Saturday, January 10, 2015

A New Year's Post and Update

Dear Friends,

2015.  Wow.  Two months ago we doubted that we would even have Asher with us for Thanksgiving, and now we are rejoicing that we could celebrate Christmas and the New Year with him too.  As we stare down the foggy road ahead, all we know is that our feet are grounded and a path has been laid before us.  Many of you are the sign posts giving us hope and encouraging us as we travel, slowly.

The Advent and Christmas season was a blessing to all of us.  We made special efforts to bring Asher with us to our church's "Lessons in Carols" and Christmas Eve services.  Both were a rich encouragement to us and so many were happy to see this little boy who they have been praying for.  Holding Asher (by the wall with his oxygen tank, away from all the little flaming candles!) we sang "Hark the Herald Angels Sing" and the third verse had never sounded more hopeful: 

Hail the heav'n-born Prince of Peace!
Hail the Sun of Righteousness!
Light and life to all he brings
Ris'n with healing in His wings
Mild He lays His glory by
Born that man no more may die
Born to raise the sons of earth
Born to give them second birth
Hark! The herald angels sing,
"Glory to the newborn King!"

I found myself unable to sing, and instead weeping as I considered the beauty of these words.

The week of Christmas we had a fun visit from my sister and nieces and then went to Arlington the day after Christmas to be with Michael's family.  It was so good to be with cousins and the rest of the family there.  Like Thanksgiving, it was stressful to travel, but completely worth it for the memories and the traditions.

Ice Skating with the cousins on Christmas Eve
















How is Asher?
Asher gets time with Aunt Cindy
Honestly, he's doing as well as he possibly can be.  He will be five months old this monday and weighs about 10 1/2 pounds.  That's 50% more than he weighed when we left the hospital! His recent clinic visits have been helpful as they continue to monitor his status, adjusting medications as needed to keep up with his weight gain.  His last visits were with his cardiologist, a speech therapist, and two friends here who are a developmental pediatrician and nutritionist.  We also have a speech therapist and occupational therapist who are coming to the house regularly.  You might wonder why he needs a speech therapist.  Asher hasn't taken any food orally since the beginning of November and he's essentially lost his reflex to suck.  A speech therapist will help us with regaining and building his oral skills.  Since his visit last week, he has already shown improvement as we practice with him at home now.  Yesterday, while his speech therapist was with us at home, he smiled SEVEN times!  It was such a gift, since he does that so rarely. All milestones will be reached late, but we celebrate every one. Lately he has been reaching out to grab things with his hands, and he always loves music.  Next week we will see a pediatric ophthalmologist to see if he has any insight into his vision needs.  His lovely nurse still visits us twice a week or so. Lots of doctors, lots of appointments, but we never thought we'd get to this point, so we're thankful. He is one tough kid.

We are currently seeking out a better, longer-term system for Asher's caregivers and are beginning a search for the right team of folks who will be with us at home so that we can continue with our normal jobs and family life.  He qualifies for the Virginia Medicaid waiver for the disabled, so we are able to actually hire these helpers.  Please pray for this process, as it feels pretty daunting right now. After four months of receiving amazing meals from you all, we're back to cooking, something we really enjoy when we have the time. 

This is still a few months away, but eventually if he keeps growing, we will talk about taking another CT scan of his lungs, and discuss possibilities for future procedures.   For now, we'll keep taking it a day at a time, trying to find a new rhythm in this new year.

Your prayers are still appreciated and deeply felt. God is good. Pray for rest, which is pretty hard to come by, and for patience with each other and the boys. Pray for Asher to grow and be able to take food by mouth again. 

Thanks for reading this long update, and we pray that your 2015 is full of grace and peace. 

With much love,

Laura and Michael

Asher's First Christmas Party

 



"Quick, Maggie!  Pull the tubes while their not looking!"