An update and a prayer request

UPDATE

We are so sorry that our updates are few and far between these days. Here is the latest on Riley . . .

We just celebrated her FOURTH birthday in February and we are so happy to say that she has been doing really great. Growing, getting stronger, and for the most part staying healthy. Riley has started attending the staff daycare at our church on Monday mornings and absolutely loves it. I go with her to assist with her mobility & to manage her airway and it is the highlight of the week for both of us. I love watching her interact with the other children and just have fun being a little kid. She is a major social butterfly and talks all week long about her friends at church, counting down the days until the next Monday. Circle time is her favorite and she has taught all the other kids a good bit of sign language. We are beyond grateful for the accepting and loving environment the Celebration Church staff and their families have created.

Riley continues to show improvement in her speech and electro-stimulation swallow therapy and is now eating several bites of ice cream and other foods each week in our therapy sessions. We have also seen an improvement in her vocalization, she is now consistently able to make small low breathy sounds while wearing a special trach valve. Not enough to communicate verbally (YET!) but tremendous progress and we are so proud of her.

Riley has truly grown into a loving, funny, outgoing, and beautiful little girl. She is affectionate, caring, and has the most determination & strength of anyone I know. Her favorite things right now are daycare, nail polish, playing hair salon, going to the park and playing pretend.

PRAY REQUEST

While Riley's over all health has been doing great, due to the level of her over all muscle weakness she has developed severe scoliosis and her doctors told us this week that it has gotten to the point where we must intervene with spinal surgery. In November her doctor plans to do a major spinal surgery where they implant metal rods and use a series of hooks, wires, and screws to help straighten her spine. Because she is so young, repeat spinal surgeries will need to be done every 6 months to allow for growth until she has stopped growing, then they will do a spinal fusion surgery where they put small pieces of bone over the spine and the pieces grow together with the spinal bone, fusing it into proper position. To say this was difficult news is a massive understatement. These surgeries would not only mean huge amounts of time spent in the hospital, but also rigid spine (Riley will lose of the ability to bend or curve her spine), decreased mobility, back pain, risk of complications . . . the list goes on and on. If the past 4 years have taught us anything it is that we serve a loving, gracious, and BIG God. We know that every moment of her life has been loving planned and we know that he will carry us through all of these moments to come. Our prayer is that she would not have to endure all of this and we ask that you please join us in praying that her spine would straighten and strengthen and that she would not have to undergo these surgeries. We firmly believe that God is able to health Riley and do far more than we could ever imagine however we place our hope not in the out come of all of this but in Christ and Him alone. We learned early on that we can not begin to comprehend or understand His ways but we do know His power and His heart and that is where we place our trust and faith. We know that whatever happens His grace will help us to walk through it. Two scriptures that have been somewhat of an mantra for us this week are

1 Cor 2:5

We rest our faith not on the wisdom of men but on the power of God.

Lamentations 3:21-32

But there's one other thing I remember,
and remembering, I keep a grip on hope:God's loyal love couldn't have run out,
his merciful love couldn't have dried up.
They're created new every morning.
How great your faithfulness!
I'm sticking with God (I say it over and over).
He's all I've got left.God proves to be good to the man who passionately waits,
to the woman who diligently seeks.
It's a good thing to quietly hope,
quietly hope for help from God.
It's a good thing when you're young
to stick it out through the hard times.When life is heavy and hard to take,
go off by yourself. Enter the silence.
Bow in prayer. Don't ask questions:
Wait for hope to appear.
Don't run from trouble. Take it full-face.
The "worst" is never the worst.Why? Because the Master won't ever walk out and fail to return.

If he works severely, he also works tenderly.
His stockpiles of loyal love are immense.

Thank you all for you continued prayers for Riley. We would not be able to do any of this with out the love and support of so many amazing people in our lives. We love you guys and are so very thankful for you!

Love,

Becca