Sunday, February 28, 2016

Update

Ranae and I enjoyed running the Mercedes 1/2 Marathon together and Logan enjoyed all the festivities from the race expo.
As always, it was literally below freezing 23 degrees...so I needed to bundle up.
Logan's assigned book report was on George Washington Carver.  After he finishes the book we took a trip to Tuskeege to the George Washington Carver Museum.  He was a fascinating and incredible man.  I am so glad we spent the day learning even more about him.
On afternoons when it is nice outside, which equals about 60+ degrees we have "recess" in the backyard after school on days we aren't swimming or at therapy.  Karis had some static hair after jumping on the trampoline during "recess".
This girl loves her peanut butter sandwiches.  She needed an extra one as soon as we got home from school the other day.
Nathan love Luigi from Super Mario Bros.  I bought him a new lunch box with Luigi on it and he holds it all the way home from school pointing to Luigi.  This morning during breakfast he was using my phone and independently went to the safari app and typed Luigi in the search area.  It had only a few pictures of the Super Mario Bros Luigi so he typed "more Luigi" and got more pictures of the Super Mario Luigi.  He was happy!Nathan also loves to slide.  He cannot pass a slide without going on it.  This afternoon we went to the park Preston spent the at least one hour with him on the slide.  He also loves riding in the car.  He laughs and is excited the entire ride.  It is so fun to ride with him and hear his excited expressions.


Two weeks ago Owen had an appointment with his physiatrist, CP doctor.  I wanted to meet with him regarding Owen's loss of communication ability two years ago.  We had done a few test but not any in depth exploration of what may have caused or may continue to cause his lack of speaking.  CP is not a progressive disease, since it is from a traumatic birth, so it is a mystery as to why Owen does not talk anymore.  Preston and I got up early every morning for about 1 month to pray for this appointment.  We asked God to show the doctor the right path for Owen.  If Owen does not gain his communication skills back Preston and I are totally fine with it.  We love Owen just like he is and he brings such richness and love to our family.  But, we owe it to him to explore all we can to help him.  His doctor recommended we see a different neurologist than the one we had previously seen because he felt we would get more attention from the new doctor.  We are waiting for an appointment now.  Please pray we can get an appointment soon.  Owen's physiatrist also decided to take Owen off all his current medicine.  He was on three different medications, two of which are muscle relaxers.  He was getting an adult dose of one of them and was getting a muscle relaxer every couple of hours.  Owen has extremely high muscle tone and has always been stiff.  Missing a dose of a muscle relaxer was usually bad because he would curl up in a hard ball and cry.  Taking him off the medications seemed a little scary and exciting at the same time.  Owen has seen this doctor his entire life and I trust him.  Plus, I knew God was guiding him since we had prayed for this appointment for so long.  As we began the weaning process Owen was having a difficult time.  I spent three nights in his room massaging his entire body every time he woke up crying, which was six times per night.  But then Owen started getting better.  He only woke up two times a night, then one time for a couple of nights and last night he slept through the night!  He still has some moments of extreme tightness, but he always has.  This morning Preston brought Owen in to our bed as we prayed together.  I massaged his body and he completely stretch out flat...this never happens.  He was feeling so good.  When I massaged his feet I noticed something.  For Owen's entire life, when I massaged his feet it felt like bubble wrap.  There was constant popping all through the muscles in the bottom of his feet.  This morning they were completely smooth!  We still have 5 more days until Owen is completely weaned off his first medicine, but it is the toughest one to wean, which is why it went first.  I am really pleased with how he is doing.  We appreciate that so many people have been praying for him over the past week.  I believe he is doing so well because of those prayers.

Now for an update on Preston and I.  We are doing well...just busy with kids and work (for Preston).  We have a lot of travel planned in the next few months, which we are excited about.  In a few weeks I am traveling to Chicago.  I was asked to participate in a community counsel for the American Academy of Cerebral Palsy and Developmental Medicine.  I have 1 1/2 days of meetings and then I am going to meet a cousin there and spend the day just having fun in Chicago together.  I am really excited!!!  Preston will spend a day in Houston for work the next week, but unfortunately he will not have any fun time.   Then for spring break Preston and I are taking Logan to China.  We are so excited to go back and visit our friends and area we used to live.  We are also excited to have some one on one time with Logan.  Logan having three special needs siblings takes a toll on him.  He is always so helpful and loving, as well as understanding knowing they need more of our time for feeding, dressing, etc.  We like to take him on a special trip just by himself for spring break every other year.  He is really excited!!  Preston was then asked to speak at a national conference out in San Francisco at the end of May.  This is right around the time of our 15th anniversary.  We are both going to head out there 4 to 5 days early to have a wonderful getaway...just the two of us.  Then, at the beginning of June we will head to Calcutta, India for a month.






Sunday, February 7, 2016

Update on everyone

We are doing well.  Just spending our time experiencing life.

Since I have gotten so bad on updating the blog, I will let you know what is going on with each of us.

Preston: spent 10 days in Kolkata, India in the month of January with six of his students from Samford.  They spent fall semester researching India.  Their senior thesis project is designing a medical clinic in Kolkata.  They went over winter break to document the site and be ready to design.  They also had the opportunity to meet lots of people and enjoy the culture.  They will go back, including our entire family, this summer.

Me: I am teaching a class at UAB to OT students regarding the transition between early intervention and the school system.  I always love speaking about our family's experiences, our boys and all the awesome things God does through them.  I was also asked to participate in the American Academy of Cerebral Palsy and Developmental Medicine Community Summit in Chicago this March.  I am looking forward to participating in such a wonderful opportunity. Ranae, my sister, and I are running the Mercedes Half Marathon this Sunday.  It will be lots of fun!  Philip, Cooper, Preston and Logan will go to several points along the race course to cheer us on.

Logan: is a new Daddy.  We adopted another dog, Lucy O'Leary.  She is also a King Charles Cavalier, just like our other dog, Charlie.  She is three years old and full of energy.  Logan is doing a great job taking care of her.  Logan continues working hard on his swimming, taking class twice a week.  He is not doing any swim meets during the school year, but will start again this summer.  He is enjoying reading the Heroes of Olympus series.  He is also reading a book on George Washington Carver for his book report.  The kids are off school for President's Day, so we are planning to travel to the George Washington Carver Museum at Tuskegee University.  Fortunately for us, it is less than a two hour trip!

Nathan: is doing very well in school.  He really enjoys his friends and learning.  He got an award on Friday for working so hard in speech therapy.  He is getting physically stronger.  He loves to crawl everywhere.  He can also side sit and W sit on his own.  His legs are getting stronger and he can stand for longer periods of time.  He will begin playing baseball every Saturday beginning in March, along with Owen, so plan to be there!  The games are so much fun.

Owen: is always so happy.  Actually both boys are.  It is so obvious God's pure love is in their lives.  Owen loves school too.  He really enjoys water therapy and you can just see the joy on his face as his muscles relax in the warm water of the therapy pool.  We took Owen to a Georgia Tech basketball game at the beginning of January.  He absolutely loved it.  He is such a sports fan.   Owen has an important upcoming doctor appointment.  Until two years ago, Owen's verbal communication was age appropriate.  He would sing his alphabet, knew his letters, numbers, colors, animals, animal noises, etc.  Two years ago he almost completely lost his verbal communication...something that is NOT common for kids with CP.  He went through a time where he was very depressed by the loss, but emerged a happy boy after a couple of months.  He had a CT scan, 24 hour EEG and no one could find anything different with his brain.  His body continues to get tighter as he gets bigger.  Preston and I are praying every morning for this appointment, that God would show us a breakthrough as to the mystery of Owen's communication loss and bring it back.  I have already begun the conversation with his physiatrist, who we will meet with formally on the 18th.  Please pray God would show him the right treatment direction for Owen. He is on some medication that does not seem to be helping much and another we hope we can up the dose, though he is already on a large amount.  I am also working on eliminating different foods in his diet, to see if that will help with his overall muscle tightness.  Since their is no evidence of any changes in his brain, it could be that his muscles are so tight in his throat area that he is just not able to talk.  If we could get them to relax, he may be able to regain his communication abilities.  Please pray with us.  I will be sure to put an update on here after the appointment.

Karis: has about 100 words!  Yes, we are so excited.  This little girl did not speak for the first nine years of her life and is now really flourishing.  She is doing well in school and enjoys it.  She is also taking a learn to swim class, while the other three are in their swimming/water therapy classes.  Last week she had a 30 minute EEG.  Since she has agenesis of the corpus callosum, her doctor wanted to rule out seizures.  She does not have seizures, but did have an interesting EEG.  Her brain activity would go "crazy" when they would shine a bright light on her or when she closed her eyes.  The neurologist is not concerned, so we will just see him once a year to be sure nothing changes.  The doctor spent some time showing me the images from her MRI, that was done this past fall.  I enjoyed hearing the explanations and seeing the images as he walked through everything with me.

Today we enjoyed celebrating Preston's Grandmother's 95 birthday.  We love Granny Dot so much and she is doing so well.  She is an incredible blessing to our family.  We also spent a lot of yesterday with Preston's Aunt Brenda and cousin Michele.  It was such a great, relaxing weekend being with family.  The kids also spent the night with my parents on Friday.  They all camped out in the living room and had tons of fun.  Preston and I went on a date to Hot and Hot Fish Club that night.  It was nice to just enjoy adult conversation.