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.

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It has been a busy week!  Reagan had therapy Monday as usual.  She and Ms. Lisa continue to work on fine motor skills and Reagan continues to impress us with her determination and increased dexterity.  She often has therapy with Jacob, who has a sensory disorder.  They make a great team balancing out each other's strengths.

Cole had therapy on Tuesday with Early Intervention.  Ms. Heather was impressed with his verbal development since she last saw him a month ago.  She is still concerned about his limited walking, but thinks it may be attributed to a weak "core" muscle development since he curls his toes and is unstable when he walks.  We have several new exercises to work on this month like baby crunches and other abdominal strengthening techniques.

Cole also had physical therapy on Wednesday with Ms. Jill.  She believes the walking delay is due to him locking his knees.  We tried a special tape to prevent him from locking, but he was extremely agitated and therefore that quickly ended.  We both agree we need to give him time to get used to walking and increase his balance.  She said his hamstrings are weak and therefore has recommended we work on excercises that help strengthen his legs, like stairs.

Cole also met with the opthomologist Thursday.  Dr. Jeffery is very happy with his progress and said this is the best he has looked since he was born!  This was very encouraging news - nice for a change!  She said the patching is defnitely helping so as a reward we get to do it longer!  Hmm...  We were originially going to patch for a year (until November), but she said it's working so well she'd like to continue for another year (June 2012).  The good news is that we are reducing to 4 hours / day instead of 6 hours / day. This allows his eyes to have more time to work together.  Unfortunately, she also said she recommends eye surgery aroung age 3 to alleviate some of the issues from the nystagmus.  Although we can't correct the shaking in his eyes, the surgery can help tighten the muscles so he is able to see a little better.  As with everything else, I try to be thankful there is something we can do and not get caught up with the fact we will have to face surgery again.  But for now we will put that thought on the back burner and wait until next year to worry about it.  We go back to see Dr. Jeffery at the end of August.

At Reagan's 3 year check up she also had her eyes tested.  Unfortunately she had a little trouble reading the third line of the eye chart so they recommended we take her to an opthomologist.  I asked Dr. Jeffries her opinion (without seeing Reagan of course) and she said we definitely should bring her for a visit.  So our trip in August will be a two-fer. Given Reagan's brain trauma (from the surgery) she could be at risk for having some interruption in her visual system.

Well enough about doctor's appointments!  I will close this blog entry with a quick prayer request.  I decided to lock myself in a hotel this weekend to start writing a book about our journey.  Several of you have really encouraged me to take this project seriously.  After writing a thorough outline, I decided I to dedicate some time to writing.  Wish me luck and say a prayer that I can put my thoughts into words.  Thanks to my wonderful husband for supporting this project and watching the kids while I'm locked away.  And special thanks to my nieces and nephew for helping watch the kids.  Love you guys!

Welcome to Bischoff Adventures!  I am blogging on a site not linked to a hospital for the first time in 3 years!  It's invigorating and frightening all in the same.  There is a distinct reality in this transition that we are truly living our "new normal".  We are elated that the drama is behind us, but know all too well that we will be back in the hospital one day...it's just a matter of who, when, why and for how long.  What is bizarre to me, however, is that I have accepted this reality recognizing the importance of having some comfort level with our new normal to prevent feeling like I have been kicked in the gut every time we face a new issue. 

Reagan was seizure free for 2.5 years and just when we thought our journey was behind us, she started having seizures again.  This blog is founded on one premise.  That there is no "cure" for our children's diagnoses.  Reagan will always have Cerebral Palsy.  Cole will always have Hydrocephalus.  And for all parents with special needs children, we must not allow ourselves to get beat down with every set back, but rather embrace the speed bump and focus moving past it so the memory can be in the rear view mirror.  This was a HUGE breakthrough for me in being at peace with our "new normal". 

With the transition from CaringBridge to Bischoff Adventures, We are excited about sharing our story from one journey to the next rather than from one doctor's appointment to the next. Sharing our successes and tribulations, garnering support when we have a tough day and allowing all of us to remember to focus on the blessings in our lives, for as we have learned, we should never take anything for granted.

Did someone say blessings?  We were blessed with a very relaxing trip to Hilton Head, SC.  We enjoyed beautiful weather for the beach, swimming at the pool, feeding the fish, racing boats, watching the dolphins, outlet shopping and a day trip to Savannah, GA.  Hopefully you will enjoy a few of our pictures....