Hi, I am Wesley's mom.
My name is Rena and this is a little of Wesley's Big Adventure.
This past month has been a complete blur and I am still processing. I'll give a summary until I have time to write a more in-depth post. In the past month, April, we were at Children's Hospital once a week for 4 weeks. In the past month, Wesley has had an MRI, full skeletal survey (x-ray), two different blood draws, urine analysis, ultrasound, and sedated hearing test called an ABR.
We have a suggested diagnoses of Mucopolysacchiridosis. Or MPS. For those of you who don't know what it is, I will sum it up: It is a metabolic disorder where certain enzymes keep collecting in the bones and soft tissues like the heart, kidneys, and lungs. Wesley's full skeletal survey showed that some of his bones are larger and wider than they should be according to the other bones in his body.
Right now we are waiting on blood work to come back from the lab in Atlanta to see which of the 7 subtypes of Mucopolysacchiridosis Wesley has. Right now our treatment options, until we know what kind he has, is weekly enzyme replacement therapy or a bone marrow transplant. Though we still have to wait because those two options only work on a few of the types of MPS.
We've also known for awhile that Wesley has hearing loss. That was the reason for his second ear tube surgery, to see if it would improve his hearing. He did not test well in the booth and because of that they sent to Children's Hospital for a sedated hearing test. During this test they also molded his ears for hearing aids that he'll get in the next few months or so. He has moderate hearing loss. He can't hear the wind or the water running in the faucet. Sigh. It's a lot of processing. I just keep on hoping they made a mistake, but we will see. It's been almost two weeks since they sent the blood out.
I call this page Wesley's Warriors, one, because Wesley is the toughest little boy I know and has warrior's heart. Two, because I hope we can all come together as Prayer Warriors and pray for my little boy.
Thank You.
P.s. Feel free to read more about MPS: http://en.wikipedia.org/wiki/Mucopolysaccharidosis
Prayer is our anchor in life and we will continue to hold Wesley in prayer before our Lord as well as his mom and dad!
ReplyDeleteMy Darling Niece, I know your stressed but always remember the God never gives us stuff that we can't handle. Life is about trials and tribulations and this is only one hurdle you need to climb. You have both East and Western Medicine going on which is the best, and know matter what the outcome is Your Wesley will always be PERFECT. I Love you and I hope you know that my Prayers are always sent your way.
ReplyDelete