Sunday, April 24, 2016

The boy the world did not see

Who was this boy?  Did he hold super powers to be invisible?  Did he ever venture out in to the world?  How could this boy be missed by the world?

He was an ordinary nine-year old boy.  He worked hard in school and did quite well.  He had many friends whom he enjoyed playing with often.  His favorite sport was swimming.  He loved to eat hot dogs, macaroni and cheese, broccoli, spinach, pizza, hamburgers and all the other yummy foods most kids enjoy.  He was active in church and looked forward to Sunday School, Wednesday night activities and the extra MIT retreats he could participate in with his Dad.  He loved reading the Percy Jackson and Heroes of Olympus series.  He enjoyed writing a sequel to the last book of a series because he wanted to know just a little more about the story.  He loved his dogs: Charlie and Lucy O'Leary.

The love the boy had for people, especially those with special needs, was incredible.  He saw and understood the purpose God had in creating each of us.  To him, when someone did something a little differently it was beautiful.  He was always selfless, loving and helpful.  In this area his heart was so beautiful and pure.

So, how could this boy who was physically around others every day not be seen by the world?  You see, this boy had three siblings with special needs.  The world saw the three siblings, talked about the three siblings, praised the three siblings, gave goodies to the three siblings, wanted to bring others to see the three siblings, asked questions about the three siblings and prayed for the three siblings.  When out in public, whether the three siblings were present or not, they are the ones who are always the topic of conversation.  Being that the boy was only nine, this was very difficult for him. Why did no one see him, talk about him, praise him, give goodies to him, bring other to see him, ask about him or pray for him?

Hopefully one day he will be the boy the world does see.

Tuesday, April 19, 2016

The mid-April update

Time sure seems to fly by when you are busy.  Since it has been more than a month since my last post, this may be a long one.

Owen:
I know many of you have been praying for Owen these past few months.  First, we weaned him off all his medications.  At first the process was hard and Owen was having a really rough time.  Now that he is off all his medications, he is doing great.  His muscles feel better than when he was on the medicines.  We no longer have to wake him up if he falls asleep early to make sure he gets all his medicine and he does not experience any pain if he is just a few minutes late on a dose.  He seemAs to be happier and more alert too.  He has started a few new word approximations for, "I love you" and "ball".   Owen started seeing a new neurologist last month; Dr Janye Ness. She is fabulous and doing lots of research to find out what is going on with Owen.  He had an MRI and spinal tap done just over a week ago.
 She came to the appointment and gave me the results while I was dressing Owen in recovery.  His MRI looked great.  She said it was hard to believe she was looking at a premature child because his brain looked so good.  She said he is definitely in there and she is going to try her hardest to figure out what is going on that would stop him from talking.  We have the results of one of the two spinal tap tests that were run, and it looks great too.  We go back and see her again in June.  Between now and then she is going to do more research in trying to figure out what may be going on with Owen.  We also have an appointment with a CranioSacral therapist on Friday.  I am excited to see this new type of therapy and am optimistic it will be good for Owen.

On a non-medical front, Owen is enjoying swimming at Lakeshore Foundation, playing baseball with Miracle League and being in kindergarten.  He also loves Wednesday nights and Sunday mornings at church.  This coming week, Owen will be a shark in the kindergarten play. (I will post pictures...hopefully soon after.)  We also purchased some new hiking child carriers, a little bigger than our old ones.  The carriers ship tomorrow.  We are excited to have them and plan to do lots of hiking, berry picking, etc with the boys in their new packs.

Nathan:
Nathan is doing well.  He LOVES Luigi from super mario brothers.  He has a stuffed Luigi that goes everywhere with him, has a Luigi lunch box and a few Luigi shirts.  He texts everyone he knows, "Newer Super Luigi U" from my phone.  (That is his favorite game).  He loves playing the Wii U with Logan, or running around the Luigi world maps (you would need to know how the game is set up for that to make any sense).  He is swimming at Lakeshore Foundation with Owen.  Nathan is working a lot on standing in the water.
 He is also playing baseball with Miracle League and enjoying Kindergarten too.  In the kindergarten play he will be an octopus.

Logan:
Logan and Preston enjoyed a father/son church retreat last weekend.  They went hiking, canoeing, and tons of other outdoor fun.  


Logan is swimming at Lakeshore Foundation too as well as taking some pool diving classes.  He will start Homewood Swim Team at the end of May.  He is doing well in 3rd grade and enjoys all his friends.  His favorite two subjects are History and Bible.  The last few weeks at school have had a lot of fun experiences.  They went on a field trip to The Exceptional Foundation (a day activity center for adults with mental disabilities).  The kids enjoyed playing games and making crafts with some of the people there.
  They had field day last Friday.

  It rained, so the games were set up inside but all the kids still had a lot of fun.  Logan also loved Roman Mega Day.  He has been studying Rome in school this semester and studying Latin all year.  Each child had to wear a tunic or stolla.  I made Logan's tunic myself!




Karis:
Karis is working daily at home with me on her speech.  She has up to about 300 words and we are working really hard on putting two words together.  She is seeing the boys speech therapist and we are really learning a lot from her.  Karis is also working hard in the area of physical therapy.  The boys PT recommended some several home exercises, etc and we try to work on them daily.  I can see her legs and hips starting to get much stronger.  Karis is enjoying second grade and we really like her teacher.  Tomorrow Karis will attend an appointment at the International Adoption Clinic.

Every Sunday when the weather is nice our family heads down to Veteran's Park for some fun.  The kids love playing on the playground and in the big open field.
After the boys baseball games we head over to the playground for some fun!
Logan and I, along with Charlie and Lucy O'Leary enjoyed the Mutt Strutt last Saturday morning.











Thursday, March 10, 2016

Neurology Appointment

It is my privilege to be the Mom of this amazing brew of kids.  Through them we have awesome opportunities to meet so many new people, people I would never meet if my children were all, "typical".

Today, Preston had the privilege of meeting our new neurologist.  I was not able to meet her but I had the privilege of meeting another incredible group of people.  I was a part of the American Academy of Cerebral Palsy and Developmental Medicine Community Council Summit in Chicago, where individual from all of the US, Canada and Australia came together to begin discussions that will ultimately enhance the Cerebral Palsy Community.

...the neurology story
As all of you know, Owen was verbal until the age of 4.  Within one month we watch his verbal abilities rapidly decline.  About two months ago I decided to initiate further dialog with Owen's physiatrist, Dr Law.  We met, he talked with Owen's therapist and he suggesting the weaning off of the meds along with a new neurologist. The medicine wean is going well.  Owen's muscles are doing well without the medications, much better than I had expected.  The first week of the wean was really rough, but now that we are through the withdraw phase, it is much better.

So today Preston took Owen to see Dr Ness, the new neurologist.  He thought she was awesome.  She spent a lot of time with him asking lots of questions and even conference called me in Chicago.  Just like with Dr Law, she thinks there is more to Owen than just a CP diagnosis.  She ran lots of labs today and Owen is scheduled for a brain and spine MRI on April 8 along with an LP.  We are excited that she has taken such an interest in helping Owen, because that was NOT the experience we had with the last neurologist.

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.                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                              

Saturday, January 2, 2016

Finishing 2015

2015 Favorites for the kids:
Books:
Logan- Percy Jackson series
Owen- Pete the Cat
Nathan- Lightening McQueen
Karis- Samuel de Champion 

Food:
Logan- Golden Rule Cheeseburgers and Mr Chen's fried rice
Owen- chicken fingers, fries, pizza
Nathan- anything with sour cream and anything with chocolate (which is good for this little boy who has a hard time gaining weight)
Karis- vanilla milkshakes, peanut butter, cheese and chocolate

Activity:
Logan: swimming, airwalk
Nathan: airwalk, pump it up, iPad and bowling
Owen: sports, especially Georgia Tech sports, airwalk and bowling
Karis: looking at books, playing dolls and in the play kitchen

We had lots of family fun the last week of 2015!

Bowling
Pump it Up
Logan on the big jump.
Nathan and I went down the slide about 30 times.
So glad my parents came.  I could not have done it without them.
Zoo Light Safari
Nathan drive his new chair.
Tennessee Aquarium
Preston and I each took turns going to Star Wars with Logan.  Each time he saw it in IMAX and 3D.  It was awesome!
Santa brought Owen tickets to a Georgia Tech basketball game and a new Georgia Tech outfit.  He was on cloud 9 all day.