update before the news

Since I last posted, we've been having a lot of developmental testing done. Keagan is delayed, although not severely, and only in the aspect of his ability to communicate. His cognitive skills are on track, so he can understand everything, and continues to learn things at a rapid clip. However, his speech continues to decline, and it is a struggle for even me to understand him a lot of the time. He will begin speech, physical, and occupational therapy within the next month, and will begin a transition to preschool, starting class after his 3rd birthday.

Some members of his care team have expressed concern that he may soon lose the ability to swallow food and saliva on his own. He is showing some of the warning signs, but not on a regular or severe basis. If that were to actually happen, I assume that there would be a feeding tube involved, however we are just watching and waiting for now.

Tomorrow, we head to Duke University Hospital for his cardiac MRI process to begin. He will undergo a pre-sedation physical tomorrow afternoon, and then the sedated MRI on Wednesday morning. The cardiologist we've been seeing here says that the radiologist should give us some feedback about his results after the procedure, but I guess we will see. A week or two after the procedure, we have been told we can expect a date to be set for surgery.

Keagan's neurology appointment has been moved up to March 31, and we are so thankful! He will have (sedated) MRIs of his head and spine done the day before, and his neuro is opening the clinic early just for Keagan to be seen (the power of prayer at it's finest). His bad days are increasing in frequency, although since we've gotten two puppies, they seem to be a little less severe. I'm no expert, but I feel that his MRI results will show an even further progression.  Side story: When I went to schedule his neuro MRIs, I spoke to the head of radiology at Cape Fear Valley Hospital, who said that he remembered K's last MRI, because he was called in to consult on the results. It turns out that we were not told that Keagan appears to be missing the mylar sheaths in his frontal lobe, leaving his brain tissue and nerves exposed-- but we will know more after the MRI, because it may have just been a fluke or lack of development due to his young age.

So, I think that catches us up before we go in to the cardiologist. I'll update more as I know it. Thank you always for all of your prayers and support.