A Right of Passage.....

Unfortunately Claire had to have some dental work done last week, and was put under anesthesia to have it done!  With all of our "new" issues, the whole thing was a bit unsettling for me....but in true Claire fashion she did much better than I!  Claire came home and instantly had something to do (after the loopiness wore off)....put a tooth under her pillow!  Its the little things that mean so much around here, the absolute happiness of putting a tooth under a pillow; and the absolute joy of waking up and getting "paper with a lion on it", R50, South African money has animals on it!  A right of passage for a little kid....loved every minute!
                                          Claire Bear's tooth, ready for the tooth fairy.......

In other news... 

I escaped for a weekend away with my girlfriends!  I was very leery of leaving Claire, but am trying desperately to resume normalcy!  We went to Knysna, which is about 3 hours away and had a great time shopping, drinking and laughing!   Not sure how I will ever leave this place and these friends...we have such an amazing group of friends!  

The kids are out of school for a week, so we have been enjoying NO schedules and early morning drop offs!  The weather has been beautiful, and we are spending lots of time outside!  There has been a lot of golf playing, cricket playing and even a little basketball(Claire bought a basketball with her tooth fairy money). Taylor entered a Biathlon 2 weeks ago, and did so well he made the EP team!  EP stands for Eastern Province, the area of South Africa that we live in, and he will represent EP this weekend against other athletes around South Africa!  This is a huge deal around here, and we are super excited for him and can not wait to see him compete!  Hunter has been attending a cricket camp this week, and is gearing  up for a week in Cape Town with his school team as they go on tour to play other schools! 

    Hunter obsessed with practicing.....

I love weekends at home, and am a true homebody at heart!  I would much rather have lunch out than dinner any day of the week....much simpler!  Our past weekend was awesome, Friday night my friend and I went to a dear friend's birthday party while Pat took over Claire post tooth extraction duty!  Saturday we all went for lunch, then dessert and coffee at a new favorite bakery!  Saturday night we enjoyed a home cooked meal of shrimp pasta, Pat's garlic bread and dessert made by Hunter and Claire!  Sunday after church we went to one of our favorite outdoor spots and had brunch!  The following pictures are fuzzy, but what a fun night making supper together!  

                                                       We ALL helped make dinner.....

                               Pat cooking the shrimp, Taylor stirring the sauce and hiding from the camera.....

                                          Hunter and Claire making pudding.....

We pack up tomorrow and head north to Bloemfontein for Taylor's biathlon meet! I love road trips!

Finally Sun....

After a VERY rainy winter, we have had some beautiful spring weather here in Port Elizabeth! In fact, this is one of my most favorite things about South Africa....the weather! I love to wake up in the mornings to the warm sunshine, and being able to open all of our windows and let the gorgeous fresh air fill our home! Yesterday we drank in the beautiful weather, after church we came home and the kids spent the majority of the day outside playing! With the warmer weather, brings the need to pull out the cricket gear (similar to the feel of the onset of baseball season)! All three had a go at the cricket bat, we had to soon find Claire another activity as the play was getting a bit rough for her......our new normal we are striving for!
Enjoy these shots of the kiddos in the backyard, not the best but glad I caught that moment in time!

Taylor

Claire, brother's jersey and Matilda Jane leggings.....no hope!

We started our tutoring with a great girl, Hannah, who actually is Claire's first preschool teacher! Here's to the beginning of our LONG learning journey!

 And of course, Spring brings golf! This boy is OBSESSED with the game of golf...he spends as much time as possible at the local golf club!

God has blessed us so much in our lives, and we are taking every moment to eat it up!

Claire Bear

Ever since our special little girl entered the world we have been searching for answers. Answers are not always easy, especially the ones that we have received. 
Recently Claire and I spent a week with an Educational Psychologist and a world renowned Pediatric Neurologist in Cape Town....... life will never be the same! 

I have been extremely worried and nervous about Claire's schooling situation for awhile, not sure where she needed to be and never wanted to stop pushing her to go further! Our school year started in January, and was the first year Claire went without a facilitator (aid) as we felt we needed to try without one. Four months into the year I went into full panic mode, as we felt Claire was not learning anything. The last few months have been a combination of searching and questioning.....we put her on ADD medicine and they seem to be helping. We felt Claire was "floating" through her days not gaining much...hence the need for a good educational analysis! After a week spent with the Psychologist Claire scored in average range for verbal and global knowledge, but incredibly low in auditory processing and sequencing!  Basically, Claire will never survive in a classroom setting without assistance, and will have extreme learning disabilities such as Dyslexia!  She will need to be somewhere where adaptations are allowed, as Claire will struggle with writing.  Believe it or not, all of this was good news as I was desperate to know if there was the possibility that she COULD learn...and she can it will just be extremely difficult!We are slated to head back to the States no later than June of next year, so I am going to be doing a lot of pushing, one on one, and tutoring to compensate for what South Africa can not offer her, but what we can do privately!
The second part of our trip was the visit with the Neurologist!  She said instantly that it was most definitely a genetic disease, and not neurological. She did a thorough examination, along with a full spinal X-ray.  After a week the Neurologist phoned to follow up on Claire.  She has Scoliosis, it is a slight curvature and requires us to follow up in 6 months as they have to watch and see how aggressive the curve is to decide on what to do. The Neurologist discussed her with some of her colleagues, and everything pointed to Marfan Syndrome! There is no test currently in South Africa, and very little testing overseas for Marfan Syndrome. Marfan Syndrome is caused by a defect (mutation) in the gene that tells the body to make fibrillin-1, a protein that is an important part of the connective tissue. More information on Marfan Syndrome can be found at www.marfan.org.  This mutation causes different Marfan features and causes many medical problems. They diagnose clinically by seeing how many symptoms Claire has; some of her physical traits include a long skinny body, long arms and legs, flat feet, scoliosis, and flexible joints.  Unfortunately, the main issues are her heart and eyes!  We visited a Pediatric Cardiologist last week, and he confirmed without a doubt Claire has Marfan Syndrome!  Her Aortic Valve is three times the size of a normal child's, and will eventually need to be replaced.  She was put on Beta Blockers, as this will slow the progression of growth of the heart......the idea is to slow it as much as possible to be able to push surgery back until she is older.  With Dilated Aortic Root, the valve is extra large and the lining is very thin meaning that the possibility of it rupturing is great.  All contact sports, team sports, lifting, wrestling, and rough housing is a danger to her!   Any hit to her chest, could cause the valve to rupture.  Initially when we went into the appointment I told the doctor that we were on Concerta (ADD medicine) and to double check that that was OK to be on.....After the Echo of the heart, he did an EKG.  Unfortunately the findings there were even scarier....she has Prolonged QT Syndrome(not even related to the Marfan Syndrome).  The definition given by Wikipedia is a rare inborn heart condition in which delayed repolarization of the heart beat increases the risk of torsade de pointes, which may lead to palpations, fainting and sudden death due to ventricular fibrillation. Episodes may be provoked by various stimuli!  The Beta Blockers also help in this area to slow her pulse which will help with the intervals, while on meds the risks are reduced.  This syndrome requires that any over exertion of the heart must be stopped, such as running and swimming!!!  Well, if we had a calm princess, life would be easy to contain all of these activities.  Instead we have a little girl that wants to be a Power Ranger when she grows up........
How we go forward.....we continue with all of her therapies, Speech, OT and Physical; she takes heart meds for the rest of her life and no Concentration or ADD meds ever(any stimulants), we get her eyes tested and watch for any new symptoms, we have regular visits with the cardiologist, but most of all We Soldier ON!  Obviously, this is a huge blow for our family!  The boys have been hit hard with this news, as they love their sister dearly!  Hunter promised to quit all of his sports if it would help us get the best medicine for her, he sobbed for two days straight!  It is all very surreal....I never thought that I would need to send a message to the boys schools to keep an eye on them and make sure their home life did not effect their school life.   Initially I could not let her out of my sight, as I was/am scared of what might happen....I can not live that way and Claire is not the type of child to keep in a bubble!  We are now armed with knowledge, and have answers to questions that at times we thought might never come!  We will take everyday one day at a time, revel in the positive and find the strength to make it through the negative!  
I told my friend the other day that if only we could see the world through a child's eyes and not fear for what might happen! Claire lives life to the fullest and could not be happier...her strength gives me strength!
From the mouth of babes....
Claire and I were leaving her school the other day, after getting hit in the head with a block(like we needed anything else to add to our list), and I commented out loud "Claire, what am I going to do with you?" and she says most certainly "Look after me!"  Oh my baby, we will most definitely do that!!!

2011

2011 was a full and memorable year! The kids finished up their school years, and are ready for their new grades and new schools this year! 2011 has brought us many joys, and some tears!
Taylor has graduated from Primary school with academic honors at St. Dominic's, and will be going into high school. He has made us so proud with all of his accomplishments. He enjoyed playing soccer, swimming and being on the track team for school. He excelled on his club soccer team, and really enjoyed his coach and team this year! Taylor received the silver badge award for community service this year. We celebrated Taylor becoming a teenager with a Disco party! Taylor is becoming a very responsible boy, and seems to have a very good head on his shoulders filled with great aspiration!
Hunter finished up his grade 4 year, and will begin a new school for grade 5! He also wowed us this year with his sporting achievements! He played on the school cricket team, hockey team and soccer team! He was the captain of his hockey team, and received the "Most Upcoming Player" award for hockey. He also shined in his club soccer team, and won an award for being "The Most Determined Player"....which is a perfect representation for him! He continues to be a very sweet and sensitive boy, but definitely has come out of his shell these past few years!
Claire is a strong, and lively character that keeps all of us on our toes! She had a great year with Teacher Lisa, who fell in love with her! She had a busy year filled with therapy, extra curriculars and swimming! She had her adenoids removed in October resulting in clearer speech...yeah! She continues to blow us away with her progress, and as soon as we get worried we are not making progress she makes a huge leap!
Both Claire and Hunter where baptized in November, and Hunter will receive his First Communion this coming year!
Pat still loves working here in South Africa, and definitely finds time for new adventures! Along with cycling and mountain biking; Pat took up paddling this year! This coming year will be very busy for him, as his new launce project is in full swing!
My year has been very eventful...I turned 40! My wonderful friends through me a party, my mom and dad came to visit me; and I took an all girls trip to London and Italy! Besides all that partying, I have happily been a Taxi Driver, a Chef(kind of), a Doctor, a Teacher, a Policeman and too many more to mention to our happy household of 5!
Mom and Dad came for a nice long visit in July to help celebrate my birthday and to see the sights of South Africa once more!
Unfortunately, Pat's mom and dad where unable to come and visit as Pat's dad had a major stroke in October. We continue to keep him in our prayers daily!
We finished off our year by traveling to the US! We where able to visit with Pat's dad and mom, and his brother, Brian! Although the trip was hard on all of us, we where so very glad to spend time with Mike! After our visit in Florida, we headed to my mom and dad's!  We welcomed Santa Clause with everyone, and the kids where surrounded by all of their cousins for the time we where there! It was a wonderful way to finish our year....spent with the ones we love!