Where do we start?

I've been putting off this blog for a long time but it seems that as the days go by there is always something more to tell and not enough time to tell it all so this first blog will be all background to bring us up to today and I will try to update as much as possible ... so that nobody can say "Well you never told me about that"!  Most of this blog will be about Leighton and his health struggles, so that everyone is caught up and always on the same page ... I will also try to ad in "pieces of our life" to let you all in on things as they happen to us ...

Most all of you know that Leighton was born with Cystic Fibrosis (CF), we deal with this everyday and we will until there is a cure.  He takes medicines and vitamins in the morning and before he eats he has to take enzymes to help him digest the fat and protein in his food.  He does chest physical therapy twice a day and takes one inhaled medication a day.  We go to Atlanta 4 times a year (Mar, Jun, Sept, & Dec) to a special CF clinic to have check-ups and labs done.  So far, so good with his CF.  Just some digestive issues that we have had to get thru and adjust medications to fix.  Keep your fingers crossed and say your prayers that he continues to gain weight and that his lungs continue to stay clear and strong!

At about 4 months old I noticed a white spot in Leighton's left eye ... almost like a reflection in his pupil ... I had the pediatrician check it out, and come to find out ... Leighton had also been born with Persistent Fetal Vasculature (the blood vessels in his eye did not lay flat on the back of his eye ... they connected from the back to the front creating a stalk that his retina had attached to) ... he had to see a specialist in Atlanta @ Emory Eye Clinic ... Dr. Hubbard ... we went to see him and he said that Leighton needed surgery to take the stalk out and he would also have to take the lens out because the stalk had caused a cataract ... so he did the surgery and sent us back to the local pediatric opthamologist here in Savannah (Dr. DeVaro) that we have been seeing ever since just to make sure things still look okay and everything is going the way it is supposed to with his eyes ... Until today everything has been fine ... no real vision in his left eye and it wanders but everything else has been as best as we can expect ... perfect right eye ...

So ... fast forward to a few weeks ago (I'm leaving out a handful of colds and a fight with RSV [Leighton kicked it's butt] and of course bumps, bruises, allergies to insects, etc.) ...

Leighton has always been a toe walker, but at 3 years old I thought he should have outgrown that by now and then his legs started hurting him ... turns out ... pediatrician (Dr. Hendricks) says Leighton has Achilles Tendinitis (basically his Achilles tendons are too short which has caused him to walk on his toes which has caused the muscles in his legs to be too short) ... so we started physical therapy on his legs and feet last week ... once a week for a while ... he will be measured for braces next week (yes, like Forest Gump) and he will have to wear those during the day and he will have special boots to wear at night all to try and stretch his muscles and tendons so that he does not have to have surgery to fix them ...

Which brings me to today ... We went for a regular check up with Dr. DeVaro ... and he was looking harder and calling out extra numbers and letters and words I did not understand to his nurse that was taking notes for him ... I asked "is there something wrong?" ... his response was not very reassuring "well, his right eyes looks great" ... what has started to happen with Leighton's left eye is, his retina is detaching itself from the eye altogether ... he wants us to go see Dr. Hubbard again soon (we will go in September so that we can make that and his CF clinic appointment all in one trip ... just extended) ... then Dr. Hubbard will decide what he wants to do ... possibly another surgery ... what we are trying to avoid now is Leighton losing his left eye completely ... All I can really say is that we need some prayers ... for Leighton ... and at this point for our family's sanity ...

I'm trying to leave as much emotion out of this blog as possible and I hope that I have brought everyone up-to-date with Leighton's health issues ... I will try to blog as much as possible and definitely when things happen (good and bad) ...

On a final note ... Leighton now pees standing up (a big accomplishment that he is SUPER proud of) ... and if anyone has any tips on pooping in the potty ... all are welcome ... we've tried a lot and nothing has worked!

So ... hope you all keep up with us ... and keep us in your thought and prayers ...

Any comments or questions are always welcome!

Love - C