Swallow Study Report was, well, Tough to Swallow

More exciting strides today! A swallow study in one hour to learn more about if, how and why she might aspirate when swallowing. She is cooperating to the fullest by taking a long early nap, so she can be as helpful as possible when being asked to ingest her treat of radioactive pudding and mutant juice. I'm told she's on her last bag of TPN (intravenous nutrition), meaning formula is finally starting today! Slow continuous feeds planned at first, and going from there. We will see how much her reflux is an issue now that her throat is wide open, but we have not yet discussed any surgical options with the team. Our first (of three weekly) dilation is next Thursday or Fri. I think we might be checking out of the hospital after dilation #1 around next Saturday. Getting very ancy to see my kids and husband when they fly out for a visit.... 5 weeks to go!

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Annnnnnd, the other shoe.

Swallow study results from today: Baby Audrey aspirates a little of every bit of liquid she swallows, she struggles a little with pudding consistency foods but seems to sort it out, but on chewable soft solids she got the gold star, no problems. When she drinks liquid, it travels too far down the back of her throat, and she doesn't coordinate her muscles in such a way to prevent it slipping down

into the airways, and has to eventually cough it back out, which sometimes takes several minutes. A Speech Language Pathologist would be better able to explain what is happening, but my guess is it might be a side effect of having a lot of work done in the back of her mouth, tubes down her throat etc, which have desensitized the gag reflex (which is in some ways a blessing in her case, I can only imagine what it would be like having all she's had done in there, my gag reflex is really strong and it would have been torture-- I can barely even get a strep test! She's such a champ.) Anyway, they think that practice will improve her coordination for liquids, but in the meantime she has been given a prescription for thickened liquids by mouth (the consistency of honey) and soft solids. The funny part of it is, that up until today she had been approved for nothing BUT clear liquids, and now she is allowed to have almost anything except them, a complete reversal. But the test went really well-- she ate her radioactive pudding and drank her mutant juice without much complaint, and especially liked the little Gerber dissolving cereal stars (which were well dipped in radioactive powder, but hey, what can you do). When we gave her the plate of cereal she looked at me and kept turning them in her fingers as if to say, "is this REALLY ok mom? It's kinda weird that you are actually giving me these instead of me having to hunt for and steal them off the floor." When she realized it was ok, she ate every single piece with careful fingers. Then this evening, she enjoyed her very first jar of baby food, and handled the spoon with amazing grace. Happy baby tonight.

Audrey's first jar of baby food, Sept 8, 2012

Such a quiet, simple moment, yet so profound! This is some of the very first food she has ever been able to eat in her life, and by far the largest quantity. One small jar of baby food, one giant leap for baby Audrey!

A dear friend commented on this note, and said:

"and handled the spoon with amazing grace" -- ♥ In the Episcopal Church, the Gospel appointed for today's Office was the second half of John's story about the man born blind healed by Jesus: "He answered and said, 'Whether he be a sinner or no, I know not: one thing I know: that, whereas I was blind, now I see." (John 9:25, KJV) You are so surrounded by love and hope!!! Thank you for keeping us posted.

I replied:

Haha, I was hoping someone would catch that. Thank you dear friend for your ever-inspiring encouragement. I find it amazing that when she was given a priesthood blessing in June, the elders did not pronounce full healing upon her but instead that her life and her story would influence many for good, and that God would reveal his purposes and blessings for her in time and in his own way. I think of the earlier part of that same chapter of John, verses 1-3....

 1 And as Jesus passed by, he saw a man which was blind from his birth.

 2 And his disciples asked him, saying, Master, who did sin, this man, or his parents, that he was born blind?

 3 Jesus answered, Neither hath this man sinned, nor his parents: but that the works of God should be made manifest in him.

 

I see it all of the time here (at Boston Children's Hospital), the works of God being made manifest through these sick kids. The kids who come here are all the "rock stars" from all over the country and the world. I mean, we were one of the worst troublemakers in Utah as far as kids with her condition goes, but out here we're made very aware of our blessings on a daily basis through the families we meet, many of them somewhat famous in their communities through fundraising for their child. The thing is, these kids may or may not get completely well in spite of all these state of the art surgeries and care, but those whose lives they touch are changed forever for the better.  You just can't spend time with any of these kids, without smiling and realizing what life is all about-- not about how long you live, but how well.  How deeply you love.  How purely you laugh.  How each simple gift matters every day.  Life slows down in the hospital, you just work on the simple things and almost everything else just sort of becomes less relevant.  Just last night I was talking with two friends about this, as we were encouraging one who was struggling while her son was in a much longer than expected surgery... even when it may not seem clear, God has a plan for these kids. All these families are walking through fire, and are being challenged and changed in incredible ways.   In spite of the massive challenges we are all facing, I can honestly say that the hospital is not a sad place.  It is a place of work and learning, of simplifying life down to its basic elements, of purifying by fire.  I feel very blessed to be here and getting to know these people, even more so because I am still able to communicate so freely with all of the friends and family who care about us elsewhere. As you said, surrounded by love and prayers on all sides, and we feel it.