Dear Friends,
May 8th we had the pleasure of seeing our son during our 19 week ultrasound. These are special times for us and we look forward to each one. Not only do we cherish our “family time”, but we learn new things about our little boy with each visit. This time we learned that Amalya is swallowing fluid, which is great news. Many babies with his condition do not develop the swallow reflex. We also learned that his mouth is developing typically and he has no cleft palate, a complication that can occur along with the Acrania. Although this next one may sound weird, we were very thrilled to learn that Amalya has ears!!! They are a little smaller than they should be, but he has them! Again, due to this condition some babies do not develop ears. We also learned that his major organs are developing like they should, which is wonderful. His condition remains very prominent. We had several views of his skull confirming that he is missing everything from above the eye sockets to somewhere around the base of the skull. We have yet to been able to determine how much brain matter is present, although it is looking like very, very little has formed. He was extremely active again today, moving all about during the ultrasound, which was so much fun to see! We were also given his weight for the first time, and he is a whopping 10oz! We will have another ultrasound in a month.
Since we wrote last we have continued to make memories with Amalya Nathaniel. We continue to read to him very frequently and play him music. We have discovered that he has very specific taste in food! For example, he enjoys sour candy (just like his dad, very unlike his mom), pineapple, and his dad’s hamburgers. Surprisingly he does not like ice cream, which makes his momma very sad! We have had the opportunity to take him to several places including Eastwood Metro Park, Stubbs Park, and the Second Street Market. He also enjoyed his first bonfire, watched old time cartoons, and was introduced to garage sales! He currently has 2 “favorite” toys, a teddy bear which plays music, and a see-and-say! We are also blessed to be feeling his movement already (Bethany feels it daily; Eric has felt it a few times as well).
We are continuing to look for ways in which Amalya can serve the medical community. We were thrilled to find out a week ago that we will be able to donate a blood and tissue sample to an organization which will store his DNA for future research studies. This will allow him to help the science community even after he is gone. This is separate from the Duke Study which is specifically looking for genetic links to his condition. We have a few other research based possibilities in the works which we hope to finalize in the next month or so.
In closing, we would once again like to thank everyone for the thoughts and prayers. We are grateful to have so many people supporting us and taking part in our journey. We feel so blessed by our Amalya Nathaniel and pray that he is a blessing to others. We encourage you to remember how precious life is, and take time to make special memories with the ones you love.
With Joy,
Eric, Bethany, and Amalya Nathaniel
May this journey bring a blessing,
May I rise on wings of faith;
And at the end of my heart’s testing,
With Your likeness let me wake.
Let the treasures of the trial
Form within me as I go –
And at the end of this long passage,
Let me leave them at Your throne.
Jesus, Draw Me Ever Nearer – Keith and Kristyn Getty