Cole gets the green light!

We've had another busy week and it has been all about Cole!  He had his Early Intervention appointment last week followed by a meeting with Loudoun County for his intake to determine if he is eligible for public preschool next Fall.  The appointment went well and resulted in a plan for the next few months.  We will have two evaluations prior to his eligibility meeting on May 6th.  He will meet with a vision specialist and an OT in March to determine what delays he has and whether specialists in a classroom setting could help better prepare him for Kindergarten. 

I was asked to speak at the INOVA Fairfax Hospital March of Dimes Kickoff event.  Although the story is still difficult to share, I do think it gets easier each time.  As I looked across the room of 100 people I knew nurses from several departments of the hospital from my numerous stays there.  Not only Cole in the NICU, but Reagan in the PICU and my stay on the HRP floor.  The resounding message was, "it DOES make a difference when you raise money for the March of Dimes.  My family and my children are a living testament."  We were also invited to the official March of Dimes Kickoff at Nationals Park President's Club.  It was great seeing so many sponsors and supporters gathered to help babies. 

Many families who have babies living in the NICU have received a blanket from Peg Brown.  Although I never met her, you can see the blanket she made for Cole when he was in the hospital.  She donated 1,000 blankets to babies in need since 1994 and estimated it took about 10 hours to make each blanket.  Unfortunately she died of cancer last week.  What a wonderful legacy she has left behind with so many families, including our own.  Our prayers go out to her family.

We love keeping in touch with the nurses and doctors who have taken such amazing care of our babies.  Thank goodness for Facebook!  We were able to meet with one of Cole's nurses from the NICU today.  She hasn't changed a bit, but he's growing like a weed!  We enjoyed having lunch with Stephanie.  Sweet Water is becoming a bit of a tradition for us.

We also had an appointment with Cole's neurologist today, Dr. Lavenstein.  He is very pleased with Cole's progress.  He is finally 23 pounds!  Dr. Lavenstein gave us a green light to take a year off until his next appointment!  I remember getting that green light for Reagan and thinking, "this is finally behind us".  It was such a huge relief feeling like she was stable enough to not walk through the revolving door at the Children's outpatient center.  Of course it was only a few months after that appointment that she started having seizures again.  I asked if Cole had a higher probability of seizures as his brain develops and he said, "of course, he has a foreign object in his brain."  It's always in those moments that I marvel at how much I want to forget.  How much I want the past to be just that - the past.  And then I realize, this isn't a skinned knee or a broken arm.  There will never be a moment where I will be able to say, "this is finally behind us."  And so we carry on, loving our little ones more with every day and being thankful for every day that there isn't something wrong.  And with that, we start planning for March....which is all about Reagan!

We don't have another doctor's appointment for two months.  As you know, we do have 12 therapy appointments for Reagan at UVA in March, and two evaluations and one therapy session for Cole.  I look forward to sending updates from Charlottesville where Reagan and I are "going on vacation."  Not exactly the beach or Disney, but I'm getting her excited none-the-less! 

Teeny Tiny Ventricles

Well we've had another busy week.  Reagan and Cole both had neurosurgery appointments with Dr. Myseros.  We reviewed the CT results for Cole and he said, "he looks great - his ventricles are teeny tiny".  Unfortunately there's nothing we can do to stop them from getting too small.  There are programmable shunts, but our surgeon didn't choose to use one because they can cause additional complications.  We discussed our concerns about Cole being exposed to too much radiation and Dr. Myseros said there's a new "quick MRI" technology available at Children's Hospital that is now available.  It provides all the advantages of the CT and MRI without the radiation or anesthesia.  One school of thought is that if there is a malfunction we would notice the symptoms so why expose him to the radiation if we know he doesn't have an issue.  Dr. Myseros said the malfunctions can often happen so quickly that you end up in an emergent situation requiring surgery when a scan might catch it in advance so it can be watched more closely and planned to prevent more injury (or death).  And with that, we will plan another visit with Cole next year for a quick MRI.  Wow - a full year - what are we going to do with all our free time?!

This was Reagan's first appointment with Dr. Myseros since her surgeon, Dr. Yaun, left to take over the Neurosurgery Department at Children's in OK.  He hammered me with questions about her history and reviewed the MRI from April. He is in agreement that her seizures are likely from the scar tissue from her original surgery.  We did discuss a few areas of the brain that have spots of abnormality but he doesn't think those are the issue given they were there in her first MRI and she was seizure free for almost two years.  He did sound hopeful that we will be able to avoid another brain surgery given the medication is currently controlling her seizures.  Although he is happy with her current motor and cognitive function, he was unwilling to wager whether she will need to be medicated for life.  He said he fully trusts Phil (Dr. Pearl).  So we will continue with the plan to keep her on Trileptol for another year or so and then try to wean her.  We also asked about electrical stimulation therapies and he said he isn't familiar with them but Dr. Sally (Sarah) Evans is very good and he trusts her opinion.  He does support the constraint induced therapy program so we plan to move forward with that in March.  He asked us to come back in a year.  Wow - a full year - what are we going to do with all our free time?!

Great news for Reagan today - she graduated from Tots 2 to Tots 3 at Swim Kids Swim School.  She was very excited to stand on the stool, ring the bell and pick a toy from the treasure chest.  In case you're wondering what skills she mastered, she is now able to put her head under water, open her eyes and float on her back.  Unfortunately we will need to take some time off to participate in the UVA rehab program but hope to get back on the schedule in April.

More to come next week!

Reagan's clean bill of health - Cole's annual CT scan

It has been a busy couple weeks and I don't know where to begin!  Reagan had an appointment with her neurologist, Dr. Pearl and he said she looks great!  When we pulled up to the office she said, "is this going to hurt?"  Of course I told her, nope, we're just here to say hello to Grandpa's friend!  After discussing several of our concerns, he recommended we have blood work done to rule out any issues with her thyroid causing her overheating issues.  We're hoping it's nothing, but he felt like we should check it out.  Breaking the news that she had to give blood was torturous.  Although not as bad as having to tell her that the tech blew the first vein and we had to do it twice.  She's such a trooper!

We also discussed the constraint induced therapy and he is very supportive of her participating in the UVA program.  We discussed the electrical stimulation technique and he wants us to get a second opinion from a physiatrist.  We had been hoping to avoid this specialist, but we're going to see Dr. Evans at Children's.  A physiatrist is a physical medicine doctor - basically a therapist with a medical degree.  She will be able to better ascertain whether the electrical stimulation could cause Reagan's brain to be more predisposed to having seizures.  We got the first available appointment at the end of May.  I guess because she is in the head of the department she is in high demand.  Given her PT isn't in a hurry to begin the electrical stimulation we will wait for that appointment and see what the doctor says.

We also learned that Reagan will probably not be able to attend the Loudoun County Public School program next year.  She is apparently too high functioning for the special needs classroom - great news right?!  We are very happy she is doing well, but would like to enroll her in the Reverse Inclusion program at the same school.  This program is setup to include both children with special needs [who have an Individual Education Plan (IEP)] and children who are normally developing (anyone can apply who has a child who is 4).  Unfortunately we were told that Reagan can't participate as special needs because it would mean increasing from 3 days to 5 and they can't justify that need.  She can't qualify for normally developing because she has an IEP.  We are very disappointed that she is being told she can't apply like other children because of her handicap and plan to research our options.  I visited with the director of the new Compass School in Ashburn and LOVE the principles and methodologies they are implementing so that may be a good fit for her.

Unrelated to the kids, I finished the bulk of a contract I've been working on for several months.  We completed the build of the Comcast Executive Briefing Center in Naperville, IL and hosted our Grand Opening this week with several hundred people over three days.  I look forward to completing the project and finalizing the processes and support systems necessary to run a successful program.

Cole had a follow up CT scan at Fairfax Hospital today.  We were lucky to avoid anesthesia, but that meant he had to be bundled, taped to the table and forcibly held down by his mom.  It was torturous seeing the look of fear in his eyes, but we are hopeful he was still long enough to get a clear scan.  We will meet with his neurosurgeon and neurologist in the next two weeks to review the results.  We have no reason to be concerned, but it will be good to have reassurance.  We were also able to visit with several of Cole's nurses and doctors while we were there.  Such an great team of people it took to get us to where we are today - we are blessed to be surrounded by so many amazing professionals!!

On another note, we completed the paperwork for Cole to enter the Lo Co system and have an appointment with the county this month for his initial assessment.  I will keep you updated, but we expect that he will be admitted based on his visual disability.

Well that's about it for now!  Spring is around the corner and I hope to have more non-medical updates as we get out of the house a little more!