older hotel, Reagan was thrilled there was a carousel in the hotel.  Not to mention the excitement over her blowup bed!!

Cole had an appointment with his Early Intervention Specialist last week and she was very happy to see he was talking and walking more than her last visit.  She said he's doing very well, but she is concerned that he isn't able to hold his attention long enough for age appropriate tasks for his corrected age.  For example, he should be able to understand the task of stacking blocks and knocking them over.  We will be watching this closely and including goals around tasks like this when we rewrite his goals next month.  I asked if she thought this was an indication of an ADHD type disorder, but she thinks it's more likely a cognitive processing problem related to the brain bleed.  Given he has made leaps and bounds this month in his cognitive development, we are hopeful that we will see improvement in this area.

Reagan met with her Neurologist today but the computer system was down so the doctor wasn't able to reference her EEG or MRI to discuss her prognosis.  Although frustrating, it will most likely be time that will determine how she's going to do long term.  She is currently 32 pounds and is able to be on the current level of Trileptol until about 45 pounds.  Dr. Pearl said he will not be surprised if we need to increase her medication, however, well before she reaches that weight.  We scheduled another appointment with him in January (6 months).  Dr. Pearl ordered labs to be done to test Reagan's blood for any negative affects of the medication. Unfortunately we weren't able to do that today so we will try to schedule them when we go back for Cole's appointment in August to see his neurologist, Dr. Lavenstein.  We will meet with Reagan's Neurosurgeon in early August and plan to discuss her MRI in more depth at that appointment.  We are hoping to learn more about the "lesions" seen on the MRI and what that will mean for treatment.  Unfortunately we recently learned Dr. Yaun is moving to OK to lead the neurosurgery department for Children's Hospital.  This is an well deserved promotion for her, but she will be greatly missed.  She currently doesn't have a replacement so we are investigating different options for Reagan's ongoing care.

Thanks for continuing to follow our blog!