It was a week of seeing our specialists, and our hope was that we would be released from one or both. I think these specialists will be with us for the next few years at least. I will be honest, and say I am overwhelmed, and a little sad by this today!
On Monday we saw Dr.
Cholmers ( pediatric
endocrinologist) and although she thought Wyatt was continuing in a good direction he still was not where he needed to be. He weighed in at exactly 21 lbs, I think they could see the disappointment in my face, I explained that I found the holiday 6, why could Wyatt not do better than a few ounces. Remember he was 20.8 lbs on November 12
th. In fact we are having a surgical procedure next month( I will discuss this procedure in a future blog) but Dr. Chalmers has written a note for the sedation doctor, and explained that she wants
Solu Cortef added prior to his surgery because although he has a normal AM cortisol level, she is unsure of his stress reserve of this. Dr. Chalmers is so nice, and patient and makes me feel like any question is a good question!
Today we traveled to Oklahoma City to see our pediatric
neuro opthomologist, and was reminded of the reality with Wyatt and his vision. We have continued to patch daily with a success of about 95%, but our glasses have been a different story. It was obvious today because Wyatt did not want to leave them on for the exam. If you remember back we started out with some pretty bleak news concerning Wyatt's vision. I think because of this and because the
OKC Doctor diagnosed us differently we were encouraged, and maybe let our guard down to much! In June when we saw Dr. Mike in
OKC Wyatt's left eye was not tracking within range so that is when glasses were prescribed, the patching increased to 2 hours, and we were scheduled to see him in September. At the September appointment things looked so good and Wyatt's eye was tracking within normal range that he said keep doing what you are doing with the glasses ( which thinking back Emily did a great job of getting daily wear time in between June and August), and he decreased our patch to 1 hour a day. Now, fast forward 3 months to January and what we learned today is that his left eye has fallen back out of range. I was concerned that it might work like a growth chart and the range move with age, and sure enough today that was confirmed. So over the course of the next couple of years this might continue to happen! So today we were told back to 2 hours a day on patching, and we need to get at least 4 hours a day in with the glasses. I also asked very specifically about WHAT condition(s) we are dealing with? You would have thought I would have already asked this, and I have lots of different times, lots of different ways, but when I get to the car or home to research it, I had already forgotten specifics. So today I captured the words so I could understand what we are dealing with. Dr. Mike said Wyatt has 3 things going on with his vision. Optic Nerve is small, nothing we can do about this, happened while in womb. Other conditions are
Amblyopia ( lazy eye), and
Exotropia( eye crossing) and as a layperson when we look at Wyatt we think things look good, and they do compared to this time last year! But, the concern is if we do not get this corrected then we will have bigger problems as a result. Both are correctable conditions, but it will require wearing both the glasses and the patch. The patch corrects the
Amblyopia, and the glasses correct the
Exotropia! We have a 50/50 chance of outgrowing glasses at some point in childhood.
Whew....... Now that you have more medical information than you ever wanted to know about a
child's eyes, believe me I have realized in recent days that my medical vocabulary has expanded more than I ever dreamed. Let me see if you can understand that each time I learn of a new condition, or diagnosis that we have I RESEARCH until I have made myself CRAZY! I have stopped doing this because I believe in our Doctors. I am a prepared mother, and I do not want to live with my head in the sand, but I have come to realize that one can be
over prepared. I have shared this message several times in recent months with a couple of girlfriends about their lives( you know who you are), the message is if you believe in your Doctors, and have faith in the plan God has for your life than there is no need to worry. We need to leave the worry to the "Big Man"!
I know God has Wyatt's plan, and has since before he was born. This is all part of his master plan, and I want to continue to honor him, and believe that the plan will be revealed all in due time. My prayer for Wyatt is that his vision is healed, and that he will continue to adjust and do well with his sight. Vision is very complicated, and linked to our brain and receptors in so many different ways! Will you please add Wyatt to your prayer list, and pray specifically for Wyatt's vision to be healed, and that in the future it will not be
necessary to patch( we are on our 9 month of patching), and if glasses were not needed that would be okay too. Could you also pray for his momma, and that I will continue to have peace with all the medical information that continues to be shared with me( why is it that at all of these big appointments I seem to be there alone?)
Lots of information being shared today, and I am on overload so I am off to watch some mindless TV!
