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He's left on a jet plane

Regan has left for California to the Army's National Training Center where he will spend the next month preparing for his rotation in Poland this fall. Me and the boys are going to be able to spend some time with my family until we have to come back for more appointments!

Here is where we stand with all our doctors:

We've finally had our ophthalmologist follow up. And just like every thing else seems, we got more bad news. When we were in the NICU, his eyes were checked and they found what could have been a blind spot on the retina of his right eye. At our follow up, they numbed his eyes and dilated them to be able to look around his entire eyes. His left eye appears normal. His right eye did not develop properly. He has something called coloboma of macula, which is essentially a hole in the center of his retina, meaning he will be blind from that side. The doctor likened it to being born without a leg. For a leg, he could have a prosthetic. For his eye, he cannot. He will just have to use his left eye for seeing. Glasses are something he may need if he has poor vision from his left, but there's nothing to be done to help him see in front of him from his right.

He had his EEG. Those results take 2-3 weeks to get back, and we're still waiting on those.

We are continuing to see his infectious disease doctor  for blood work and weight monitoring so we can get the appropriate dosage. He's continuing his valganciclovir, and have increased the dosage as his weight has increased. At our appointment, we were discussing my upcoming trip to Houston. I learned that he lived in Alvin for 15 years and we are familiar with the same areas, which was such a coincidence that he is now our sons infectious disease doctor in Temple. Small world!

He also had all his labs done when we were there so we can make sure his liver and kidney are functioning well and that he's got enough white blood cells. His labs all came back normal, but his white blood cell count is too low again so we will be stopping the medicine for a week, then retesting to see if we can start back up again.

He had a two month check up where he weighed a whopping 9lbs. He got so many shots, but was a champ! His growth charts look great, and he is consistently measuring in the 1st percentile. He's our favorite little guy!

He has another round of infant massage on Friday  where we will go through different exercises for his back, that I will add to his regimen of chest and arms before we will head to Houston.

He was supposed to have another evaluation from the physical therapist to help with his head control and stiff arms and legs, but they have had to reschedule so they will be back soon to get PT started up.

Hopefully we will be receiving those EEG results soon so we are able to get some more information on the most crucial piece to this puzzle: his brain.

Until then...





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