When things are happening that are completely out or you're control...
This is Leeland, he is 6 months,
he is a happy baby
he loves to be around his brothers is
he loves to be with Dad
he loves to jump in his jumperoo
he enjoys car rides
Leeland is hitting all those baby milestones, he has grown so well. hes actually in the 95th % for his age. So all this to say He is a healthy growing normal baby, as far as we could see.
Current Situation:
Leeland was born with quite a few birthmarks,at birth he had at least 6 light colored birthmarks in various places on his body. at the time we didn't really think to much of it,it didn't really appear to harm him. hes 2 months now and has over a dozen small lightly colored birthmarks covering his body.and freckling under his arms and other areas on his body. at his 2 month check up his pediatrician suggested we get him into a dermatologist but other then that he still appears to be healthy and growing right on track. when he was about 3 months we noticed his right eye would not be in line, basically his eye would wonder from whatever object he looked at. it was pretty noticeable and when he was tired you could definitely tell. At his 4 month check up, i brought it up with his Pedi. he suggested we get him in to see an Ophthalmologist, they would be able to figure out if he will need an eye patch or glasses to get his eye on track. Meanwhile Leeland saw the Dermatologist a few days after his well child check. he checked out Leelands birthmark and asked some questions about Family history (illnesses, disorders ect)
He Diagnosed Leeland with Nuerofibromatosis (AF1) its a neurological disorder there is a lot that goes into that.but it explains all of the birthmarks and freckling. the next step was to check his eyes. with NF1 it forms colored bumps on the iris of the eyes. SO he had his eye appointment, to figure out the next step to getting his eyes on track. and also to check the iris of each eye for those bumps. After a whole hour of fighting and fussing for a 6 month old, who is btw super strong. finally got his eyes dilated enough. He didnt see any colored bumps on the iris. so that was exciting to hear but he made it very clear that those can form at any age. moving on, his eyes are deff not straight and sometimes in this situation the eyes can 'by some miracle" straighten but he made it very clear agian that he does not think leelands eyes will get better .So he is wanting to do eye surgery in 3 months. until then Leeland has his regular well child check. so we will be touching base with his Pedi on all of this.hopefully we can set up some scans of leelands brain just to make sure there isn't a tumor growing on the nerves,maybe a reason why his eyes are being so off track. and we have set an appointment with a Geneticist to do a variation of test. SO here we are, trying to figure it all out. So if you remember to please keep Leeland in your prayers. He/we deff need it!
. i attached a link so you an read up on NF1.
What is Neurofibromatosis Type 1 (NF1)? | Johns Hopkins Comprehensive Neurofibromatosis (NF) Center: NF1 is an inherited neurological disorder that affects about 1 in every 3,000 people.
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