Dear Friends and Family,
We realize it has been too long since our last update. Indeed, we have been very busy with moving into our new home, settling in, and enjoying the new summer schedule with everyone at home.
The new house has been a tremendous blessing - allowing everyone a little more space. We did a lot of construction on the front end, our families and friends all helped to turn it into a beautiful home. There will always be projects, but most of the big ones are done and we feel so welcomed into our new neighborhood. Asher in particular likes the back deck, where he can look out into the woods and hear the birds!
Through it all, our little champ has been growing well (now 14 lbs 13 oz!) and he has had very few of his hypoxic spells (when he goes blue and unresponsive for a brief period of time - terrifying). While those will always remain a concern, we're grateful that they are more rare now. He is sitting up, babbling a ton, smiling occasionally, taking oral feedings of cow's milk, yogurt, and water, and using a sippy cup! At his most recent speech therapist appointment, he did so well that he will now start getting part of his nutritional feeding orally, and reduce the amount through his NG tube. These are all sweet answers to prayer.
His last clinic visit in May was generally good, but his cardiologist is leading us to ask when and if we might want to explore Asher's need for heart surgery. The first step in determining whether or not he can handle surgery will be repeating the CT scan of his heart and lungs to see if his lungs have grown at all since the last one he had in October - the one that revealed the underdevelopment of lung tissue. If they have grown, that is very good, although not necessarily a direct indication of his ability to withstand sedation (being intubated). If he is intubated (for any number of needed surgeries - heart catheterization, eye alignment, repair of the holes in his heart), there is a high chance that his lungs would not be strong enough to take over again after being extubated. So while he is doing extremely well, better than anyone expected, this has reminded us that there could be some very difficult decisions in the future.
At this point, we are prepared to schedule the CT scan, perhaps in August once he is a year old. (!) Beyond that, we covet your prayers. There may be some sense of urgency, as some children with heart disorders require surgery before two years of age. Over time, the high pressures in the vessels cause damage. With Asher, we don't know what that window is. We have an appointment on Friday, where we will discuss a lot of these concerns, and maybe leave with a better timeline.
Here are some ways you can pray:
Praises:
- For all the ways he has grown and developed! We are eager to celebrate his first birthday on August 12th!
- For all the support that we are receiving at home - Physical Therapy, Occupational Therapy, Speech (Oral) Therapy, and personal helpers 4 days a week for 6 hours a day!
- For his new portable oxygen concentrator that allows us the ability to travel longer distances in the car without needing all those tanks.
- For his new leg/foot braces that he wears for 6 hrs a day - they prevent his from developing muscle contractures in his feet and will give him the best chance at walking one day
- That all of these supports are covered by insurance!
Please Pray:
- For stamina in parenting and finding time to rejuvenate both personally and as a couple.
- For opportunities to make memories as a family this summer - it's really hard not being able to travel as we usually like to do, but it also means that Asher is still with us - and in that we rejoice. We are spending one week away at a family camp (Shrinemont) with Michael's family, where we are renting a home that is handicap accessible. Please pray that this vacation will be as restorative as it can be and that he will remain stable throughout our time there.
- For wisdom and peace - as these big decisions in his care loom.
Also, just before we moved, a new friend gave us the gift of creating a short video to give folks a better picture of who Asher is and what his special needs are. He is starting a non-profit called Help Healing Productions that is designed to create videos at no cost to the families, telling each child's story and bringing awareness and support for the child's and family's needs. Asher's is linked below, and it is beautiful. At the end, there is a link to the gofundme account that was created by a dear friend of ours back in October. We want to be entirely forthright in saying that Asher's current financial needs have been met, much of it covered by our primary insurance or Medicaid, and so much generously given by many of you. Any funds raised at this point are being put aside for future potential needs (equipment not covered by insurance, etc.) Again, thank you for your great kindness to us. So much love has been poured out.
Here is the link:
"For you, O God, have tested us;
you have tried us as silver is tried;
you have brought us into the net;
you have laid a crushing burden on our backs;
you let men ride over our heads;
we went through fire and through water;
yet you have brought us out to a place of abundance."
Psalm 66:10-12
We are seeing God's abundance as He provides daily for our needs, and our daily needs are all we can handle. When people ask us how we are doing, we often answer "one day at a time." We try not to worry about the future (though I do, even as I write this), because it might very well crush us. We will never understand why this has all happened in our family, but we can trust that through it all God is good. While it may not make sense, we see His goodness more clearly because of Asher.
With love and gratitude,
Michael, Laura, Noah, Ethan, and Asher
