August 11th
On our way to the ultrasound on Wednesday, Peter and I were talking about what specific questions we wanted to ask, and how we were each feeling going into this appointment. We agreed that it seemed quite strange that these advanced ultrasounds have begun to feel quite routine.
We both had only one question, “Doc, can you tell us what to expect?”
Earlier in the week, while the kids were napping I was attempting to finish reading a novel I have been reading for a while, I couldn’t get the name, arthrogryposis out of my head. It was driving me crazy. I figured that the only way to get it out of my head was to google it and find out more about our son’s disease. I was thrilled to find out, as I was reading that we had been perfectly informed. Our doctors had left out not one detail on the condition our son has. This was a comfort to me and only increased our already high confidence in our team of specialists. I also looked at images of children with this disease so we would be visibly prepared for our son’s appearance. Some of the pictures were clearly post-mortem images, others of adults who live everyday with the disease. I am glad that I took the risk and that God protected my heart so that it was a helpful experience, and not a scary one.
The ultrasound revealed to us two changes in Heavy’s condition. First, is one of the valves in his heart has begun to leak. This was expected, only the doctors had expected it would happen much sooner. The other surprise is that our little guy turned around… he is now breach! We go back in on the 30th of August and our doc is going to attempt to flip him manually. Even though we are LESS THAN THILLED that he is breach, it is pretty cool that he is strong enough to flip himself over, he keeps on surprising us with his strength and determination.
As we were discussing with our doctor the changes in Heavy and our question of what we can expect, he said a very sweet thing. His words were, “your son is pretty remarkable, he continues to exceed everyone’s expectations.” He also told us that Heavy’s outward deformities will be mild and that in some cases this disease can be pretty ugly.
We are very proud that our son is a fighter, that he has exceeded expectations the experts have placed on his little life. It seems his personality, even now, fits our family and that is not only encouraging to us but is also a testimony to the prayers lifted on his behalf.
Please continue to lift our family in your prayers, especially in these ways:
*We are beginning to feel anxious about the up coming birth. Heavy’s arrival seemed to be such a long way off, and now we are approaching the 6 week mark! It is a bit messy in our heads to prepare for the pure excitement of a birth and the courage to let the Lord scoop him up from our arms.
*Emotionally, physically, and spiritually we feel like we are in the eye of the hurricane. The huge storm has rolled through once catching us off guard and knocking us over. We have cleaned up that mess, rearranged the items that were blown around, and prepared for the backside of the storm as best we can. Now we wait. We feel at peace, and full of thanks for this time of waiting, we are cautious not to wish it away and with it Heavy’s life.
*We are so thankful for the random emails and cards from friends, family and total strangers. Through them we have been uplifted. Thank you also for sharing our story with those you know, it brings us more comfort than we can express with words to know that however short Heavy’s life on Earth may be, his “story” will have a lasting impact on our family and those who have chosen to walk this journey with us.
*Heavy is once again in the breech position as we mentioned earlier in the update. Our doctors think they can flip him to a head down position. This will happen during the week of August 30th sometime if necessary. Please pray that he summons the strength and coordination to do it once more and only once on his own.
*Join us in praying that Heavy would be strong, strong enough to be born alive, strong enough to live to meet and be held by his family.
*Please continue to pray as the spirit leads you and for others that we have mentioned in previous updates.
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